Eros and Illness

Eros and Illness

Louise Bourgeois. Cell: You Better Grow Up. 1993.

Detail. Installation. © The Easton Foundation.
Licensed by VAGA, New York, NY.
Eros
and
Illness

David B. Morris
Cambridge, Massachusetts
London, England
2017
Copyright © 2017 by the President and Fellows of Harvard College
All rights reserved
Printed in the United States of America
First printing
Library of Congress Cataloging-in-Publication Data
Names: Morris, David B., author.

Title: Eros and illness / David B. Morris.
Description: Cambridge, Massachusetts : Harvard University Press, 2017. |
Includes bibliographical references and index.
Identifiers: LCCN 2016038760 | ISBN 9780674659711 (cloth)
Subjects: LCSH: Sick—Psychology. | Medicine and psychology. |
Desire (Philosophy) | Personalized medicine.
Classification: LCC R726.5 .M666 2017 | DDC 610—dc23
LC record available at https://lccn.loc.gov/2016038760
For Ruth
Contents
Introduction What Is Eros? 1
PA RT ON E The Contraries 19
Chapter 1 The Ambush: An Erotics of Illness 21
Chapter 2 Unforgetting Asklepios: Medical Eros and Its Lineage 49
Chapter 3 Not-Knowing: Medicine in the Dark 79
PA RT T WO The Stories 105

Chapter 4 Varieties of Erotic Experience: Five Illness Narratives 107
Chapter 5 Eros Modigliani: Assenting to Life 135
Chapter 6 The Infinite Faces of Pain: Eros and Ethics 162
PA RT T H R E E The Dilemmas 191

Chapter 7 Black Swan Syndrome: Probable Improbabilities 193
Chapter 8 Light as Environment: How Not to Love Nature 220
Chapter 9 The Spark of Life: Appearances / Disappearances 249
Conclusion
Altered States 279
Notes 303
Acknowledgments 335
Index 337
Eros and Illness
Introduction
What Is Eros?
Eros is everywhere. It is what binds.
John Updike, quoted in New York Times (1998)
E ros is central not only to love, its traditional domain, but also to
illness. This crucial relationship, however, goes mostly unrecog-
nized and unaddressed, with incalculable harm to patients, to doctors, and
to loved ones. The importance of eros in illness proved an unavoidable,
unwelcome fact in my own experience as I gradually came to recognize
that I was living in a condition of conflict—almost like a civilian in a war
zone—caught between two mighty forces that, lacking an established vo-
cabulary, I came to call medical logos and medical eros. The conflict
turned weirder than any ordinary combat because, although medical
logos is highly visible and almost inescapable, medical eros remains
largely unseen, living in the shadows, as if its distinctive superpowers in-
cluded a cloak of invisibility. The conflict and the terms that I invented
in order to describe it are both unfamiliar enough to require a brief, pre-
liminary account.
Eros is the ancient Greek god of desire. Desire, under the rule of Eros,
usually brushes directly or indirectly against sexual passion, so some
classical authorities describe Eros as the god of love or as the god of
1
2 I ntr o ducti o n
fertility, a powerful figure depicted on a fifth-century BCE Greek vase as

a dark-haired muscular young archer, with an athlete’s washboard ab-
domen and a wingspan massive enough to suggest Andean condors. In
later Roman art, as if forgetting his former godlike powers, Eros mostly
dwindles into the mischievous, wanton, and sometimes downright cruel
boy Cupid: ancestor of the chubby putto with vestigial wings who shows
up on Valentine’s Day bearing a box of chocolates and a heart-shaped
card full of amorous pieties. Eros includes all these figures and more, far
more, from Cleopatra to The Rocky Horror Picture Show and onward into
the gender-questioning future, as desire circulates, pulses, and overflows
beyond images and words, beyond thought and music, beyond flirtation,
romantic dalliance, one-night stands, or shocking lustful abandon.
Why should we bother with a defunct classical god? Even if we think
of Eros merely as a figure who represents love—and no one seriously dis-
putes the importance or complexities of love—Eros is much more than
an ancient fictitious deity. As a classical god, Eros gives visible shape to
the lowercase internal psychic force (eros) that has forged both a complex
social history and far-reaching connections with other human forces, from
lust and compassion to violence. The classical god Eros, in this sense,
bears some resemblance to fire. Fire in the ancient world has its desig-
nated gods—Hephaestus in Greece, Vulcan in Rome—but fire can assume
many different shapes, from the blacksmith’s civilizing flame (associated
with Hephaestus) to the volcanic eruptions that derive their name from
Vulcan. We no longer believe in Vulcan or Hephaestus, but it would be a
serious miscalculation to doubt the reality of fire. Like fire, eros can do
great harm—burn, injure, devastate—but it also holds a primal power for
good, much as the mythic flame that Prometheus stole from Mount
Olympus and delivered to humankind could warn sailors with a coastal
light or warm a cold hearth. Reconfigured as an internal h uman force,
eros t oday would not resemble a classical archer but might instead assume
the charisma and plasticity of contemporary shape-shifters from androg-
ynous rock stars to the wizarding world of J. K. Rowling.
Eros in its continual changes and ceaseless circulation, especially in
what John Updike rightly calls its power to bind, once held absolute pre-
eminence as the original cosmic creative force. The early Greek poet He-
siod (ca. 800 BCE) depicts Eros as the oldest of the gods, who brings
W hat I s E r o s ? 3
about the fruitful union of earth (Gaia) and sky (Uranus). Several centu-
ries later Eros—still celebrated as a god, or at least godlike in its power—
remains so import ant as to constitute the single topic of discussion in
Plato’s Symposium. Socrates, a foundational figure in Western philosophy
and a key participant in the Platonic dramatic dialogue on love, claims
that eros is the only subject he knows anything about. His contribution,
however, is to retell a story or myth once told to him by an obscure
prophetess. This secondhand tale—about a ladder that leads from the
love of beautiful bodies to the love of ideal form—carries an implicit cau-
tion from the master ironist: that whatever we say about eros (even recon-
figured as a modern, lowercase, internal power) will fall short of absolute
truth and occupy only the secondary, indirect status of a myth, narrative,
or symbolic approximation.
Eros, in short, cannot be reduced to a concept. It is not accessible
through propositions or argument. It is rather a primal force that, in its
typical motion, sweeps us away, depriving us of reason, logic, and even
coherent speech. As it turns out in Plato’s Symposium, no one gets the last
word on eros, where the one truly inexhaustible erotic pleasure seems to
be talking about love. The philosophical talk, r eally a competitive form
of oratorical display, occurs on a high plane of discourse, while erotic de-
sire (on the lower plane of libido) circulates invisibly among the talkers:
Socrates, we learn, wants to seduce Agathon, Agathon is already the boy-
friend of Pausanias, and (toward the inconclusive conclusion of the
speeches) Alcibiades breaks in, very drunk and uninvited, to describe at
length his sexual longing for Socrates. Plato depicts a semicomic scene,
then, in which reason, logic, rhetoric, and philosophy pay extended
homage to Eros as a god, while eros as a h uman power (in conjunction,
as so often, with wine) sweeps away both rationality and consciousness
as all the participants finally slip off into inebriated slumber, leaving
Socrates—the ironic philosophical storyteller—to walk away, alone, into
the dawn.
Socrates offers a distinguished pedigree for the claim that eros, even
when configured as a secular human force, cannot be adequately repre-
sented in concepts, arguments, or definitions. Eros embraces desire in all
its colorful and passionate varieties up to and including delirium. Its in-
herent excess or surplus—what reason cannot explain or contain—puts
4 I ntr o ducti o n
it in conflict with the widely shared belief (a founding principle of natural

philosophy or early science) that the implicit duty of words is to match
up with clear and distinct ideas. Eros is more amenable to description
than to definition, and its descriptive history includes the ancient recog-
nition that the erotic signified a “way of being”: for Homer, a way of
being that emphasized participation in a sacred dimension of life over-
seen by the goddess Aphrodite.1
Today the view of eros as a primal or sacred force finds at best minority
expression among scattered writers, scholars, post-Freudians, and eco-
spiritualists. Ceaseless news of celebrity hookups, however, along with
online dating sites, porn flicks, and sexualized ads suggest that eros, in
shape-shifting mode, secretly dominates popular culture.2 Popular cul-
ture no doubt constitutes a distinctive way of being, at least for individ-
uals fully immersed within it, and eros through sheer omnipresence might
stake a viable claim as the patron saint of late consumer capitalism. The
circulation of capital, as we endlessly consume new films, new music, and
all manner of shiny new digital objects, is inseparable from the circula-
tion of erotic impulses and from ad-driven or peer-driven manipulations
of desire.
The absence of a consensus-sanctioned definition, if regrettable, luckily
does not constitute a fatal flaw, but it creates an implicit obligation to
sketch out, early on, the rough boundaries of my usage (Figure 0.1).
Eros, as the diagram suggests, is not a fully knowable quantity—
something we can pin down, define, measure, and reconstitute as an ob-
ject of knowledge; it inhabits shifting relationships, spontaneous actions,
and hidden states that desire (often without our knowledge or even against
our better judgment) draws us into. Eros and desire are finally far less about
knowledge than about altered states of being, unruly impulses, hidden bio-
logical and psychic forces, charismatic bodies, everyday selves at risk, and a
vertigo of lost control. It is almost inseparable from the exhilarating, dan-
gerous feel of letting go.
My diagrammatic figure of proliferating erotic relations includes a
deliberate measure of self-parody in its stable geometric patterns used to
clarify a shifting, uncontainable force. A better diagram would be three-
dimensional, spinning nonstop like a pinwheel, and embedded with a kill
switch to self-destruct when the formula approaches hazardous clarity. A
Love
Violence EROS Empathy
Lust
Figure 0.1. Logos in (Doomed) Quest to Make Sense of Eros.

David B. Morris.
simplified bird’s-eye view, like weather maps, cannot avoid error; however,
it remains useful h ere in representing eros as a libidinal energy that suf-
fuses a wide variety of disparate states from empathy to lust. The diagram
also recognizes that eros always implies a potential to make contact with
energies that circulate entirely outside eros. Mindless brutality, for ex-
ample, is as unerotic as a butcher shop. Can we fully account for the his-
tory of war, human sacrifice, ritualized cruelty, and rape, however, without
positing an erotic dimension concealed somewhere within even extreme
violence? In their violent sexuality, the Marquis de Sade’s novels and
the high-opera Liebestod offer a glimpse into the dark ranges of eros: Tosca,
the innocent object of Baron Scarpia’s evil lust, hurling herself over the
parapet. Such troubling glimpses suggest again that reason will never
fully comprehend eros. Eros is at home with chaos and the anarchic. It
embraces the in-definite, the a-logical, the in-comprehensible. By defini-
tion, it resists definition. My overly geometrical, clockface diagram at least
allows for fifty-six additional un-named shades of erotic practice, not all of
them pleasant. One key assertion about eros, however, seems to me as reli-
able as bedrock. Eros, whatever it is, is not identical with sexual activity.
6 I ntr o ducti o n
Sexuality, sexual activity, and lust are all central to eros, of course, but
when it comes to human beings, these basic forms of desire often lead to
and become entangled with other forms. “Sexual reproductive activity is
common to sexual animals and men,” writes French polymath Georges
Bataille in L’érotisme (1957), “but only men appear to have turned their
sexual activity into erotic activity.”3 Bataille, still the modern Continental
thinker most at home with eros, does not shy away from exploring dark,
perverse, or grotesque episodes when erotic pleasure, sexual passion, and
carnal delirium make contact with violence, pain, torture, and death.4 Its
darkest excesses confirm for Bataille that eros cannot be confined to sex-
uality. Eros certainly shares common ground with sexual activity, but
human erotic life extends to distant and indirect psychological inflections
of desire played out within the arena of experience that Bataille calls “the
inner life” (la vie intérieure). A sonnet sequence can prove erotic, or e-mail
innuendos, or a certain smile, the sway of bodies, a hint of perfume, or
even (under the right circumstances) a lullaby. The inner life matters for
eros as much as do erogenous zones, while the free play of mind can pro-
vide a self-sufficient erotic pleasure. Sexual activity is a trait widely shared
within the animal kingdom. “Human eroticism,” as Bataille nails down
the crucial distinction, “differs from animal sexuality precisely in this,
that it calls inner life into play.”5
Inner life is what makes eros both irresistible and dangerous. Its
danger and its dark side were evident long before Bataille collected and
celebrated examples of what he called the tears of eros. Cupid’s arrows
can turn lethal as lovers’ quarrels slide recklessly toward violence. Every
neighborhood seems to h ouse its convicted sex offenders. Eros is not only
not identical with love but also regularly shatters settled romantic rela-
tions with spontaneous flings and disastrous betrayals. It persists as heart-
break in love’s absence. From classical lyric to modern tragedy, eros
disrupts and torments the inner life that it calls into play. It rips apart
marriages and plunges alliances into disarray, justifying the frequent
references to love as an addiction, torment, plague, and disease. Anne
Carson, classicist, philosopher, and gifted contemporary writer, explains
that ancient Greek lyric poets simply assumed as a matter of self-evident
fact that eros is “hostile in intention and detrimental in effect.” “Along-
side melting,” she remarks, adding up the classical epithets attributed to
eros, “we might cite metaphors of piercing, crushing, bridling, roasting,

stinging, biting, grating, cropping, poisoning, singeing, and grinding to
a powder.”6 Eros regularly extends the range of romantic afflictions
from mild obsession to disease. Lovesickness in the Middle Ages was a
standard medical diagnosis: a famous English bishop supposedly died
from it.7
“The whole business of eroticism,” Bataille asserts, “is to destroy the
self-contained character of the participators as they are in their normal
lives.”8 Normal lives, as Bataille believed, may well benefit from the de-
struction of spirit-crushing bourgeois routines and from the demolition
of capitalist self-denials. Illness too destroys (or threatens to destroy) the
patterns of our normal lives, but the complex underground associations
that link illness with eros and desire—including possible benefits that
might arise from the ashes—simply did not register during the prolonged
period when medical eros and medical logos trapped me within their
unseen, incessant crossfire in my role as sudden caregiver for my wife,
Ruth.
Here is how I came to see the conflict. Medical eros, which I would
describe—too simply, but for practical purposes—as the operations of de-
sire within the context of health and illness, is engaged in a massive and
mostly concealed struggle with the reigning power in Western health
care, usually called biomedicine. Biomedicine, u nder the alias medical
logos, views illness as calling for scientific knowledge, for evidence-
based treatments, and for public policies governed by statistical, cost-
benefit analysis. It encloses the patient within concentric systems of logos
or reason that affect every aspect of medical care, from electronic records
and computerized diagnoses to research agendas, training modules,
state-of-the-art hospitals, and automated reimbursement programs.
Every procedure must have its designated billing code.
Despite its ancient roots, biomedicine gathered its modern strength and
scope in the early 1870s with the advent of new science-based medical
schools. Physician and medical historian Kenneth M. Ludmerer describes
how the new university-based agenda extended medical study to three
years, added new scientific subjects to the curriculum, required labora-
tory work of each student, and added full-time medical scientists to the
faculty. The new Johns Hopkins Medical School (opened in 1893) became
8 I ntr o ducti o n
the model by which other medical schools were measured.9 Soon there-
after the influential Flexner Report (1910), financed by the Carnegie Foun-
dation, sealed the f uture of American medicine with its recommendation
(based on the Hopkins model) that all medical schools should engage
medical faculty in research and train physicians to practice in a scientific
manner.10 With its electron microscopes, genetic therapies, stem-cell
research, and molecular nanotechnology, to name only a few modern
advances, biomedicine ranks among the most impressive by-products of
Enlightenment reason: a lifesaving enterprise that extends the break-
through nineteenth-century clinical gaze not only far within the opaque
surface of the body but also, as medical logos probes our DNA and peers
into the remotest molecular units of our individual heredity, far inside
the inside of the body.
Medical logos in its Flexnerized genealogy gives biomedicine the knowl-
edge and prestige that allow it to rule supreme in its standard institu-
tional settings from hospitals, laboratories, and health-care systems to
grant agencies, insurance programs, clinics, and doctors’ offices. Today
it augments its power through the support of such equally massive, over-
lapping, inescapable systems as the worldwide pharmaceutical industry,
philanthropic foundations, and multilayered government-sponsored agen-
cies, from first-responder teams to the World Health Organization. The
genius of biomedicine, its detractors might say, lies in the prodigious
science-based power that allows it to defang and absorb—often under the
rubric of experimental trials—all but its most rigidly antagonistic oppo-
nents. Medical logos, no matter how alien the term, is familiar to almost
everyone who lives under the health-care umbrella of modern Western
democracies. By contrast, medical eros often passes wholly unrecognized.
It is a daunting challenge to provide a cogent description of a power so
unfamiliar, elusive, and hard to recognize, but it is an important challenge
to take on, even if the highest possible goal is likely no more than modest
clarification.
Medical eros, in its focus on the large but limited arena of human health
and illness, encompasses all the various emotional, psychological, and
personal implications of desire. Medicine t oday, of course, carries out its
business (and medicine is big business) in a space remote from erotic ex-
perience. But not entirely. Surgeons regularly get asked how soon a fter
surgery it’s safe to resume sex, and sexually transmitted diseases get their
own medical specialty, but such exceptions hardly constitute an institu-
tional embrace of medical eros. The professional space of medicine bears
very little resemblance to its eros-r ich simulation in televised hospital
dramas and soap operas, which are indistinguishable (except for a few
tense code blues) from other sexualized telev ision fantasylands such as
coffee houses and police departments. Off camera, patients and doctors
understand illness as calling for scientific rationality, evidence-based
decisions, antiseptic sterility, and cool digital technologies so that illness
seems not just remote from eros but actually opposed to the erotic.11 Serious
illness, of course, can drain p eople of vigor, including erotic energies; even
common colds can leave us limp and cranky, from the German krank
(ill)—or, in the euphemism for no-sex-tonight, indisposed. At a polar re-
move from the common cold, dying patients may drift off in a near-
comatose state where eros appears only as the negative space opened up
as life slips away: what is missing, not present, gone. Such limit-case
instances, however, cannot undo the bond between eros and illness.
Illness, despite the prominence of medical reason, often also unfolds in an
unseen, unlikely erotic dimension. This erotic dimension, where inner
life is always in play, proves as basic to illness as drugs, surgeries, and
doctors. It is also where illness makes direct contact with the state of
not-k nowing.
Medical eros operates in a realm given over to uncertainty, fluidity, and
profound lack of knowledge, and its intimate relation with not-k nowing
makes medical eros both resistant to a succinct definition and also in con-
tinual need of piecemeal clarifications. The best procedure, in my view,
is a slow, open-ended accumulation of specific instances. The cultural
history of eros is already far more complicated than a single concept can
encompass, and theorists abound. A thousand years after Plato’s Sympo-
sium depicted Eros as a divine, cosmic ruling force, mediating between
gods and humankind, Freud came to regard eros as the life force engaged
in perpetual struggle with thanatos, or the death wish. Jung, rarely in sync
with Freud, sees eros as a feminine principle opposed to the masculine
and rational force of logos, while Lacan, in his creative revisions of Freud,
writes about desire as desire for the desire of the other, where the other
may be another person or an almost impersonal nonconscious force such
10 I ntr o ducti o n
as language or ideology. Too simply: we desire expensive cars not merely

for transportation but, in part, because we desire whatever (we imagine)
might increase our desirability, even if the desire of the other that we de-
sire is our own displaced or unacknowledged narcissistic self-love.
I prefer thinkers such as Georges Bataille and Ann Carson to theorists
who construct elaborate systems, and my preference is not to ally eros with
one part icu lar thinker but rather to layer up a thick collage of specific
instances and insights, which avoids confining the erotic to a system or
restricting its range to sexual passion and to romantic love. Illness invokes
multiple varieties of desire. The urgent task, which I undertake here in
an exploratory spirit suitable to a realm where not-k nowing far outstrips
knowledge, is to recognize and begin to address the various, multidimen-
sional roles of eros in illness.
An example here might add welcome concreteness. “The Use of Force”
(1938)—a classic short story by poet and pediatrician William Carlos
Williams—so powerfully describes an encounter with medical eros that
some readers view it as a default warning against contaminating medi-
cine with erotic impulses. A routine digital throat examination goes
terribly wrong as an ordinary h ouse call careens out of control. The over-
worked doctor and his patient, a young girl who fiercely resists his exam,
lock w ills in a struggle that slides, ominously, toward violence. The doctor
confesses to an impassioned, irrational drive that reflects how eros, as
Bataille claimed, can destroy the self-containment of the participants as
they are in their normal lives. Nothing remains normal. “I could have
torn the child apart in my own fury and enjoyed it,” the doctor admits. “It
was a pleasure to attack her. My face was burning with it.” 12
Interpretations of Williams’s story often focus on ethics, rightly calling
attention to its undercurrent of sublimated rape. Rape is about power,
however, and sexual power does not describe the other forces also at
stake—specifically, contagious erotic impulses that carry a competent
physician far beyond the bounds of medical logos. “But the worst of it was
that I too had got beyond reason,” says the doctor. The girl’s passion, in
its fierceness, contains a truth that rings even truer as it exposes a double
dose of adult falsity. “I smiled in my best professional manner,” says the
doctor as he begins his exam—perhaps following the manual written by
medical logos. The girl’s parents compound his falseness with abjection.
“Such a nice man,” coos the mother. The doctor, however, soon passes
beyond banalities. Force begets force, as the story insists, and the girl now
is frantic. Her ferocious struggle elevates her in the doctor’s eyes as the
opposite of false or abject, and her passionate authenticity is what seems
to draw him, not primarily her attractiveness (which he notes) or a sexu-
alized male drive for power. Their struggle becomes an impure, impas-
sioned contest of conflicting values—her childlike authenticity against his
adult medical responsibility—and ultimately the physical strength of the
doctor prevails “in a final unreasoning assault.” Medical logos has won,
but not by virtue of reason. Eros, writes Anne Carson as she describes
the thrilling, dangerous, authentic, fiery sense of aliveness that it evokes
in her, is like an electrification.13
An interpretation less focused on ethics or on cautionary lessons and
more attentive to the electrifications of eros need not harden the doctor
into an icon of professional misconduct. His “fury” represents unprofes-
sional conduct, no doubt, but he also ultimately establishes a diagnosis
of diphtheria—a highly contagious, fatal disease—and in obtaining the
diagnosis he protects both the girl and the community. His conduct is cul-
pable, then, but he merits some sympathy not only for a life-saving diag-
nosis but also for his sudden amoral f ree fall into erotic not-knowing. Eros
takes vertigo as a defining state, and it always implies a tendency to move
beyond benign release toward a loss of self-control so radical that it
threatens even the self. This terrifying, exhilarating breakthrough opens
onto terrain suitable for poets but not for pediatricians. (Williams as poet
celebrated the amoral lure of the senses and even addressed a poem—with
the command-like title “Smell!”—to his nose.) In his erotic free fall, how-
ever, Williams’s doctor at least meets the girl’s truth-in-passion with his
own passionate truth, very h uman if unprofessional, and powerful enough
in its truth to demystify the false and sanitized portraits of saintly rural
doctors currently circulating in popular magazines and irrelevant to the
normal life of an overworked, exhausted urban physician on a three-dollar
house call in a poor neighborhood where a child whom he suspects of
carrying the diphtheria bacterium refuses to open her mouth for a digital
throat examination. “I have seen at least two children lying dead in bed
of neglect in such cases,” says the doctor as he exchanges a splintered
wooden tongue depressor for a smooth-handled metal spoon. The stakes
ere high. According to figures from the Centers for Disease Control and
w
Prevention, the United States reported 100,000 to 200,000 cases of diph-
theria during the 1920s, with 13,000 to 15,000 deaths annually, largely
among children.14
The stakes are equally high today when it comes to medical interven-
tions and decisions. As the son of a physician, b rother of a psychiatrist,
husband of a medical librarian, and friend to talented, generous physicians
whom I would trust with my life, I am not about to bash individual doc-
tors. Medical logos, however, at least in the United States where its power
approaches absolute, has a lot to answer for. The Commonwealth Fund
is a private U.S. foundation devoted to improving health care, and it is-
sues regular reports that compare different national systems across
various measures. “The United States health care system is the most
expensive in the world,” its most recent report observes, “but compara-
tive analyses consistently show the U.S. underperforms relative to other
countries on most dimensions of performance.” Compared with Aus-
tralia, Canada, France, Germany, the Netherlands, New Zealand, Norway,
Sweden, Switzerland, and the United Kingdom, as the Commonwealth
Fund report concludes, the United States “ranks last.” 15
Biomedicine in the United States produces not only the most expen-
sive (and, arguably, the least efficient) health-care system in the developed
world but also a system marked by immense and proliferating complica-
tion. It is a system in which, according to recent studies, U.S. doctors pre-
scribe over 14,000 different drugs; a system in which 82 percent of
American adults take at least one medication and 29 percent of adults
take over four; a system in which the United States spends $3.5 billion
annually on adverse drug events, which is a bureaucratic euphemism
for illnesses and deaths caused by drugs. In addition, about 1.5 million
Americans are injured each year because of preventable errors in medi
cation. Nosocomial infections (in plain English, infections acquired from
the environment or staff of a health-care facility) kill some 99,000 Amer-
icans each year—twice the number of Americans killed in traffic acci-
dents. Medical logos cannot rule out or control e very harm. In the United
States, however, some 225,000 deaths annually are attributed to iatrogenic
causes. (The Greek noun iatros means physician.) Its own statistical tools
thus provide solid evidence that something is amiss in the evidence-based
world of biomedicine. Statistical studies are always open to debate, but it

is reason for concern when a 2016 study of medical error in the United
States finds that doctors are the third-leading cause of death.16
Medical eros implies a sideways critique of biomedicine as focused too
exclusively on reason, science, evidence, statistics, and data, but medical
eros too includes its dangers. Eros, in its most worrisome implications for
good conduct and norm-keeping, appears at times both unavoidable and
uncontrollable. Like fate or the uncanny return of the repressed, eros finds
us and grips us even as we seek to elude or contain it. It casts us back into
a primal space that we cannot avoid because we carry it within us: it is
part of our psychic apparatus. In Williams’s story, eros as sideways cri-
tique exposes not only a professional artifice built into the medical en-
counter but also wider and less visible medical applications of force. The
cordon sanitaire of material barriers and of forced confinement once de-
signed to halt contagious disease now extends to various invisible appli-
cations of state biopower that, in the name of public health or professional
decorum, tend to isolate patients and to rope off eros. Doctors, however,
cannot exclude eros from their lives any more than priests, teachers, or
politicians can, and sex scandals seem to tarnish e very profession. (The
term doctors, I should add, will sometimes h ere refer to MDs and other
wise serve as an all-purpose reference to health professionals.) If no pro-
fessional discipline seems able to quarantine eros, perhaps the greater
harm lies less in eros (since eros includes benefits, too) than in rigid prac-
tices, policies, and ideologies that seek to deny or exclude eros, as if to
expunge it from the medical encounter, which is like seeking to expunge
your own pancreas. Far better, when lives are at stake, to recognize eros
and to deal with it—the good and the ill—mindfully.
It w
ill be easier to deal with the erotics of illness if we recognize one
key point: medical eros and medical logos are not binary opposites (fixed
adversaries or polar opposites) but rather contraries. The difference is cru-
cial. As contraries, medical eros and medical logos share many areas of
harmonious overlap, alignment, and collaboration.
The key distinction between contraries and binary opposites merits
clarification. Binary opposites follow a closed artificial logic wherein a
switch, say, is either on or off. Binaries—zero or one—make perfect sense
in computer codes; a switch cannot be both off and on simultaneously.
Contraries, in contrast, do not exist within a closed, logical, artificial,

either / or relation where they designate an unchanging and mutually
exclusive opposition. Rather, they are fluid, changeable elements within
a heterogeneous and often open-ended field where they may enter into new
and surprising alliances. Binaries never overcome their fixed polar op-
position, that is, but contraries can join forces and even produce unex-
pected unities. For example, biologist Donna Haraway rejects the usual
binary opposition between nature and culture, arguing that humans and
animals inhabit a heterogeneous realm of “naturecultures”; anthropolo-
gist Bruno Latour agrees, proposing the hyphenated concept “nature-
cultures.”17 The ancient concept of concordia discors offers a similar vision
in which cosmic order emerges only from ceaseless conflict among the
four separate elements of classical physics: earth, air, fire, and water. Music
too, for Renaissance theorists, offered an emblem of the harmony emerging
from the contrary relations among differing instruments, rhythms, melo-
dies, and sounds. Not surprisingly, they associated this creative, musical
concordia discors with the classical god Eros.
Medical logos and medical eros as contraries will likely remain to some
degree in opposition and potentially antagonistic—if only because the dif-
ference in social power between them is so vast. Medical logos rules the
health-care system; medical eros slips into the bedside shadows. Indi-
vidual patients, however, may decide to construct their own personal
concordia discors, adjusting the proportionate power of logos and of eros
as their particular illness changes or as their personal goals and purposes
change. For patients and families facing serious illness, such individual
adjustments are far too important to dismiss simply because they fall short
of a perfect or collective system-wide solution to disease. What m atters
most here is to clarify the conflicts between medical logos and medical
eros as the necessary prelude to any personal or systemic remedies.
Contraries certainly do not guarantee harmony. Unredeemed discord
pretty well sums up my experience. Unaware, with no safe h ouse or ele-
vation from which to gain an understanding, I was simply caught between
two mighty forces, clueless, swept up in the fog of a bulletless, surreal civil
war. Medical eros in its limits and in its possibilities thus raised urgent
questions for me in my new role as caregiver navigating the day-to-day
encounters with doctors, insurance companies, l awyers, banks, hospitals,
assisted-living facilities, and faceless bureaucracies, while of course also

trying to keep h ouse, job, and marriage from caving in around us. It be-
came an occasion for guilt as I recognized how deft I had become, in
public, at covering up the social slips and verbal miscues that Ruth’s ill-
ness entailed. Stories that she launched into with friends would often get
lost in midcourse, and (with an artificial smile) I would catch the flap-
ping, loose end, weaving it neatly into a finished tale. Were my spousal
cover-ups an act of love or love’s betrayal? My frustrations grew daily as I
tried to manage my slippery emotions, a full teaching schedule, the med-
ical establishment, and a shifting patchwork of daytime helpers. I c ouldn’t
get angry at everyone, but sometimes I wanted to. Isolation, suppressed
anger, and continual irritation ultimately led me to question the larger,
hidden conflict that I felt trapped in. I ultimately discovered that the un-
seen conflict between medical logos and medical eros reached far beyond
my own private distress. The fatigue and confusion I felt w ere not mine
alone. Illness often transports patients and family and caregivers into an
unreasonable, uncanny, inverse realm where knowledge is far less common
than not-knowing. It is a desire-haunted space of the inner life (given over
equally to terrors, guilt, and fantasies) that Susan Sontag, in an accurate
metaphor, calls “the night-side of life.” 18
We urgently need to explore the place of desire in illness b ecause ill-
ness is no longer simply the nightside of life: a quasi-natural feature of the
human condition. Most people fall ill, but illness now falls u nder the su-
pervision of biomedicine, and biomedicine is a gigantic state-r un, state-
regulated, and state-supported system dominated, as we w ill see, by the
new molecular gaze. The molecular gaze extends throughout the interna-
tional pharmaceutical industry, which provides the first line of biomed-
ical treatment, and it also governs the standards that apply both within
huge government agencies (such as the U.S. Federal Drug Administra-
tion or Veterans Health Administration). This new biomedical giant with
its cell-piercing panopticon eyesight certainly brings unprecedented
advances, much as the new “personalized medicine” employs our distinc-
tive genet ic data to guide treatment and to forestall disease. The bio-
medical, molecular gaze continues to produce astonishing discoveries.
Researchers announced in 2015, for example, that the brain is connected
to the immune system by vessels previously unknown. “I r eally did not
believe there were structures in the body that we were not aware of,” said
neuroscientist Jonathan Kipnis, whose laboratory made the breakthrough
discovery with its profound implications for immunotherapy treatments.
“I thought the body was mapped.” 19
But what does this indispensable, deep-seeing biomedical giant miss?
What does its astonishing molecular vision neglect, overlook, or disregard
as wholly irrelevant? Simply put: biomedicine, both in clinical practice
and in bench science, ignores the role of desire in illness. Desire, legiti-
mized as medical eros, offers a power that can help make the passage
through illness far less onerous, a power that offers a more truly “person-
alized” medicine than genetic profiles alone can promise. An explora-
tion of desire in illness depends on looking beyond (but not ignoring) ran-
domized double-blind experiments; it means looking beyond (but not
ignoring) telephone surveys and check-the-box questionnaires. It means
especially focusing on such nonstandard biomedical data as memoirs, es-
says, paintings, performances, experiences, and images—from the nudes
of Modigliani to my own stumbling efforts as caregiver—which in their
own way offer firsthand testaments to the place of desire in illness. They,
too, count as evidence. The goal is to cross restrictive boundaries and to
open perspectives that can alter what happens when you or someone you
love enters into the nightside of life and falls u nder supervision of the mo-
lecular gaze.
An e-mail (a fragmentary illness narrative) just arrived from an old
friend who has recently faced sudden, unexpected surgery for breast
cancer. “I w on’t know for a while what treatment, if any, I’ll need next,” she
writes from within the immense vistas of not-k nowing: “Another period
of waiting to find out. Well, it’s a good lesson, to live with the unknown,
because actually the next moment is always an unknown, we just like to
think we have it under control.”20 I couldn’t match her wisdom and her
courage; in my role as caregiver, mostly I just muddled on. I discovered,
however, that medical eros tends to pick up and desire tends to inten-
sify exactly where the reasonableness of medical logos leaves off, leaves us
unattended, in need of hope, companionship, consolation, affection,
wisdom, and healing. My aim here, in sorting out my confusions, is not
to undertake an exhaustive or even orderly analysis but rather to begin a
wide-ranging exploration among the fertile possibilities that an under-
standing of medical eros opens up: possibilities for scholarly study, for
professional development, and, most import ant, for individual change,
healing, and solace. Eros and illness together—in their endless, surprising,
personal permutations—touch us all: t here is no refuge, no asylum, no
escape.
Medical eros is far less a concept than a lens that offers an inside view
of illness as a lived experience. It is experience so diverse that it can range
from a doomed sense of fatal entrapment to a liberating burst of life-
transforming gratitude and insight. My excursions through literature,
philosophy, art, film, memoir, and the environment—as discourses that
mediate the immediacy of inner life and outer life—constitute merely an
exploratory sample. It is an exploration in which illness appears less as a
diagnostic category than as a lived experience embracing not only body,
mind, and spirit but also relevant biological and cultural contexts,
including the all-pervasive culture of medicine. On any such headfirst
exploratory journey, of course, it’s best to expect a fairly wild r ide.
We need medical eros, by whatever name, b ecause serious illness so
often arrives like a sudden blow, plunging us into a twilight of not-knowing
where everyt hing looks strange, where nothing feels under control, in-
cluding our own bodies with their sudden odd aches and ominous spasms,
or thoughts as feverish as dreams, reminding us that, despite all our
science and statistics and medical knowledge, we have no idea, not a clue,
what may be circling overhead like a drone or hidden around the next
corner, waiting . . .
Part One
The Contraries
Chapter One
The Ambush: An Erotics of Illness

“The right art,” cried the Master, “is purposeless, aimless! The more
obstinately you try to learn how to shoot the arrow for the sake of hit-
ting the goal, the less you w ill succeed. . . . W hat stands in your way
is that you have a much too willful w ill. You think that what you do
not do yourself does not happen.”
Eugen Herrigel, Zen in the Art of Archery (1953)
E verything changed with the blessing of the candles. Something

awful was g oing on. After months of untethered suspicion, as dishes
turned up in random cabinets and a mislaid exercise rope triggered melt-
down rages, I couldn’t any longer take refuge in excuses. The secular
Jewish family I married into blessed the candles only on Passover, and
the traditional prayer always fell to Ruth. With the grace of a natural-born
dancer fully blossomed into her fifties, flanked by family and by our closest
friends, she stretched her hands above the lighted candles—eyes closed,
palms down, elbows raised—ready to intone the customary Hebrew
words, softy, slowly, as she had done since childhood. Barukh Ata Adonai,
Eloheinu Melekh Ha-olam . . . Ruth’s almost trancelike state as she re-
enters this ritual space visibly softens the edge that served her well as a
mid-level administrator and corporate crisis manager, as if the ancient
21
22 T he C o ntraries
blessing draws her into a deeper order of time and being. A fter twenty-
five Sedarim together, I know the sounds and rhythms (in a language I
don’t understand) almost as well as the hymns from my childhood. I al-
ways feel a reassuring warmth as Ruth sings the blessing. It seems to af-
firm a preverbal bond that connects us in a closeness that friends marvel
at, much as touches, sighs, and glances count for more, among lovers, than
words and meanings.
On this night, now forever different from all other nights, with Ruth’s
hands floating palms down above the white tapers, her face serene and
her skin glowing in the candlelight, I turn stone cold as she stumbles over
the opening phrases. Impossible! She can’t remember? I’m repeating the
familiar Hebrew syllables in my head as if to help her, to jog her memory.
But this, I sense, is no normal forgetting. I’ve read enough popular neu-
roscience to suspect that you don’t ordinarily forget patterns so deep, but
I still d
on’t understand what’s going on. All at once I’m knee-deep in the
not-k nown. There must be severe damage, a powerf ul synaptic disorder.
Ruth’s halting and peculiarly unmelodic contralto accent only adds to
my well-mannered, unnoticed dinner-table panic. I have no idea about the
hidden nightmare ahead.
Ruth—i mpossible to intimidate under any circumstances—does not
appear to feel embarrassed or upset by her sudden memory lapse. I feel
confused and blindsided, as if masked, black-clad troops are sliding down
ropes to land on our roof in a surprise assault.
Losing Control
I want to explore—beginning with that awful night and with the journey
it initiated—what, from a medical point of view, is an unreasonable and
entirely counterintuitive position: that doctors and patients might do well
to consider and even embrace the role of eros. As the ancient Greek god
of sexuality and desire, Eros would seem to have no place in contemporary
evidence-based medicine, where rationality, employed like a scalpel in the
service of health care, governs the entire modern medical enterprise, from
laboratory science and randomized, double-blind clinical trials to the
commonsense expectation of patient compliance. Medicine tends to flee
the erotic, with good reason. Eros, as an ancient representative of passion
T he A mbush : A n E r o tics o f I llness 23
and irrational desire, is the sworn enemy of instrumental reason and thus
an unwelcome figure at the bedside. Noncompliant is the pejorative, tech-
nical term for patients who elude rational control. This preference for
rationality and control helps explain why medicine, when it d oesn’t openly
reject the erotic as unruly, which it is, simply ignores it as irrelevant. In
its affirmations of desire and of excess, eros opposes key values that med-
icine has endorsed to advance a firm knowledge of disease and to pro-
mote patient safety ever since the scientific heirs of Hippocrates ousted
his powerful archaic predecessor, the dream god Asklepios.
Serious illness, from the patient’s point of view, is all about losing con-
trol, a crash course in the insufficiency or radical limits of reason. As I
discovered, patients and families routinely enter into a territory hostile
to medicine and native to eros. The irrationalities of illness, which do not
exclude a comic side or even gallows humor, might be well represented
in A Midsummer Night’s Dream, where the eros-figure Puck deploys a po-
tent drug to upend control and to disorder social hierarchies so thor-
oughly that the beautiful fairy queen Titania instantly falls in love with
the buffoon-like tradesman Bottom the Weaver. Puck, whose impish
humor runs toward cruelty, had deployed his magic drug to endow Bottom
with the long ears and high-octave rasp of the likeable jackass he more or
less is, but Titania (love blinded) dotes on him all the more. Illness and
eros can also abruptly transport us into an eerie dreamscape where every
thing changes and intensifies. “Bless thee, Bottom! bless thee!” cries a
companion on seeing his jackass-headed friend: “Thou art translated.” 1
Translational medicine refers to a discipline within biomedicine and
public health research designed to bring the findings of laboratory or
bench science to the practical aid of patients and communities.2 It seeks
to “translate” relatively abstract rational discoveries into new diagnostic
tools and policies. The unofficial “translations” of eros often, in practice,
bring only confusion and disorder, even nightmarish hallucinations, as
in Henry Fuseli’s erotic / demonic illustration (Figure 1.1) that depicts
Bottom—oblivious to the embrace of Titania—stuck in an Ovidian meta-
morphosis somewhere between animal and human form.
Bottom bears the signature of eros as trickster, the unruly antagonist of
reason, introducing the civilized world to its uncivil, undomesticated dark
side, as Fuseli suggests by including two unscripted eighteenth-century
Figure 1.1. Henry Fuseli. The Awakening of Titania (1793–1794).
Photo credit: A lbum / Art Resource.
society belles (their charms tastefully on display) framed by a small

clearing in the thick, dark, wooded canopy. The jackass head, however
appropriate for Bottom, also gestures toward the dark woods: unlike its
tame cousin the donkey, the jackass since biblical times has a reputation
for wildness, much as eros maintains contact with primordial forces that
underlie our civilized facades. Serious illness also can initiate a Bottom-
like nightmare regression, in which the sensuous body reclaims its orig-
inal (wild) precedence over reason and thought. Eros and serious illness
both center us in the body with its often inexplicable feelings and way-
ward desires. Illness translates us: it carries us into an unfamiliar, even ma-
lign, humpty-dumpty realm where, without our consent and against our
wishes, we change and our lives change. As cancer survivor and sociolo-
gist Arthur W. Frank writes, “When the body breaks down, so does the
life. Even when medicine can fix the body, that d oesn’t always put the life
back together again.” 3
Eros, in short, far from irrelevant to medicine, regularly suffuses the

experience of illness, marking it with damage, deficit, forfeit, and loss: loss
of health, loss of function, loss of future. It punctuates the medical encounter
with its invisible interruptions and even its telltale nonappearances, as
when serious illness interrupts or terminates former intimacies. “No more
fucking!” insists poet Jane Kenyon when her poet-husband, tactlessly,
reminds her of their thousands of afternoon erotic “assignations” on
the same bed where she now lies stricken with end-stage leukemia.4 Eros
at such times makes its presence known obliquely through passionate re-
fusals, grief, or anger. It produces gaps as palpable as the vacant space in
a once-shared marriage bed. Eros is at work even in such apparent ab-
sences, but its more intrusive presences also tend to remain invisible
because biomedicine has schooled us not to recognize eros or (if we sense
its unseen ghostly presence) to disregard and to unsense it.
Ruth’s struggle to bless the candles in a voice eerily flat and unmusical—
at the w
ill of the body—hid a stark truth: the catastrophic death of brain
cells and wrecked neural paths. It was my nonstatistical introduction
to Alzheimer’s disease, the incurable, fatal, degenerative illness afflicting
over 5 million Americans, including 200,000 under age 65 who, like Ruth,
suffer younger-onset Alzheimer’s. Alzheimer’s disease (the sixth leading
cause of death in the United States, if we ignore medical error) kills over
half a million seniors each year; nationwide, it is the single most expensive
medical condition, with annual costs in 2016 estimated at $236 billion—
projected at $1.2 trillion by 2050.5
Numbers so massive quickly pass through my mind, disappearing like
abstractions, but I cannot omit two brief and crucial personal notes. First,
on ethics: Ruth’s story belongs to Ruth, and I need to respect her privacy
as far as our joint experience allows. Second, on method: as caregiver,
I am a paramedical figure, with rights and responsibilities at the bedside,
but my role is more complex than duties and privileges suggest. F amily
caregivers cannot put aside the interlaced social and emotional filaments
that bind them to the patient, which infiltrate my account in ways that pre-
vent me from dividing subjective experience and critical inquiry into
separate compartments.
Susan Sontag wrote brilliantly about metaphors of illness and the
dilemmas that they create without once mentioning her own breast cancer.
(Her son, David Rieff, calls Sontag’s Illness as Metaphor “almost anti-
autobiographical.”) 6 “What I write about,” Sontag says of her nonfiction
works, “is other than me.” She grants, however, a sizeable concession to
her writing as a novelist: “Needless to say, I lend bits of myself to all my
characters.”7 The shards of my experience that I “lend” here, sparingly,
fall outside the memoirs of illness that scholar Ann Jurecic describes
as “a thriving genre in the late twentieth and early twenty-first centu-
ries.”8 My own fragments contribute, I trust, to an emerging composite
portrait of the caregiver.9 The commonness of my experience taps into
what makes the caregiver both a representative figure of our time and
also, compounding the dilemmas that caregivers face, an uncannily in-
visible figure.
The general claims that follow—less logical propositions than a loose
network of positions supported through a makeshift ensemble of evidence,
argument, and illustration—begin with the observation that eros is often
an unseen and unacknowledged presence at the sickbed. A focus on care-
givers helps expose some of the varied manifestations of medical eros,
especially its contact with lost control and with the not-k nown. It raises
practical and ethical questions about what to do—not only when medi-
cine reaches its limits or outright fails but also when eros, too, leads us into
losses, failures, and dead-ends. Caregiving, finally, calls attention to a
major change within the understanding of illness that holds important

implications for biomedicine as well as for t hose who fall seriously ill and
for their companions in illness. It helps demythologize the outdated, nos-
talgic health-care dyad of doctor and patient. Caregivers represent the
far fuller opening up of the dyad.
The doctor / patient dyad, almost like a traditional romantic couple, of-
fers a useful image for the contractions of focus that eros (in its con
temporary shapes) disrupts, shatters, and expands. Medical eros in its
multiplier effect turns the caregiver into a figure with resonance for
patients, doctors, and a wide range of health-care professionals, as well as
for family, friends, lovers, and bystanders who are caught up in the cir-
cumference of illness. The caregiver is an in-person metaphor. We are all
in some sense caregivers, or potential caregivers, even as patients (sur-
rounded by medical professionals and by significant others) engage in
their own visible or invisible acts of self-care. They are caregivers enlisted
in the service of their own porous patienthood. Physicians, of course, will
not confuse their legitimate role—as the designated resource for primary
and specialized care—with the position of informal or formal caregivers,
but an opening up of the doctor / patient dyad allows us also to recognize
the larger personal, social, and professional affiliations that doctors cannot
always shed or set aside at the patient’s bed. Is the doctor g oing through
a divorce, concerned about a sick child at home, a closeted gay, or desperate
with guilt over a medical error? Medical eros is crucial to an expansion
of focus that opens up the doctor / patient dyad and moves individual ill-
ness beyond traditions that, even in the era of biomedicine and of man-
aged care, no longer apply.
Supra-dyads: Eros at the Bedside

Eros and illness both usually send us u nder the bedcovers, and beds re-
main so basic to the vocabulary and practice of medicine that hospital
supply firms manufacture them in truckloads. The bedside, then, serves
both as a real-world place and as a metaphor: the actual site of privileged
medical exchanges and a theoretical space where patients encounter the
representatives of medical logos. In its metaphoric sense, the bedside func-
tions as an edge, a boundary or borderland where two adjacent worlds
touch and sometimes collide. This edge, however, always in practice ac-
quires thick historical real-world particularities that locate it in specific
times and cultures, much as the Victorian bedside (enfolded within the
home) differed significantly from the modern hospital cubicle. Eros, then,
at whose actual bedside? When? Where? Who is officially or unofficially
licensed to be there? Enter the caregiver.
The caregiver, at least under that name, may be a fairly recent inven-
tion. The famed Oxford English Dictionary lists the first appearance of
the noun caregiver in 1966, when it emerges into language as a role distinct
from the mostly female figures (grandmothers, aunts, mothers, daughters,
sisters, spinsters, nuns) who for centuries assumed a caregiving function.
The work, if devalued previously, is often unpaid or reimbursed with ob-
scenely low wages, perhaps partly b ecause gender stereotypes still asso-
ciate caregiving with women and with unskilled labor. There are 2.5
times more w omen than men providing intensive “on duty” twenty-four-
hour-a-day at-home care for Alzheimer’s patients. In my experience most
of the daily hands-on staff in nursing care facilities are women, often mi-
nority w omen. In 2015, unpaid caregivers—I’d guess, disproportionately
female—provided an estimated 18.1 billion hours of care to p eople with
Alzheimer’s and with other dementias, work valued at $221.1 billion (or
eight times the total revenue of McDonald’s).10
Equity, economics, and gender raise serious issues, but here a focus
on the underpaid, overworked, and largely invisible caregiver helps add
a touch of reality to archaic fantasies of medical attention. T oday teams
of rotating specialists mostly replace the single f amily doctor; even family
practice offices are often staffed with multiple doctors, who trade off as
needed. Meanwhile, patienthood has expanded far beyond the image of
a single person who occupies the sickbed. Alzheimer’s, I came to see, is
at least a two-person disease. The intrinsic doubleness of Alzheimer’s dis-
ease is in truth more like a polygon, a many-sided figure, in which it re-
sembles much serious illness, wherein one of the many persons is not the
doctor and also not the patient.
The caregiver emerges as a representative of our changing conceptions
of health and illness. It is a change that also includes patients. In 2008,
medical sociologists Kirsten Smith and Nicholas Christakis described a
new health-related pattern that they call “supra-dyadic effects.” 11 Supra-

dyadic effects extend in networks beyond a single patient to include not
only spouses or parents but also c hildren, relatives, neighbors, paramed-
ical help, and o thers, from the playmates of c hildren and the neighbors
of neighbors to far-flung friends of friends of friends. Christakis and Smith
argue that obesity spreads through supra-dyadic networks, but patterns
of illness also change as emerging technologies alter both the networks to
which we belong and our relations to other people. Eating disorders, for
example, are now a semicontagious global phenomenon as new media,
from cell phones to Internet video clips, expand social networks. In the
remote island of Fiji, girls were free of eating disorders prior to the intro-
duction of television in 1995, but after several years of television 11.3 percent
of adolescent girls in Fiji reported purging at least once to lose weight.12
Even divorce tends to “cluster” within social networks.13 Susan Sontag’s
short story “How We Live Now” (1986) perfectly captures the operation
of a supra-dyadic social network, as readers encounter a nameless
HIV / AIDS patient exclusively through conversations among his acquain-
tances, with each speaker offering tidbits of advice: “Meat and potatoes
is what I’d be happy to see him eating, Ursula said wistfully. And spa-
ghetti and clam sauce, Greg added. And thick cholesterol-r ich omelets
with smoked mozzarella, suggested Yvonne, who had flown from London
for the weekend to see him. Chocolate cake, said Frank. Maybe not choco
late cake, Ursula said, he’s already eating so much chocolate.” 14 It is a
perfect polygon of quasi-medical advice.
The supra-dyadic bedside, with its disruption of the patient / doctor
dyad, finds its typical contemporary figure, I would argue, in the family
caregiver. I would learn as Ruth’s unofficial primary caregiver that doc-
tors tended to disappear, and her illness became a condition that wrapped
us up together, both in its sometimes ragged, ever-expanding outward
circles as friends and family stopped by, but especially in its centripetal
contractions, when for long periods we were like castaways adrift on a
single raft. Caregiver spouses, for example, are bound to the patient not
only by complex emotional entanglements but also by semiofficial para-
medical duties; almost inescapably they become the communications
center for far-flung family members, friends, coworkers, and acquaintances.
Mass e-mail updates shoot out like duplicate Christmas letters. Emotional
entanglements range from romantic love to anger and schadenfreude. Is
the old boyfriend welcome? The horrible in-laws? Rotating teams of
health-care providers come and go, along with waves of semiprofessional
investigators—good-nurse, bad-nurse—sent to enforce insurance com
pany protocols, but the figure who stays, day in, day out, and who absorbs
the costliest toll on spirit, mind, and body is of course the f amily care-
giver. The caregiver experiences the supra-dyadic bedside edge as a
highly permeable membrane where to be fully present is almost inescap-
ably to be wounded.
All f amily caregivers face a significant risk of serious illness and even
death.15 A few bullet points help blow holes in any suspicion that I am
talking h ere mainly about myself:
• The United States has an estimated 36 to 38 million caregivers

according to a 2004 survey by the American Association of
Retired Persons (AARP) and the National Alliance for Caregivers.
• The AARP estimates that the total unpaid value of labor by
caregivers is at least $350 billion per year.
• Caregivers are at increased risk for heart disease, arthritis, cancer,
diabetes, and other stress-related diseases.
• Caregivers suffer depression at twice the rate of noncaregivers.16
The illnesses that caregivers contract or stand at much increased risk of

contracting point to a significant additional problem: wounded caregivers
not only continue to care for patients but also affect others in the social
network. Illness spreads across the network of support even as practical
help recedes. I quickly came to realize, as Ruth’s disease worsened, that
medical logos had no effective treatments to offer her. She grew weary of
appointments in which her neurologist posed questions designed to track
her cognitive losses and to map the brain damage. Author and neurolo-
gist Oliver Sacks objected to what he calls a “mechanistic neurology,”
which focuses on deficits.17 Ruth quickly came to dislike such medical
visits that focused on what she couldn’t do. How many times do you
need to fail to know what day it is today or what the doctor’s lapel is
called? As doctors receded and Ruth’s deficits increased, I slowly emerged
as the lone figure in charge, a position for which I was both wholly un-
qualified and totally unprepared.
Family caregivers in general are overtasked, underprepared, and thor-
oughly worn down as they struggle on with little more than good inten-
tions as a guide. Medical eros is their native turf, but nobody tells us about
eros. Instead, stressed-out exhaustion serves as a powerf ul antiaphrodi-
siac, which I failed to recognize as illness opened fissures in our once rock-
solid marriage. My frustration mounted each time Ruth screwed up
ordinary household exchanges. Please close the front door. A blank stare
simply intensifies my frustration. The cat got out! Ruth panics. Now what?
Spent, I climb the stairs only to discover a bathroom faucet r unning full
blast. My outbursts, no longer rare, cause Ruth physical distress, like the
stereo volume suddenly turned up ultra-loud; so I school myself to
(a hair-trigger) calm. I can’t leave Ruth alone to shop, but shopping with
Ruth turns a quick ten-minute errand into a maddening, hour-long chore.
Every day brings the same tearful plea: “I want a dog.” Of course, I’m
the bad guy who keeps saying no. Who’ll feed the dog, walk it, clean up
the mess? Me, that’s who. Reluctantly, worn down, I get a dog—a cute
rescue mongrel with heart disease, a huge disaster. But Ruth pays it
a lmost no notice. Was “dog” a metaphor? I understand next to nothing
about how her mind works. One hot August day, preparing my syllabus
for fall courses at the university, I suddenly know (as if a disembodied
hand scrawls the warning in blood on my study wall) that one more se-
mester teaching full time and also organizing Ruth’s care when I’m not
caring for her, morning, nights, and weekends, w ill flat out kill me. I put
down the syllabus, turn on the word processor, and compose my letter of
resignation.
Nothing h ere w
ill surprise f amily caregivers. Our standard guidebook—
accurately titled The 36-Hour Day—details the surreal Beckett-like con-
tradictions: “I can’t go on, I’ll go on.”18 Through it all, I feel the old, abiding
deep love for Ruth, enhanced with the extra concern that a parent might
feel for an injured child, but mingled with suppressed resentment that my
own life has shrunk to the pleasureless round of kitchen, stairs, and bed-
room. I have been “translated” into a mechanical man, a zombie, a dead
man walking. In robbing Ruth of her health, Alzheimer’s disease has worn
me down to the nub, robbed me of a loving daily companion, and left me
l ittle but deadlines, meetings, and useless biweekly pill containers. I didn’t
recognize myself in the person who kept missing appointments and
forgetting plans. I began to wonder if dementia could be contagious.
Isn’t this the weak point (the heart as dazed and crazed as the head) where
the failures of eros—the everyday losses and erosions that it entails—
begin to raise questions of ethics? Pose basic questions about how to live
and what to do?
Medical logos has good reason to control the free play of eros. Codes
of conduct, however, control mainly the disruptive powers of eros, while
failing to maximize its positive contributions, which include the widening,
postdyadic circles of empathy.19 Empathy is a topic of increasing interest
in medicine, and an empathetic stance t oward patients represents a major
advance beyond the “detached concern” that doctors once (wrongly)
thought they should cultivate. Empathy in medicine has no more persua-
sive advocate than Danielle Ofri, a physician whose challenging patients
at Bellevue Hospital in New York City at times gave even Ofri pause; how-
ever, her book What Doctors Feel (2013) has emphasized, with vivid ac-
counts, how the “final outcomes can be strongly influenced by a doctor’s
emotional state.”20 Medical educators disagree about w hether empathy
can be taught, but it certainly can be modeled and encouraged as a posi-
tive value, with a shaping influence on outcomes.
Empathy nonetheless has its limits. I can’t empathize with serial killers,
rapists, and mass-murderers; their victims and families have my concern.
Moreover, so-called empathetic behaviors—sometimes recommended by
medical authorities—strike me as bogus, no more than a clinical charade
if practiced merely to improve patient-satisfaction scores or to forestall
lawsuits. A colleague once interviewed Pueblo elders in New Mexico for
a report on Native American attitudes toward end-of-life care. She had
no interest in eros but rather asked (one question among many) if the
elders would like their Anglo doctors to show greater “empathy.” No, the
elders replied. They did not want empathy. They wanted respect. Empathy
is a force for good: it radiates kindness, understanding, and connection.
Eros, however, is not always a force for good, and empathy (if cheapened
into a behaviorist charade) can quickly transform patients into objects of
manipulation. Objectification, even with good motives, eventually poi-
sons a relationship, much as pity can turn the other person into an object
of charitable condescension. Empathy, respect, and even self-respect all

seemed, in my case, dire casualties of Alzheimer’s disease.
Medical Eros and Patient-side Transformations

Eros, despite the casualties that illness inflicts, can also hold benefits
equally helpful for patients, doctors, caregivers, and the entire supra-
dyadic network of the ill. Illness, even through the fires of its sometimes
inescapable destructiveness, can bring advantageous as well as harmful
changes, and the helpful changes need not follow the scripts laid out
by tenderheartedness. “The kindest thing anyone could have done for
me, once I’d finished five weeks’ radiation,” writes American novelist
Reynolds Price after spinal cord cancer left him a wheelchair-bound para-
plegic, “would have been to look me square in the eye and say this clearly,
‘Reynolds Price is dead. Who will you be now?’ ”21
Price’s unlikely description of the kindness he desired, far from
drill-sergeant, suck-it-up tough love, expresses a recognition that serious
illness, like eros, puts not only lives at risk but also selves. Life as a
biological state—bare life, as philosopher Giorgio Agamben calls it—
involves signaling and self-sustaining properties absent in organisms that
are dead. In mammals, it is almost equivalent with breath. King Lear,
holding the corpse of his d aughter Cordelia, cries out, “Why should a
dog, a horse, a rat, have life, / And thou no breath at all?”22 Selves, as dis-
tinct from bare life, are social, cultural, emotional, psychological, and
often spiritual beings. Spinal cancer—compounded by the radiation
damage caused by medical treatment—had left Reynolds Price in a po-
sition to know how catastrophic illness can destroy not just the ability to
walk but the lineaments of a former self. Illness, like eros, may include
episodes of violence and destruction that coincide with dark failures of
personal identity: “Reynolds Price is dead.” Reason is not the power
most likely to produce a new self, u nless perhaps you are a philosopher.
Desire, however, provides the thrust t oward change necessary for almost
anyone; for Price, self-transformation and recovery both included an
erotic push.
Eros played into recovery and self-transformation for Price in the spe-
cific sense that his personal inflection of Christian belief drew him t oward
the biblical injunction to “choose life.” Life for Price means—at a far re-
move from breath or bare life—chiefly love and work. Love and Work
(1987) is, in fact, the title of a book he wrote about a writer recovering from
despair. Eros and its sustaining powers also play a significant, almost spir-
itual role in his poetry. Christ and Eros, according to literary scholar
Victor Strandberg, are the two major figures interwoven “across his whole
poetic oeuvre.”23 Price leaves no doubt about the importance of eros to
both his creative work and his personal relations, and eros remains basic
to his own return to health. Health, in its etymology, refers to wholeness,
but no medical cure could reverse his paralysis and return his body to a
precancerous wholeness. The title of Price’s autobiographical illness nar-
rative, A Whole New Life (1994), embraces a punning doubleness: its col-
loquial meaning suggests simple renewal, while the adjective “whole” also
suggests a transformation or redefinition of what we understand by health
and wholeness. Health, in Price’s creative movement through illness to
recovery, does not mean the restoration of prior function. It means the
emergence of a new self, full and unimpaired in its altered wholeness, for
whom eros provides indispensable thrust: Who will you be now?
Recovery for Reynolds Price holds significance beyond his personal
story because it also challenges the assumptions of theorists who tend to
ignore, discount, or deny the erotic movement through loss and damage
to self-transformation. Like Bataille, they celebrate eros for its power to
destroy bourgeois illusions and to burn away or demystify repressive so-
cial structures and obsolete belief systems, including what some theorists—
at the crossroads where Marxist critique meets radical psychoanalysis—
regard as the bourgeois illusion of a stable or coherent self. Price certainly
sees a possible move from an older stable self to a new stable self that
emerges from the fires of trauma, but he does not experience the new,
hard-won, coherent (“whole”) selfhood as illusory or as a bad-faith ca-
pitulation to dominant bourgeois ideologies.
Biological anthropologist Helen Fisher, melding neuroscience with
field data, identifies three distinct stages of erotic life: lust, romantic love,
and attachment.24 Attachment (if the least familiar aspect of eros) merits
special attention here as vitally important in its personal, social, and spir-
itual dimensions, and everyday experience confirms that erotic experi-
ence contains the power to promote affective bonds reaching far beyond
mere sexual pleasure. Recovery, as Price understands it, depends on erotic

attachments that extend to life itself. Choosing life means feeling grateful
even for breath. “Grieve for a decent limited time over whatever parts of
your old self you know you’ll miss,” he advises. “Then stanch the grief,
by whatever legal means. Next find your way to be somebody e lse, the
next v iable you—a stripped-down whole other clear-eyed person, realistic
as a sawed-off shotgun and thankful for air.”25
Caregivers, no less than the patients they care for, pass through the
fires. They stand no less in need of attachment, emergence, and self-
transformation. A fter thirty years of marriage and a decade as caregiver,
I needed plenty of help. Mostly, given my solitary habits, help was
absent. I was left alone to decide—the hardest day of my life—when it
was time for Ruth to leave the home we had built together. She could
no longer make decisions: it was all left to me. When I asked for help from
her all-star medical center team, her neurologist replied coolly (from the
far-side of logos): “Not a medical issue.”
Many caregivers know the unthinkable bitterness of leaving a loved one
behind. The distress is almost mythic, evoking, for me, memories of Eu-
rydice disappearing into the underworld. A miraculous recovery and re-
union was what I longed for—Ruth’s return to health and the restoration
of our life together—so I set out on a literary journey to find my own con-
soling myth. What I discovered, instead, was the inescapability of loss
and failure.
Psyche is a young princess so beautiful that even Venus, goddess of
love, envies her. Fired with resentment t oward a mere h uman rival, Venus
sends her wayward son Cupid to afflict Psyche. Cupid, famous for mis-
chief and malice, enjoys undermining marriages and defiling public mo-
rality, but not even Cupid, as it turns out, is safe from eros. The beauty of
Psyche proves so enchanting that Cupid too falls helplessly, hopelessly,
in love. A fter numerous improbable twists, many engineered by Psyche’s
two wicked sisters, they marry. Their fairy-t ale marriage, however, in-
cludes an ironclad proviso: Psyche as mortal is not allowed to gaze upon
her winged-god husband. Hence they meet only after dark. Psyche, alas,
whose innocence tends toward naïveté, falls for a plot devised by her evil
sisters. One evening she lights an oil lamp to gaze secretly at her sleeping
husband, and the vision of her golden-ambrosial husband so dazzles her
that, unluckily, a drop of lamp oil falls on Cupid’s shoulder. He wakes,

sees that she has broken the marriage provision, and without a word flies
off on powerful wings, with poor Psyche hanging on to one leg u ntil,
exhausted, she slips down to earth. As the years pass, she wastes away,
tormented in ordeals devised by the still-vengeful Venus, wandering the
earth in futile search for her lost lover and lost husband.
The myth of Cupid and Psyche has an equally improbable happy
ending—a reunion and remarriage ordered by Jupiter—but the deus-ex-
machina happy ending gets less happy the more I think about it. In one
version, Jupiter gives Psyche a cup of ambrosia to drink that transforms her
from mortal to immortal. In the more common version, she lies worn out
and near death from years of futile searching when Cupid, out of nowhere
or prompted by the god of comedy, suddenly reappears. He revives Psyche
with a famous kiss that both saves her life and confers immortality. It is this
moment of erotic transformation that neoclassical sculptor Antonio Canova
captures in a marble embrace so fluid it seems lifelike (Figure 1.2).
As if its eroticism w ere too dangerous to accept outside the sanitizing
process of allegory, various Neoplatonic writers interpreted the pas-
sion that Canova celebrates as expressing the soul’s desire for u nion with
the divine. I interpret it differently through my decade as worn-down
caregiver. Eros is both poison and antidote, as signified in the Greek term
pharmikon, and the same formula holds for medical eros. While Cupid’s
kiss reflects the power of eros to redeem the loss and failure always im-
plicit in eros, certain experiences of loss and failure can also be unfixable
and irredeemable. The erotic antidote does not work; the creative self-
transformations do not occur. Cupid, outside myth, fails to show up just
in the nick of time.
Loss and failure—not amyloid plaques and neurofibrillary tangles—
may be what Alzheimer’s disease is all about for the entangled caregiver.
Mere statistics that rank Alzheimer’s among the leading c auses of death
serve to hide the unnumbered thousands of caregivers exhausted and dis-
traught as a spouse or parent slowly slides into a protracted, unrespon-
sive death-in-life. Such caregivers, wedded to loss and failure, are not the
sixth leading cause of anything. Some disasters, over which we have no
control, may be slightly easier to accept than preventable losses and fail-
ures. My failures as caregiver w ere sometimes, frankly, very preventable.
Figure 1.2. Antonio Canova. Psyche brought back to life by Amor’s Kiss (ca. 1818).
Photo Credit: Bridgeman-Giraudon / Art Resource, NY.
I once confided my failures in an e-mail to religious friends of high moral

character: “I know that what I’m describing may offend your princi
ples,” I wrote. “It offends my principles too. I just couldn’t survive on
principles.” Sheer survival as a caregiver may require such violation of
principles and failures of best intentions that you cannot but emerge (in
your own eyes) less. Eros, too, as Anne Carson writes, can reduce the
lover to a state of less-ness. This is not the self-criticism of a crank perfec-
tionist. At times I just plain failed.
Failure is preordained for caregivers of Alzheimer’s patients. This note-
to-self, which applies in other desperate medical conditions, might at
least offer solace to fellow caregivers distressed or tormented by their de-
ficiencies. Caregiving is like a game that you cannot win and cannot re-
fuse to play, but it is also no game. It belongs to the awful paradox that
caregiver Carol Levine calls “accepting the unacceptable.”26 A wise phy-
sician advised me, in reference to my struggles as caregiver, that the first
rule for lifeguards is don’t drown. I was drowning. Failure h ere is not an
error to be excused with a heartfelt mea culpa or with a Hamlet-like nod

to human frailty: it constitutes the caregiver’s daily experience. We can’t
help but fail. Such unavoidable spirit-eroding failure and loss, as your
strength runs down, is the immersion in a hyperflawed state of being:
an experience of indelible mistakes that you cannot expunge and cannot
repair, what Reynolds Price once called permanent errors. If you set high
expectations for yourself, you will fall short. You will fall short anyway.
Period. I was ambushed, a second time, less by Alzheimer’s disease than
by my inescapable, irreparable failures.
Caregiving, according to Arthur Kleinman, a physician, medical an-
thropologist, and family caregiver, is a “defining moral practice.” He adds,
“It is a practice of empathetic imagination, responsibility, witnessing, and
solidarity with those in great need.”27 A moral practice must take account
of its own failures, including failures of empathic imagination. One Al-
zheimer’s caregiver described himself as chained to a corpse—worse, a
corpse that “complains all the time.”28 Empathy? In nonstop thirty-six-
hour days, caregivers cannot discharge all their duties with honor and dis-
tinction. Respite is so desperately needed that medical insurance (even
Medicare) regularly covers it, although many caregivers—thanks to eros
again—can’t or won’t accept relief. I wouldn’t. My empathetic imagina-
tion hit bottom one day when Ruth put my car keys in her purse . . . and
forgot. Cue the frantic two-hour key search. An everyday nuisance? How
often do you find ice cream puddled in a kitchen cabinet? I’m patient, but
caregivers run out of patience. Ruth didn’t know which of the three doors
in our bedroom led to the toilet. (The toilet, as one caregiver told me, was
where her husband washed his hands.) Every nighttime bathroom trip for
Ruth requires supervision, as I wearily roll back the covers. My frustra-
tion, long held in check, at times spills out wildly.
A serious ethical question for Alzheimer’s caregivers is not how to avoid
failure, b ecause failure is inescapable, but how to understand and to deal
with the self-diminishments it entails, especially for people who are com-
petent, loving, and desperate to help. Alzheimer’s disease, unlike many
medical conditions, ramps up the likelihood of moral, physical, and emo-
tional failures because it enlists caregivers without their knowledge in a
distinctive and damaging erotic economy. Erotic economy is an unusual
concept in medicine. If the moral practice typical of caregivers, however,
is carried out amid inescapable failures and loss, it cannot be fully un-
derstood apart from the idea of an erotic economy and, in my case, apart
from understanding which specific erotic economy it is that typifies Alz
heimer’s disease.
An Erotic Economy of Illness

This is how the erotic economy worked: as Ruth’s condition deteriorated,
my concern for her intensified. Love and affection can’t be quantified, of
course, but they can change, even measurably. People fall in and out of
love, divorce happens, and our degrees of concern ratchet up and down.
Ruth’s deterioration kicked my attention, concern, love, and a variety of
related feelings into overdrive. My hyperintense emotional investment oc-
curred at the exact moment when Alzheimer’s disease was shutting
down not only Ruth’s cognitive functions but also, disastrously for me as
well as for Ruth, her emotional responses. In effect, she was fading away
emotionally, just when I felt in greatest need of her ordinarily loving ex-
pressiveness. Oddly, I could deal with her failures of memory and
household lapses. What was hardest for me was her unusual absence of
emotion. The subtly modulated flow of mutual affection established over
thirty years of marriage suddenly went haywire. Ruth gave back less and
less just as I was giving more and needing more. I began to feel something
like emotional impoverishment. What would happen when my own heart
registered as wholly bankrupt?
Historians employ the concept of “moral economy” to identify the com-
plex flow of competing interests and obligations among diverse groups
in a society, such as eighteenth-century street mobs, cottagers, and land-
owning aristocrats.29 My coinage of an erotic economy refers to the
complex flow of affections within a household, within a relationship,
or within the extended supra-dyadic social networks created by illness. In
Alzheimer’s disease, the usual flow of reciprocal affections between pa-
tient and caregiver swerves crazily out of balance. It also alters in inverse
patterns that threaten breakdown, with consequences often less dire for
the unknowing patient (progressively unaware or possibly already lost
in dementia) than for the knowing, anxious, increasingly distraught
caregiver.
Economics, which Thomas Carlyle famously described as the dismal

science, seems a bleak metaphor applied to love, but literal money is often
a real source of anxiety for caregivers, with the power to undermine af-
fection and to trump eros. Fortunately, Ruth and I had bought long-term
care policies, doubtless a white upper-middle-class privilege, but still I
worried about money, and now I worried about work, too. Work, ac-
cording to some major thinkers, stands in direct opposition to eros. Eco-
nomic activities and erotic activities, they argue, are linked only through
a weird misalliance. Bataille, for example, associates eros with the con-
cept of dépense, and dépense in his specialized usage refers not merely to
expense but to specific irrational and excessive expenditures: not only un-
productive but also deliberately wasteful. From ritual gifts to blood sac-
rifice, eros for Bataille belongs to the profligate, wasteful expenditures of
dépense—which differ fundamentally from capitalist values that focus on
production and profit. As he writes of dépense, “the accent is placed on
a loss that must be as g reat as possible in order for that activity to take
on its true meaning.”30 My loss seemed as g reat as possible but—perhaps
because it was unchosen or because I was simply unable to recognize the
extent of my own wasteful erotic expenditures as caregiver—I felt little
beyond meaningless fatigue and emotional numbness. Eros, for me, had
just gone missing.
The erotic economy of Alzheimer’s disease, in short, had transformed
an intimate and loving act—caring for a disabled spouse—into almost the
opposite of intimacy. Days became a to-do list of never-ending chores. Our
social life dried up in direct correlation with Ruth’s increasing inability
to communicate. Naively, I had imagined that sexual intimacy would sur-
vive Ruth’s increasing loss of speech—isn’t sex supposed to be the secret
language of love?—but I discovered that sexual communication depends
on a continuous mutual relay of subtle signals, unspoken to be sure; the
signals failed with the failures of language. The sex life of an Alzheimer’s
couple, often nonexistent, is at best a study in asymmetries: in one study,
only 27 percent of the Alzheimer’s couples were sexually active. 31 The
erotic economy of Alzheimer’s disease, then, stripped away sex, too, just
when I most needed its unspoken intimacies.
Numb, I was hanging on for dear life, and eros had disappeared in a
plodding execution of only the most unavoidable tasks. “One goes on to
the end,” says William Carlos Williams’s doctor as he pursues his digital
examination in a spirit of grinding, impersonal labor.32 He and I might
have benefited from a glimpse at sociologist Jean Baudrillard’s theory of
séduction. Séduction, for Baudrillard, sheds its libertine aura and refers
instead to purposeless, unproductive erotic play. Erotic play, much like
dépense for Bataille, stands as a positive alternative to the prevailing
bourgeois, capitalist work ethic centered on a profit-and-loss mind-set.
“Seduction,” he sums up, “is, at all times and in all places, opposed to
production.”33 I was in no mood for francophone theory. I fretted that I
could barely read or write. It was not that I opposed either production or
play—I like them both. Writing for me, I learned, is directly connected
with pleasure and desire, but I was unable to feel pleasure, was drained
of desire, and was without a spark of creative juice. It was all loss and failure
all the time, and the seductions of play w ere, frankly, the last thing on
my mind.
The erotic economy of Alzheimer’s disease has a specific time signa-
ture that no doubt differs from the tempo of other illnesses. While dépense
and séduction take place in an archaic or fantasy world without clocks,
the Alzheimer’s caregiver lives in a paradoxical world in which t here is
never enough time for the tasks left undone, and meanwhile we know that
one day soon (the disease-clock is ticking) radical changes will occur. At
a moment of intense distress, I contacted the local Alzheimer’s Associa-
tion office and arranged to meet with a volunteer. My advisor turned out
to be a white-haired, elderly w idow, flawlessly attired in a skirt and
matching cashmere sweater as if just arrived from the country club. I
doubted she could help—my prejudice against country clubs had
somehow survived the emotional insolvency—but nonetheless I poured
out my distress as she sat and listened. Only later did I realize that wid-
owhood meant she had proba bly nursed her own spouse through Al-
zheimer’s disease. When I at last finished, she said quietly, “It w ill get
worse.”
Maybe I just needed to lighten up—not a likely scenario—but eros
certainly failed to carry me as caregiver into a lighthearted zone where
time is measured in happiness. What does time feel like, I wonder, in the
erotic economy of c hildren pressed into service as de facto caregivers for
am other shut down in depression, say, or for an alcoholic father? Such
c hildren must not only give affection without return but also likely
receive, for their trouble, mainly indifference and abuse. What if as a
teenager I’d had to raise my younger sister and three younger brothers?
Dépense and séduction belong to worlds far different from the strange
nightside territory into which Alzheimer’s disease pulls the unwitting
caregiver—a realm all the more uncanny because everyday surroundings
tend to remain unchanged while the clocks whir madly backward and
forward, or just stop. The time signature that defined my life in the erotic
economy of Alzheimer’s disease was split into either nonstop busyness
and constant fatigue or (as Ruth edged ever further into unresponsive,
emotion-stripped need) what seemed like interminable and purposeless
waiting.
Standing-By: Medical Eros and Waiting

Waiting is such a common experience in medicine—waiting for labora-
tory results, for a hospital bed, for an appointment—that it even receives
its designated space: the waiting room. As scenes of waiting, hospitals and
clinics are so similar to airports and motor vehicle departments that we
might be tempted to dismiss waiting as simply an unavoidable modern
inconvenience, like temporary gridlock. Samuel Beckett, in a more philo
sophical vein, represented waiting as an image of the modern condition.
In Waiting for Godot (1953) the main characters spend their time
talking, with no clear purpose other than passing time. Waiting is just
what they do, almost a vocation or a state of being. The postmodern era
adds its own twist to inaction. Waiting, in a popular culture that praises
agency, self-actualization, and empowerment, is automatic disempow-
erment; it implies timidity, nonassertiveness, diminished selfhood, and
loss of control. It signifies almost culpable or shameful failures of will. If
you were truly self-actualized, empowered, and in control, you wouldn’t
be waiting. Your oil would already be changed, your plane forever at
the gate, the doctor always in.
Caregivers, in their encounter with waiting, are not likely to benefit
from philosophical distinctions between time and duration, however fas-
cinating.34 My experience brought a rough-hewn, pragmatic recognition
of two kinds of waiting. These alternate modes might be called—to borrow
an old-fashioned distinction from grammar—transitive and intransitive

waiting.
Transitive waiting implies waiting for something. An anticipated event
would complete the action of waiting, the verb will eventually find its ob-
ject, and the practical questions that then arise mainly concern timing:
how long to wait for the anticipated closure. For example, I silently waited
for the dreaded day that I knew would arrive when Ruth would have to
leave home. Most f amily caregivers know this dread, and in my case I
waited—a serious m istake—far too long. I felt that Ruth was better off at
home. I couldn’t bear the thought of losing her, and I didn’t know that
there are now some truly remarkable facilities designed and staffed for
dementia patients. Instead, as I arranged for daytime home c are during
the workweek, I also failed to understand two important facts.
First, Ruth was growing dismayed at her unwilling transformation into
the one h ousehold member who was forever making m istakes. She liked
to say, laughing, that she was only “dinged.” We both knew it was no joke,
but we kept up the subterfuge. It shocked me, when she finally left home
for a residential facility, that she thrived in the company of patients equally
(or far worse) dinged.
Second, I worried that when I brought her home for brief visits that
Ruth would be choked up with nostalgia. I was shocked again to find that
she was wholly indifferent to her old home surroundings. Now—idiot—I
get it. Her brain no longer worked like my brain, so I had no inner com-
pass to estimate her thoughts and feelings. We w ere out of sync. What I
might experience as nostalgia, she didn’t, especially as Alzheimer’s grad-
ually blocked the neural pathways linking recognition, memory, and
emotion. On entering the house, Ruth would barely glance around be-
fore setting out to find Pounce the cat. Unfortunately, her cognitive loss
included losing the sense that warns us to watch out when cats pin back
their ears, so her visits home often ended in blood and tears as Pounce,
each time, whacked the hand that stroked her.
The dreaded day had eventually arrived, of course, when my transitive
waiting was at an end. It had occurred to me that, in my state of continual
exhaustion, it was very possible—and I cautioned myself against self-
dramatizing worst-case scenarios—that Ruth might one day wake up be-
side a corpse. It could happen. The thought spurred me to visit a few
local residential Alzheimer’s facilities. In bed one morning, I timidly

worked up the nerve to tell Ruth that I had visited a live-in facility. She
shocked me once more. Without emotion or spark of curiosity, she replied
in an even voice, “Can we go see it?”
Intransitive waiting implies waiting without an object, and I became
an expert at intransitive waiting. You didn’t wait for something, not even
for an imaginary or real Godot who never comes; you just wait. The el
derly residents at Ruth’s Alzheimer’s facilit y seem to me absorbed in an
intransitive waiting, with no object and no purpose as they slump in a
ragged semicircle of overstuffed chairs. Is waiting even the right term for
their motionless state? Or have they entered an almost timeless condition?
I don’t know—their demeanor seems so alien. A few residents will say that
they are waiting for a visitor, or waiting to go home. I’ll find them days
later lingering by the locked door, overcoat on. The staff knows better
than to correct them. Then I reflect that I, too, am waiting, intransitively.
There’s no one to correct me either. I am not waiting for anything—for
Ruth to get better (which won’t happen) or to get worse (which will).
I am on the go, like Psyche, busy visiting the facility e very day, taking
Ruth on hour-long walks, but this busyness has no real object, like the
unending tasks I perform, from scheduling Ruth’s hairdresser and taking
her out for (necessary) pedicures—nail salons an uncharted terrain—to
accompanying her through the emergency room, orthopedic ward, and
rehabilitation facility a fter unwisely prescribed antipsychotic drugs
caused a fall that broke her leg at the hip. (Dementia patients cannot follow
directions. Within days of surgery, she regularly escaped her wheel-
chair and paced the halls on a newly pinned femur in danger of splin-
tering.) My waiting may be disguised as busyness, but I am as powerless
as the elderly resident endlessly waiting by the locked door with her
overcoat on.
Waiting enfolds family caregivers in an almost invisible ethical dilemma
basic to medical eros. Eros is what drives us, expressed in affection for
the patient and in our deep desire to help, but eros is also what makes
our lives so confusing as, driven, we wait and wait. Is intransitive waiting,
paradoxically, our action? Or is it the absence of action? Such questions
tangled my intestines in knots, which is why I felt pleased later to find
theologians W. H. Vanstone and Henri Nouwen.35 In their writings,
both respond to the devaluations that depict waiting as passivity and

lost control: action delayed, deferred, or abandoned. Both writers, sur-
prisingly, offer an unequivocal affirmation of waiting. They regard inac-
tion (and especially objectless, unproductive waiting) as endowed with
moral value. Jesus is their model of intransitive waiting. In particular,
they point to the period, a fter Gethsemane, when his active ministry
concludes and Jesus almost passively hands himself over to the political
world. Thereafter, his ministry complete, he simply . . . waits. Vanstone
and Nouwen view the passiveness after Jesus has completed his ministry
not as disempowerment but rather as the relinquishment or abandon-
ment of an active, productive, purposeful role.
Medical eros might discover in waiting a hidden erotic affirmation of
life: life as affirmed and valued despite the absence of production, despite
the loss of activity. Such a revaluation of waiting would provide at least a
counterweight to the burden of self-reproach that so easily accompanies
the caregiver’s personal sense of loss and failure. An erotic revaluation of
waiting, however, f aces stiff resistance. Inaction has a bad name, and idle-
ness, if no longer a deadly sin, is now regarded as a prime capitalist
blunder in a world where time is money. It evokes the vaguely sinister
image of guys just hanging out on a street corner. Ad campaigns depict
even retirees as golfing, hiking, sailing, and partying (good consumers of
recreational activities) u ntil the golden sun goes down. No one, of course,
wants to see ads that feature pale, ailing, decrepit old folks slumped in an
arc just, as it may be, waiting.
Just waiting, however, is exactly what Vanstone and Nouwen revalue.
Their concern with well-being across the entire life span—including times
of sickness, retirement, and very old age, when significant action may be
physically impossible—imparts to waiting the same positive value that Ba-
taille sees in deliberate and excessive loss, as if the sheer objectless-ness
of intransitive waiting gives meaning to an otherwise pointless or dismal
state, time not just slipping away but disregarded or even squandered.
Ethics concerns not only right actions but also right values.36 Medical eros
might well insist that t here is ethical value in s imple waiting: not failure
to act but rather the gentle acceptance of unwilled inaction.
A gentle acceptance of passive inaction and of intransitive waiting goes
against the American grain, and I still struggle with it. S houldn’t I be
d oing something for Ruth? I sn’t acceptance another name for resignation,
despair, and surrender? Why should I accept the unacceptable? Medical
eros can help us address such questions, which fall outside the expertise
or even the purview of medical logos, even if eros can’t answer them in
every instance. In any case, whatever value medical eros might assign to
the intransitive waiting typical of Alzheimer’s disease must focus, as Lisa
Diedrich recommends, on failure and loss, especially the moral or psy-
chic state of being at a loss.37 Of not-k nowing. Such a focus includes more
than the patient’s lost health, failed abilities, or incomprehension. It im-
plicitly acknowledges the two-person, plural, or polygon structure of cer-
tain illnesses—in which caregivers too so often enter into a twilight state
of being at a loss: a condition of f ree-fall, vertigo, and not-k nowing. Care-
givers are new residents of an at-loss state. Their radical helplessness, de-
spite nonstop caregiving, links them with another set of cultural figures
who famously wait: lovers.
Lovers wait for the beloved, in at least a semitransitive state, but often
the objects of romantic love recede out of reach, desired but unattainable:
the bright stars of Keatsian longing, the return home or the return to health
for an Alzheimer’s patient. Eros and illness both tend to plunge the person
who waits—lover, caregiver, patient—into a passiveness where loss is the
only steady state, where wished-for objects recede endlessly in a hope-
less, imposed, intransitive waiting. Did Ruth truly want a dog? I, too,
want something, and I don’t know how to name it. Is it nameless? So what
else can caregivers do? I wait.
A gospel song that I heard after Ruth left home poses a question that
caregivers in part icu lar w ill recognize: “What do you do when you’ve
done all you can?” I often found myself at this impasse, out of options,
out of strength, empty. What do you do when y ou’ve done all you can? The
three-word gospel response: “You just stand.”38 Just standing doesn’t
sound impressive, but in the world of gospel music it cannot occur without
God’s help. It also embraces a radical acceptance that medical eros would
associate with divine love. The at-loss state of standing and waiting con-
stitutes a similar state of radical acceptance for the seventeenth-century
dissenting Protestant poet John Milton. In the famous sonnet on his blind-
ness, he asks how a poet without eyesight can still serve God. The re-
sponse: “They also serve who only stand and wait.”39 Standing and
waiting, nothing more, nothing less, signify for Milton an ethical state en-
tangled in loss—in failures beyond lost eyesight—which he regularly
represents in images of falling. Falling, for Milton, almost always contains
an implicit theological reference to The Fall. In Miltonic theology, to stand
thus also means to remain upright, to do your duty. To stand and wait
means—crucially—not to fall. More secular caregivers, such as I am, can
substitute their own highest values to be served in the paradoxical act of
inactive, objectless, upright, and no less devoted intransitive waiting.
“If you are uncomfortable with the implication of the erotic attraction
of a w oman at eighty,” E. S. Goldman reports, “—eighty-five as I write
this—suffer more: the sagging breasts, iconic of the destiny of an aged
woman, draw the surface of globes taut so that in the midst of physical
degradation the breast is as smooth as a bride’s. I did not abdicate the
nightly privilege of helping her undress u ntil a year or so ago, in her fourth
year of Alz, when an aide took over. I stand by.”40 Goldman’s account as
octogenarian caregiver belongs to an erotics of illness, and medical eros
might especially value in Goldman’s sweetly loving account its distinctive
concern with presence. Presence needs to be distinguished, as a moral
state, from witnessing. Witnessing—an important concept in trauma
studies and in palliative care—is an action: rational, teachable, even mea
surable as true or false (as in the concept of bearing false witness). Presence,
in its erotic inflections, differs from the act of witnessing. It is not quite,
either, the opposite of absence. It signifies being there, in the moral sense
of standing by in a fully embodied, deeply attentive waiting. Presence im-
plies an ethical state beyond reason, rules, or duties—an acceptance of
the often unspoken bonds that draw people together. It evokes various
meanings of not-to-fall: standing firm, taking a stand, standing by, ready
as needed. Presence means being there as distinct from doing something
or knowing something. It means, in its full moral implications, a stance of
nonabandonment.
Medical eros might regard presence or standing by as among the highest
goods in a new ethics befitting the flawed, depleted, failed, at-loss care-
givers who have run out of hope, run out of options, done all they can,
and now just wait. “Presence,” Goldman says, “is what counts.”41
It has been twelve years now since the blessing of the candles. So much
has changed. The cost that dementia incurs worldwide currently equals
over 1 percent of global gross domestic product.42 Such figures mean little
to the caregiver. Ruth no longer recognizes me. Waiting is now a strictly
one-sided expression of desire with no response possible: a situation
where there is nothing more, almost nothing, to lose. Still waiting. Med-
ical eros, in providing the basis for an ethics of loss and failure, can offer
help to caregivers for whom simply waiting, waiting without an object,
with no expectation, no purpose, just being there, has to be barely enough,
an upright (if brokenhearted) place to stand. Medical eros, too, can
remind caregivers and all who enter the kingdom of illness that their
dilemmas come with a silent history, and we are standing on the site of
an invisible conflict that defines us and the ground we stand on, much as
a Civil War battlefield recalls the unseen wounds that still define and
divide Americans. The individual experience of illness today, including
the hidden conflicts and confusions that grip both patients and care-
givers, owes much to a forgotten antagonism between medical eros and
medical logos, so any personal understanding to dispel confusion or any
f uture resolution of conflict requires a step back into the history of this
ancient, effortless forgetting.
Chapter Two
Unforgetting Asklepios:
Medical Eros and Its Lineage
Without Contraries is no progression.
William Blake, The Marriage of Heaven and Hell (1789–1790)
“H e ruins mortals and c auses them every kind of disaster.” So

Euripides writes of Eros.1 Eros as depicted by the ancient
Greeks embodies fearsome destructive powers that, simply put, can rip
your life apart. A late Latin romance, The Golden Ass (ca. 170–180 CE), offers
a seriocomic version of the same wanton, deceitful, destructive power, as
the author, Apuleius, describes Eros (now Romanized as the mischievous
boy Cupid) “rampaging through p eople’s houses at night armed with his
torch and arrows, undermining the marriages of all.”2 Roman and Greek
lyric poets agree about the betrayals and agonies coiled with the blandish-
ments of love. The lover, it appears, is almost set up not only for suffering
but also for diminishment and self-attrition. “Eros is expropriation,” as
classicist Anne Carson sums up the ancient lyric consensus. “He robs the
body of limbs, substance, integrity and leaves the lover, essentially, less.”3
Why then would anyone take a chance on eros? Puck, as an immortal
spirit, offers one solid answer in A Midsummer Night’s Dream: “Lord,
49
what fools these mortals be!”4 Eros, however, is far more than a sign of
human folly or even a dubious consolation prize for our death-haunted
mortality. Something e lse must be at stake. Eros, that is, regularly en-
codes an inherent doubleness. “Bittersweet” (glukopikron) is the poet
Sappho’s preferred epithet for eros, as Anne Carson emphasizes, and the
bittersweet mix of sensations perfectly captures an erotic duality that in-
cludes the power not only to ruin lives but also to fill them with delight
and exalt the lover to inexpressible, transcendent, and even (as in
Sappho’s famous ode 31) “godlike” heights. Eros, then, encompasses the
dual possibilities of total abjection and utter exhilaration, sometimes
compacted into a single night. “Use me but as your spaniel” (II.i.205),
Helena implores her turncoat lover, Demetrius, in A Midsummer Night’s
Dream; but once they have passed through the erotic chaos of the dark
forest night, it is the same inconstant Demetrius who suddenly an-
nounces that all his faith, virtue, and pleasure is “only Helena” (IV.i.171).
So it goes, red hot and ice cold, with eros. The doubleness within
eros, where eros embraces a roller-coaster range of contrary experience,
offers at least a useful model for thinking about the early history and con
temporary relevance of medical pluralism. It is a pluralism lived out in
ancient times through a simultaneous allegiance to the figures of Asklepios
and Hippocrates.
The god Asklepios and the mortal Hippocrates can stand h ere as iconic
contraries in the conflict between medical eros and medical logos. The
ultimate victory of Hippocrates and the triumph of so-called rational
medicine, for which he is so often cited as founder, make sense within a
positivist history of medicine. In this familiar narrative of scientific pro
gress, medical knowledge advances (leaving behind a primitive past
marked by superstition and religion) toward its ultimate goal of rational,
evidence-based, clinical biomedicine—in short, us. It is an appealing
narrative because biomedicine has made immense advances in eradi-
cating diseases and in curing illness. There is a significant error, how-
ever, in a positivist history of medicine that skews the past in order to
celebrate a steady, almost predestined triumph of science and of reason,
as if the mortal doctor from the island of Kos simply won in a knockout
over his slow-footed rival and ancestor, the drowsy healing god Asklepios.
U nf o rgetting A sklepi o s : M edical E r o s and I ts L ineage 51
It wasn’t so simple. For many centuries, the two classic icons shared
power.
Asklepios held a place in the ancient divine hierarchy just below the
twelve chief gods residing on Mount Olympus. Some sources regarded
him not as a god but a demigod, like Hercules, a h uman figure whose
achievements merited godlike status. Most, however, recognize him as a
god, and even as a demigod he could claim direct descent from Apollo.
The awe that Asklepios inspired had material as well as mythic backing.
Magnificent temple sanctuaries attested to his prestige, such as the famous
Asklepieion at Epidauros that boasted an immense ivory and gold statue
of Asklepios seated on a throne in Zeus-like majesty. Priests t here, as at
the other principal Asklepieion sites in Kos and in Pergamon, adminis-
tered expansive bureaucracies that included amphitheaters and offered
long-term accommodations. Treatments often began with ritual purifica-
tion and sacrifices, for both priests and patients, but the most important
therapeutic process was called incubation (Latin cubo, I recline). During
incubation, patients slept in the temple precinct, or abaton, awaiting a
dream contact from the god. The divine visitation might also come
through contact with the sacred temple snakes, an impressive nonven-
omous species four to five feet long.5 This dream-based, snake-mediated
therapy left some patients fully healed, as they attested in votive offerings
(such as life-sized terracotta casts of a leg or hand) hung on the temple
wall in thanks. The huge t emple complexes constituted a significant ma-
terial infrastructure that extended the power of Asklepios well into the
Christian era. Tertullian (ca. 155–240 CE), an early Church father, praised
Asklepios as proof that the medical arts were given by God.6
The magnificent statues, panoramic settings, crowds of rich pilgrims,
and shrines that w ere strictly off-limits to the uninitiated gave Asklepios a
presence in the ancient world that run-of-the-mill mythological figures
could not match. He was, simply, a great god, and his godlike temple com-
plexes stood as visible proof. The tenacious hold that Asklepios exer-
cised over ancient medicine extended, at least in popular belief, to a power
over death, as his biography gave rise to a powerful thematics of death
and rebirth. Asklepios, it was said, could awaken the dead. He was also
believed to have returned from the dead himself, a fter Zeus supposedly
killed him with a thunderbolt. Socrates, who served one term as priest at
the Asklepieion in Athens, said in his enigmatic last words that he owed
a cock to Asklepios—a statement that Christian exegetes read as affirming
a Socratic belief in eternal life.7
The high standing that Asklepios attained among the educated upper
classes is confirmed in the odd diary kept by a health-obsessed popular
Greek orator in the age of Nero, P. Aelius Aristides. Aristides had trav-
eled widely throughout Egypt, Greece, and Italy, often in search of health,
and in his autobiographical Sacred Tales he consistently addresses
Asklepios as Master, Savior, and Lord. “Great and many are the powers
of Asklepios,” he writes, “or rather he possesses all powers, beyond the
scope of human life. . . . It is he who guides and directs the Universe,
savior of the Whole and guardian of what is immortal.”8 Such claims sug-
gest why the new Christian apologists emphasized the role of Jesus as savior
and healer and why it was as late as the sixth c entury that the Asklepieion
at Kos finally fell into disuse—no doubt partly due to the campaign of the
Christian emperor Justinian to root out signs of pagan worship.
There are distinguished historians today who propose a nonpositivist
account of ancient medicine in which Hippocrates and Asklepios coexist
as equals. In this revisionist history, ancient medicine for many centuries
embraced an intrinsic doubleness—a medical pluralism—w ith Hip-
pocrates and Asklepios sharing power. Power sharing, however, is
rarely stable or equitable, and ultimately Asklepios (and medical plu-
ralism) dropped from memory with the triumph of biomedicine. T here
is nonetheless ample reason to reject the standard positivist narrative of
a Hippocratic knockout blow b ecause the model of ancient pluralism,
maintained over many centuries, remains a durable legacy applicable even
today. The legacy of an unofficial medical pluralism survives alive and
well, for example, in modern rural folk medicine or within immigrant
communities, where people who remain largely outside the biomedical
orbit may also make irregular visits to primary care providers, purchase
over-the-counter medications, and consult osteopathic surgeons. Among
Native Americans, medical care often includes both tribal healers and
Western doctors. In affluent suburbs, where f amily doctors are a household
staple, shopping malls are also well supplied with acupuncturists, herb-
alists, and homeopaths.
Hippocrates rightly deserves his title as the founder of rational medi-

cine, or medical logos, but, in a more comprehensive medical genealogy,
Asklepios has every right to assert his former eminence as a power-sharing
partner in healing. I would argue that Asklepios also merits renewed con-
sideration as the unacknowledged founder of medical eros. Their shared
power as a model of medical pluralism, however, truly becomes available
for contemporary thought only after we unmask and reverse the histor-
ical campaign to all but erase the memory of Asklepios.
Illness as Intoxication
Anatole Broyard, the longtime book reviewer, columnist, and editor at the
New York Times, found to his surprise that his imminent terminal illness
was bound up with the double-edged bittersweetness of eros. A diagnosis
of inoperable prostate cancer sparked in him an improbable erotic eleva-
tion of spirit so intense as to resemble the euphoria of falling in love.9 He
calls this response, which he did not anticipate, an intoxication. His ex-
perience cannot be dismissed as wholly eccentric, however, because it finds
parallels elsewhere, as we w ill see. Perhaps it is only his open confession
and wholehearted embrace of erotic intoxication that proved extraordi-
nary. His essays collected (posthumously) u nder the title Intoxicated
by My Illness (1992) both describe his encounter with medical eros and
suggest the value in revisiting its now-forgotten classical progenitor,
Asklepios. Broyard’s account of his prostate cancer affirms erotic values
that biomedicine, in its allegiance to the scientific method and to ethical
norms of professional conduct, does not simply deny, avoid, or forget but
actively represses.
The profession-wide repression of eros constitutes a specialized form
of forgetting that not only forgets how illness intersects with desire but
also forgets that it has forgotten. The forgetting moreover is culture-wide
because biomedicine now dominates how most people in the developed
world think and feel about illness. Broyard disconcerted his visitors as
they arrived to offer consolation and found him, unexpectedly, so cheerful
that they attributed his strange upbeat state to uncommon courage. “But
it has nothing to do with courage,” Broyard countered, “at least not for
me. As far as I can tell, it’s a question of desire. I’m filled with desire—to
live, to write, to do everything. . . . W hile I’ve always had trouble con-
centrating, I now feel as concentrated as a diamond or a microchip.” 10
Desire, for Broyard, does not refer to the concept that classical philos
ophers so often warned against as suggesting an insatiable lack or gap,
like a leaky bowl, nor does he share their sometimes contradictory view
that regards desire as therapeutic.11 His was a personal eroticism, more
in the manner of William Blake, and he viewed desire as an abundant,
transformative energy inseparable from sexualized excess. Anne Carson
adds the important point that Greek lyric poets describe the lover’s de-
sire less as passive, unfulfilled longing—the sign of a voracious lack—than
as an active force capable of transforming the lover who desires: it can offer
access to a previously unknown or undiscovered self.12 Contemporary
writer and filmmaker Chris Kraus, narrating her own erotic obsession,
observes that desire is not about lack (as in the absence of the beloved) but
about a newfound “surplus energy.” 13 Desire, perhaps like surplus energy
rushing into (or out of) the gap left vacant by material and psychic
absences, cannot guarantee zones of safety. It exposes almost everyone
whom it touches to an unfixed experience of free-floating intensities
where selves and relationships are always at risk—in danger of total
breakdown—but open as well to astonishing discoveries and to unex-
pected transformations.
Broyard too found that serious illness, like love, intensified desire in a
way that potentially transforms the self. Illness thus aligned him almost
automatically with the position of a medical outsider, a stance he enjoyed,
especially as he explored the freedoms of his new powers of microchip
intensity. Not only did his illness put him outside social conventions sur-
rounding the so-called sick role but it also conferred a new, wide-awake
immunity from sentimental condolences and heartfelt sympathies, which
his visitors imported from the world of everyday health. He was now the
psychic stranger who inhabited an alien realm—a realm given over to un-
known and newly savored sensations and desires from which the so-
called healthy world is shut out. “I remain outside of their solicitude, their
love and best wishes,” he wrote of his consoling friends. “I’m isolated from
them by the grandiose conviction that I am the healthy person and they
are the sick ones. Like an existential hero, I have been cured by the truth
while they still suffer the nausea of the uninitiated” (IMI 6).
Serious illness not only recruits and intensifies desire but, as Broyard
insists, it also revalues apparently renegade decisions that flow from de-
sire and run counter to prevailing biomedical wisdom. Broyard—the
ironized existential hero of desire, consistent with his early reputation as
a postwar Greenwich Village sexual legend—stands outside both med-
ical traditions and the norms of bourgeois life. “My urologist, who is quite
famous,” he writes in deadpan, “wanted to cut off my testicles, but I felt
that this would be losing the battle right at the beginning. Speaking as a
surgeon, he said that it was the surest, quickest, neatest solution. Too neat,
I said, picturing myself with no balls” (IMI 26). This breezy exchange
merits a slow-motion replay. Broyard, that is, rejected the best biomed-
ical judgment not because it was wrong but because medical logos failed
to recognize the importance that he attributed to eros in his personal, psy-
chic, and social identity. Medical eros, as Broyard offers his idiosyn-
cratic spin, does not reject logic or reason but rather enlists them in the
service of desire. “I knew that such a solution would depress me,” Bro-
yard continues, referring to his potentially testicle-absent state, “and I was
sure that depression is bad medicine” (IMI 26). It was not freedom from
medicine that he sought, but rather good medicine, which he redefined
as medicine in league with the powers of eros.
Prostate cancer for Broyard, attacking a home territory of eros, was al-
ways more than a threat to the body. As he writes in a meaningful
double-entendre, “When the cancer threatened my sexuality, my mind
became immediately erect” (IMI 27). Illness as it intensified his desire also
reorgan ized how he thought and felt. He recalled how the pursuit of a
sexual liaison once focused his energies almost like (to cite his own image)
a visionary experience. “Yet when I read about sex now,” he reflected from
the demystified stance of serious illness, “it seems to me that w e’ve sur-
rendered too much of that vision to the pursuit of orgasm” (IMI 28). Pros-
tate cancer, in his illness-centered view, is not just a matter of cells and
tissue damage, any more than sex is a matter of orgasm; bodies are in-
separable from minds, and minds are inseparable from eros and the inner
life. Eros here is not an addition to illness—an odd supplement, as when
tuberculosis patients experienced heightened sexual feelings and a typ-
ical “hectic flush”—but rather an intrinsic part of his illness. Prostate
cancer for Broyard was not about stirring up sexual hormones but about
firing up his psyche, which turned out to be inseparably linked to sexual

energies. “My libido,” he explained, as if to correct a biomedical mistake,
“is lodged not only in my prostate but in my imagination, my memory,
my conception of myself, my appreciation of w omen and of life itself. It
belongs as much to my identity and my aesthetics as it does to physiology”
(IMI 27). A 1974 collection of his Times reviews received the provocative
and punning title, no surprise to medical eros, Aroused by Books.14
Anatole Broyard will always remain something of a mystery: a black
man who lived in the headiest circles of East Coast intellectual life and
who chose to pass for white. He kept his racial identity secret even from
his grown c hildren—only his wife knew. Henry Louis Gates Jr. exposes
with a fine sympathy the paradoxes in Broyard’s artful self-f ashioning
during an era when racism in America meant that black skin, by default,
allowed the white world to define (and to confine) you. Illness, too, tends
to define by default. Broyard would not allow illness any more than race
to define him, as if he knew that racism and racial disparities in health
care have a dishonorable place in the history of biomedicine.15 Just as he
constructed an ambiguous racial identity that plays upon and subverts
the opposition between white and black, he constructed a personal ex-
perience of illness that does not reject medical logos (as personified in his
famous urologist) but also allows free play to medical eros and to the im-
peratives of desire. Prostate cancer became for Broyard the scene of an
extravagant high-w ire performance over the abyss—maybe an ultimate
work of performance art—in which imminent death adds its incalculable
erotic intensities. His embrace of eros in the grip of illness is far from
unique, and it offers one model for constructing a personal conjunction
of medical logos and medical eros. It also calls attention to a more than
accidental absence amid celebrations of Hippocrates and rational medi-
cine: the near-complete disappearance of Asklepios.
The Erasure of Asklepios

Asklepios, mythic son of Apollo and the putative founder of medical eros,
held a revered and preeminent status in the ancient world as “the healing
god par excellence.” 16 The cult of Asklepios at its height, as classicist
Bronwen L. Wickkiser puts it, reached “across the length and breadth of
the Greco-Roman world.”17 A savior-deity who, unlike the remote, aristo-

cratic, unpredictable Olympians, cared for everyone irrespective of class
or social status, Asklepios achieved such a reputation that even into late
antiquity he was the chief pagan competitor of Christ.18 His near total dis-
appearance constitutes a mystery with significant consequences for how
we experience illness today. It is an unusual mystery: it begins not with
discovering a body but—in a twist that might confuse Sherlock Holmes—
with the discovery that a body is missing. The missing body, in this
case, refers not to a person but to an entire medical legacy. The question,
then, is not who done it? Rather, what in the world is g oing on? How could
the chief pagan competitor of Christ—commemorated on coins, celebrated
in oaths, and worshipped in immense and impressive temple complexes
across the ancient world—simply disappear?
“One of the most impressive contributions of the ancient Greeks to
Western culture,” according to historian James Longrigg, in a version of the
positivist narrative, “was their invention of rational medicine.” 19 It is certain
that rational medicine ultimately won out over its indigenous competitors,
and it is certain that the invention of rational medicine in the Western world
can be credited to the Greeks. So far, Longrigg is correct. The triumph of
rational medicine, however, cannot be accurately represented as a clean vic-
tory for science, knowledge, and progress over religion and superstition.
Religion was inseparable from ancient medicine, as it was also inseparable
from civic life, governmental duties, and military excursions, which all in-
voked religious sanction. Medical practice among the Hippocratic doctors
thus required a delicate balancing act: rational medicine could oppose both
superstitious quackery and the medical high jinks of street magicians, but it
needed to make an accommodation with religion. Nonetheless, even with
such crucial revisions to the positivist narrative, no one is more important
in the redirection of ancient medicine than the mortal, empiricist physician
from the Greek island of Kos, Hippocrates.
Hippocrates (ca. 460–370 BCE) attained such eminence as a medical
practitioner in the age of Pericles that he justly receives credit for intro-
ducing an understanding of illness as based in a systematic, empirical
knowledge of the body. Although scholars no longer regard him as sole
author of the so-called Hippocratic Writings, a collection of medical tracts
by various hands, it is Hippocrates through his example and through his
eminence who stands as the official precursor of medical logos and as the
distant father of contemporary biomedicine. To later ages, he comes to
embody human reason and scientific medicine in their demystifying re
sistance to prerational magic, myth, superstition, quackery, and unreason.
His victory and veneration are so complete that busts of Hippocrates t oday
regularly adorn multiplex medical centers, celebrating not only modern
rational medicine but also the positivist narrative that it sponsors, which
explains illness and affliction, as medical historian Roy Porter puts it,
“principally in terms of the body.”20
Hippocrates justly receives credit, then, for establishing medicine as a
body-centered, empirical practice and as a rational field of knowledge,
leading to the scientific study of interior h uman workings through the
now-famous nineteenth-century “clinical gaze.” In providing the basis for
contemporary biomedicine, Hippocrates thus provides a classical pedi-
gree for the rational, materialist, biological, evidence-based understanding
of illness that I am calling medical logos. Medical students today are
trained, tested, and evaluated as scientists and technicians of the h uman
body. Communication skills, empathy, patient care, and bedside manner—
as distinct from differential diagnosis and treatment—take second place.
The legacy of Hippocrates thus finds continuous reinforcement in a pri-
mary commitment to rational analysis, biological sciences, evidence-based
practice, and a body-centered clinical gaze, as if there were no other
training possible for an accomplished physician. Non-Western traditions,
indigenous practices, and homeopathic approaches that fall outside the
dominant biomedical paradigm simply do not merit full institutional re
spect, and Hippocrates assumes his eminence by virtue of an historical
process that not only affirms the supremacy of rational medicine but also
buries Asklepios in an oblivion where all that survives, if anything, is just
a name.
The triumph of rational medicine, as I am arguing, occurred only after
centuries when Hippocrates and Asklepios coexisted in a forgotten or
misremembered medical pluralism.21 Hippocrates very likely trained at
the impressive healing complex at Kos called, as all such complexes were
called, the Asklepieion; originally no more than a grove or glade regarded
as sacred, soon it developed into a sprawling hilltop installation with views
stretching seaward toward Asia. The Asklepieion was generally located
outside city walls in settings where springs, vistas, and foliage made nature
a participant in the rituals of healing. Hippocrates the Asklepiad was the
formula that Plato and other contemporaries use to describe the famous
doctor from Kos, and the Hippocratic Oath begins by invoking Apollo
and his son Asklepios. Most early physicians referred to themselves as Askle-
piads, and numerous patients made extended pilgrimages to the Askle-
pian t emple complexes, often spending weeks or months in residence and
leaving behind material signs of their gratitude to the god. What made
Asklepios such a formidable presence in the ancient world? A full answer,
I suspect, suggests how his legacy might make a significant contribution
today toward a renewed understanding of the powers of medical eros.
Asklepios matters less because of his eminence in the classical world
than b ecause his near total disappearance prevents us from recognizing
what the powers associated with his name contributed to the pluralism
of ancient medicine. In the ancient world, even long after the advent of
Hippocratic or rational medicine, in practice a two-tier system prevailed.
Patients would consult both Hippocratic doctors and Asklepian priests,
much as today many people consult both primary c are physicians and
therapists who practice alternative modes of healing. The Asklepieion
moreover accepted patients with chronic and incurable illnesses that
Hippocratic doctors avoided—the advice to avoid such patients was spec-
ified in writing—and in practice both the Asklepieion and the Hippocratic
doctors often recommended identical or quite similar therapies that em-
phasized exercise, purgation, and dietary restrictions. Reason, then, had
little more to offer than did dream therapies, and Asklepios meanwhile
welcomed patients whom the Hippocratic doctors shunned.
Asklepian dream-based therapies, especially as they w ere quite sim-
ilar to reason-based Hippocratic recommendations, did not strike the an-
cient world as irrational. Dreams held a sanctioned status (ever since the
time of Homer) as a portal to revealed truth. Some dreams, of course,
could be deceptive, so caution was required, much as reason too could
go astray. Some dreams were regarded as truthful, however, and truthful
dreams (like official omens and auguries) belonged to an authorized
system of communication with the divine that was as intelligible to skilled
interpreters as, say, semaphore is today.22 In effect, ancient medicine was
concurrently (without self-contradiction) both rational and religious. It
had ample room for both the rationalist Hippocrates and the dream god
Asklepios.
The cult of Asklepios is arguably as significant to the history of medi-
cine as are the theories in the Hippocratic corpus, and for centuries the
two healing traditions coexisted comfortably. As historian Vivian Nutton
puts it, “For a doctor to reject Asklepios and his healings might also be
for him to reject the very t hings for which medicine was thought to stand.
In this way religious and secular healing reinforced rather than opposed
each other.”23 The Hippocratic writers, pagans as well as budding clini-
cians, felt comfortable embracing a polytheistic cosmos, and Asklepian
medicine had already won institutional status, unlike the magicians in the
marketplace who sold nostrums to the gullible public. Thus, the ongoing
struggle between rational medicine and magical quackery did not taint
Asklepios, who held the stature of a god, and the Hippocratic writers by
declaring themselves Asklepiads cagily invoked his authority and power.
Asklepios thus remained a revered figure, remote in the divine power em-
bodied in the marble, gold, and ivory Zeus-like statue at Epidaurus, but
also he was an everyday presence depicted on the ancient coins that cir-
culated his image for over 700 years.24
Asklepios and Hippocrates: The Traces of Eros

The contrast between Asklepios and Hippocrates, despite the medical
pluralism that brought them together in the ancient world, in one respect
could not be clearer. Hippocrates understood illness through a reason-
based knowledge of the body and through the empirical study of disease;
Asklepios cured through dreams, in temples, and through firsthand
contact with divine power. The contrast between t hese two very dif
ferent ways of understanding illness is captured in visual representations
that help to illuminate the alternate values at stake. The comparison
(which unjustly pairs images from widely different periods) cannot be
more than illustrative—apples versus mock oranges—but the contrast
helps to emphasize how Asklepios and Hippocrates embody a radical
difference that extends to their implicit relations to eros.
The archaic Greek statuette of Asklepios (Figure 2.1) depicts a young,
faunlike, sexualized figure still close to the natural world, accompanied
by his totem snake and woodland rod. In stark contrast stands the older,
intellectual, urbanized Hippocrates (Figure 2.2).
The difference is striking in other respects as well. Thick curly locks
and a muscular torso give Asclepius adolescens (to use the Latinate, art-
historical term) a youthful, sexual presence. Even when represented in
manly middle age, Asklepios exudes a bearded, majestic, erotic power. Im-
ages of Hippocrates, by contrast, usually depict him as old and bald. Bald-
ness became almost a visual signature for Hippocrates, prominent enough
to require comment: one ancient text offers seven separate explanations
Figure 2.1. Statuette of Asklepios. 100–200 CE. Marble. National Archaeological

Museum, Athens. Copyright © Hellenic Ministry of Culture and
Sports / Archaeological Receipts Fund.
Figure 2.2. Hippocrates. Undated statue (Enlightenment Era?). Image courtesy
of The National Library of Medicine, Washington, DC.
for the trademark felt cap (or pilos) that covered his bare crown.25 The
undated statue h ere is likely from the l ater European Enlightenment, but
its representation is entirely traditional and telling. The old, bald, stu-
dious Hippocrates stands finger-to-cranium, like an icon of deep thought,
suggesting how easily the eighteenth-century Enlightenment and its heirs
assimilated Hippocrates and rational medicine within the heady reformist
agendas associated with such intellectual enemies of superstition and
friends of reason as Voltaire, Kant, Pinel, and Jefferson.
The contrasts keep proliferating. B ecause Hippocrates came to stand
for a medicine based in reason, medieval illustrations regularly associate
him with scholastic philosophy, often showing him with a manuscript or
scroll in his hands. The scroll also links him with literacy, writing, and
the entire Hippocratic corpus. Asklepios belongs instead to the preliterate
oral tradition, where the main texts are dreams, where snakes and dogs
embody divine healing powers, and where priests interpret the words of
the god as patients recount their dreams. Only in retrospect does the tri-
umph of Hippocrates appear inevitable. The Roman senate in 291 BCE,
to stop a deadly plague, voted to summon Asklepios from Epidaurus, and
ten senators brought the god, by ship, in the body of a large snake. The
poet Ovid recounts the solemn event, and Romans chose the holiest
date in their calendar, January 1, to dedicate the foundation of their new
temple to Asklepios.
Asklepios, no matter if embodied in a large reptile or depicted as a
sensual demigod, holds a place of honor and answers to basic h uman
desires for healing. He gestures t oward a sacred space: sanctuaries of a
divine healing power. It was a gesture that heirs of the new guild-centered
Hippocratic tradition—with apprentices bound by oath in order to pre-
vent defections—needed to forget.
The forgetting of Asklepios did not require a showdown or a conspiracy
but simply the advancement of science and the relentless triumph of a
medical ideology that t oday finds expression in the molecular gaze. Ra-
tional medicine in its historical push for legitimacy needed to shed
Asklepios, the barefoot nature god, who entered Rome in the body of a
snake and cured through dreams. The ideological erasure is comically
obvious in an Enlightenment engraving (Figure 2.3) designed to celebrate
the new reformist ideals of medical progress.
Figure 2.3. Hygieia stands before a pyramid engraved with the
names of famous figures in the history of medicine.
Etching by B. Hübner, 1777. Wellcome Library, London. (CC BY 4.0)
Hygieia, the mythic daughter of Asklepios, stands beside a pyramid

engraved in descending order with the g reat names in medicine: Hip-
pocrates, at the apex; then Galen and Vesalius; right down to celebrated
contemporary doctors t oward the base. Patricide is rarely performed by
daughters, yet imagine the ideological gall or willed forgetting required
to recruit the daughter of Asklepios for the purpose of endorsing a new
medical genealogy that begins with Hippocrates—the man of reason and
science—and completely erases her father’s memory.
What matters most here is that Asklepios maintained an unofficial
connection with eros, while Hippocrates kept a professional distance.
The Hippocratic oath expressly forbids its followers to engage with
their patients in “sexual contacts” (aphrodisionergon).26 The erasure of
Asklepios thus corresponds to a wider forgetting. Evidence confirming
the close link between Asklepios and eros, if not obvious in the faunlike
archaic statuette, requires gathering scattered sources. A woman named
Nikesibule attests that Asklepios came to her in a dream, in which she
copulated with his totem snake, giving birth within a year to twin boys,
so Asklepios certainly shares some ground with eros as a fertility god.27
Among the votive offerings preserved from the Asklepieion in ancient
Corinth are images representing male genitalia as well as female breasts,
ovaries, and uterus.28 Physician Rachel Naomi Remen reminds medical
students that Cicero describes a statue of Venus in the central courtyard
of Asklepian temples, and the second-century Greek doctor Pausanias
reports that the magnificent Asklepieion at Epidaurus included in its ro-
tunda a picture of Eros.29 Perhaps most significant: it is a physician,
Eryximachus, who in Plato’s Symposium proposes eros as the evening’s
sole topic. “It’s from medicine, my own area of expertise,” he says, “that
I’ve realized how great and wonderful a god Love [Eros] is, and how his
power extends to all aspects of human and divine life.” The essence of
medicine, Eryximachus instructs his fellow symposiasts, “is knowledge
of the forms of bodily love [somatos erotikon].” It is Asklepios, “our an-
cestor,” to whom he attributes the crucial discovery that “eros regulates
the principles and processes of medicine.” Medicine, Eryximachus de-
clares, evoking its erotic lineage in a spasm of implicit self-regard, “is
wholly governed by this god.”30
The Resurgence of Medical Eros

“His erection startled me.” This sentence opens a memoir-like essay by
physician-poet Rafael Campo.31 When he was a young intern in a San
Francisco HIV / AIDS ward, one of his patients was a preoperative male-
to-female transsexual, whom he calls Aurora. Aurora had advanced-
stage disease, but their regular encounters concerned more than medical
matters. Campo, then living as a closeted gay doctor, disapproved of
Aurora’s over-the-top colorful costumes, dazzling cosmetics, and kitschy
seductions expressing an uninhibited, self-confident freedom. She liked
to tease the straitlaced, somewhat puritanical, and monogamous gay
intern with comments that hovered between pop psychotherapy and erotic
play. “I know y ou’re in t here,” Aurora teased Campo, safe b ehind his
screen of medical duties, as he “mechanically” performed the examina-
tion, concealing his unease both with Aurora’s promiscuous lifestyle and
with his own erotic self-denials (DH 30). Aurora’s erection that startled
him called attention not only to the antisepsis of the hospital setting, where
eros has no place, but also to his own sexual confusion.
Campo’s visits with Aurora expose what he comes to regard as a mis-
taken view of medicine (the view he held as a young student) in which de-
sire is the outlaw. “I began imagining myself as the model physician,” he
writes of this early self, “for whom desire was forbidden and in fact re-
pellent” (DH 21). This medicalized rejection of desire, he decides, served
as a convenient defense against his own growing sexual interest in men.
The Hippocratic ideal of a physician who swears off “amorous acts” with
patients—which seems a wise, rational, professional decision—fails to
capture the mixed sense of loathing and of fascination implicit in Cam-
po’s earlier view of medical desire as both forbidden and repellent. His
continuing medical education, thanks to Aurora, brought him face-to-face
with the dilemma of his own sexual identity and with larger, related ques-
tions about the place of desire in medicine. His ultimate open self-affirmation
as a gay Latino doctor (and poet) depended crucially on a recovery of
desire. Desire, Campo acknowledges, is precisely what he had blocked
both in his self-formation as a physician and in his own erotic life. Medical
logos, in its sometimes wise rejection of desire, may also at times fail
doctors as seriously as it fails patients. The turning point in Campo’s

transformation both as a doctor and as an openly gay man came through
his daily, developing encounters with the flamboyant Aurora.
Desire, as the key to Campo’s self-transformation, does not emerge
without struggle. Aurora’s comfort with eros initially frightened him, but
even fear did not prevent Campo from valuing her vitality, excess, and
sheer nerve. Nonetheless, he continued to ward off emotional awareness
with the respectable talisman of medical professionalism: overwork
and self-denial. “I was too busy,” he explains, “to give much thought
to what I had felt; my job was not to feel but to palpate” (DH 30). A
doctor palpates by pressing on the patient’s body in aid of diagnosis, but
“feeling” implies an emotional engagement. Aurora, of course, was riding
on an unstoppable trajectory toward death. Neither her campy, playful
seductions nor the welcome visits of the young closeted intern could
delay the relentless progress of HIV / AIDS. On one routine visit, which
changed him forever, Campo arrived to find his patient almost immobile:
“her face stripped of all her glittery makeup, expressing not recognition
but a deeply subterraneous pain.” Frantically, in his role as physician, he
listened to her heart and lungs. Whatever medical data he gathered
through the stethoscope about possible blockages in respiration or blood
flow did not register as primary. His own blockages were what he finally
began to recognize: “I heard my own stifled desire surface for air in my
long sobs” (DH 32).
Stifled desire is not a professional requirement in medicine. Medicine,
however, if it does not entirely block or deny desire, redirects it toward
sanctioned professional goals such as work, altruism, money, and power.
These commonplace objects of desire seem so widely approved as to con-
stitute almost desire-free self-evident goods, like air or water. It is as if
our culture already desires such goods for us, automatically, so that (alien-
ated from our own desire) we focus on rational, instrumental means to
obtain whatever our culture desires us to desire. Campo’s experience with
Aurora, in its unwilled transgression of professional norms, unexpectedly
affirmed his own direct, unalienated desire. It did not lead him to reject
the Hippocratic abjuration of sexual contacts or amorous acts (aphrodi-
sionergon). “Many doctors must fall in love with their patients,” he
speculates, “though far, far fewer would likely dare to admit it” (DH 25).
Admitting desire, however, differs from acting upon desire; a dmitting

desire differs from stifling desire. The medical inadmission of eros, as
Campo now sees, entails harmful self-denials and even self-betrayals—
which extend, in his case, to the crippling disavowal of his own profes-
sional and personal identity as a gay doctor. It is this medical flight from
desire that, as Aurora brought him to realize, limits or subverts his ef-
fectiveness as a physician.
Modern medicine, in its contact with the body, mostly serves an almost
ascetic denial of desire. Doctors, as Campo put it, palpate rather than feel.
My physician f ather liked to recall that the stethoscope originated in
France in 1816 because its inventor, physician René Laennec, felt uncom-
fortable placing his ear (to listen to the lungs and heart) directly on a
woman’s breast. 32 Moreover, doctors are notoriously poor at self-care,
which depends on feeling as well as on medical skill; my father burned
out his body in the care of patients. It is medicine’s intimate contact with
the body during trauma and serious illness, paradoxically, that also al-
lows Campo to make contact with his own feelings and desire—helping
him give better care both to himself and to his patients. As his experi-
ence suggests, a medicine that deliberately ignores, denies, or stifles
desire also implicitly disregards the fullest range of human function,
including the emotional inner life of the body. Medical eros, if it believed
in credos, would assert that desire matters. Desire matters—as a truth of
the body and as a fact of the inner life—as much for doctors as for patients.
The dangers always inseparable from desire are often less worrisome
than the consequences that follow from a denial of desire.
Aurora died l ater the same day. It is worth paying attention to the bodily
relation among sobs, breath, and desire as Campo listens to her chest.
Eros calls inner life into play, as Bataille insists, but it is an inner life evoked
in and through the body. The medical body, always more than a cultural
construction, is understood as an intricate, interlaced, biological system
of organs, fluids, heartbeats, and respiration. A neurobiology of electro-
chemical flows and synapses underlies even such cerebral and culturally
inflected desires as a longing for swimsuit models, fast cars, or luxury va-
cations. Campo describes Aurora’s impact in a long, lyrical, penultimate
paragraph where the memory of her qualities—qualities inseparable from
her bodily life—now somehow enters into his own bodily life, almost as
easily and as invisibly as desire engages our thoughts and moves our feel-
ings: “I find her voice in mine, like a lover’s fingers r unning through my
hair; my voice sounds warmer, more comfortable to me now. I discover
her hands on my own body when I examine a person with cancer, or
AIDS, searching for the same familiar human landmarks that bespeak
physical longing and intimacy. Her glorious eyes return to me when I fi
nally see someone for the first time” (DH 32). Seeing someone for the first
time, as physicians do on a regular basis, differs from, for the first time,
“finally” seeing someone. Desire for Campo is what allows him to recog-
nize patients and to see himself in a way that far exceeds the norms of
professional knowledge. Desire is both what drew him to medicine and
what helped rescue him once he became a physician, as Aurora finds daily
presence in his altered voice and hands and eyes.
Virginia Woolf and Audre Lorde, writers separated by age, race, and
nationality, offer additional support for believing that the triumph of med-
ical logos entails significant loss and that eros has a crucial place in the
medical encounter. Neither Woolf nor Lorde makes a claim for medical
eros, of course, at least not by name, but both recognize that biomedicine
has established its dominance largely through the work of physicians for
whom reason and science are regarded as the only appropriate tools. It is
hardly surprising, in retrospect, that two independent, creative women
in the role of patients feel at odds with the dominant medical system and
adopt strategies of resistance: resistance that Woolf expressed indirectly
in her writing through irony, metaphor, and misdirection, and that Lorde
expressed far more directly in a language of excess, transgression, and
defiance. They both stage a feminist or proto-feminist poetics of desire
in order to assert, finally, a healing role for eros in illness.
Audre Lorde in The Cancer Journals (1980) enters the arena of serious
illness equipped with a certainty about her sexual identity and an aggres-
sive antagonism toward social and medical norms that differ markedly
from Campo’s experience.33 She describes herself in The Cancer Journals
as a black lesbian feminist poet, an identity that embraces multiple es-
trangements from mainstream American life. In contrast to Broyard’s
ambiguous racial self-fashioning, Lorde celebrates her African heritage,
invoking as a personal mother-figure the South African creatrix Sebou-
lisa (CJ 11). Her experience of breast cancer, then, is inseparable from a
racial and sexual dissidence that extends to a political outlook familiar

in the 1970s, much as Susan Sontag’s opposition to military metaphors
(as applied to illness) coincides with her opposition to the Vietnam War.
Cancer, in threatening Lorde’s health, that is, also threatens her identity
as a black feminist writer. She actively opposes the silences, personal and
social, surrounding breast cancer, much as the brash, hardline direct-
action advocacy group ACT UP (an acronym for AIDS Coalition to Un-
leash Power) used aggressive guerilla-theater performances to give teeth
to their slogan that “silence equals death.” Lorde’s impulse, when threat-
ened, is to fight back. It is an unusual struggle nonetheless in which, es-
pecially through her open sexual embrace of other women, she discovers
the creative power of eros to oppose the inherent destructiveness of
illness.
Illness in its power for damage sets Lorde on a difficult journey in which
eros proves crucial in the re-creation of personal identity. Breast cancer
invisibly damages her sense of self as it visibly damages her body. While
recovering from a mastectomy, she openly longs for a return to “the old
me” (CJ 12). Like fellow writer Reynolds Price, however, she finds in
cancer a turning point. Her only alternative to a loss so complete that it
threatens to overwhelm both body and soul is a reinvention of the self.
This self-transformation entails, if unevenly, erotic affirmations that lead to
a hard-won sense of exhilaration, as if she has left an older, preliminary,
unfinished self b ehind. T here is soon no more talk of return to the old
me. Rather, “I feel like another w
oman,” she writes, “de-chrysalised” (CJ 14).
Such glimpses of emergence and renewal later, however, prove prob-
lematic. Cancer can be a disease of wild swings, with its progressive
natur al history matched by a personal history of emotional change.
At least for Audre Lorde, a new de-chrysalized self did not necessarily
remain stable, much as eros does not guarantee a smooth, steady, or per-
manent self-transcendence.
Lorde’s ultimate source of strength—far different from Reynolds Price’s
biblical inspiration to choose life—comes from her identification with a lin-
eage of w omen warriors, the one-breasted Amazons. The Amazon war-
rior offers her a potent alter ego, damaged but undaunted, courageous in
the face of enemies. Enemies, for Lorde, include medicalized social norms.
A prosthesis, in covering up the result of a mastectomy, strikes her as no
better than a lie. Many women will disagree, making different personal
choices that do not reduce to a preference for lies. While Lorde’s identi-
fication with one-breasted Amazon warriors adequately conveys her own
militant stance, it cannot completely describe her strategies of resistance
to cancer, which had to survive even intermittent episodes of soul-crushing
despair.
The Cancer Journals, in its stop-a nd-go, diary-l ike, uneven journey
through an ultimately fatal illness, nonetheless rounds at last t oward a
position in which the emergent figure with whom she identifies—never
assigned a name or abstract specific character—m ight as well be eros.
“Perhaps I can say this all more simply,” Lorde sums up, as if done with
the notorious changes and complications of illness: “I say the love of
women healed me” (CJ 39). Lorde credits her recovery—the recovery of
a whole new selfhood as much as her material healing—to an erotic force
not only outside medical logos but also outside any system of contain-
ment. In describing her hospital stays, she frankly explains her need to
masturbate, and she is equally candid about her sexual pleasures. She has
no interest in a Christianized caritas or agape that might substitute
compassion for pagan eros. She writes in an extended fugue about the
emotional and erotic relations with the women who helped in her healing:
Support w ill always have a special and vividly erotic set of image /
meanings for me now, one of which is floating upon a sea within a ring
of women like warm bubbles keeping me afloat upon the surface of
that sea. I can feel the texture of inviting w
ater just beneath their
eyes, and do not fear it. It is the sweet smell of their breath and
laughter and voices calling my name that gives me volition, helps me
remember I want to turn away from looking down. These images
flow quickly, the tangible floods of energy rolling off these women
toward me that I converted into power to heal myself. (CJ 39)
Healing, of course, differs from cure, and healing is crucial especially

when medical logos—as ultimately happened for Lorde—has run through
and exhausted its repertoire of curative therapies.
Lorde died of cancer in 1992, a decade after The Cancer Journals first
appeared, but her personal ring of support has since multiplied in w omen’s
centers, breast cancer clinics, and lesbian health initiatives, built upon an
initial ideology of women caring for women, although women’s health en-
lists professionals across the lines of gender. Eros still arouses distrust,
of course, especially b ecause, as Lorde says, “many of our best and most
erotic words have been so cheapened” (CJ 39). Eros, uncheapened and
rescued from silence, remains in her view a vital force for opposing ill-
ness. She stands with Anatole Broyard, Reynolds Price, and Rafael
Campo as contemporary writers who see eros not as a panacea or substi-
tute for biomedicine but as a crucial ally in the struggle against illness and
against an implicit, willful, prevailing medical obliviousness to the powers
of h uman desire.
Virginia Woolf in On Being Ill—published in 1926 as an essay and re-
vised for book publication in 1930—wrote in the generation before
Lorde, Broyard, Price, and Campo. Her endorsement of eros is less direct,
but she is no less transgressive as she systematically reverses the estab-
lished values associated with health and illness. Illness, for Woolf, alters
how we experience the world and introduces us to an extravagant realm
where ordinary rules no longer apply. Woolf, in fact, invents the ruling
metaphor that Susan Sontag made famous—illness as another country—but
unlike Sontag, who viewed illness as a biological condition fully reduc-
ible to the scientific knowledge of disease, Woolf describes illness as a
radically alien psychic state, irreducible to biology and opening upon a
strange landscape of excess, subversion, and unreason. Illness for Woolf
resists all efforts to demystify it or to reduce it to medical knowledge; its
otherness remains intrinsic and impenetrable. “The merest schoolgirl,
when she falls in love, has Shakespeare or Keats to speak her mind for
her,” she observes in a celebrated passage, “but let a sufferer try to de-
scribe a pain in his head to a doctor, and language at once runs dry.”34
Woolf set out to invest illness, in its resistance to language and in its
absence from literary texts, with a new presence and a new language ap-
propriate to its excess and uncanny otherness. Far from language r unning
dry, the opening sentence in On Being Ill runs on for an extravagant, tour-
de-force of 280 words. The Oxford Guide to Plain English cites research
indicating that the average English sentence contains nineteen words, 35
but plain English belongs to the world of health and reason and normal
life. Illness, according to Woolf, transports us, far beyond reason, into
an inherently excessive realm where ordinary language not only does not
run dry but also, on occasion, overflows its banks in verbal transgressions
that hold the power to expose all the illusions that underlie our everyday
lives in conditions of so-called good health.
Woolf’s multiple transgressions follow from her fundamental reversal
that identifies illness as ultimate closeness to truth. Health, in her reversal
of traditional values, emerges as a state of self-delusion, lies, and banali-
ties. The truth of illness, in this transvaluation, lies in its absolute fidelity
to the body and to its desires. For Woolf, the linguistic and conceptual
systems that normally guide us through life in health are absent from
illness. In their absence, illness confronts us with a familiar but newly
estranged and even scandalous figure: the body (“this monster”). The
body, grown monstrously present in illness, attains a material, imme-
diate, sensual state utterly withdrawn from the meanings, including
the medical meanings, that we usually superimpose on it. It is sheer
presence alone, material and physical, always in withdrawal from ordi-
nary life and its healthy pretenses. It relocates us in a flesh-centered
state where mind and intellect cannot maintain a bogus dominance,
where social abstractions such as duty and honor no longer rule, where
the consoling illusions and self-deceptions that sustain us in health are
exposed in their true and alarming insufficiency. Illness reintroduces us
to the topsy-turvy tangible world of the body, where the ruling power (no
matter how outrageous, excessive, nonsensical, and shamelessly pleasure-
seeking) is now . . . desire.
Illness, in Woolf’s subversive outlook, is firmly on the side of eros. Her
new erotics of illness divides humankind into two opposing groups, whom
she calls the upright and the recumbent. The upright (healthy but deceived)
go to work, build cities, establish empires, wield power, and define or-
thodox values: a patriarchal, imperial enterprise that Woolf depicts as
steeped in self-deception and illusion. Meanwhile the recumbent (enlight-
ened by illness) abstain from patriarchy and power. Not surprisingly, given
the gender inequalities built into the social system of Woolf’s generation,
the recumbent class is overrepresented by women, while the upright,
healthy, self-deceived movers and shakers are, of course, mainly men.
The bedridden invalid (Woolf’s female figure for illness) gains a deci-
sive advantage in her alienation from masculine reason and power: direct
contact with unalienated desire and unmediated access to truth. Illness,
in effect, introduces the invalid to life naked, raw, blunt, true, and unde-
fended by sentimental pieties. It confers a shocking irreverence: “There
is, let us confess it (and illness is the g reat confessional), a childish out-
spokenness in illness; t hings are said, truths blurted out, which the cau-
tious respectability of health conceals.” One instance? “About sympathy
for example—we can do without it” (OBI 11). Albert Camus would make
bleak truth-telling a mark of the existential hero, but for Woolf truth-telling
is not heroic, and heroism is one more masculine illusion, which she de-
flates by calling it as hollow as “the heroism of the ant or the bee” (OBI 16).
From the disillusioned perspective of illness, even sympathy is a form
of spurious feeling that the upright, healthy, male world overvalues pre-
cisely so it can be relegated to w omen: soft, weak, emotional, but, like
piano lessons, an acceptable female accompaniment for masculine power
and reason. Woolf’s invalid sees through the gender-driven ruse of sym-
pathy and of daily life, which she wholly rejects in favor of the body-
centered truths of desire. Desire is what the invalid prefers to reason, and
desire is what drives her into the outlaw realms of poetry and of love.
Illness thrusts the recumbent invalid (“outlaws that we are” [OBI 22])
into a territory where desire validates various forms of erotic transgres-
sion. The ill, in place of everyday prose statements, seek a new discourse—
“more primitive, more sensual, more obscene” (OBI 7)—open to unstable
ironies and to violations of syntactic rules. Much like Woolf’s trans-
gressive opening sentence. The outlaw reign of desire, for example, pre-
fers poetry and stories, which skirt the hoary, male dictum that writers
hold a mirror up to nature. The imitation of nature, from the perspective
of illness, is simply another regulation, sent down from the office of health,
while illness is life lived in full feeling with “the police off duty” (OBI 21).
Stories and poems, for the recumbent, not only break the rules but also
do no work. They transport us, like illness itself, to another country, an
erotic refuge of the inner life, where the recumbent citizens are free from
obsessions with reason, order, and linear, prosaic statements of what the
upright patriarchs call fact. Even worse: in their link with eros and de-
sire, stories and poems claim as their entire justification, if any justifica-
tion mattered, a w holehearted pursuit of pleasure.
Eros appears in Woolf’s essay mainly by indirection, which may be
the only way it could appear, given her radical views of illness and her
reluctance to engage in personal confession. On Being Ill, for example,

omits any mention of her erotic feelings for Vita Sackville-West. Love
and eros, however, obliquely govern her conclusion, which mirrors in
its run-on final sentence the extravagant length of her opening sentence.
The outlaw-ill in their choice of books, she asserts, reject Shakespeare
for Augustus Hare. Augustus Who? Woolf’s strange choice—Hare over
Shakespeare—is doubtless meant to scandalize serious readers, such as
the ultra-serious editor (T. S. Eliot) who solicited her essay. Augustus
John Cuthbert Hare (1834–1903) wrote numerous biographies and histor-
ical accounts of British upper-class life, not omitting castle ghosts, and
Woolf’s conclusion proceeds, Hare-like, with the extended synopsis of
an outdated novel about the upper-crust world of a fictive Lady Water-
ford. Hare, unlike Shakespeare, is pure escapist reading. Illness, how-
ever, has no tolerance for the high seriousness of Matthew Arnold, and a
taste for escapist fiction simply reinforces the fundamental importance of
pleasure.
Pleasure, as Woolf implies, holds an indirect but powerf ul relation to
eros. Her long synopsis of the Hare-like foolish novel thus closes as Lady
Waterford suddenly learns that her (numbskull) husband has died while,
of course, out fox hunting. All at once, everything changes. The aristo-
cratic world of Lady Waterford has schooled her in manners and in the
public denial of unladylike feelings. Eros, however, finds a way to infil-
trate and subvert even well-schooled, foolish norms. Woolf’s excessive
final sentence thus concludes with a telltale sign that eros (marking the
body and its uncontainable feelings) survives even our most well-mannered
efforts to regulate it. Publicly unbroken and with the dignity required of
an upper-class woman who must stifle desire, Lady Waterford receives
the news of her husband’s sudden death as she stands beside a velvet cur-
tain, which she holds with one hand and—in an almost imperceptible
sign of raw emotion—silently crushes.
Illness and trauma for Woolf have everything to do with eros and de-
sire. As she writes somewhat cryptically, illness “often takes on the dis-
guise of love” (OBI 6). She means, I think, that lovers (like invalids) must
often dissemble in order to maintain the truths of desire. Desire in its ex-
cess cannot always, in the social world constructed by health, take the
form of outward public display. It must assume a disguise in order to live
out the body’s forbidden truths. It is the inexpressible presence of the

body both as a sign of desire and as a conduit to the mysteries of the inner
life of consciousness, beyond all rational knowledge or social codes, that
for Woolf bonds illness inseparably with eros. Lady Waterford, even in
upholding the expectations of a perverse and confining social code, of-
fers an indirect tribute to how eros nonetheless holds a power to draw us
beyond disguises, beyond what is seen and done, beyond what is said,
and even beyond what is left unsaid—into alien, inaccessible regions of
the unknown and the unsayable.
A New Philosophy of Medical Knowledge?

“We need nothing less than a new philosophy of medical knowledge,”
writes Richard Horton, editor of the distinguished British medical journal
The Lancet. He specifically laments “a schism” in the understanding of
illness that divides patient from doctor.36 This doctor / patient schism in
understanding, if he is correct, doubtless involves multiple causes and has
no quick fix. One resolution, however, might lie in a twenty-first century
medicine that addresses and corrects the historical, epistemological era-
sure of Asklepios. It might lie in openly acknowledging the legitimate
claims of eros and its link to the inner life. Is a new philosophy of medi-
cine possible that recognizes the legitimate claims of both Hippocrates and
Asklepios? Perhaps it w ill take patients to supply the momentum for
change, in insisting that medical logos and medical eros are not binary
opposites, doomed to eternal conflict, but rather productive (or at least
potentially productive and forward-looking) contraries.
The signs of a schism are evident. Doctors, on the side of medical logos,
simply do not have a vocabulary or structure in which to value medical
eros, while patients too often simply internalize the values and beliefs
that they associate with biomedicine. A new and nonschismatic phi-
losophy of medical knowledge needs to place biomedicine with its in-
valuable Hippocratic legacy into dialogue with Asklepian medicine and
its erotic heritage. It is not necessary to imagine a merger, amalgamation,
or sham equality. Rather, each tradition with its built-in incompleteness
requires the other as a supplement and ally. Each tradition has distinctive
virtues, virtues called for perhaps at different moments and in different
degrees during the extended, changing course of illness. Partnership as

contraries, however, implies principles that do not reproduce the mutual
exclusion of logical opposites. Medical eros and medical logos, under-
stood in partnership as mutually supportive contraries, offer together a
pragmatic, if not strictly philosophical, platform from which to address
the schisms separating doctor and patient. Together, they let us under-
stand illness as both a biological and a cultural phenomenon, a condition
that involves desire as well as genes, that involves the inner life as well as
the life of the body—twin crucial elements of our well-being, like rain
and sunshine.37
A new philosophy of medical knowledge, if it can imagine a partner-
ship or dialogue of contraries, must also expand its concept of knowledge.
Scientific, empirical, statistical knowledge does not exhaust the relevant
range of knowing. Physician Rita Charon, as we will see, makes a strong
case for a necessary complement to logico-scientific understanding. She
calls this complement “narrative knowledge,” and such narrative knowl-
edge could well include an awareness of the dynamics of desire, especially
as desire plays out not only on the patient side of the bed but also among
physicians, where (as for Rafael Campo) it might take the inverse form
of a well-schooled stifled desire, or desire deflected and misdirected. D. H.
Lawrence, for example, writes a poetic goodbye to his “scientific doctor”
upon realizing “what a lust t here was” in the doctor “to wreak his so-called
science on me.”38 Surgeon Richard Selzer, a generation later, offers a sim-
ilar reading of desire misdirected. The great writing about doctors, he
asserts, w
ill be done only by a doctor “who is through with the love af-
fair with his technique, who recognizes that he has played Narcissus,
raining kisses on a mirror.”39 Narcissus, of course, never recognizes that
he is the victim of his own erotic self-absorption.
There are grounds for hope that a new philosophy of medicine, or a
pragmatic alternative to medical logos, is beginning to take hold. One sign is
a new interest by the medical establishment in Asklepios. Various organ
izations within medicine, including the American Medical Association
(AMA), had for years adopted as their defining symbol the classical ca-
duceus or winged staff of Hermes. Hermes, however, had no mytholog-
ical connection with medicine: his staff (with its two coiled serpents) was
likely confused with the rod of Asklepios, who also held a close associa-
tion with snakes, although usually only one snake appears coiled on his
trademark rod. The editors of The Oxford Illustrated Companion to Med-
icine (2001), after weighing the claims of Hermes and of Asklepios,
decided that the staff and serpent of Asklepios have “the more ancient
and authentic claim to be the emblem of medicine.”40 In 2005, the
AMA introduced a stylized new logo, and the official announcement
describes its new emblem as “more than just a visually pleasing take on
the Staff of Asklepios.” What, specifically, is this vague more? The new
AMA symbol, as the announcement continues, represents “many things
that are good about the profession and its organization, not the least of
which is continuity.” Then comes the truly groundbreaking clarification.
In an assertion of continuity with its Asklepian founder, the new logo
makes “a statement about the transformation of the AMA” and about
changes required in a “medicine for the 21st c entury.”41
A new medicine for the twenty-first century—which the AMA an-
nouncement invokes but does not describe—needs to take a solid stand
for medical pluralism. It must also be willing to take practical steps in the
direction that such a pluralistic partnership implies in pairing Hippocratic
and Asklepian contraries. It has to address the desires and the not-
knowing that so often accompany serious illness. Jennifer Glaser was
just twenty-four years old when her boyfriend was diagnosed with leu-
kemia. “Cancer works very hard to make life unsexy,” she recalls in a brief
memoir published in the New York Times.42 Desire plays an increasingly
crucial role in proportion as medical knowledge has less to offer. “We
flirted, canoodled, talked about sex, and had sex when he was sick
because, well, sex w asn’t death,” she writes. “It was the antithesis of
death.” A new twenty-first-century plural medicine must also find explicit
space for the uncertainties—the not-k nowing—that desire and illness en-
tail. Whatever such a twenty-first-century medicine comes to be, it needs
to reject both the obsolete positivist narrative in which rationalist Hip-
pocrates supplants the dream-god Asklepios and also the supporting bio-
medical ideology (really a form of narrative) in which logico-scientific
knowledge is the sole, unquestioned, highest good in the pantheon of
values that biomedicine has the power to establish and to revise. It needs
to consider, above all, how the experience of illness and the practice of
medicine almost inescapably coincide with eros, and how eros in conjunc-
tion with illness transports us into an uncanny nightside realm, where
the inner life is preoccupied by desire and where the single almost guar-
anteed experience is the experience of not-k nowing.
Chapter Three
Not-Knowing: Medicine
in the Dark
I am obliged to perform in complete darkness
operations of great delicacy
on my self.
—Mr Bones, you terrifies me.
John Berryman, 77 Dream Songs (1964)
E ros, in addition to his shape-shifting powers, no doubt speaks

perfect French. Writer, Jungian analyst, and activist Florida Scott-
Maxwell recalls a telling episode as she traveled in France before the
First World War. As she explains: “when the train stopped a m iddle-aged
woman entered the compartment accompanied by a distraught-looking
girl of perhaps seventeen who held a handkerchief to her eyes. The w oman
announced quietly but gravely and dramatically, ‘C’est l’amour.’ At once
the five or six other passengers rearranged themselves, leaving one side
of the compartment vacant. The young girl laid herself down at full length,
her head in her mother’s lap, a cloak over her, and softly sobbed herself
to sleep. The other passengers sat crowded in silent respect. A god had
struck, and it was best to be wary.” 1 It is not just the young who are
79
vulnerable to eros. Scott-Maxwell wrote her memoir in old age during what
she described as her surprisingly “passionate” eighties. Eros can lead al-
most anyone into passions that border on illness and even risk death. Amer-
icans over age fifty-five accounted for 5 percent of new HIV / AIDS infec-
tions in 2010 and constituted almost 20 percent of the people then living
with HIV infection in the U.S.2 Scott-Maxwell is right: best to be wary.
Eros is dangerous especially because the inner life of desire is inter-
twined with biology, including the biology of illness. Even prairie voles,
whose inner life remains unknown, are at risk. A female prairie vole (the
monogamous prairie vole Microtus ochrogaster, in particular) shows rapid
attachment to the nearest male when scientists infuse her brain with the
hormone oxytocin, which interacts with the same circuitry that in humans
produces both euphoria and addiction.3 Affective connections are equally
powerful in humans. The risk of a heart attack on the anniversary of a
bereavement is twenty-one times higher than normal. The risk of illness
and altered biochemistry seem closely entangled with eros, although we
manage to fall in and out of love (for the most part) minus trips to the emer-
gency room. Nonetheless, brain scans show that love or romantic feelings
activate cortical and subcortical circuits associated with motivation, re-
ward, and addiction, much as romantic rejection triggers circuits associ-
ated with a craving for cocaine. In one study, the mere picture of a loved
one reduced moderate pain in viewers by 40 percent.4 Perhaps such pro
cesses with their underlying neural networks contribute indirectly to the
appeal of pop m usic, with its insatiable appetite for lyrics that never
manage to get to the bottom of love. The complex, interconnected bio-
logical and cultural systems involved in love mean that eros, like an ap-
parently bottomless ocean or rift, confronts us with far more than we can
understand.
Eros, even simplified as romantic love, plunges us into a condition of
not-k nowing that is not necessarily debilitating: we don’t need to know
exactly what love is to experience its power. Isn’t love, asks the cultural
theorist and psychoanalyst Slavoj 2i3ek, the supreme instance of “an
enigmatic term”? An unknowable X? 5 Serious illness too involves an un-
knowable X. The enigmatic inner life of illness cannot easily be disen-
tangled from its biological correlates, but neither can it be fully contained
N o t- K n o wing : M edicine in the D ark 81
or explained as a phenomenon of bodies. Eros and illness at times share

a common language. “At mere sight of you,” writes Sappho in her famous
ode 31, “my voice falters, my tongue / is broken. / Straightaway a delicate
fire runs in / my limbs; my eyes / are blinded / and my ears / thunder.”6 The
lover, inflamed, goes almost instantly deaf, dumb, and blind. Trusted
senses betray us. Metaphors brush dangerously close to actualities. It is
a state that the ill, like the lover, may experience as truly death-like. “I
grow / paler than grass,” as Sappho’s final line confesses, “and lack little / of
dying.” 7 Eros and illness, not only in their brush with death, hold a power
to induct us into the ultimate, enigmatic presence of not-k nowing.
Not-K nowing and the Myth of Medical Knowledge

Suppose you are seriously ill. What do you most urgently need or desire?
What c an’t you do without? I would want the best contemporary clinical
knowledge—in short, medical logos. In valuing the best clinical knowl-
edge, however, I would make a serious mistake to undervalue medical eros
and the complexities (including possibilities for healing) associated with
not-k nowing. “I won’t know for a while what treatment, if any, I’ll need
next,” as I recall my friend Gail Lauzzana e-mailed after her breast cancer
diagnosis. “Another period of waiting to find out. Well, it’s a good lesson,
to live with the unknown.” Serious illness, her words suggest, almost re-
quires patients to live in a protracted state of not-k nowing.
Knowledge in medicine is the sovereign power. King Data rules. Knowl-
edge rolls into one massive ruling principle the medical equivalent of
state, monarch, constitution, imperium, and social contract. It is what con-
fers legitimacy upon doctors and upon the diverse group of health pro-
fessionals (from nurses to clinical psychologists) for whom doctors here
stand as surrogate. The implicit authority of modern biomedical knowl-
edge in effect backs up the physician like a reserve battalion. A practice
or claim in biomedicine without knowledge b ehind it simply has no standing.
The sovereignty of knowledge in medicine, however, may also serve as a re-
assuring myth erected by patients as much as by doctors. If we shadowed
a physician through a normal workday, we’d likely observe hunches,
jokes, missteps, empathic smiles, bursts of anger, fatigue, frustration, and
multiple gestures—w inks, hugs, handshakes, scrub-downs—where

knowledge is secondary.
Like the distinctive type of knowledge that the ancient Greeks called
phronesis, or “practical reason,” clinical knowledge often bears less re-
semblance to laboratory science than to old-fashioned, trial-a nd-error,
check-the-landmarks navigation.8 Still, the mythic sovereignty of knowledge
in medicine shapes not only the institutional delivery of medical care
(which drives fully one-eighth of the U.S. economy) but also the implicit
self-understanding of doctors and of doctor-educated patients. Surgeon
and writer Atul Gawande distills the myth into a statement of everyday
life in modern medicine when he explains, from his insider position, that
doctors tend to have “a fierce commitment to the rational.” If there is a
credo in practical medicine, he writes, apparently believing that t here
is, it attributes prime importance to what is “sensible.”9
Straw-man or mythic images of biomedicine as “all knowledge, all the
time” do not acknowledge the pragmatic suppleness of individual physi-
cians moving through a normal day, varying treatment options, for ex-
ample, to suit what they sense or know about individual patients. In
their books identically titled How Doctors Think, scholar Kathryn Mont-
gomery and physician Jerome Groopman describe everyday medical prac-
tice as punctuated throughout by tentative judgments, by practical
choices, and by the encounter with inescapable uncertainties.10 Trial and
error, in controlled settings, are basic to empirical knowledge. Nonethe-
less, biomedicine includes a built-in drive to reduce risk, to generate
sensible options, and to circumscribe uncertainties in the pursuit of
knowledge. Computers now provide automated estimates of risk factors
adjusted by age, gender, race, and f amily history. Knowledge as a goal and
achievement is already inscribed in the most basic terms of medical lan-
guage: diagnosis and prognosis both derive from the Greek root gnosis—
meaning knowledge.
Most patients wouldn’t have it any other way. You’re the doctor. This
clichéd expression of deference does more than state the obvious; it reflects
a patient’s implicit belief in the superiority of medical knowledge. Even
the cautious desire for a second opinion, as patients begin to understand
their new role as medical consumers, does not destroy a trust in medi-
cine as a body of knowledge. Patients still seek whatever opinion they
consider the most knowledgeable. Doctors, meanwhile, have strong in-

centives to embrace the ever-expanding biomedical database, including
a knowledge of the newest technologies, because professional respect,
board certification, and hospital privileges are among the valuable by-
products of knowledge. Anatole Broyard evidently liked knowing that
his urologist ranked as a “superstar.” (His urologist was so famous and
superior, Broyard claimed, that he barely spoke to his patients.) Biomed-
icine, as embodied in particular patients and doctors, values knowledge
so highly that it seems almost quixotic to make a case for not-k nowing.
Medical eros, however, requires that we question not only the sovereignty
of biomedical knowledge but also the neglected and devalued state of not-
knowing. “It’s only human to want to know more, and then more, and
then more,” says the narrator in Don DeLillo’s novel Zero K (2016), which
describes a secret compound where human bodies are preserved until fu-
turistic biomedical technologies can return them to health. “But it’s also
true that what we d on’t know is what makes us h uman. And there’s no
end to not-k nowing.” 11
Not-k nowing, as we enter into the nightside of life, is both so inescap-
able and so native to the experience of illness that we tend to take it for
granted, since physicians and patients usually share the common goal
of removing medical uncertainties and replacing them with knowledge.
Illness shares with eros the unsettling power to draw doctors, nurses,
patients, caregivers, friends, and family into a state of less than perfect
clarity. The not-k nowing native to illness, however, no matter how
temporary, not only remains distinct from ignorance but also holds a re-
spected status in the psychology of cognition and of creative discovery.
Montaigne gave the skeptical question what do I know? a philosophical
turn in which reason doubts both received authorities and its own op-
erations. Negative capability is a term that medical student and poet
John Keats invented to describe the fundamental artistic need to enter-
tain uncertainties, mysteries, and doubts without an “irritable reaching
a fter fact & reason.” 12 Donald Barthelme, a master of modern short fic-
tion, defines the writer as “one who, embarking upon a task, does not
know what to do.” 13 A hospital emergency department, of course, cannot
afford the luxury of philosophical skepticism or of endless poetic delib-
eration; not-k nowing in a medical crisis (where inaction risks death)
must give way to action. Yet, even surplus medical knowledge, as in the
pharmacopeia of competing drugs, can thrust doctors and patients, full
force, into the dim, uncertain twilight of not-k nowing.
Medicine in its commitment to the production of knowledge (knowl-
edge that it continually revises and updates) often gives little thought and
less respect to not-knowing, even when not-knowing is part of the journey
that leads toward new knowledge. (Willful, know-nothing ignorance is
simply malpractice in any endeavor.) Not-knowing as a state quite familiar
to patients as well as to doctors, even if less talked about, frequently bears
little relation to the production of knowledge. Illness, like the 41 percent
of the moon’s surface not visible from planet Earth, has its own intrinsic
dark side: mysteries of inner life that no Luna-3 mindcraft is likely to
map with certainty. This mode of not-k nowing—as basic to the experi-
ence of serious illness as it is to the erotic—may not produce distress; it
can simply imply a respectful openness to incomplete understanding. Un-
like systems of knowledge or reasoned analysis, it acknowledges a human
desire to encounter what lies just beyond the limits of h uman knowledge.
Eros, after all, regularly plunges off the deep end. It sees little more than
comic futility in reason-based lists of a lover’s good qualities and bad
qualities.
Paul Kalanithi, a talented neurosurgeon, was diagnosed at age thirty-
six with stage IV lung cancer. His remarkable memoir When Breath Be-
comes Air (2016), written during what he knew was an illness that he would
not survive, describes both his chosen medical journey to become a doctor
and his subsequent unchosen medical journey as a patient. He writes
with deep respect for the science-based biomedical knowledge basic to
his profession, but he understands too the limits of such knowledge and the
importance of human affiliations that extend beyond the natural histo-
ries of disease. It is his wife, Lucy Kalanithi, who writes the epilogue to
his unfinished book, explaining that he died surrounded by family in a
hospital bed close to the labor and delivery ward where their daughter,
Cady, had been born eight months earlier. “Science may provide the most
useful way to organ ize empirical, reproducible data,” Paul Kalanithi
writes in a measured tone that fully appreciates both the accomplishments
and the paradoxes of medical logos, “but its power to do so is predicated
on its inability to grasp the most central aspects of h uman life: hope, fear,
love, hate, beauty, envy, honor, weakness, striving, suffering, virtue.” 14
Illness, for doctors as well as patients, may always include an immer-
sion in doubt, uncertainties, ambiguities, and imperfect knowledge.
Not-k nowing also often encompasses the patient’s and the caregiver’s
crisis-born state—sometimes protracted until it feels like a native land—
of being at a loss: without bearings, disoriented, barely standing, all sys-
tems crashed. Paul Kalanithi repeats in his mind Samuel Beckett’s weary
self-contradiction (a tacit clip of inner life that I, too, silently recited like a
caregiver’s mantra) “I can’t go on. I’ll go on.” Illogic and self-contradiction
are among the disconcerting veracities that belong to the lived experience
of illness, where scientific reason and empirical data—despite their formi-
dable powers—reach the outer limits of what they can tell us and of what
we can know. It is nonetheless these exact same powers that are now rede-
fining a new age of biomedicine.
Medical Logos and the Molecular Gaze

“A threshold has been crossed,” writes Nikolas Rose, director of the BIOS
Centre for the Study of Bioscience, Biomedicine, Biotechnology and So-
ciety at the London School of Economics. The particular threshold he
refers to is what he calls “a molecular vision of life.” 15 Medical logos—
marked by its double-blind studies, peer-reviewed journals, grant agen-
cies, statistical probabilities, scientific methods, laboratory analysis, and
rational argument—certainly bases its power on the production of new
knowledge, as opposed to the unruly, indefinite, emotion-rich erotic de-
sires basic to not-k nowing. Medical logos places us within an era when
biomedicine (as the institutional practice of a molecular vision of life) holds
power over human affairs comparable only to the role of theology in the
Middle Ages. Unprecedented advances now mesh humans with machines
and with altered forms of life (from the genetically modified livestock we
consume to body parts manufactured from stem cells), propelling us rap-
idly into a cyborg era that some call post-human.16 Eros too has shifted
shape to keep up with the molecular vision. In 1954, the first h uman ex-
periments using oral progesterone gave birth to a breakthrough female
contraceptive; the Pill in effect helped launch the sexual, cultural, and
political revolutions of the 1960s, with which it is inseparable. New pills
have continued to alter erotic relations, as Viagra and its ilk initiate
molecular-level changes rippling across sociosexual bounda ries from
Idaho to Iraq.
All is not well, however, in the brave new world of the molecular vi-
sion. Eros too seems to be staggering in the porn-on-demand era of vir-
tual sex. Medical logos, despite its unparalleled institutional power and
its new threshold-crossing alliances with biotechnology, nuclear medi-
cine, and genetic therapies, faces serious and mounting discontent.
“Wherever I lectured,” writes surgeon and medical educator Lori Arviso
Alvord, “people would come up to me afterward and tell me stories of
their impersonal treatment by doctors, of problems getting appropriate
treatment through managed care programs, and of doctors or hospital staff
who had treated them insensitively. They felt powerless, often miserable
inside hospitals, stripped of their dignity.” 17 Alvord, who belongs to
the Navajo nation, knows firsthand the costs incurred when p eople are
stripped of their dignity. Western medicine, as historians have shown,
served imperial powers in the nineteenth century as an instrument useful
in delegitimizing native systems and in consolidating their hold over colo-
nized populations. The molecular vision of life, in addition to its eco-
nomic costs, may have h uman costs in colonizing patients that we do not
yet anticipate.
Contemporary doctors such as Alvord now lend their voices to a
growing rumble of discontent. “A crop of books by disillusioned physi-
cians reveals a corrosive doctor-patient relationship at the heart of our
health-care crisis.” So claims a sobering 2014 review article in The Atlantic
magazine.18 Physicians in the daily practice of medicine encounter de-
mands from sen ior associates, government bureaucracies, insurance
carriers, hospital administrators, and attorneys, to name a few, while
individual doctors also often work under pressure to generate specific
levels of income for departments or for group practices. Medical salaries
higher than the national average apparently do not ensure satisfaction,
professional or personal. Physicians as a group experience high rates of
burnout, alcoholism, and suicide, with the highest suicide risk awaiting
women physicians.19 “Physicians would tell me that they wanted doc-
toring to go back to the old ways, when they w ere known and trusted by
their communities and families,” Alvord writes. “They complained of
health care systems that require them to see a new patient every fifteen
minutes.”20 Of course, the old ways cannot survive unaltered in the age
of the molecular gaze. All professions adapt to change. Rapid advances
in biotechnology, however, while they have increased the speed and effi-
ciency of medical procedures and have vastly improved the management
of illness, seem to entail significant losses. Clearly, something has gone
wrong in the high-speed, digital arena of medical knowledge.
The molecular vision of life is no doubt partly to blame. New medical
technologies, while they increase access to information and speed up
care, perhaps encourage unrealistic or false expectations that doctors
will be as efficient and systematic as their machines, but—with the pos
sible exception of Andy Warhol, who wished that he could be a machine—
most patients and doctors resist assumptions that appear to reduce them
to the status of biological clockwork. Medical eros would make the ad-
ditional point that molecular biology, even when fully integrated into the
flexible daily practice of medicine, does not preclude a more inclusive
vision open to the inner life and to the mysteries of not-k nowing. Much
about illness and desire, in truth, remains unknown. The molecular
gaze, uncoupled from reductive or narrowly scientific concepts of knowl-
edge, holds at least one solid advantage for medical eros in demonstrating
that the ancient division between reason and emotion—a split unfortu-
nately reproduced in the biomedical flight from eros—is a longstanding
neurological mistake.
The time-honored binary opposition between reason and emotion
simply cannot survive research in cognitive neuroscience, which has
shown how the processes involved in feeling come to interpenetrate the
processes of reasoning—and vice versa—via complex feedback loops and
neural networks.21 Emotion and reason, while sometimes at odds, are also
often mutually supportive, rarely proceeding in absolute separation. Ra-
tional thought, as we will encounter later in discussing pain, is far more
fluid as a biological endowment than we see represented in analytic cal-
culations or in logical systems; it is open to modifying input from the
senses and the emotions. Feeling and emotion, in turn, are far from fren-
zied passions untethered from other modes of cognition.
Biomedicine certainly has e very right to uphold its chosen standards

of validity, and evidence-based medicine is a practice that most patients
applaud. A molecular vision of life, however, crosses only a single threshold.
Medical eros identifies an adjacent and connected threshold—not yet
crossed—t hat leads forward into a twenty-fi rst-century medicine that
validates erotic dimensions for which the biomedical evidence is already
strong. Medical logos and the molecular gaze may well remain fixed in a
commitment to evidence-based knowledge, but medical eros reminds us
that illness has its inherent dark side that resists microscopic mapping
and rational knowledge. Illness, even in the era of the molecular gaze,
places us in a world still shadowed by desire, where hope, fear, love,
hate, beauty, envy, honor, weakness, striving, suffering, and virtue still
interrupt the orderly progress of biomedical knowledge with their un-
predictable erotics of not-k nowing.
Medical Eros and the Fruitful Darkness

The worst error in a narrative that describes medical eros and medical
logos as potentially productive contraries would be an endorsement of the
Hollywood tradition in which the heart, a fter numerous tribulations, fi
nally triumphs over the head. Medical eros refers to complex powers of
desire originating deep in the brain, some hardwired in autonomic re-
sponses swifter than reason, but also recruiting complex experiences
of la vie intérieure inseparable from the modifying forces of culture.
These experiences invoke not only conscious modes of reflection but
also experience-based, nonconscious emotional responses that are some-
times eye-blink fast or as involuntary as a bad habit.22 Medical logos re-
fers to a similarly complex set of cerebral processes that we cannot shrink
down to a one-word noun, reason, the remnant of old-fashioned fac-
ulty psychology. Reasoning is a highly evolved, complex function re-
ceiving input from multiple brain systems and processing varied sensory
data, as it seeks to understand experiences that range from the philos-
ophy of Heidegger to night baseball. Even the vaunted credo of practical
medicine (“a fierce commitment to the rational”) contains a mild par-
adox in that fierceness must reflect an emotional engagement. “Why so
fierce, doctor?” The road through medical school is long, hard, and
paved with examinations. The desire to heal, however, as Rafael Campo

insists, does not describe a state arrived at through a process of analyt-
ical reason.
Medical eros embraces not-knowing as an acknowledgment that illness
evokes a matrix of nightside experiences that bear no relation to analytical
calculation, logical deduction, or the processes of rational thought. This
matrix takes darkness as its representative state. Darkness, of course, be-
longs to a venerable philosophical and religious tradition in which it signi-
fies an absence of reason and a withdrawal from God. Historian A. Roger
Ekirch in At Day’s Close: Night in Times Past (2006) describes how
numerous ancient civilizations represent darkness as a demon-filled source
of evil: a trope for everything malevolent and fearsome. Light, in biblical
and Christian traditions, represents Reason and God, which therefore
means that Desire and the Devil must reside in Darkness. In Milton’s Par-
adise Lost, Lucifer, the rebel angel (whose name means bearer of light) is
cast out of Heaven and finally comes to rest (renamed Satan) on the garish,
burning lake of Hell, a surreal inferno lit only by “darkness visible.”23
The punishments of Hell include darkness so fiendish that the Heaven-
deprived souls have just enough illumination to recognize the pitch-black
medium of their torment. The demonology and iniquity associated with
darkness, however, tell only half the story. Gloom, graveyards, and gothic
terror can also lay claim to their own historical and psychic attractions.
Traditional underworlds do not monopolize the meanings associated
with darkness. Darkness as a matrix of productive forces and as a seedbed
of creative not-k nowing maintains associations with wisdom, awakening,
and spiritual growth not only among traditional mystics (who make divine
contact within the cloud of unknowing) but also among many indige-
nous p eoples. Anthropologists report that such darkness constitutes a
necessary access to primal forces: forces within the earth, within the com-
munity, within the self. This primal, creative darkness, so easily lost in
the neon dazzle of modern life, continues to provide a rich resource for
certain contemporary artists and counterculture traditions. Darkness, like
the mysteries often attributed to religious faith, holds a power to draw
its adherents t oward nourishing, productive states in which not-k nowing—
at least in a temporary, restorative interval—proves as important as
knowledge.
“We need the terrain of the half-solved, the half-solvable riddle, the dis-
tance between knowing and not knowing, and being aware of our own
limits of understanding,” writes South African artist William Kentridge.24
Joan Halifax—Zen Buddhist, anthropologist, ecologist, social activist,
and thanatologist—embodies a similar spirit of openness to experiences
defined by their distance from what is solved or recognized or illuminated
by reason. She is perhaps best known in certain medical circles as the
founding director of the Upaya Zen Center in Santa Fe, which offers a
groundbreaking program entitled “Being with the D ying.” Light is not
always what is most needed; a lifelong searcher a fter the wisdom that
Western traditions of reason tend to miss or ignore, Halifax titles her
book of autobiographical reflections The Fruitful Darkness (1993).
Medical eros would recognize in not-k nowing a fertile or fruitful
darkness that differs profoundly from the deprivation of reason and the
absence of light. No one—at least no one I’ve met—wants a medicine of
irrational quirks and whimsy. Medical eros, however, as a supplement
and contrary to medical logos, can helpfully explore approaches that
open access to the patient’s full experience, especially to experience of
the inner life and to the forces of desire that reason cannot fully monitor
or control. The nightside of life plunges patients and doctors both into
an experience that cannot eliminate darkness, ambiguities, uncertain-
ties, contradictions, paradoxes, and impasse. Some patients will express
a desire not to know the results of genetic testing that might indicate a
predisposition to or even firm likelihood of (at some undetermined time)
terminal illness. Not-knowing, in such cases, includes ethical—not merely
cognitive—dimensions.
Medical eros, in its partnership role, can even draw support from the
findings of medical logos that offer evidence for believing that darkness
embodies positive, creative powers. Literal darkness appears to stimulate
or foster inventive cognitive responsiveness, a result analogous to the cre-
ative possibilities that Joan Halifax and William Kentridge find in not-
knowing. The Journal of Environmental Psychology in 2013 published a
study demonstrating that a measurable diminution of light, at least u nder
the controlled conditions of a scientific experiment, contributes to cre-
ative thought.25 The authors recruited participants who were instructed
to sit alone in a small room designed to simulate an office. A single bulb
provided adjustable levels of light, from dim to bright. Participants in the

dimly lit room solved significantly more assigned cognitive tasks than
participants in brightly lit or normally lit rooms. Dim light, the re-
searchers concluded, with perhaps a small creative leap of their own,
“improves creative performance.” Oddly, the correlation between dark-
ness and creativity extends even to thinking about darkness: thoughts
about the dark also measurably improve performance. Medical eros, in
its attachment to not-k nowing, doubtless suspected as much: What ex-
perienced lover would fail to dim the lights?
Not-k nowing obviously cannot stand as a complete or valid descrip-
tion of what we expect of doctors. Medieval mystics found spiritual
nourishment when enveloped in a cloud of unknowing, but surgeons
cannot perform their work properly without a bank of intense lights. No-
body wants a doctor for whom the creative possibilities of not-k nowing
mean blowing off appointments, ignoring laboratory reports, and simply
winging it. Patients, f amily members, and anyone who enters into the
life-changing experience of serious illness w ill nonetheless likely rec-
ognize not-k nowing as their new native territory, and they won’t neces-
sarily like it.
Patienthood can place formerly self-reliant adults in a position of rel-
ative dependence or even childlike helplessness. (Whoever designed
butt-baring hospital gowns surely meant them as instruments of humili-
ation.) The darkness of not-k nowing has both fruitful and frustrating
dimensions, but it nonetheless helps define the situation from which the
patient speaks. This situation is a space of partial understanding, gaps
and fragments, even outright incomprehension, especially in the case of
immigrant patients when translators are either unavailable or untrust-
worthy. Medical eros, at this intersection of the familiar and the not-
known, is poised to make a valuable contribution. While medical logos
is absorbed in the molecular gaze, medical eros can turn its attention
elsewhere and enlist the sensory mode that biomedicine is regularly
criticized for neglecting: the sense of hearing. T
here is much of value to
learn from paying special attention to the voices of medicine: the pa-
tient’s voice, the doctor’s voice, and the interpenetrating cultural and
personal discourses that shape our speech in implicit dialogue with the
surrounding voices.
The Patient’s Voice(s)

“He d oesn’t speak our language.”26 Perri Klass as an American medical
student in India offers what she thinks is helpful information to the
English-speaking Hindi attending physician. They are discussing an In-
dian f ather who has been tending his d ying tubercular son, and their dis-
cussion concerns when to stop all drug therapies in what is, medically
speaking, a lost cause. The father, as it turns out, perfectly understands
the speech of the Hindi doctor—but not the doctor’s medical point of
view. The language of medicine, Klass brings us to understand, includes
the values and attitudes of a professional subculture that often stand in
asymmetrical relation to the values and attitudes of the patients it serves.
Back in the United States, Klass as a young doctor and young m other
discovers that medicine doesn’t always speak her language either. She
arrives with her team at the bedside to perform a neurological examina-
tion on a newborn. “This baby is poopy,” she announces with a mother’s
hands-on experience. “He needs to be changed.” The male doctors
maintain an icy silence.
Klass assumes, incorrectly, that she has simply used the wrong vocab-
ulary. The entry into medical care, for young doctors as well as for pa-
tients, is the entry into an unfamiliar linguistic domain governed by rules
that are rarely brought to light. All languages work by means of such un-
articulated structures. Klass tries again. “This baby has apparently had
a bowel movement.” She adds, “Let me just put a clean diaper on him.”27
Worse and worse. The doctors vigorously shake their heads. The medi-
calized language of “bowel movement” did not somehow work the desired
magic. Diaper-changing, Klass finally learns, is a job that the male doc-
tors regard as falling to nurses. The entire misadventure, of course, can
initiate rich reflections on the sexual politics of medicine—a sexual poli-
tics increasingly in flux as w omen students now constitute a majority in
American medical schools and as w omen doctors reassess their roles.
The most important insight, for Klass, comes with understanding that
the language of medicine encodes assumptions, knowledge, and values
that outsiders—including novice doctors—do not fully comprehend.
The patient, as an outsider, speaks not only a nonmedical language but
also a language of not-k nowing that expresses a personal, subjective
experience of illness that medical logos almost automatically discounts

as less than authoritative and translates into its own official dialect: the
test results—numerical, statistical, laboratory-validated, solid knowledge—
will have the final say.
Medical eros w ill further perplex anyone with a staunch scientific
mind-set because it is open to learning from fictive voices. Practical dis-
tinctions between fiction and nonfiction, of course, are easy to make in
obvious cases. Only someone from Mars would mistake Little Red Riding
Hood for a statistical study in JAMA on mu-receptors and opioid analge-
sics. The two specimens belong to radically different genres. However,
even scientific genres dealing with data and fact are not somehow f ree from
the artifices of narrative. The novelist E. L. Doctorow observed the ines-
capability of fictive techniques: “News magazines present the events of
the world as an ongoing weekly serial. Weather reports are constructed
on television with exact attention to conflict (high pressure areas clashing
with lows), suspense (the climax of tomorrow’s weather prediction coming
after the commercial), and other basic elements of narrative.” Reflecting on
the relentless appropriation of fictional techniques by p eople who create,
advertise, package, and market so-called factual products, among which
we should include pharmaceutical medications, Doctorow concludes,
“I am thus led to the proposition that there is no fiction or nonfiction as we
commonly understand the distinction: there is only narrative.”28
Medical eros understands that the voices of patients, whether actual
or fictive, cannot emerge into language outside the structures of narra-
tive. Even tax forms involve an encounter with the shaping artifices of lan-
guage. In this sense, e very utterance shaped by narrative structures and
by narrative techniques is in part fictive—that is, constructed. It could
be said otherwise. As medical ethicist Tod Chambers explains, “Every
telling of a story—real or imagined—encompasses a series of choices about
what w ill be revealed, what w
ill be privileged, and what w
ill be concealed;
there are no artless narrations.” Some may wish to assign a relative
29
greater authority to the voices of actual patients, as opposed to the voices

of patients in works of fiction, but the grounds for such a decision are
highly questionable. Medical eros contends that what matters most is the
commitment to listening. Careful listening as a medical tool is as impor
tant, in its way, as scalpels, stethoscopes, and sutures.
The patient’s voice, from the perspective of medical eros, always and
inescapably takes the shape of narrative. Even the official medical “his-
tory” edits and transfers the patient’s oral narrative into the brief form
most useful to doctors. Flesh-a nd-blood patients are always singular,
changing, historical persons, never fully knowable. Their voices and their
narratives may differ significantly depending on context. For example, an
unemployed single m other on welfare may use a different vocabulary and
tell a slightly different story when she talks with a middle-aged nurse or
with a young intern. Medical software programs and rules concerning
confidentiality generate data that deliberately disguise or conceal indi-
vidual identities so that even statistical studies, in effect, create or depend
upon invisible miniature fictions. The fictional patients created by
physician-writers from Chekhov to Perri Klass are no less compelling or
instructive, in the view of medical eros, than the self-portraits in memoirs
by patient-w riters from Audre Lorde to William Styron, which also
employ fictive or semifictive narrative techniques. In short, the patient’s
voice, even in a raw transcript or video reproduction, is always a narrative
creation, and so, too, is much of the medical encounter. It is no wonder an
entire new subfield has recently opened up called “narrative medicine.”
Medical eros sees no need to carry out a rigorous winnowing that, once
and for all, divides fact from fiction; they regularly mix and follow a nar-
rative structure. Even the tubercle bacillus, as Susan Sontag showed, was
once absorbed within framing cultural narratives that had a significant
impact on p eople with tuberculosis. What’s needed, instead, is to listen
to selected voices in medical contexts to discover what they say that might
prove of value to doctors and to patients. Their collective evidence, I am
convinced, gives strong support to the values and attitudes associated
with medical eros. Not-k nowing has its own neglected value in a sur-
rounding culture and in a medical profession that venerates scientific
data and that understands patients and illness as necessarily falling under
the supervision of the molecular gaze. In such a setting, the voices of not-
knowing are especially worth listening to.
“I d on’t feel that it is necessary to know exactly what I am,” said Mi-
chel Foucault. Foucault surely ranks among the most incisive modern
thinkers, so it is significant that he also leaves space for not-k nowing. His
definition of humankind as “thinking” creatures, does not mean that Fou-
cault i magined thought as a means for filling up the universe with knowl-
edge. Knowledge always raised his level of suspicion because so often
knowledge becomes a means for exercising control that easily edges over
into oppressive forms of order. Most importantly, his life as a gay man and
as a “militant intellectual” expressed a resistance to orthodox structures—
resistance he explored in his writing. Significantly, unreason and sexu-
ality are among his primary subjects, and both closely link with eros;
they interest him particularly as they tend to disrupt settled systems of
knowledge.30 “There are more ideas on earth than intellectuals imagine,”
Foucault writes. “And t hese ideas are more active, stronger, more resis-
tant, more passionate than ‘politicians’ think. We have to be t here at the
birth of ideas, the bursting outward of their force: not in books expressing
them, but in events manifesting this force.”31 Impassioned ideas drew
him, not knowledge; and not-knowing is the matrix for ideas that burst
forth with the passion of events. Such not-k nowing provides a crucial
service in holding open a space for what is yet to come: the unseen, the
unknown, the unforeseen. Foucault concluded his reflection on h umans
as “thinking” creatures with an endorsement of the need for not-knowing:
“The main interest in life and work is to become someone e lse that you
were not in the beginning. If you knew when you began a book what
you would say at the end, do you think that you would have the courage
to write it? What is true for writing and for a love relationship is true also
for life. The game is worthwhile insofar as we d on’t know what w ill be
the end.” Knowledge, which for Foucault is always organized like a game,
32
proves worthwhile only insofar as it embraces within its structure a fun-

damental and ineradicable not-k nowing. Anything else amounts to little
more than dogma.
Not-k nowing may strike some physicians and patients as mostly a
nuisance, a state to be erased as soon as possible and replaced with
knowledge, but such views simply repeat the ruling doctrines of medical
logos. It is not a waste of time, however, to listen and to oppose business
as usual if medicine reduces patients to a case, a room number, a disease,
or an organ (“the gall bladder in room 305”), or worse, reduces the pa-
tient to an insulting acronym. GOMER is crude medical code for “Get
Out of My Emergency Room.” Listening to the voices of medicine
can even direct attention to the commonplace collective nouns such as
“doctor” and “patient” that, u nder scrutiny, resemble semifictive con-

structions that erase meaningful differences: white or black, urban or
rural, male or female, young or old, Christian, Muslim, Jew. When “the
patient” is a frightened ten-year-old Syrian boy in an American medical
center, perhaps a war orphan who speaks no English, a Spider-Man
comic may prove as crucial as drugs to the process of recovery. Medical
eros is less concerned with whether various narrative voices are factual
or fictive, because narrative always blurs the line, than with how we
might profit from attending seriously to what such voices—even in their
blurred confusion and not-k nowing—can tell us.
An Erotics of Not-K nowing: Narrative and Pleasure

John Cage, the avant-garde composer who challenged and changed
twentieth-century music, did not restrict his innovations to musical com-
position. In 1938 he invented the “prepared piano,” inserting screws, nuts,
and bits of rubber between the piano wires, and in 1952 he debuted the
infamous work 4′33″ (three short movements lasting, altogether, four min-
utes and thirty-three seconds, in which, for each movement, the pianist
raises the lid from the keyboard, sits silent, then lowers the lid). At age 65
Cage exhibited a portfolio of prints, entitled Seven Day Diary, completed
during an invited one-week crash course on e tching: “an activity,” he told
interviewer John Ashbery, “that would be characterized by the fact of my
not knowing what I was d oing.” Ashbery, a poet and art critic who under-
stood Cage’s musical preference for including random sonic events from
street noise to radio broadcasts, then asked what the advantage is of not
knowing what you are d oing. Cage replied, “It cheers up the knowing.”33
Not-k nowing in medicine and in illness is, of course, never a steady
state. It exists, as if in counterpoint, only in relation to the knowledge that
it interrupts, as knowing and not-k nowing alternate, collaborate, inter-
penetrate, or overlap in what is always an improvisation. The knowledge
that medicine at times must impart—the “bad news” that doctors hate
to tell patients—is sometimes so dire that it may well put us in need of
cheering up. Not-k nowing, in turn, can offer the spiritual nourishment
that Zen teachers describe as a return to “the beginner’s mind.” Cage no
doubt owed much of his celebrated optimism to his study and practice of
Zen ways, and optimism—reconfigured as the biology of hope—makes a

well-documented contribution to wellness. Medical eros, however, under-
stands not-k nowing as far more than a possibly therapeutic source of
wellness and cheering up. Not-k nowing (as crucial to eros and to illness)
reminds us that medical knowledge and the molecular vision of life do
not constitute an impervious, all-powerful, g iant monolith, an Australian
Uluru. They exist only in relation to forms of life and modes of knowing
that go on, as it w ere, in another dimension, much as Uluru looms up
against the sky, set off against the surrounding plain or bush, where ab-
original inhabitants know how to find water and food, inscribing their
sacred stories and legends in pictographs where outcrops, overhangs, and
occasional secluded pools offer shelter and instruction hidden within the
5.8-mile circumference of the ancient red-sandstone monument.
Philosopher and novelist Richard Kearney delivers the bad news to
anyone who believes that narratives, even if they pass straight from a real
patient to an actual physician, express the unvarnished truth. As he puts
it, “stories are never innocent.” What he means is that all narrative is open
to “a continuing conflict of interpretations.”34 Who has the right to say,
for certain, what a particular story means? The doctor? A computer pro-
gram? Two literary critics? Suppose they disagree? Moreover, stories
and narrative structures often knowingly or unknowingly support a par
ticu lar point of view. Medical eros at least deals openly with such di-
lemmas, which medical logos prefers to ignore despite their scandalous
presence in medical practice. “Uncertainty,” writes Dr. David M. Eddy, a
specialist in health policy and management, “creeps into medical practice
through e very pore.” He adds, as if breaking a professional code of silence:
“Whether a physician is defining a disease, making a diagnosis, selecting
a procedure, observing outcomes, assessing probabilities, assigning pref-
erences, or putting it all together, he is walking on very slippery terrain.”
The cognitive slipperiness native even to biomedicine gives purchase
to the uneasy thought that reason and science are not fully in control.
Eddy summarizes the dilemmas that accompany diagnosis, treatment,
and outcomes-assessment: “It is difficult for non-physicians, and for many
physicians, to appreciate how complex these tasks are, how poorly we un-
derstand them, and how easy it is for honest people to come to different
conclusions.”35
Medical eros operates on the assumption that, no matter how much we

know, knowledge in medicine always contains gaps, uncertainties, dark
spots, and slipperiness. Mysteries remain that defy sense, elude reason,
and baffle textbook logic: sudden deaths, flesh-eating bacteria, chronic
pain with no identifiable lesion, spontaneous remissions, miraculous re-
coveries, and new diseases without cure. A tested therapy, successful in
extensive trials, will suddenly fail a particular patient. Why? Drugs and
devices prescribed by a generation of doctors suddenly vanish from the
marketplace amid class-action lawsuits. Experienced physicians develop
a sense for how to proceed amid uncertainties and the unknown, although
generally they proceed on a path meant to produce answers and successful
treatments. Even so, there is much that medicine, ultimately, cannot know.
It cannot know, for example, the life story of every patient; it cannot peer
deeply into the financial and personal struggles that every doctor faces.
Illness brings the unknowns that surround individual doctors face to face
with the unknowns that surround individual patients, and uncertain
knowledge is the flimsy rope bridge swinging between these two dark
immensities, with illness the abyss below. Medical eros, even when in-
visible and unacknowledged, has a place in negotiations that involve the
not-k nowns inherent in the triangular relation among doctor, patient,
and illness.
Eros and not-k nowing, it must be said, almost always carry a whiff of
scandal in a profession that celebrates knowledge, reason, and scientific
discovery. Medical students and nursing students, in my experience, find
the rough, eroticized throat examination by the doctor in William Carlos
Williams’s “The Use of Force” totally unacceptable, as if to confirm Ra-
fael Campo’s early belief that, for a model physician, desire is repellent
and forbidden. Can pleasure exist where t here is no desire? Does a pro-
fession that outlaws desire also, even if unwittingly, outlaw pleasure?
Medicine in its close confederation with science and knowledge can
easily appear complicit in what scholar Wendy Steiner describes as the
contemporary scandal of pleasure. 36 The sadomasochistic eroticism in
the photog raphs of Robert Mapplethorpe, deliberately scandalous, of
course draw attention to the extravagances of desire and suggest that
pleasure can cross or erase boundaries as surely as eroticism (for Bataille)
destroys the normal, self-contained character of the participators. Should

medicine perhaps seek to outlaw pleasure?
Illness, like eros and like pleasure, crosses boundaries and erases
constraints. It, too, destroys a sense of normalcy, which is why, to the
ill, harmless pleasures can seem like a gift delivered from a forgotten
homeland. Medical eros cannot avoid risking scandal in its relaxation of
borders. It gives implicit permission to pleasurable human activities—sex,
laughter, dreams, m usic, play, story—which may well constitute or con-
tribute to Broyardian good medicine, even if, like most drugs, their power
falls somewhere short of cure. Jennifer Glaser and her boyfriend bed-
ridden with leukemia did not spend their afternoons in search of bio-
medical knowledge.
The pleasures that medical eros endorses, if just implicitly, can claim
support from authorities that carry the endorsement of medical logos.
Take dreams, for example. Dreams, despite a lurking possibility of night-
mare, are a traditional source of pleasure, as reflected in the multiple
ways in which we apply the adjective dreamy. Once a crucial therapy in
the ancient Asklepieion, dreams still find a therapeutic use among certain
specialists in m ental health, and brain-imaging studies show that neurons
in the cerebral cortex are far more active during the stage called rapid eye
movement (REM) sleep, which is the period when we experience vivid
dreams. Whatever such dreams may mean or do, we go through the
REM sleep cycle five or six times during eight hours of sleep. Research
has suggested that prolonged deprivation of REM sleep is associated
with depression and other illnesses. Dreaming—as it accompanies REM
sleep—would seem important to h uman health, and so too are the plea-
sures of sex. Sexual activity is a source of illness when seriously disor-
dered or pathological, of course, but otherw ise it is a function of the
healthy adult organism. Its erotic pleasures, for many p eople, involve a
plunge into darkness and not-k nowing. Knowledge mostly just gets in
the way.
Medical eros would propose laughter and m usic as two other sources
of pleasure, and both have demonstrable value in reducing pain and in
opposing illness. Research into the neurobiology and psychology of
laughter has long shown its power to reduce pain, in part through the role
of laughter in distraction, but researchers have offered other, less well-

documented claims of health benefits of comic laughter, from improving
blood flow to strengthening the immune response. M usic, of course, can
intoxicate an entire audience. Oliver Sacks, from his perspective as a neu-
rologist, has described how m usic is effective in helping patients with
certain neurological disorders such as Parkinson’s disease and advanced
dementia. 37 The close association between music and emotion is en-
shrined even in the history of military bands, and this immediate link
with emotion is surely part of what Sacks’s patients respond to. Medical
logos has every right to remain skeptical about specific claims until they
are proved. Medical eros, however, stands as the icon for an intuitive
recognition that pleasure—as an object, by-product, and component of
desire—has a positive role to play in health and illness.
The pleasures of not-k nowing might even claim to tap into a higher-
level spiritual or sacred dimension. Joy, invoked as a very specific con-
cept distinct from simple pleasures, certainly holds a power (almost like
music or group prayer in a Baptist church) to unite people in a communal
spirit that has its own demonstrated health benefits. Joy, we might say,
resembles the ecstatic states associated with Hassidic or Sufi worship.
The ecstatic visions of Saint Teresa of Ávila, memorably represented in
Bernini’s marble statue in the Cornaro Chapel in Rome, bring the intense
pleasures of a mystical communion with the divine scandalously close
to an image—or fantasy representation—of female sexual orgasm. It is not
necessary, however, or perhaps even possible to remain for long periods
in a state of unrelieved ecstasy, whether spiritual or profane. Simple free
play, meaning a pleasurable expression of ludic desire outside regimented
or professional playgrounds—from Little League sandlots to multimillion
dollar sport complexes—has ramifications so basic to healthy human
function that it’s surprising all hospitals don’t encourage it.
The evolutionary value of play, as musician and author Stephen
Nachmanovitch contends, is that it makes us flexible: “Play enables us
to rearrange our capacities and our very identity so that they can be used
in unforeseen ways.”38 Play is now highly valued for its role in childhood
development and might be said to reaffirm its presence in adult, social ex-
istence through the institution of the theater. Plays, as we call the perfor
mances staged from ancient Greek amphitheaters to Broadway, not only
enlist the pleasures of fiction but also hold, as evidence now suggests,
import ant therapeutic powers. Aristotle saw pleasure as basic even to
tragic drama and invokes a broadly therapeutic value for dramatic pro-
ductions, no m atter whether we translate catharsis as purgation, purifi-
cation, or clarification. With an even more directly therapeutic aim, driven
to respond to the alarming rate of suicides among veterans of recent U.S.
military conflicts, the contemporary company called Theater of War
performs scenes from classical drama for audiences of wounded veterans.39
Suicide may mark the ultimate failure of eros, and whatever power op-
poses suicide can be regarded as life-affirming. Sophocles, as the The-
ater of War reminds audiences, was an Athenian general, and Aeschylus
produced his Oresteia with Athens at war on six fronts. Classical tragedy
enfolds experience that is not foreign to modern combat veterans, and
its account of human suffering can spark post-performance discussions
among audience members that prove extremely valuable. Theater of War
Productions has by now presented many hundreds of performances of
Sophocles’s Ajax and Philoctetes for military audiences worldwide, from
Guantanamo Bay to the Walter Reed Army Medical Center.40 How many
other companies have performed at both the Guggenheim Museum and
the Pentagon?
Pleasure is not always a direct goal of drama, and playwrights may
prefer to challenge audiences with an experience of outrage, alienation,
or confusion. The mixed impulses that bring us to the theater or to the
playground, however, cannot be entirely detached from a desire for plea
sure. It is a pleasure, too, that often depends upon a willing, if temporary,
encounter with not-k nowing. The dark woods in A Midsummer Night’s
Dream, for example, are an easy journey from Athens, which Shakespeare
represents as the citadel of reason, patriarchy, and law. (Athens, through
association with its famous resident Hippocrates, might count as the home
of medical logos.) As the Athenian duke, Theseus, and his captive bride-
to-be quarrel, the amorous discord extends even to the tutelary rulers of
the woods, the king and queen of the fairies. Meanwhile, four young lovers
leave Athens and spend the night lost in the woods, where the eros-
surrogate Puck embroils them in misunderstandings. When Puck even-
tually intervenes once more to set t hings right, the lovers awake, pair off
in the proper combinations, and the royals (both in Athens and in
fairyland) mirror the new concord. Everyone then returns to Athens for
the Duke’s wedding, including Bottom the Weaver (whom actor Kevin
Klein plays as endowed with a touch of the artist). Bottom wakes alone,
semiconfused, from a magical night spent enfolded in the arms of the
beautiful queen of the fairies, which of course he can’t wholly recall,
so he imagines that he must have dreamed it: “I have had a most rare
vision. I have had a dream, past the wit of man to say what dream it was.”41
Dreams, as medical eros would contend, are a resonant image for the
therapeutic pleasures of not-k nowing. As if they had spent the night in
an Asklepian abaton, Shakespeare’s quarrelsome lovers achieve a happy
ending only through their immersion in darkness and in dreamlike con-
fusion, and the pleasures that await them take the time-honored comic
image of marriage. Eros, for all the discontents it can provoke, also leads
to harmonious resolutions and to pleasura ble renewal. It offers a force
for healing even the rifts and wounds it might cause. Tragedy offers a
sterner perspective, but we proceed at our peril if we ignore the healing
power of eros, of not-k nowing, and of comic pleasure: in short (a caution
to all who struggle with serious illness), if we fail to dream.
Few events in clinical medicine are more basic and less often discussed
than not-k nowing, and patients, too, are often in the dark. A Midsummer
Night’s Dream, in its encounters with disorder, invites us to consider how
the dark struggles and confusions that typify illness—including the al-
tered states of inner life—require an ack nowledgment of mutually fruitful
contraries: nightside not-k nowing along with daylight rationality. Eros
and illness immerse almost everyone, sooner or later, in the unknown and
in the unknowable, but the experience need not be permanently disabling.
Parallels with medical eros and medical logos seem relevant. Medical
practice cannot somehow exclude encounters with not-k nowing and dis-
order, despite the preference of biomedicine to emphasize its astonishing
technical innovations and its scientific knowledge of diseases. Doctors
cannot stop work at the bright lines that mark off perfect and certain
knowledge, and patients live within the shadow of uncertainties and not-
knowing that biomedical floodlamps will never completely dispel. A se-
rious question in medicine is not how to stamp out e very known disease
but rather how to proceed in the inescapable presence of the not-k nown.
The unknown and the unknowable are as common in illness as the pres-
ence of its mostly invisible companion eros. Shouldn’t somebody—doctors,

patients, caregivers, families, administrators, grant agencies, politicians—
eventually take note?
The note or annotation is a genre so negligible (if it even rises to
the level of a literary event) that it might provide a fitting emblem for the
invisibility of eros in illness. As a brief written record often for future
reference, the note also has an established role in medicine. Progress
notes, according to one standard guide, are the core or heart of most clin-
ical records: a repository in which health-care professionals enter details
concerning a patient’s status during hospitalization or outpatient care.42
The note is also, however, a legal, actionable document, and one authority
recommends that trainees, in self-protection, imagine a hostile pros-
ecuting attorney reading the note in court. The margins of most of my
books, safe from litigation, include handwritten annotations that might
rate the technical term marginalia. The lowly annotation even gener-
ates its distinctive contemporary forms, such as the indispensable sticky
note, and it is thus instructive to observe what a recipient of the Nobel
Prize in Literature makes of this modest, everyday, fragmentary record or
reminder.
Wislawa Szymborska, the poet, essayist, translator, and 1996 Nobel
Prize winner, begins her brief poem “A Note” by focusing on almost the
opposite of epic or the sublime: “Life is the only way / to get covered in
leaves, / catch your breath on the sand, / rise on wings; / to be a dog.” Her
list of casual, ordinary, unexpectedly strange experiences, animal and
human, ends with another apparently miscellaneous sequence that just
might catch us up short. Life, she concludes on a quiet note, allows you
to “mislay your keys in the grass; / and to follow a spark on the wind with
your eyes; / and to keep on not knowing / something important.”43
Does the value that we automatically place on knowledge in effect keep
us from understanding the value of not-k nowing? A note, of course, cap-
tures only a fragment; it is a form disrespected precisely because it spe-
cializes in the partial, the fleeting, the tentative, and the incomplete. It is
also, in its distance from the certainties of authorized knowledge, where
for Szymborska the truly important experiences of life seem to reside. The
note coincides with a realm in which we w ouldn’t need a note to remind
us if human knowledge weren’t so often piecemeal and so often given to
a slide back toward not-k nowing. Not-k nowing, in effect, is what we do

every day, without knowing we do it; without knowing how important the
everyday things truly are; without knowing—Szymborska’s ultimate par-
adox—how important not-k nowing is. Knowledge may be power, as
thinkers from Jefferson to Foucault assert, but knowledge can also solidify
into oppressive power, as Szymborska, who in Poland lived u nder a dic-
tatorial regime for many years, pointed out in her Nobel Prize lecture.
“This is why I value that little phrase ‘I don’t know’ so highly,” she said
in her talk. “It’s small, but it flies on mighty wings.” “Poets,” she added,
“if t hey’re genuine, must also keep repeating ‘I don’t know.’ Each poem
marks an effort to answer this statement. . . . W hatever inspiration is, it’s
born from a continuous ‘I don’t know.’ ”44
Medical eros in its role as contrary seeks to recover—to take note of,
rather than to deny or forget—exactly those aspects of health and illness
that medical logos and the molecular vision tend to overlook or dismiss
as not worth knowing. Paradoxically, with its embrace of not-k nowing,
medical eros can offer at least one source of support that physicians and
health-care professionals have increasingly come to value. Distinguished
pain specialist Scott Fishman puts it this way: “When somebody comes
in with 25 years of chronic pain, I might sit with them for 90 minutes to
get the beginning of the story, to r eally understand what’s happening. The
insurers would rather pay me $1,000 to do a 20-minute injection than pay
me a fraction of that to spend an hour or two talking with a patient.”45 In-
surance providers adopt (as in their financial self-interest) the technical
procedures favored by medical logos and by the molecular gaze, which
entail an almost automatic aversion to getting the story. Stories or narra-
tive, despite the varieties of not-k nowing that they entail, belong also to
the native terrain of illness. A distinguished line of modern doctors and
modern patients, in opposition to the insurers, are beginning to reclaim,
revalue, and redirect the ancient interest in narrative. The next frontier
in biomedicine might well lie in rediscovering the everyday importance
of narrative and in talking with patients to hear their individual stories of
illness.
Part Two
The Stories
Chapter Four
Varieties of Erotic Experience:

Five Illness Narratives
Compared with this world of living individualized feelings, the world
of generalized objects which the intellect contemplates is without so-
lidity or life. . . . We get a beautiful picture of an express train supposed
to be moving, but where in the picture . . . is the energy or the fifty
miles an hour?
William James, The Va r iet ies of Religious Experience (1902)
E ros is the energy and the fifty miles an hour—desire as an ex-

press train that blows past whatever eros-concept or eros-picture
the intellect prefers to contemplate. Medical logos, on the side of intel-
lect, devises strategies of containment and speed limits, perhaps a patient’s
bill of rights or an ombudsman, but t hese sensible concessions to the bill-
paying patient hardly conceal where the real power lies. Patients, to re-
ceive treatment, sign consent forms acknowledging almost every possible
risk, absolving physicians and institutions of predictable harms that seem
to stop short only at criminal negligence, while doctors sign nothing ex-
cept large checks to cover malpractice insurance. This imbalance of power
107
108 T he S t o ries
is not grounds for a p eople’s revolt. Doctors, like patients, face serious
dangers. It is also the unspoken duty of institutions and professions to
protect and to perpetuate themselves, in which obligation hospitals and
medical staff are no less self-regarding than universities or big-name golf
tournaments. What makes this common situation worthy of note is that
patients, despite their position of dependency, have recently begun to as-
sert a modest power as they publish books, articles, blogs, and random
tweets about their experiences of illness. While biomedicine still rules the
institution and while the molecular gaze brings back ever more detailed
pictures from the interior of the body, the medical eros express train—
long neglected or invisible—is picking up speed.
The shifting social dynamic in twentieth-century medicine, proceeding
alongside the explosion of new biotechnologies, has thrust into promi-
nence a new figure whom sociologist Arthur W. Frank aptly calls “the
wounded storyteller.” 1 Book-length accounts of illness written by patients
were uncommon before 1950, as scholar Anne Hunsaker Hawkins ob-
serves, and they were rare before 1900.2 Starting in the second half of the
twentieth century, however, the patient as wounded storyteller began to
fill the bookstores and airwaves and Internet chat rooms with personal
illness narratives. The reversal of position is important to recognize, even
as biomedicine solidifies its power. Doctors in their role as medical scien-
tists or as designated scientific-minded authorities on the body had long
possessed a monopoly on writing about illness. Illness was their precinct,
almost like a cop on the beat, and writing about illness was just what doc-
tors did—mostly in arcane papers published in peer-reviewed journals
read by other doctors. The medical profession controlled the discourse
of illness.
Today each new best-seller list contains memoirs in which patients,
family members, or lovers recount their stories and report their personal
truths. In t hese new patient-centered narratives, doctors no longer hold
a privileged position as science-minded authorities on the body. Biomed-
icine can still report amazing scientific breakthroughs and announce
unimaginable cures, but such news reports must now compete with off-
setting narratives describing misdiagnosis, medical bungling, bureau-
cratic delay, and fatal outbreaks of ever-new viral diseases. The new
world of medical narrative is a site where patients no longer accept a
Varieties o f E r o tic E xperience : F ive I llness N arratives 109
passive, voiceless role. Doctors, too, and other medical insiders have
begun to join the narrative jamboree, writing less from an elevated posi-
tion as scientists of the body than from a level playing field as first-person
participant-observers in the drama of modern health care. In 2015, for
example, the Annals of Internal Medicine published an anonymous
article entitled “Our Family Secrets”—in which an intern and doctor
recount similar stories of inappropriate sexual language and sexual
behavior among male physicians in obstetrics and gynecology. 3 Other
prominent medical journals now publish brief first-person narratives by
doctors and other health professionals, recognizing a value in narrative
that extends well beyond its use in exposé. The work of contemporary
physicians from Richard Selzer and Oliver Sacks to Atul Gawande,
Danielle Ofri, Abraham Verghese, and Siddhartha Mukherjee demon-
strates that doctors rank among the most talented writers of our times.
Verghese’s self-described “love of medicine,” for example, plays out in
complex novels where desire and erotic impulses prove crucial to the
operations of empathy and of healing.4
The professional epicenter for this new interest in medical narrative is
the Program in Narrative Medicine, founded in 2002 by physician Rita
Charon at the Columbia University College of Physicians and Surgeons,
a beacon and model for proliferating medical programs and journals in-
terested in narrative. Psychiatrist and anthropologist Arthur Kleinman
helped mark the path in his trailblazing book The Illness Narratives
(1985), and Arthur W. Frank, in addition to The Wounded Storyteller
(1995), has added a suite of influential studies on stories and illness.
Narrative, almost overnight, has turned into a rich field of medical re-
search. Psychologists have conducted some of the more remarkable recent
studies: James W. Pennebaker, for example, shows that writing about
trauma correlates with measurable health benefits; Richard G. Tedeschi
and Lawrence G. Calhoun pursue narrative-based research into the
“posttraumatic growth” that many times accompanies or grows out of
crises such as serious illness.5 (As many as 90 percent of survivors, they
report, experience at least one aspect of posttraumatic growth, such as a
renewed appreciation for life.) Well-tested psychometric instruments and
software programs for analyzing speech now give narrative researchers
the ability to transform stories and first-person discourse into the
110 T he S t o ries
quantifiable, statistical data that most medical journals expect. Mean-

while, however, not-k nowing remains a hard sell in medicine, as it makes
for a feeble research agenda and a career that looks dead on arrival. The
molecular gaze automatically privileges visual data, where seeing is be-
lieving, and what can’t be seen (or converted into pie graphs) isn’t really
believable. My aim, minus the computer analytics, is to examine five ill-
ness narratives and to ask in an exploratory spirit (that privileges words
over images and not-k nowing over knowledge) what is it that patients
desire and what is it they desire to say?
Depression: Darkness Visible

“I felt my heart pounding wildly, like that of a man facing a firing squad,
and knew I had made an irreversible decision.” So wrote famed Amer-
ican novelist William Styron as he describes the moment, one cold early
December, when recurrent, ever-deepening depression pushed him to the
edge of suicide.6 He had just stuffed his writer’s notebooks into the trash
bin. Only a few technicalities remained to s ettle: a rewritten w ill, a sui-
cide note, the method of self-execution. Other illnesses, Styron felt, allow
a hope of improvement or the faith in an eventual return to health, but
not serious depression. “In depression this faith in deliverance, in ulti-
mate restoration,” he writes, “is absent. The pain is unrelenting, and what
makes the condition intolerable is the foreknowledge that no remedy will
come—not in a day, an hour, a month, or a minute. . . . It is hopelessness
even more than pain that crushes the soul” (DV 62). Eroticism, Bataille
had written, is “assenting to life up to the point of death.”7 Assent
(l’approbation) means approval: finding good. Depression—with its dark,
unending, soul-crushing, life-renouncing despair—constitutes for Styron
almost an official anti-eros.
Medical logos meets its limits for Styron in the soul-crushing moment
when despair turns suicidal. The molecular gaze offers no solace when
doctors, drugs, and therapies have exhausted their powers, leaving Styron
alone to face the ultrarational, binary choice between hopeless, endless
suffering or a quick end. The rationality of suicide is what Styron chose
to emphasize in a controversial op-ed piece that he published in the New
York Times. His circle of literary friends included several famous writers
whose suicides Styron staunchly defended against detractors who attrib-

uted the deaths to momentary irrational acts. His heart pounded wildly,
but Styron’s decision to end his life was not a sudden response. Suicide
is for Styron the opposite of an impulsive, mad, or delirious act. It is more
like the conclusion to a logical syllogism, the ultimate coldly rational de-
cision of a reasonable man with no other option.
Darkness Visible: A Memoir of Madness (1990) is Styron’s account of his
life-threatening illness. In its chilling inside look at depression, Styron
provides facts and figures that make his narrative more than the memoir
of a strictly personal dilemma. In its shape as well as its subject, it stands
as a seminal document in the development of narrative medicine. Depres-
sion, even twenty-five years after Styron wrote, is according to the Na-
tional Institutes of Health one of the most common m ental disorders. The
figures for 2014 show that about 6.7 percent of all U.S. adults experience
a major depressive disorder.8 Women are far more likely than men to ex-
perience depression. Such alarming numbers mark a significant crisis in
public health, and Styron’s achievement is to take us inside the numbers
in order to understand the personal or lived experience of depression.
Serious, clinical depression for Styron means that he arrives at a moment
when, with medical knowledge and medical assistance now no more than
a hollowed-out husk, he methodically completes the necessary prepara-
tions for suicide.
Medical eros might be described as the secret hero of Darkness Visible.
This tendentious description, however, requires some acquaintance with
the knowledge that Rita Charon calls narrative competence. Narrative
competence, as Charon describes it, is “the competence that human be-
ings use to absorb, interpret, and respond to stories.” Her account, slightly
expanded, leads us straight back to Styron. “The narratively competent
reader or listener,” Charon sums up, “realizes that the meaning of any
narrative—a novel, a textbook, a joke—must be judged in the light of its
narrative situation: Who tells it? Who hears it? Why and how is it told?”9
The narrative situation in Darkness Visible, as we know, involves a famous
writer (Styron), gripped by depression, who tells his story in retrospect.
The retrospective stance allows him to compose a highly literate memoir
of his experience, a legitimate contribution to his prize-winning career
as a writer, complete with references to Milton and to Dante. Why? Why
112 T he S t o ries
is implicit in how. Styron tells his story in a way that traces a well-crafted
arc from descent to emergence. How he tells the story, then, involves de-
scribing an action in which the well-crafted arc reaches a crucial turning
point. Styron’s turning point (peripiteia is Aristotle’s technical term) oc-
curs when the downward arc reaches its nadir and the upward movement
begins. This turning point has l ittle to do with reason and everything to
do with eros.
It is a compelling story told by a master storyteller. Late at night, bun-
dled up against the b itter cold outside, knowing that he cannot make it
through the next day’s pain and with preparations complete for his self-
destruction, Styron (solitary in his depressive state) sits alone watching a
film. It is the equivalent of a prisoner’s last meal. His wife, Rose, he tells
us, is upstairs in bed. Suddenly, from the soundtrack, he hears a “soaring
passage” from the Brahms Alto Rhapsody. The music, he writes, “pierced
my heart like a dagger.” This heart-piercing music does not belong to the
world of reason. Rather, it opens up “a flood of swift recollection” (DV 66).
The prize-w inning writer—l ionized in Paris with a prestigious award
as the book artfully opens—now finds his thoughts returning to the daily
pleasures of love, work, and family life. The turning point, then, evokes
multiple events so closely linked as to constitute a complex knot. Soaring
music. Heart pierced like a dagger. Memories of h ouse, love, children,
work, and family life. “I am convinced that this was the moment that saved
him,” Rose Styron later wrote about her husband’s sudden decision to
abandon his well-planned and nearly completed suicide, “and I’m certain
his thoughts of our family did finally nullify his resolve to kill himself.” 10
Styron’s turning point stands as a reversal of everything that reason had
argued in favor of suicide. It overrides even all his detailed and sharply
argued skepticism about doctors, hospitals, and the limits of medical lo
gos. It also exposes the complex role of emotion in illness and in healing.
The soaring passage from Brahms’s Alto Rhapsody, as we learn, reminds
him of his mother, who had died when he was thirteen. She was an opera
singer who had sung the same soaring passage. The memory of family joys
also proves inseparable from a somewhat sentimental passage that he re-
calls from a poem by Emily Dickinson. “I woke up my wife,” he writes,
“and soon telephone calls were made. The next day I was admitted to the
hospital” (DV 67). Styron remains vague about the details and about ex-
actly how hospitalization restored him. Depression, as he indicates, rarely
yields s imple explanations, biochemical or psychological, and he remains
skeptical about the hospital therapies. What he gives us, in effect, is the
account of a near-fatal illness arrested at the last moment by a rush of
emotion—what I might compare to a heroic rescue at the hands of med-
ical eros. The memoir concludes its well-shaped arc with a line from Dante
as he at last emerges from his dark underworld journey (through the seven
circles of Hell) and once again beholds the stars.
Stories, never artless or innocent, always embody the shape of a nar-
rative situation. They are constructed by someone, for someone, with a
specific point of view, and often with a particular purpose. Styron’s youn
gest daughter, Alexandra, accurately terms Darkness Visible “a tale of
descent and recovery.” 11 Tales or fables, of course, often achieve their
power through radical simplification. Rose Styron points out that Dark-
ness Visible does not mention her husband’s relapse in early 1988, when
he again grew depressed and, in her words, “violently suicidal” (S 135).
(Styron died of pneumonia in 2006.) Was Bill Styron r eally alone—Rose
asleep upstairs—when he heard a soaring passage from the Alto Rhapsody?
“In my mind,” Rose Styron writes, “I never slept if Bill was not in bed
beside me” (S 133). Rose Styron, a fellow writer, does not suggest literary
deception; memory is imperfect, and all writing requires shaping arti-
fice. It is telling, however, that she chooses a significantly different
title for her essay-length account of their shared experience of his de-
pression: “Strands.” Strands, especially loose strands, are what d on’t get
neatly tied up as a well-constructed plot concludes. They are the surplus—
untethered filaments, tangled leftovers—that resist a full and final account.
Rose Styron’s experience (as spouse and caregiver) takes as its title and
metaphor an untidiness or incompletion that does not trace a mythic tra-
jectory from darkness to light.
Narrative competence, if it deems medical eros the unseen hero in
Darkness Visible, requires that we also notice the cost that stories may or
may not acknowledge. Eros is not unfailingly kind, and Styron omits a
full account of the darkest hours when, as we learn from his daughter, he
tried to tell his wife “the names of all the women he had slept with over
114 T he S t o ries
the course of their marriage” (RMF 222). Medical eros, if we do not ro-
manticize it, will contain fractal moments of strain, conflict, paradox—
in effect, strands. Alexandra Styron, as she examined letters from grateful
readers in her father’s archives at Duke University, struggles to reconcile
the book’s generally sympathetic narrator with the difficult father she grew
up with: “How could a guy whose thoughts elicit this much pathos have
been, for so many years, such a monumental asshole to the p eople closest
to him?” (RMF 11). Hard words, but they indicate how far illness and its
effects r ipple through the surrounding supra-dyadic spaces in which
children and families struggle to make sense of experiences they imper-
fectly understand—which grow darker in retrospect—where knowledge
must rub up against its limits in the darkness of non-k nowing.
While no panacea, medical eros, even in its raggedness can offer solace
amid the wreckage. “He’d spent more than twenty years pushing her
away,” as Alexandra Styron observes the change in her parents during
her father’s depression; “Now he wouldn’t let her out of his sight”
(RMF 221). Her father’s recovery transformed his obsessive clinging into
what she regarded as a new closeness. Rose Styron seems to agree in the
poetic fragment—another loose filament—that she includes toward the
conclusion of “Strands”: “Love that lay hidden u nder / yesterday’s mon-
strous breakers / in the pounded dunes / walks with us” (S 135–136). Her
final paragraph offers a similarly muted testament to eros: “Looking back,
I would say that sticking with the person you love through the stressful
dramas of mood disorder can eventually be incredibly rewarding” (S 137).
Medical eros would advise that we do not overlook the strandlike modifier
eventually.
Breast Cancer: Cancer in Two Voices

“I shut my eyes and saw absolute black,” writes Barbara Rosenblum of
the day—November 20, 1985—when she learns that her breast-t issue
biopsy has tested malignant: “no lines of red or purple, pure black.” Bar-
bara Rosenblum is, strictly speaking, not in her right mind. “My agitation
lifted me off the t able and I started walking around the examining room
in small steps, working off the tension,” she writes. “I thought I might put
my fist through the wall.” She pauses—for a paragraph break—as if to
catch her breath. “And then, when I opened my eyes, I couldn’t see too
well. Or hear too well either” (CTV 10). Betrayal by one’s own senses,
which Sappho describes in the lover, is mutatis mutandis the state of the
patient, too.
Sandra Butler, as surviving partner of cancer patient Barbara Rosen-
blum, begins their unusual coauthored narrative with a direct address to
the reader: “We wanted to tell you our story.”12 The narrative situation
here is inseparable from the act of storytelling, and the pronoun “our”
signals that this particu lar illness narrative is unusual in its double
narrators. Through the formal structure of alternating narrators, illness
displays its power to enfold more than the patient alone. In addition,
the opening address (we wanted to tell you) not only affirms what
theorist Richard Kearney calls the “intersubjective model” of narrative
discourse but also enfolds the reader too in the supra-dyadic force field
of illness.13 The reader is an especially important figure for Rosenblum
and Butler, who write with the specific purpose that their story be “of
use.” The uses of narrative, however, ultimately include what writing
(in the triangular bond linking teller, tale, and reader) does to and for
authors. As Sandra Butler explains directly, “We wanted to tell our
story, finally, b ecause this writing made us visible to ourselves as we
were living it” (CTV i).
Barbara Rosenblum died at age forty-four, February 14, 1988, on
Valentine’s Day, three years to the week after she learned of the diag-
nosis: stage-three breast cancer. Based on data covering 2010 to 2012,
approximately 12.3 percent of women in the United States at some point
in their lifetime w ill be diagnosed with breast cancer.14 In 2013, over 3
million American w omen were living with the disease. The prospects
in 1985 when Barbara Rosenblum received the awful news were even
more dire. Although the death rate from breast cancer among all ethnic
groups has been declining in recent years, some 39,620 American
women died from breast cancer in 2013. Happy endings do occur, with
unexpected remissions and difficult, protracted cures. The valiant friend
who had e-mailed me with the news of her diagnosis with breast cancer is
now—a fter a long arduous course of treatment and thanks in large part
to the fine biomedical care she received—cancer free. Medical logos,
nonetheless, cannot yet remove the looming threat of death from breast
116 T he S t o ries
cancer. Cancer in Two Voices offers an indirect tribute to medical eros

not in its power to extend individual life expectancy but in its power to
improve, in crucial nonmedical ways, the quality of life.
The possible conflict between medical eros and medical logos (always
implicit in their role as contraries) finds representative figures in Barbara
Rosenblum and Sandra Butler. Rosenblum, who grew up in a Brooklyn
lower-class, immigrant, Jewish f amily, describes herself as a secular, aca-
demic rationalist. A no-nonsense, problem-solving sociologist, she refuses
to view her mastectomy as a crisis of womanhood or a blow to her self-
esteem. “Losing my hair has been much harder than losing my breast,”
she observes in her face-the-facts, rationalist mode. “No one can see
underneath my clothes. But everyone can see my hair” (CTV 130). Sandra
Butler comes from a different Jewish background—middle-class, activist,
assimilated—and she is far less given to rationalization. Emotions regu-
larly drive her experience, and she is quick to voice her distress. “Cancer
swallows up the air of my life and insinuates its presence everywhere,”
she writes. “Nothing remains untouched” (CTV 48). Medical logos, while
it provides a road map for rationalist Rosenblum, has l ittle to offer Butler.
In dealing with the stress of her caregiver role, she rejects tranquillizers
in favor of a therapist and a support group, where she can vent face-to-
face about feeling “invisible and misunderstood” (CTV 108). It is under-
standable that the visibility conferred by narrative might prove crucial to
the often-neglected caregiving partner, whose social identity illness re-
lentlessly thins out, but it is not as evident what narrative visibility and
medical eros have to offer the less expressive Rosenblum.
Rosenblum and Butler in Cancer in Two Voices (1991), creating a re-
markable dialogic narrative that describes their three years living with
breast cancer, offer a compelling vision of how serious illness continuously
alters and recalibrates the experience of two loving partners. Butler, the
healthy partner, never breaks f ree from the confining, dynamic circle of
Rosenblum’s illness. Their dual voices thus do not belong to separate
worlds of the sick and the well but instead embody a new, conjoined
reality. The narrative is most powerful in shaping its account not as a tra-
ditional story about “struggle and courage,” as Butler puts it, but rather
as unscripted, unfolding, journal-like entries that reveal how serious ill-
ness plays out within the shifting dynamics of a loving, two-person rela-
tionship. Their narrative thus explores ground with almost no interest
for medical logos—the patient dies—but with complex and far-reaching
significance for medical eros.
Cancer in Two Voices develops through irregularly alternating pas-
sages in which each partner records her experience, but their voices also
record a simultaneous underground contest between medical logos
and medical eros. This subterranean theme soon takes a dark turn as
Rosenblum’s cancer spreads. Both women swiftly adapt to their newly
medicalized conversation about intravenous fluids, chest X-r ays, and
chemo-embolization. Rosenblum, who wrote a pioneering scholarly
book on the sociology of aesthetics, laments the change as she trades
theories of beauty for daily talk of Adriamycin, Cytoxan, and Predni-
sone. Her formidable reason also begins, slowly, to turn against the daily
regimens of medical logos: “I hate how my life has turned into a series of
doctor appointments, treatments, side effects, blood tests, CAT scans,
liver scans, and bone scans” (CTV 125). Biomedicine keeps Rosenblum
alive, as she knows, and she grudgingly accepts its enlarged presence—
until the moment when her now-cancerous liver suddenly no longer
responds to chemotherapy. A rationalist still, she makes a sober cost-
benefit analysis of further treatment: terrible side effects, great risks, and
very few rewards. Curiously, reason brings her to the same decision that
Butler reaches with no more than a momentary burst of emotional intelli-
gence. They both agree to exit the world of medical logos and to enter the
new and uncharted territory of medical eros and not-knowing.
“Now medicine has no more knowledge to offer me,” Barbara Rosen-
blum writes. The nadir of medical logos and the dead-end of knowledge
nonetheless initiate, as for Styron, a crucial turning point. “So I have
decided to face this period with the wisdom that love and friendship pro-
vide and use the time I have left to write and to have fun” (CTV 163).
Medical eros might seem a desperate last resort—Rosenblum’s white flag
of surrender—but perhaps eros and logos for Rosenblum have simply
changed places. Once her cancer spreads out of control, the love and
friendship basic to this introspective relationship between women who
met in m iddle age (after failed marriages) simply assert their sometimes
118 T he S t o ries
unseen dominance. The illness narrative turns into a distinctive and

hotly contested dialogue in which, as death nears for Barbara Rosenblum,
it is medical eros that speaks with a dominant voice.
Medical eros takes a deep interest in topics such as pleasure and sex
that hold little value for medical logos. Cardiac surgeon Larry Zaroff
worked near miracles to repair the damaged heart of an underworld boss;
his patient, Zaroff told me, was unimpressed and complained that the sur-
geries did nothing to fix his impotence. Medical logos, despite its skill in
repairs, does not always recognize what the patient truly wants or fears.
Rosenblum writes frankly about how the side effects of her cancer treat-
ment involved changes in vaginal tissue, loss of vaginal moistness, and
finally a complete absence of sexual desire. “I confess I was still nervous
about not making love” (CTV 132), she admits, and Butler too confesses
that she missed their former sexual intimacy, feeling vaguely cheated,
as if she w ere back in her sexless marriage. Rosenblum knew what was
going on. “I suspect Sandy would have liked it better,” she writes, ever
the rationalist, “if I experienced the life force as erotic energy, as libido.
But I don’t” (CTV 132). At this dangerous flash point in their strained
relationship, who is the unexpected champion who saves the day with
an erotic solution?
“We make love at the typewriter, not in the bedroom,” writes
Rosenblum about their new way to express intimacy through writing
(CTV 132). “We typed, interrupted, criticized, added, paced, drank coffee,
laughed, then grew thoughtful, intense, or joyous with relief when just the
right word or image emerged. It was a making of love. An honoring of our
bond. Lovemaking” (CTV 141). The passage captures the spirit that makes
Cancer in Two Voices such a striking if indirect contribution to the liter
ature of medical eros. “The work we did had the focus, the passion, the
sense of completion our lovemaking once had,” Butler also concludes, but
this labor had nothing in common with industrial or commercial produc-
tion, and it offered a knowledge that differed from the products of instru-
mental reason. As Butler reports on their erotics of literary coproduction,
“I often felt similarly spent when a work session ended. But so loved. So
known. So deeply connected to this w oman” (CTV 141). Eros, in its em-
brace of not-k nowing, provides access to a form of personal erotic knowl-
edge: the lover “so known” by the beloved. It is an imperfect but crucial
knowledge, whose truth lies not in repeatable experiments or in falsifi-

able hypotheses but rather in the power of the human connections that it
permits and strengthens.
HIV: Stories of AIDS in Africa

Is t here a politics of medical eros? Biomedicine certainly lobbies hard in
its own professional and political self-interest, but not-k nowing brought
me to this open question because I thought I knew something about AIDS.
I was wrong. I knew something about AIDS in the developed world. I knew
nothing, however, about AIDS in Africa. Not-knowing, in this case, meant
culpable ignorance—there was much I needed to learn—but I suspect that
it was ignorance widely shared. How many people in Europe or North
America understood the crisis in Africa? My not-k nowing, as it turned
out, was more than a state of ignorance. It was also a condition, basic to
AIDS in Africa, that no amount of learning could stamp out. My abrupt
wake up came when I encountered a book by Stephanie Nolen entitled
28: Stories of AIDS in Africa (2007). Nolen, as the award-winning Africa
bureau chief for Toronto’s Globe and Mail newspaper, traveled extensively
in Africa, and her book offers the story of one person to represent each
million of the 28 million Africans infected by HIV at the time she wrote.
The twenty-eight illness narratives were my belated introduction to the
international, geopolitical complexities of medical eros.
Any sexually transmitted disease holds an opportunistic relation to
eros. As Nolen writes, HIV targets the topics that p eople generally least
like to discuss: “the drugs we inject, the sex we have, especially the sex
with p eople we aren’t supposed to have sex with—and the interactions
least open to honest discussion or to change.” 15 Traditional societies in
Africa often regard the discussion of sex as taboo, which greatly inhibits
prevention and treatment. Most important, Nolen emphasizes that HIV
thrives on “imbalances of power” (AA 5). It got its foothold in Africa
among sex workers, drug users, gay men, and migrants—the poorest and
most marginalized members of African societies—but it also had easy ac-
cess to politicized power imbalances crisscrossing the continent, much
like the network of highways traveled by long-distance truckers that pro-
vided ideal transmission routes for the disease. In 1986, Rwanda did the
120 T he S t o ries
first national survey of HIV prevalence. The nightmare result: among

city-dwellers, 17.8 percent were infected. Twenty million Africans, within
two decades, died from the disease. Twenty million deaths can depopu-
late the entire state of New York. New York City would resemble the empty
postnuclear urban wastelands in disaster films. It was devastation on a
scale almost impossible to understand.
Eros revealed another layer of political complication when I spent four
months on a round-the-world educational cruise where my shipmates in-
cluded the charismatic Emeritus Archbishop of Cape Town, Desmond
Tutu. Tutu—a former lecturer and board member of the academic pro-
gram Semester at Sea—is a veteran of many voyages, and he is beloved by
students, whose affection he returns. I met him by virtue of signing on as
faculty for the spring 2013 voyage, which included ports of call in Japan,
Vietnam, China, India, and Africa. I knew about Tutu’s Nobel Prize
awarded for his crucial role in the transition from apartheid rule as the head
of the South African Truth and Reconciliation Commission. He is less well
known, however, for his role in the Desmond Tutu HIV Foundation—now
housed within the Desmond Tutu HIV Centre at the University of Cape
Town. The Tutu HIV Foundation provided the first and only effective
treatment for HIV / AIDS in the early 1990s, when antiretroviral drugs
were almost impossible to obtain elsewhere.16 It was a time when the stigma
of HIV / AIDS had turned many African patients into (socially speaking)
nonpersons. Stigma in Africa operated with special cruelty b ecause Afri-
cans do not share in the cultural legacy of rugged individualism. Ubuntu,
a Bantu word, refers to the traditional African form of life that situates
our basic humanness in social connections.17 “Ubuntu,” as Tutu once
explained, “says that we cannot exist as a h uman being in isolation. We
are interconnected. We are family. If you are not well, I am not well.” 18
Descartes taught Western philosophers to believe that being is
identical with reason: I think, therefore I am. This ultrarationalist
proposition was almost guaranteed to catch the attention of generations
of professional thinkers and reasoners. Archbishop Tutu translated the
founding principle of Ubuntu into a paradoxical, anti-Cartesian statement
that subordinates human reason to human connection: “I am because
you are.”
Eros, among its multiple influences, contributes to the affective bonds

not only between individuals but also within communities. HIV / AIDS,
however, held the anti-erotic power to unravel Ubuntu. Just as HIV /
AIDS attacked the individual immune system, it also attacked the social
cohesion at the heart of African identity. Nolen provides heartbreaking
stories of gaunt villagers, demonized, left alone to die b ecause fellow
villagers suspected them of wasting away with Slim—the local name for
AIDS. As the number of AIDS victims mounted, the number of AIDS
orphans also mounted, alarmingly, as villages could no longer look a fter
the multitudes of orphaned c hildren. Grandmothers were unable to carry
the burden of so many young castaways, and the AIDS orphans were in-
creasingly left to fend for themselves. How does an impoverished ten-
year-old girl care for her two younger siblings? Prostitution—a common
solution—simply perpetuated the dilemma. HIV / AIDS, in short, held a
distinctively African profile, and thus it also exposed the ways in which
diseases always take the sociopolitical shapes implied by specific cultural
and historical contexts. Eros was the primary vector for spreading HIV
from reservoir to host, and eros in Africa seemed powerless to help miti-
gate the social chaos it caused. On a scale unlike the dramas that unfolded
in American living rooms and with l ittle or no organized gay resistance,
in Africa it was eros against eros.
We can learn from stories. Although medical logos relegates anecdote
to the lowest level of evidence-based knowledge, Kathryn Hunter has
shown how medical education is, in practice, shot full of narrative, from
attention-grabbing lecture material to cautionary tales swapped around
the watercooler.19 Public-health narratives can also spread the word and
teach strategies of prevention. Narrative education failed badly in Africa,
less from failures implicit in narrative than from African geopolitics. “Put
simply,” Nolen writes, “millions of Africans are living with a virus from
which they might easily have been protected if they had had access to
education about it, or to the means of defending themselves” (AA 11).
Africa, she notes, consists of fifty-t hree countries with very different
traditions, resources, languages, and political structures, and these
continent-wide separations helped discourage or defeat effective responses,
both narrative and medical.
122 T he S t o ries
True, major improvements have occurred since Nolen published her

book in 2007, but such improvements (funded in part by the U.S. $15 bil-
lion Emergency Plan for AIDS Relief) possess not only a biomedical
signature—medical logos as answer—but also a pol itical and narrative
subtext. While Nolen’s eyewitness stories help us learn about HIV / AIDS
in Africa, they also embody and describe the power of narrative, espe-
cially when the narrative is a brief speech by an eminent and beloved
African hero.
“We have called you today,” Nelson Mandela began in his slow, digni-
fied style—the imprisoned political militant who became the first black
president of f ree South Africa—“to announce that my son has died of
AIDS” (AA 313). Mandela is justly revered worldwide, but his term as pres-
ident, from 1994 to 1999, reflects the failures, blindness, and confusion
marking the distinctively African story of AIDS. “While he was in office,”
Nolen writes of Mandela, “South Africa became the most infected nation
in the world. Yet Mandela himself rarely spoke the word AIDS” (AA 316).
The HIV infection rate in South Africa r ose from less than 8 percent of
adults when he took office to nearly 25 percent, and his personal silence
as president translated into governmental paralysis. His silence—to be
fair—reproduced the domestic silence that gripped villages and families,
where men refused to use condoms and AIDS was a forbidden topic.
“Even in 2005,” Nolen explains, “when eight hundred people a day died
of AIDS in South Africa, no one liked to say the word” (AA 315). Then
on January 6, 2005, five years a fter he had stepped down as president,
everything changed when Nelson Mandela walked slowly from his
house, as if bearing the full weight of his twenty-seven years of political
imprisonment—and so much more—to address the media assembled on
his Johannesburg lawn and to announce the death of his son Makgatho
from HIV / AIDS.
“Let us give publicity to HIV / AIDS and not hide it,” Mandela con-
tinued, and his statement registered like an earthquake. This was more
than a family matter. As videotape recorders rolled and cameras clicked,
Mandela offered the full weight of his personal reputation in an effort to
change the African culture of HIV / AIDS. Mandela spent the rest of his
life—joined by his activist wife and former nurse, Graça Machel—
deploying his worldwide fame in campaigning boldly, tirelessly, and ef-
fectively for social change to repair the damage that HIV / AIDS had
caused and to eliminate its further threat. He kept well informed about
biomedical advances, especially new drug therapies, but he was far more
than a champion of medical logos. Wasn’t t here a trace of eros in the
perpetual smile of the well-dressed, elderly, ex-president who always
insisted, smiling, that he was no saint? Mandela’s story of change—about
the social power of one leader’s late awakening—belongs to the full narra-
tive of HIV / AIDS in Africa. It is a story that includes the revelation about
how narrative possesses the power to address and to repair the damage
that eros, illness, and narrative (like the narrative of stigma) can also cause.
Locked-In Syndrome: The Diving Bell and the Butterfly

Imagine that you wake up completely paralyzed. The only bodily motions
that you control are your eyelids, and somebody just now—you don’t know
who—is sewing your right eyelid shut! Eventually you learn that you have
spent the last several weeks in a muddled stupor, following twenty days
in a coma. Well, your left eyelid works, so you have at least the blurred
half-v ision necessary to appreciate the absolute existential bleakness
of your condition. “In one flash I saw the frightening truth,” as Jean-
Dominique Bauby reflects on the moment when—as his metaphors of ruin
suggest—he sized up the full grimness of his situation. “It was as blinding
as an atomic explosion and keener than a guillotine blade.”20
Medical eros would seem wholly irrelevant to a patient who has recently
suffered a massive cerebral stroke that knocked out his brain stem and
paralyzed his motor system. The rare event, known to medical logos as
“locked-in syndrome,” has no standard treatment and no cure. All but
10 percent of patients with locked-in syndrome die within the first four
months. The occupational therapist informs him, with a euphemistic
phrase, that he is destined to live out his days in a wheelchair. His life as
he has known it—as the bon vivant, forty-three-year-old editor-in-chief
of the glossy Paris-based fashion magazine Elle—is effectively over. Bio-
medicine, although it can provide life-support, speech therapists, and
minimal physical rehabilitation, has no answers and nothing to offer. At
this impasse where reason and logic fail, his only effective recourse, solace,
and hope would come from medical eros.
124 T he S t o ries
Locked-in syndrome, while paralyzing almost every motor function

short of Bauby’s left eyelid, spares his inner life—la vie intérieure—and
thus leaves open an unanticipated passage to the erotic. “Individuality,”
wrote the psychologist and philosopher William James, “is founded in
feeling; and the recesses of feeling, the darker, blinder strata of character,
are the only places in the world in which we catch real fact in the making.”21
The real facts of B
auby’s life, as distinct from a mere official diagnosis of
locked-in syndrome and a prognosis of imminent death, have far more to
do with feeling than with the natural history of disease. Helped by his
speech therapist and by an incredibly patient young woman, Claude
Mendibil, who served as transcriber, Bauby composed an amazing
memoir by spelling out e very word, letter by letter, with a blink of
his one functional eyelid. That is, he would blink when Claude’s finger
landed on the right letter in the alphabetic frequency chart she supplied.
Narrative often takes the shape of a particular genre or subgenre, from
detective fiction to horror films, but t here may be no weirder illness nar-
rative than a memoir (written by a man who cannot move) that invokes the
form of travel literature. “I loved to travel,” Bauby spelled out blink by
blink (DB 103). Love of travel identifies another role for eros; this glimpse
into Bauby’s inner life is more than just a random bit of autobiography.
He explicitly describes the book, at the outset, as “beridden travel notes”
(DB 5), and the concept of bedridden travel captures both the ironic spirit
of his crazed blink-by-blink writing project and the Gallic wit inseparable
from his identity and inner life. Travel literature as a genre often involves
a threat to life that ushers in the creation of a new or much-altered iden-
tity. The journeys of Bauby’s inner life—from flamboyant excess to deep
despair—create a one-of-a-k ind document in which identity is always
under threat, including the threat of death, while it is writing, ironically,
in the improbable genre of travel literature that somehow sustains him.
The book’s framing paradox—a travel narrative written by a man un-
able to move—extends even to the droll last line: “I’ll be off now.” Bauby,
of course, has nowhere to go and no way to get there. He died two days
after the French publication of his book. His inner life of airy “butterfly”
excursions, as he calls his brief chapters, always returns to an immobile
diving-bell body. Nonetheless, travel narratives include a long history of
erotic adventure, and desire itself provides unexpected travel-related plea-
sures. Paralyzed, deformed, and reduced in his own unromantic account

to the status of a jellyfish, he nonetheless sets off on nightly erotic adven-
tures. “You can visit the woman you love,” he says of his m ental travels,
“slide down beside her and stroke her still-sleeping face” (DB 5). Eros
regularly deserts him, but also continually reappears and keeps him com
pany. The entire chapter that he devotes to a journey he once took with
his girlfriend to Lourdes—which Bauby calls the “world capital of miracles”
(DB 61)—focuses on a romantic breakup. An unapologetic hedonist, he
does not spare his own faults, and he also refuses consolation, religious,
moral, and medical. He understands that his journalistic rivals in the
world of Paris fashion now dismiss him as a h uman vegetable. He under-
stands that medical logos has already written him off. Eros is what re-
mains, and for Jean-Do (as his friends called him) eros proves as vital as
any vital sign.
Desire is what keeps him going: “I need to feel strongly,” Jean-Do
confesses, “to love and to admire, just as desperately as I need to breathe”
(DB 55). His need for strong feeling—desire raised to the level of an exis-
tential requirement—takes two main forms. First, abiding affections and
friendships help constitute what he explicitly calls “the chain of love that
surrounds and protects me” (DB 41). This chain of love includes his
ninety-three-year-old shut-in father, his eight-year-old daughter, his cur-
rent girlfriend, his ex-wife, his speech therapist, and the person to whom
he dedicates the book, his transcriber Claude Mendibil. The imagery of
love as a chain sometimes gives way to a lighter, airy, butterflylike imagery.
“A letter from a friend, a Balthus painting on a postcard, a page of Saint-
Simon,” he writes, “give meaning to the passing hours” (DB 55). The
“meaning” of such miscellaneous scraps and tatters of human friendship
embrace an erotic dimension that he not only recognizes but also devises
fantasy plans to celebrate: “One day I hope to fasten them end to end in
a half-mile streamer, to float in the wind like a banner raised to the glory
of friendship” (DB 84).
Medical eros takes a second basic but indispensable form implicit in
the image of a kite-tail tribute: pleasure. Memory and imagination both
transport Jean-Do on erotic mental journeys in which pleasure, as an af-
fair of inner life independent of his locked-in state, still retains its power
to excite. Such memories are, like eros, sometimes bittersweet, but they
126 T he S t o ries
can also call up and almost reproduce the delight he took in books, warm
baths, or a glass of scotch. Dreams and daydreams also carry an erotic
charge. Wrapped up in blankets, he imagines that he is a director re-
shooting scenes from famous films. Or he is both the film star and the
character: “I am the hero of Goddard’s Pierrot le Fou, my face smeared
blue, a garland of dynamite sticks encircling my head” (DB 29–30).
Writing held erotic, almost sexual pleasures for Barbara Rosenblum and
Sandra Butler, but Bauby’s nighttime travels in la vie intérieure (as he pre-
pared for the next day’s writing) temper erotic pleasure with an ironic
self-awareness. As he knows, Goddard’s film concludes with the hero
(madman, bourgeois runaway, and philosophizing criminal) struggling
to defuse the garland of lit dynamite sticks—but too late. Eros, despite the
pleasures of imagination, cannot for Bauby completely ignore or erase its
equally strong link with approaching death and the not-k nown.
The bittersweetness of eros is finally the best that Bauby can hope for,
since pleasure so often comes mixed with melancholy, like the piquant
scents he recalls (DB 103). In his mental travels, he imagines flying to Hong
Kong, where a French designer had, in fact, added Bauby’s image (in
tribute) to a chair at the Peninsula Hotel. Would a miniskirted Chinese
beauty, he wonders, choose to sit in his chair if she knew how he looked
now? (DB 106). He creates fleeting substitute identities for himself as a
race-car driver, a Roman soldier, a long-distance cyclist. Travel, real or
imaginary, is not just about observing foreign cultures from an objective
position of relative safety and detachment. Travel also contains a subver-
sive dimension.22 It allows us space to try on new identities. As we change
place, the new places (in ways large or small) tend to change us. The
unforeseen outcomes may threaten or topple identity. All travel, in this
sense, is mental travel, unpredictable and dangerous.
“I am fading away,” writes Bauby as his travel narrative proceeds.
“Slowly but surely . . .” (DB 77). Neither medical eros nor medical logos
can offer him a way out. The narrative shards that imagination, memory,
and desire conjure up cannot erase the nightmare, regret, and futureless
future that are also salient facts of Bauby’s inner life. The Diving Bell and
the Butterfly contains enough moments of surplus dread—“irrational
terror swept over me” (DB 53)—to offset any sentimental wish to read the
book solely as a feel-good testament to the human spirit. Travel in its struc-
ture usually implies a return home, if only as an object of desire, like

Ulysses willing his return to Ithaca, but in Bauby’s butterfly excursions
the only return home is to the paralyzed diving-bell body. Pleasures are
temporary; eros notoriously comes and goes. In place of optimism or
edification, Bauby (antihero of the inner life) creates the narrative
self-portrait of a man who strugg les against horrible misfortune using
as resources only desire, wit, and ironic self-awareness. His mental travels,
he knows, are a kite-t ail of scraps. T here is no arc, no trajectory, no
emergence, no homecoming. It is storytelling alone that must sustain
him, like Scheherazade, until the stories give out. His jaunty, hard-won,
traveler’s farewell—“I’ll be off now”—is a tribute to what medical eros can
accomplish when medical logos gives out.
Palliative Care: Still / Here

“In its beginnings,” wrote the famed dancer and choreographer Bill T.
Jones, “dance was something that we, as a community, enjoyed. It was a
way we told our stories.”23 Medical eros extends its status as contrary and
supplement to medical logos far beyond written or even oral narrative: it
embraces the nonverbal, bodily, communal expressiveness of dance.
Jones’s famous multimedia performance piece Still / Here (1994), created
in collaboration with video artist Gretchen Bender, returns dance from
purely formalist movement to what Jones considers its origins in narra-
tive and in community, but the return takes a surprising contemporary
turn. Jones based Still / Here on the so-called Survival Workshops that
he conducted in eleven cities, enlisting as participants ordinary people
who w ere living with serious, even terminal, illness. Medical eros has now
crossed an edgy line from private bedside or personal memoir to dance—
public bodies on stage engaging serious questions about illness, dis-
ability, death, and dying. Jones is undeterred. Still / Here also holds very
personal significance b ecause he had recently disclosed his own status
as HIV-positive.
Still / Here engages bodies and dance in exploring the delicate, explo-
sive, subsurface terrain always implicit in the links between eros and
death. Eros, of course, has an ancient affinity for dance, as both rely on
the allure of bodies and on a nonrational drive as primal as Dionysian
128 T he S t o ries
rites. Narrative has long held a respected place in classical ballets, which
often reenact familiar stories; but contemporary dance (like abstract art)
frequently minimizes or eliminates narrative. Still, Jones might argue that
even abstract contemporary dance retains some basic narrative elements,
such as the couple and the romantic triangle, with their jealousies, con-
flicts, and gender variations. Explicit storylines are superfluous, but
Still / Here in its bold multimedia encounters with eros and death creates
a mixed form in which bodies, m usic, visual images, and recorded speech
collide and sometimes coalesce within an interruptive, fragmented nar-
rative frame set free from plot or story. “Bill T. Jones has always liked to
talk to his audience,” writes the British dance critic Judith Mackrell,
“taking a moment mid-dance to entertain or lecture us about his special
concerns. Even when he doesn’t open his mouth, his shows still speak
loudly of the politics and passions of their subject m atter, whether they
be sex, race, art or death.” 24
Politics and passions give Still / Here an erotic charge that underlies
Jones’s entire multimedia performance. Videotape projected onto move-
able screens brought the images and voices of participants from the Sur-
vival Workshops into the live dance. That is, while his professional
dancers performed stylized movements that Jones drew from observing
participants at the workshop sessions, spectators simultaneously saw the
f aces and heard the speech of p eople struggling with serious illness or
with the prospect of imminent death.
“My name is Tawnni Simpson,” says a videotaped Survivor Workshop
participant, a cystic fibrosis patient. “I’m twenty-five and I think about
sex” (LN 264). Tawnni Simpson worries that she may never find a lover:
“Sex is something that’s hard for me b ecause of my lung illness.” Jones
writes that it was important for him to focus on her desires, which matched
the desires he recognized in his healthy young dancers. The collabora-
tive result onstage is an extended visual ménage à trois in which two hand-
some young male dancers flirt with, flip, vie for, and fondle a petite but
hardly passive female dancer “with the w ill and ambition of a professional
quarterback,” Jones adds (LN 264). It was the “spirit” that workshop sur-
vivors expressed in facing serious illness that Jones said he wanted to
embody, as a visual metaphor, in the vitality and power of his dancers.
Such spirit, too, belongs to eros and the inner life.
All this provocation was too much for Arlene Croce, the dance critic
for The New Yorker, who ignited instant controversy starting with her first
sentence: “I have not seen Bill T. Jones’s Still / Here, and have no plans to
review it.”25 In explanation, Croce asserted that Jones’s work belongs to
what she regarded as a misguided cultural trend t oward “victim art.”
Richly deserved dissent poured in from celebrities in the arts, but in one
small, significant area her comments are useful. Still / Here is remarkable
because Jones based it on workshops conducted with people who might
easily be placed in the class of victims, and Still / Here aggressively de-
victimizes them. More positively, the bodies and voices both on screen
and on stage celebrate an erotic passion and desire affirmed even in the
face of serious illness or of imminent death. Still / Here both frees serious
illness from the dominance of medical logos and—while never denying
the struggle that illness entails—manages ultimately to celebrate a joyful,
indomitable, and even erotic will to live. The videotape images, projected
on three g iant screens, return t oward the conclusion to dwell on the f aces
of workshop participants—among them a young girl (“Lucy”) seen at the
start wearing a baseball cap. As Jones described the scene, “The elec-
tronic blue of the third screen suddenly blossoms into the moonlike
visage of Lucy, a young cancer survivor wearing a cap; she smiles enig-
matically, drops her eyes, and appears to float up and out” (LN 259). The
enigmatic smile, like the embraces that Jones shared with workshop par-
ticipants, offers an unspoken assent to life that leads beyond speech or
reason, beyond logos, into a realm of erotic not-k nowing.
An assent to life, in Bataille’s account of eroticism, cannot deny or
ignore death, which participates in the erotic as well as marking its limit.
Death, of course, takes many forms: as the m other of beauty, aching mel-
ancholy, autumnal fullness, or even as Sadean night journeys into the
abject and horrific. Still / Here does not deny or ignore death but rather
celebrates the life force that endures even in the shadow of death and
dying. The only voice that it denies is the personal or social narrative of
victimization. Still / Here is not victim art, whatever that might be, but
rather an art that gives body, voice, movement, some measure of grace,
and full human status to people whom critics such as Croce might clas-
sify as victims. Jones had a personal motive to face the dehumanizing
aspects of serious illness. In a televised interview Bill Moyers asked what
130 T he S t o ries
Jones most feared. Jones instantly replied, “Pain.” He had watched his
long-time lover and artistic partner, Arnie Zane, die of HIV / AIDS in un-
bearable agonies that left Zane (as Jones says) “bleating like an animal.”26
Palliative medicine is a relatively recent subfield that has grown in
stature and in importance since Still / Here opened in 1994. The U.S.
Academy of Hospice Physicians was formed in 1988, and it took its present
name, the American Academy of Hospice and Palliative Medicine, in
2000. Hospice has its roots in the United Kingdom through the work of
Dame Cicely Saunders. Palliative medicine defines its scope more broadly
as the prevention and relief of suffering, especially in patients with serious
and life-threatening illnesses. The World Health Organization both
widens and narrows the focus in stating that palliative medicine attends
to the assessment and treatment of pain and other problems, “physical,
psychosocial and spiritual.”27
Physicians trained in the biomedical model still complain that pallia-
tion implies merely “covering up” symptoms, as opposed to the biomed-
ical emphasis on prevention, treatment, and cure. The Latin root palla
does refer to an outer cloak or covering, but cloaks in earlier eras—before
sidewalks and paved roads—had a job to do: offering protection against
the assault of dirt, mud, rain, and sleet. Palliative medicine might be de-
scribed as protecting patients against the assault of symptoms.28 Its rise
coincides with a period when attitudes toward the treatment of dying or
terminally ill patients are changing faster among doctors than among fam-
ilies, who are more often now the source of demands for every available
drug and procedure. Too many patients delay the choice of hospice until
the last week of life and so miss out on the solid advantages that hospice
care provides. Ruth, for example, has received a greatly improved wheel-
chair with braces installed that prevent her head from slumping to one
side. Some patients actually improve a fter declining further biomedical
attention. The staff, almost like proud parents, say that the patient has
“graduated” from hospice care. This is a topic, however, that for me stirs
nightmarish emotional conflicts, as hospice now keeps oxygen and mor-
phine ready at Ruth’s bedside, and I simply wait.
Bill T. Jones in Still / Here offers more than a bold performance af-
firming life in the face of serious illness and death. He also points up the
larger personal and cultural need to invent compelling new narratives of

death and d ying.
What might new narratives of death and d ying look like? Medical logos
here lacks tools and resources for change, since it in effect authorizes (even
if it does not actively promote) the prevailing end-of-life narrative that en-
folds patients in the frontier myth of fighting to the b itter end. Dylan
Thomas put this American myth in more poetic imperative: Do not go
g ently. In truth, patients at the end of life are often too weak to fight, lying
semicomatose, hooked up to blinking, beeping biotechnologies. The bio-
medical narrative also implicitly endorses a spare-no-costs approach,
until the medical ammunition runs out. The social and economic costs
are massive: medical care at the end of life now consumes 10 percent to
12 percent of the total U.S. health-care budget. It consumes a whopping
27 percent of the Medicare budget. The biomedical or frontier narrative
is not only ruinously expensive but also, as many frustrated physicians
will tell you, inhumane. Why order more tests for patients in their nine-
ties d
ying of end-stage cancer? Barbara Rosenblum had to create her own
personal narrative frame when she decided to discontinue further med-
ical treatment. “I w ill not fight loudly into the night,” she asserts, perhaps
with a nod to Dylan Thomas. “I w ill go softly and with love.”29
We like to say cost is no object when it comes to medical care, especially
at the end of life, but we are deceiving ourselves. Cost is a crushing burden,
and cost-related medical decisions about limiting care are made e very
day, if not publicized. Suppose a new narrative of death and d ying saved
significant sums, in addition to its primary focus on compassionate
end-of-life care? Hospice and advance directives (specifying end-of-life
choices) can offer significant cost savings if used effectively. Between
25 percent and 40 percent of health-care costs at present are incurred
during the last month of life.30 What changes might persuade people to
make end-of-life decisions that are not only in their own best interest but
also in the interests of the nation? Medical eros, as the power that holds
sway over narrative, might offer two narrative possibilities with real
hope for transforming the way patients choose to die.
Narratives of healing can offer a valuable alternative to the biomedical
emphasis on treatment and cure. Ira Byock, a palliative medicine specialist,
132 T he S t o ries
makes a critical distinction between cure and healing, emphasizing that

many forms of healing can take place even as patients enter their last weeks
of life. 31 In terminal illness, cure is by definition not within reach, but
dying patients can experience rich and vital healing—f amilies recon-
ciled, feuds ended, friendships honored, blessings spoken. Many patients
and families, when offered access to such narratives of healing, w ill
likely prefer them to hospital exits in which their loved ones die in ex-
treme pain, unresponsive, worn down by futile, invasive, agonizing
medical treatments with no real hope of recovery or cure. Such narratives
would certainly include Barbara Rosenblum’s softer turn from cure
toward “love.” Love is undoubtedly a primal agent of healing, and a new
end-of-life narrative that emphasizes healing would allow more patients
to make a timely, worthwhile, informed choice of hospice care.
Narratives of contract sound more like legal documents than stories,
but they can both offer guarantees and create a new end-of-life story.
Modern life is already regulated by legal contracts, and legal documents
are commonplace in medical settings. Some providers now require signed
contracts, for example, from patients who receive prescription opioid
painkillers. Moreover, good deals run smoothly along the American grain,
and a new end-of-life contractual narrative has the advantage of offering
patients a deal some will be unable to refuse. For the American grain in-
cludes one specific end-of-life idiosyncrasy: it turns out, as one survey
found, that Americans are not afraid of dying—they are afraid of dying
in pain. Both hospice care and palliative medicine, with their focus on
symptom relief, are very well supplied (thanks to medical logos) with
established methods to reduce and to control pain. Suppose, then, as an
alternative to the biomedical myth of cure, medical eros offered patients
an ironclad contract for a pain-free death. No death panels, no coercion,
simply a contract and a choice. Patients who choose to accept the contract
can dismiss one massive fear, and a pain-free death is well within the
power of palliative medicine to guarantee. (The contract would be un-
available, however, in a tiny fraction of medical cases where pain control
is very difficult.) The narrative of a contract at least respects the rights of
patients. It gives patients and families a choice, it can facilitate opportu-
nities for healing, and it helps eliminate or address the unbearable fear of
dying in pain. The authors of a book-length study of hospice patients did
not expect what they found: “We were amazed,” they report, “at the ex-
amples of the therapeutic power of h uman presence, honesty, compassion,
humility, humor, and the affirmation of life.”32
Eros holds a close—uncomfortably close—relation with death and
dying, but it can also transform even our last moments into an affirma-
tion. Keatsian longing for transcendence (“half in love with easeful Death”)
may not strike the right tone t oday, but it suggests that end-of-life desires
often yield unique personal narratives: stories that we invent and live out,
right up to The End. Doctors may be caught in the impasse between their
professional desire to preserve life and a d ying patient’s desire to accept
death. Medical eros, among the gifts of narrative competence, at least of-
fers patients the option to write their own endings, which have increas-
ingly less to do with biomedicine and with hospital settings.
Oliver Sacks wrote his last slim book, Gratitude (2016), in his eighties,
when a fatal melanoma had metastasized to his liver.33 In its quartet of brief
essays, the book ignores the biomedical details of his illness. Instead, it
revisits moments from his own individual life story: from the early rejection
of his Jewish heritage to the much later embrace of his gay sexuality. As
if in silent tribute to Asklepios, Gratitude opens with a dream—“huge,
shining globules of quicksilver rising and falling”—while its final sentence
ends on an equally internal and personal note, in his private truce with
Old Testament laws. “I find my thoughts drifting to the Sabbath, the
seventh day of the week, and perhaps the seventh day of one’s life as well,
when one can feel that one’s work is done, and one may, in good con-
science, rest.” The movement from “I” to “one” erases any hint of egotism
from Sacks’s summation of a life spent in the tireless service of medicine,
but a life spent, too, in writing his distinctive “clinical tales” that affirm
remarkable h uman powers demonstrated even amid the experience of
illness and disabilities. Eros nourished him as much as logos. He loved
music; m usic and chemistry w ere his twin abiding passions. Gratitude,
for me, ranks with Schubert’s g reat D-m inor string quartet Death and
the Maiden, composed when Schubert, too, knew that that he was
dying—personal, bittersweet, but not bitter.
Eros offers the possibility for narrating the individual, personal, even
idiosyncratic conclusions we most desire, even amid fears and not-
knowing. We know what Bill T. Jones feared most. Pain. What did Jones
134 T he S t o ries
love most? Bill Moyers put this unexpected question to him in an inter-
view. Jones moved in a graceful arc and replied simply, “This.” His bodily
response underlines the affirmations, despite pain and serious illness, that
Still / Here, too, embodies in its fragmentary multimedia narrative of
dancers in motion. Perhaps, as individuals if not yet as cultures, we are
already constructing the new narratives we desire. The Cedars-Sinai
Hospital complex in Los Angeles—covering almost two city blocks—
displays along its corridors original paintings and limited-edition prints
donated mostly by former patients and families, in gratitude. “How do
you cope with grief?” an interviewer asked Jones after Arnie Zane’s death.
“Locate your passion,” Jones responded, “find out what you love, and give
yourself to it” (LN 249).
Chapter Five
Eros Modigliani: Assenting to Life

Stripping naked is the decisive action.
Georges Bataille, Erotism (1962)
N arratives of passion and eros are not hard to find in Mod-

ernist Paris. “I will never forget Modigliani’s funeral,” wrote the
sculptor Jacques Lipchitz of the b itter-cold January day in Paris 1920. “So
many friends, so many flowers, the sidewalks crowded with people bowing
their heads in grief and respect. Everyone felt deeply that Montparnasse
had lost something precious, something very essential.” 1 Montparnasse,
as spiritual home to the painters, writers, musicians, and dancers who
transformed twentieth-century art, knew very well the disappearances,
wasting illnesses, and abrupt suicides that, among the survivors, failed
to extinguish a w ill to create. Notice how Jean Cocteau, writer, artist,
filmmaker, and right-bank outsider who seemed to know everyone in
Montparnasse, begins the honor roll of g reat contemporaries: “Modi-
gliani, Kisling, Lipchitz, Brancusi, Apollinaire, Max Jacob, Blaise Cen-
drars, Pierre Reverdy, Salmon, all t hose men who barely understood
what they were doing, but who were causing a real revolution in art,
literat ure, painting and sculpture.”2 Poverty was not shameful for the
often penniless Amedeo Modigliani and his comrades but almost an
135
136 T he S t o ries
ideological precondition of art: the mark of a shared freedom from

middle-class values that allowed them to stand apart while they pursued
a revolution into the not-k nown. Better to give away drawings for a glass
of wine, like the Italian hothead Modigliani, than to take the safe, well-
known, commercial route. Was Modigliani a madman? an interviewer
asked Cocteau. He must have been mad, Cocteau replied, to give away
his drawings.3 Modi, as friends called him, often said he wanted a life
“brief but intense.”4 He got what he wanted—dead at thirty-six, with
unseen costs. Two days a fter he died, Jeanne Hébuterne, his pregnant,
common-law wife, leapt to her death from a fifth-floor window in the
home of her bourgeois parents. Her body lay unclaimed on the pave-
ment below for hours.
Famous and soon-to-be famous contemporary artist-friends walked in
the funeral cortège. Picasso, Kisling, Salmon, Ortiz, Brancusi, Vlaminck,
Derain, Soutine. The coach carrying his body was smothered in flowers,
courtesy of his absent b rother, a socialist deputy back home in Italy, whose
telegram read, “Bury him like a prince.”5 The same police who had so
often run him in for public intoxication now stood at attention. “D’you
see?” said Picasso, referring to the nemesis-police lining the street. “Now
he is avenged.”6 The belated payback extended to Paris dealers who over-
night jacked up prices on his previously unsaleable works. T oday, spec-
tators crowd his blockbuster museum shows, somewhat to the dismay of
elitist art critic Robert Hughes. Modigliani’s painting, he jabs, is “modern
art for p eople who don’t much like modernism.” He describes “a queue
of pilgrims”—a nother jab—lined up halfway around a New York City
block and adds, from his knowing height, “The nudes are, of course, what
the general public most likes, but they tend to be overvalued.”7
Modigliani’s nudes are precisely what I want to take as my subject, in
a sideways or slant approach to eros and illness. Questions of value, ar-
tistic or financial, are not my main focus, although it is worth noting that
in November 2015 Modigliani’s Reclining Nude sold at Christie’s for $170
million—t hen the second-h ighest price ever paid for a painting at auc-
tion. 8 Modigliani was Ruth’s favorite painter, both Jewish, both born
on July 12, and his understudied nudes allow us to pursue eros and ill-
ness from writing and dance—from Anatole Broyard through Bill T.
Jones—into the visual arts. Modigliani is almost unique and truly dis-
E r o s M o digliani : A ssenting t o L ife 137
tinctive among Modernist painters for his focus on the human figure,
especially in his melancholy signature swan-necked portraits, but the
nudes are where he emerges unmistakably as the painter of eros: eros
as a life-affirming, life-enhancing, life-giving power. Bataille described
eroticism as assenting to life up to the point of death. Eros in Modigli-
ani’s series of glowing apricot nudes is the power of assenting to life up
to, or including, the point of death. His nudes give him a central place in
the narrative of medical eros as it enters the era when medical logos is
just beginning to secure its professional power and when death takes on
shapes never before witnessed in the history of Western civilization.
Nudes and Nakedness: The Artist Stripped Bare

“There’s only one man in Paris who knows how to dress,” said Picasso,
“and that is Modigliani.”9 Personal display and performance, which ex-
tended to what he wore no matter how threadbare, played a crucial role
in Modigliani’s style. He cut a memorable figure in his trademark dark
brown corduroy suit and red silk scarf, which as he doubtless knew simply
accentuated his handsome features and smoldering brown eyes. “Women,”
as one observer put it, “could not take their eyes off him.” 10 Picasso early
on favored the blue overalls worn by zinc miners or, for photog raphs,
dressed up like a college professor, but he never underestimated Modi-
gliani’s talent. The single crime with which Picasso reproached himself
(in a life remarkable for acts worthy of self-reproach) occurred when once,
dirt poor, he painted over a Modigliani canvas. Dress and self-display
mattered to the ragtag multinational artists reinventing modern art
in Paris, and not just as statements of fashion. Acts of covering and
uncovering—abrupt exposures of the hidden truth—carried new signifi-
cance in an era seeking to create not only a new art but also a new society.
Dress expressed a sense that the veneer of an old world—formal academic
art and a staid bourgeois social order—was peeling away, in decadent
layers, right before their eyes.
“Paris,” according to Gertrude Stein, who knew about such t hings,
“was where the twentieth century was.” 11 Paris is certainly where Modi-
gliani was, despite several trips back to Italy to recover his health. Paris
and the twentieth c entury also included private rituals and not-safe-
138 T he S t o ries
for-public-view displays. As the Montparnasse evenings passed deeper

into alcohol and drugs, the impoverished young Italian painter with, as
several friends observed, the bearing of an aristocrat or prince, would
begin to remove his clothes. Maybe it was at Marie Vassilieff’s canteen,
where the Russian painter (who had studied with Matisse) converted her
second-floor studio into a cheap refuge for the painters she loved. All
the regulars knew the ritual. Modi would stand upright and start by un-
wrapping the long red scarf—four or five feet long—coiled around his
waist in the style of French workers. Sometimes, knowing what was
about to happen, friends seized him and tied up the scarf. But they were
not always so quick. The trousers slipped down to his ankles as he simul
taneously pulled up his shirt. Modesty was not his style: “A ren’t I hand-
some? Beautiful as a new-born babe or just out of the bath. D on’t I look
like a god?” 12 Then came verses recited by heart from Dante, his Italian
poet-hero, or passages from Les chants de Maldoror, a prose hallucina-
tion by the obscure nineteenth-century French poet Isidore Ducasse,
who published under the name Lautréamont, died young, and vanished
without a trace. Modi carried a copy of Maldoror everywhere, and it
soon became the sacred book of surrealism.13 A cynic-outlaw at war with
bourgeois society, Maldoror spoke for the torment that many friends rec-
ognized in Modi despite the charade of brash self-exposure. “A dark
fire,” as Cocteau wrote, “lit his w
hole being.” 14
The public display of Dionysian excess, for Modi, was both strategic
and intimately connected with private concealment, if only as a smoke-
screen, and the truths hidden by his erratic public displays quite often
centered on eros, including its self-destructive range. The affectionate
nickname Modi is indistinguishable in spoken French from maudit, or
cursed: an epithet bestowed on writers and artists in the dark romantic
tradition of Baudelaire (another Modi favorite). His charm and aristocratic
bearing, when stripped away by anger, drugs, or alcohol, exposed the
brooding temper and scornful laugh that made him such a mercurial com-
panion. He famously greeted strangers to the city of Notre Dame with
the aggressive announcement “I am Modigliani. Jew!”15 Certain truths,
for Modi, could not remain hidden and still remain true. Exposure was
a necessity. Or—fissured by self-contradiction—he exposed surface emo-
tion in order to keep deeper passions in protective concealment. The

young Russian writer Ilya Ehrenburg observed Modi’s plunges into “un-
rest, horror, and rage” but noted also how he spurned the usual café art
talk in f avor of discussing literature and philosophy. Philosophy and rage,
literature and striptease. The multiple layers or strata kept something
forever unseen. “I was always astonished by the scope of his reading,”
Ehrenburg expanded. “I don’t think I have ever met another painter
who loved poetry so deeply.”16
The secret to Modigliani’s art is its interest in what remains secret. “It
was h uman beings that interested him most of all and the invisible forces
that were at work in them,” said Léopold Survage, a perceptive French
painter who met him at the artist-café La Rotonde. “Behind the physical
appearance he imagined . . . a mysterious world.”17 Modi never painted
a still life, and he painted only one landscape, derivative and unsuccessful.
Individual human beings are his subject and especially—if one credits
Survage—the “invisible forces” at work within and behind them. Such
an explanation helps account for his insistence on working with a living
model: academic plaster casts preserved the form but not the h uman
vitality. Vital models also meant untrained models, and several sources
confirm that he “loathed” professional models.
His portraits leave no doubt that Modigliani was in pursuit of some-
thing beyond an accurate representation of physical appearances, as his
usual method involved dismissing the model a fter a few sittings in order
to “complete the work from his imagination.”18 What did this imagina-
tive supplement reveal or suggest? A “mysterious world” behind appear-
ances? The swan-necked portraits might yield many responses, but I am
concerned with the nudes only. One fact is undeniable: he painted no male
nudes; his nudes are all women. His work, moreover, is distinctive even
within the long painterly tradition of the female nude. In an exploratory
spirit, without presuming to offer definitive claims, I want to pursue the
thought that eros—both in its life-affirming desires and in its almost req-
uisite immersions into not-knowing—stands foremost among the invisible
forces somehow exposed in Modi’s series of astonishingly exposed female
nudes. First, some background and an interlude.
140 T he S t o ries
Some Background
The nude in Western painting is an academic exercise as predictable as
the still life, but Modi’s nudes explicitly flout academic traditions, and
he held such a lofty view of art and of the artist’s role that it is impossible
to regard the nudes as potboilers for a bourgeois marketplace. The nudes
enter Modigliani’s work only at a specific period—late in his life—when
his friends were alarmed at his sudden visible deterioration after years of
alcohol, hashish, hard living, poverty, and illness. Eyewitnesses described
him in the midst of a meal doubled over coughing. Spitting blood as he
painted, cigarettes and rum close by his palette, Modi doubtless under-
stood his work on the luminous, glowing nudes within the context of his
devil’s bargain for a life short but intense.
The intensity is photographic. A late image shows the formerly hand-
some, clean-shaven artist, who had been so obsessively well-dressed, now
looking like a gaunt, bearded, wild-eyed figure out of Dostoevsky’s un-
derground. “He would thump his chest,” according to one report, “saying:
‘Oh, I know I’m done!’ ”19 In the harsh Paris winter, Modi’s devoted dealer
Léopold Zborowski, a cash-strapped Polish Jew with a poetic sensibility
and a heart of gold, sold his only overcoat to buy painting materials for
his client. He then installed Modi in a studio—a room in Zborowski’s
apartment—supplying rum, models, and a small daily stipend. It was
Zborowski who commissioned the nudes that Modi thereafter painted
(as Cocteau reports) “ceaselessly.”20
Something is at stake here, in this ceaselessness, beyond a painterly in-
terest in form or in ideologies and manifestoes. Classical nudes by defi-
nition uncover the female body, but in some sense they cover over or clothe
the body’s nakedness with the trappings of high art. Are Modi’s uncov-
erings, nonclassical in the extreme, a mode of concealment? Might naked-
ness leave space for the unknown or unknowable? Or, a direct personal
question, why am I so drawn to these nudes? Artists whose work Modi
knew well (Botticelli, Titian, Ingres, Manet, Degas) painted masterly
nudes that d on’t particularly move me, so female nudity or artistic skill
cannot entirely account for my response. Some art critics find female
nudes an oppressive expression of male power: the male artist clothed,
the female model naked, and the infamous “gaze” of the spectator un-
equivocally gendered male. Modi recognized a time-honored gender

politics of the studio, with its erotic imbalances of power. “When a w
oman
poses for a painter,” he explained, “she gives herself to him.” Picasso pro-
21
duced an entire near-pornographic suite in which Raphael paints while

he simultaneously fornicates with his mistress-model. Ruth, not one to
tolerate oppression or gender imbalance, loved t hese Modi nudes as
much as I do. My questions, right or wrong, do not concern gender or
gaze. I keep asking what is it that gives these mysterious, calm, milky-
orange nudes such amazing power?
An Interlude
I have somehow arranged a private visit to a Modigliani nude owned by
the Guggenheim Museum and currently stored in a New York City ware
house. Precautions for my visit are worthy of a spy novel. The curator
telephones me the address only a few hours before my appointment. A
taxi winds through semideserted industrial streets to a nondescript brick
building with a single steel door in a windowless, fortress-like façade. I
have been granted a one-hour audience alone with the painting.
Eros preoccupies me as I lie stretched on the cement floor of the ware-
house—in the almost deserted, echoing, industrial space, no museum eti-
quette is required—gazing underneath a sunny third-floor side widow at
a priceless Modigliani painting from 1917, entitled simply Nude (Figure 5.1).
I recline inches away from the creamy hues and surprisingly rough tex-
tures of a woman painted with eyes closed, wearing a necklace that only
emphasizes (in its minimalist semicircle of beaded concealment) her ab-
solute and totally serene nakedness.
Nakedness differs from nudity, according to Sir Kenneth Clark in The
Nude: A Study in Ideal Form (1956).22 Nudity, for Clark, belongs to high
art. It concerns the perfection of form as represented in classical statuary,
mostly male nudes, and it calls for a calm, contemplative, aesthetic
response. Nakedness, in Clark’s influential contrast, belongs to the un
ideal messiness of a ctual human flesh: it concerns kinetic desire as opposed
to static contemplation. The difference between nudity and nakedness,
at least as Clark proposes it, resembles the geometrical repose of a per-
fect circle compared with the turmoil of a sexual affair. Clark views the
142 T he S t o ries
Figure 5.1. Amedeo Modigliani. Nude. 1917.

Photo Credit: The Solomon R. Guggenheim Foundation / Art Resource, NY.
idealized nude as representing the power of art to transform bare life. As

I recline beside Modi’s reclining nude, I am having none of t hese stale
Clarkisms, and neither is art historian Lynda Nead in The Female Nude
(1992). Nead offers a feminist critique of Clark’s distinction, emphasizing
that the naked body is never simply bare: “Even at the most basic levels,”
she writes, “the body is always produced through representation.”23 Na-
kedness represents one body, nudity another, if you even buy such a bogus
Clarkian distinction.
A distinction between nakedness and the nude silently reproduces
earlier theological distinctions that construe nudity (as, for example, in
Eden) as representing Adam and Eve in a state of ideal innocence:
“clothed,” as the explicit theological paradox runs, with divine grace.24
The Fall of Man, in this theological reading, is what introduced naked-
ness, fig leaves, and material clothing once the immaterial clothing of
divine grace was lost. Modi’s nude propped by the window is certainly
not clothed in a Christianized divine grace, as far as I can tell. Its power
is inseparable from its transgressions. It is, in a poetic paradox that Modi
could appreciate with his knowledge of painterly tradition, a truly naked
nude. The erotic creamy rich sensual flesh tones are sufficient to turn
Clark’s outdated formula inside out, upside down, and backwards. T hese
are nudes somehow set f ree from tradition.
I am gazing at the necklace. The necklace sends an erotic signal, much
like a red scarf or stripper’s veil, as the modest strand of jewelry here only
serves to highlight an absence of clothes: it turns nakedness hypernaked.
It also raises questions. Why does she wear a necklace? Self-expression?
Self-adornment? Or a calculated erotic lure? I recall Édouard Manet’s
Olympia (1865) and its shocking revision of Titian’s Venus d’Urbino, in
which Venus reappears as a high-priced prostitute, utterly naked except
for the black silk ribbon around her neck, perhaps a sign of her genteel
enslavement as a kept woman or simply another prop in the bedroom
where eros is on display and for sale. Modi’s necklace, by comparison,
seems innocent in its ambiguities, even as he depicts the woman as sus-
pended in a private, indeterminate space, defined only by swatches of
solid color f ree from the social details that mark Olympia’s expensive bou-
doir. Formalists might admire how Modi’s semicircular necklace enters
into a geometry repeated in the pubic triangle. Form did not occupy the
Montparnasse regular Francis Carco, penname for French writer Fran-
çois Carcopino-Tusoli, who owned several Modi nudes and whose
response was far more kinetic than Lord Clark’s aesthetic allows. “I had
these nudes in my home like a lover,” he writes, “they w ere women I
loved and I felt alive beside them. And they w ere alive: their presence
excited me.”25
Aliveness—represented in the painting and communicated to the
viewer—is a quality absolutely central to Modigliani’s art. He saw the
artist as a privileged benefactor of aliveness. “Life is a gift,” he wrote on
the back of a painting, “from those who have it and know it to those who
don’t have it and don’t know it.”26 This grandiose statement, which he bor-
rowed from a favorite popular Italian novelist, defines the artist’s gift not
as a talent or genius for making art but rather as the possession of a power
to awaken and to revitalize: to bestow an aliveness on sleepwalkers who
don’t have it and d on’t know they don’t have it.
But there is more to ponder as I recline on the cool cement. What about
the eyes? Closed eyes are a recurrent feature in Modigliani’s work, but in
the nudes they suggest a private and interior state: the woman is not asleep
but rather given over to her own inwardness, as in daydream or meditation.
144 T he S t o ries
In contrast to Olympia’s brazen stare as she gazes directly at the viewer

or customer, the closed eyes of Modi’s nudes suggest an inner life to
which the spectator has no access. Modigliani creates a hypervisible na-
kedness and absolute exposure, down to the pubic hair, but nonetheless
also manages to convey a sense of something still withdrawn and inac-
cessible. His mystical Catholic poet friend Max Jacob once said that
Modi’s portraits, which frequently depicted specific individuals from
Cocteau to Diego Rivera, did not seek to capture appearances or person-
ality but rather “the splendour of the soul.”27 As I continue to gaze, Mo-
di’s nude seems to embody a self-possession that eludes all categories of
control or of understanding. The standard female images embodying male
desire—earth mother, virgin, whore, showgirl, sex goddess—just don’t
apply as they run up against an enigmatic surplus they cannot account
for. What is it, then, that keeps me coming back (what kept Modi coming
back) to t hese erotic, sensuous, mysterious end-of-life nudes?
Eros Ensemble: The Nudes as a Series

I realize, once outside the warehouse, after passing through at least three
layers of security to reach the exit, that my question contains its own re-
sponse. Modi kept coming back because he understood the nudes as a
series. Series are defined by the assumption that one is not enough: com-
pletion or at least fullness requires repetition. Art historians, in mostly
ignoring Modi’s nudes, naturally ignored the crucial fact that he conceived
of the nudes as a series. Modigliani, as his work indicates, thinks in series.
The series constitutes his basic unit of composition; it corresponds to pe-
riods or styles for Picasso. When asked once what school or style his work
belongs to, Modi replied, “Modigliani!”28 His portraits all bear a family
resemblance as Modiglianis, w hether the sitter is Cocteau (thin, prim, and
well-dressed) or a stout nameless working-class girl, and in this sense they
also comprise an undisclosed series. The nudes are not curious outliers,
then, but belong to Modigliani’s serial imagination. The importance of
seeing the nudes as a series lies in the ensemble-effect that alters the impact
and understanding of any single work, much like the limestone heads that
he displayed in the Salon d’Automne exhibition of 1912. The catalogue
describes them as “Têtes, ensemble décoratif.” Individual heads are im-
pressive, but, set in a semicircle, together they create a new and distinctive
artwork that one observer compared to archaic gods from an unknown
religion. When sculptor Jacques Lipchitz encountered several of the heads
set in the open courtyard of Modigliani’s studio, Modi explained directly
that he had conceived of them “as an ensemble.”29 So, too, w ere the en-
semble nudes—or, as I prefer to think of them, slightly adapting a title
now affixed to one of the major paintings in the series, the G rand Nudes.
The decision to paint a series of nudes placed Modigliani in a role he
relished: direct opposition to authority. “We demand, for ten years, the
total suppression of the nude in painting.” So insisted Modi’s fellow coun-
trymen, the Italian Futurists, in the manifesto of 1909. The nude, they
insisted, was “as nauseous and as tedious as adultery in literature.”30
Modigliani pointedly refused to sign their Futurist Manifesto, published
in Le Figaro, which sought to demolish museums, declared an intent to
“glorify war,” and openly announced its “scorn for women.” A racing car
is more beautiful than the Winged Victory of Samothrace, they pro-
claimed. This is the artistic context within which the deliberate decision
to paint not just one nude but a series of nudes marks a significant indi-
vidual stance. Poet André Salmon, who spent his early years wandering
Paris with Modigliani and Picasso, put it quite simply: “Modigliani is the
only painter of the nude that we have.”31
Modi’s opposition to authorities extended to his relation to the paint
erly traditions old and new. His love of the Italian old masters meant that
opposition did not take the form of direct rejections but rather of indi-
rect revisions. Art historians sometimes detect allusions in Modi’s nudes
to previous works such as Giorgione’s Sleeping Venus, but Modi’s nudes
are deliberately unlike the goddess of love, or any goddesses, whose
ghostly remembrance serves only to emphasize the gulf separating classical
deities from Modi’s flesh-and-blood women. Their sensual radiance and re-
pose are less evocative of divine grace or goddess worship than of postcoital
glow. On the other hand, he equally keeps his distance from Picasso’s
angular, distorted, sometimes misogynistic images of w omen, often
former lovers, much as he avoids both the celebrated Cubist dismember-
ments of the body and its depictions of crude sexuality. Picasso, asked to
explain the difference between art and sexuality, replied bluntly: they
are “the same.”32 Modigliani rejects Picasso’s absolute equation between
146 T he S t o ries
art and sexuality. Modi’s nudes affirm a sensuality in which the w omen
in their dreamlike suspended radiance explore, through an unconceal-
ment oddly detached from sexual desires, rich variations in the f ree
play of eros.
The series of nudes marks a very distinctive turn in Modigliani’s life-
long devotion to eros. It all starts with his own sensual presence. On ap-
proaching Modi’s hut-like studio at night, an observer reported seeing a
woman in a kimono, breasts uncovered and hair down, dancing madly
in the moonlight. Modi, “like a faun,” was opposite her, leaping and
yelling. Then, as the observer says, “the woman dropped her kimono and
the two danced nude.”33 The same body-centered intensity carried over
to the act of painting. The Japanese painter Tsuguharu Foujita, another
Montparnasse veteran, said that Modigliani painted in a manner almost
“orgiastic”: “he went through all sorts of gesticulations . . . his shoulders
heaved. He panted. He made grimaces and cried out. You c ouldn’t come
near.”34 His faithful dealer Zborowski was banished from the studio (in
his own apartment) whenever Modi worked on a nude. Although many
nudes explore more serene variations of eros, some are so open and un-
inhibited in their self-display, with an almost calendar-art sensuality, that
painting seems momentarily given over to the limb-loosening, category-
rending, classical power of desire, as in his Reclining Nude (Figure 5.2).
“All he did was growl; he used to make me shiver from head to foot,”
wrote the famed Montparnasse model and baker’s daughter, Alice Prin,
better known as Kiki, as she told of her encounters with Modi. 35 She did
not omit to mention that she found him unusually “good-looking.” Eros
circulates through Modi’s nudes in ways that are finally uncontainable,
like the erotic impulses circulating through Montparnasse, where Kiki
not only refused to wear panties but also turned public cartwheels calcu-
lated to distress the same bourgeois culture that strives to contain eros.
No panties, she said, gave her the same freedom as men to piss outdoors.
Eros affirms a private license that necessarily subverts settled hierarchies,
regulations, and restraints. The nudes in their Kiki-like less-than-subtle
ways affirm an escape from the authority of reason.
Eros, while central to Modigliani’s assertion that the artist bestows on
sleepwalkers the gift of life, nevertheless entails a distressing proviso. As
Anne Carson explains, eros depends on a geometry of lack. We desire
Figure 5.2. Amedeo Modigliani. Reclining Nude. 1917.

Oil on canvas. The Mr. and Mrs. Klaus G. Perls Collection. The Metropolitan
Museum of Art, New York, NY. Image copyright © The Metropolitan
Museum of Art. Image source: Art Resource, NY.
only what we d on’t possess—a nd what perhaps is permanently out of

reach. Between the lover and the beloved, then, a gap opens and an ob-
stacle emerges.36 Comedies overcome all obstacles and unite the lovers,
but comedy is only one mood of eros. Eros, in the intensified aliveness
that it imparts as its gift, cannot prevent a recognition that the ultimate
immoveable obstacle is of course death. Unlike the vacuous kitsch knock-
offs circulating on the Internet, Modi’s nudes in their glowing vitality
cannot finally break away from this darkening embrace with death. Eros
and thanatos, love and death, meet in the luminous Modigliani nudes
in as-yet unexplored ways that confront us ultimately with serious ques-
tions about illness and about its possible relation to medical eros.
Eros as Action: Disturbances in the Field

Bataille in his account of eros describes stripping naked as “the decisive
action.”37 His statement deserves at least modest unfolding. First, the erotic
involves action, and thus it is far more than a mere attitude or feeling.
148 T he S t o ries
Second, the actions of eros entail an exposure far more uncivilized than
simply disrobing for bed: stripping naked returns us to a primal or pri-
mary condition, both of bodies and of minds. Third, such primal expo-
sures imply serious threats or disturbances. Eros does more than put inner
life “in play,” as Bataille’s English translator puts it; as the French text
says, eros puts the inner life “in question” (en question). According to
Francis Carco, when his female concierge discovered a Modi nude on his
bedroom wall, she “nearly dropped dead.”38 Par isian gendarmes were
equally disturbed—perhaps for different reasons or feelings—a nd took
counteraction to restore civil order and social equilibrium. The police
commissioner, unluckily stationed across from the gallery where Modi’s
one-artist show was scheduled to open, had noticed crowds milling about
the gallery. The source? A Modi nude in the gallery window. The
commissioner sent an officer to demand its immediate removal. Berthe
Weill, the gallery owner, crossed the street to ask why. “Those nudes,”
the commissioner stammered, “they have . . . hair!”39
The hypernakedness of Modi’s nudes—nakedness doubly intensified
by the exposed pubic triangle—constituted even in Modernist Paris of
1917 an affront to official values: the violation of an implicit taboo and an
invocation of eros that threatened (as eros in its excess regularly threatens)
a disturbance of the peace and an implicit danger to public order. Eros
in its actions not only disturbs the peace. The w hole business of eroti-
cism, as Bataille says, is to destroy the self-contained character of the
participators as they are in their normal lives. Such destruction, what
ever the outward consequences, is an act of inner life, and actions of
inner life often proceed in a private space, almost in secret or by stealth.
The real danger posed by Modi’s nude hung in Berthe Weill’s gallery
window had nothing to do with crowd control and everything to do with
internal actions. It is thus worth exploring briefly, for their ultimate rel-
evance to issues of illness and health, what specific internal sources of
disturbance Modi’s nudes threatened to uncover or uncheck.
The nakedness of Modi’s nudes posed a particular threat in its sugges-
tion of a stealth female agency no doubt disturbing well beyond the
police force. The nudes, that is, depict individual women in the quiet,
self-assured accept ance of their own sexuality. The women are no less
subversive for their dreaming or meditative repose, especially because in
their stillness they also appear enveloped in a private state of pleasure.

They implicitly challenge the bourgeois norms that expected women to
deny any personal erotic pleasures in favor of depersonalized duties to
family, nation, and God. The ultimate threat enfolded in this erotic strip-
ping naked—free from the invisible garments of middle-class ideology—
is carried by the suggestion that Modi’s nudes, in their stealth refusals,
depict a female pleasure so self-contained and self-sufficient that men, too,
as traditional agents of female pleasure, now appear unnecessary. Yes, by
all means, call the police.
The stealth action of Modi’s nudes also extends to the (subversive) re-
jection of a narrative frame. Female nakedness, in Modi’s paintings,
breaks free from the confining and domesticating limits of story. Much
as the idiosyncratic bodies of his w omen resist the golden symmetries of
classical art, Modi’s nudes refuse to cover their nakedness with the
fig-leaf contrivance of mythological and biblical narratives, especially
narratives of shame, degradation, rape, or narcissistic, coquettish self-
display. The absence of any narrative frame is arguably as impudent and
antiauthoritarian as the presence of pubic hair. Modi reinforces this nar-
rative framelessness by situating the nudes in a strangely ambiguous place-
lessness. Rooms, furniture, and visual backgrounds dissolve into swatches
of rich color, liberating the w
omen from locations that might explain—and
explain away—their nakedness, even as studio models. A bed or sofa of-
fers less an explanation than whatever colorful platform is necessary to
prevent the erotic (as in Figure 5.3) from drifting off the face of the planet.
Modi’s women, if based on models, are not represented as models, or
as fallen women, or as shameless wives. Prostitutes in a hotel where Modi
once stayed, knowing that he was too poor to afford models, sometimes
posed for free, but his paintings never depict the nudes as whores, unlike
Picasso’s Les Demoiselles d’Avignon, which practices its breakthrough
cubist style on women conveniently identified as prostitutes. Modigliani’s
nudes stand defiantly outside time, place, and story, as free from Edenic
innocence as from canons of sin. He does not transform the women into
objects or into angular blocks of color on a canvas. They simply are. Their
erotic presence—being—is complete and sufficient.
The stealth action or inaction of being—simply existing in the fullness
of what is—includes a subversive disturbance that links the nudes with
150 T he S t o ries
Figure 5.3. Amedeo Modigliani. Reclining Nude (Nu couché). 1917–1918.

Oil on canvas. Formerly in the Mattioli Collection. Sold at Christie’s on
November 9, 2015, for $170.4 million. Photo Credit: SCALA / Art Resource, NY.
ideologies of Modernist art and poetry. “A poem should be palpable and

mute / As a globed fruit,” as the American poet Archibald MacLeish began
his “Ars Poetica” (1926), which ends with the famous line, “A poem should
not mean / But be.”40 Being, as a state of self-sufficient fullness unaccount-
able to meaning or reason, is the quintessential subversive state toward
which eros leads. The unseen action of Modi’s g reat nudes, as the
ideology of “Ars Poetica” might contend, is not to mean something but
to be. They confront us with unmediated, unapologetic, erotic being.
Being, however, does not remain entirely undisturbed in Modi’s luminous
nudes, even if the obstacle or lack or absence implicit in eros remains no
more than a hint or shadow. The intimate connection between eros and
death, however, also shadows the g reat nudes, even unseen, if we re-
member that t hese dazzling canvases were painted by an ill and emaci-
ated artist, worn down to the bone, spitting blood and swilling rum as he
painted, cigarettes close by his palette. What happens in the studio, of
course, happens as if in secret, privately, by stealth—off the canvas—but
Modigliani’s nudes (while set free from story, liberated from meaning,
allowed to repose in a subversive fullness of being) never entirely break
f ree from a shadowy link with death. Ironically, it took a storyteller, nov-
elist Philip Roth, to bring this underground disturbance up into the
light.
Roth’s novel The D ying Animal (2001) unfolds the continuing erotic
education of his regular protagonist, a m iddle-aged Jewish professor
named David Kepesh. Born before the sexual revolution of the 1960s,
Kepesh makes up for lost time by seducing his ex-student Consuela, who
(born after the revolution) is quite willing to be seduced. They enter into
an unusually intense eighteen-month sexual liaison until Consuela initiates
a breakup. Then, after six years of silence, Kepesh receives a postcard
from Consuela bearing on one side the image of Modigliani’s Reclining
Nude—also sometimes known as Le Grand Nu (Figure 5.4).
Does Consuela, Kepesh wonders in a dark mood, intend the image as
a stealth invitation to resume their sexual enthrallment? He imagines that
Consuela’s invitation comes directly from the w oman depicted in Modi’s
painting: “A golden-skinned nude inexplicably asleep over a velvety black
abyss that, in my mood, I associated with the grave. One long, undulating
line, she lies t here awaiting you, still as death.”41 The always self-absorbed
Kepesh does not know how uncannily prescient he is. Conseula is even
then dying of cancer.
Modigliani’s Reclining Nude—a treasure of the Museum of Modern Art
in New York—finds its ideal critic in the eros-centered Philip Roth, al-
though of course Roth fits his description of the painting to the mood and
mind of the fictive David Kepesh. Still, who better situated than Roth to
recognize the covert link in Modi’s nudes between eros, loss, and death?
Death also enters indirectly into Modigliani’s portraits as a distinctive
undercurrent of melancholy and a mute embodiment of loss that many
observers sense. Ilya Ehrenburg, his young Russian contemporary in
Paris, describes the sitters represented in his portraits as resembling “hurt
children.” “I believe that the world seemed to Modigliani,” Ehrenburg
concludes, “like an enormous kindergarten run by very unkind
adults.”42 If so, the portraits help us recognize how the nudes (with their
beautiful, vulnerable curves, their youth, their glowing vitality, their
milky orange tones and dreamlike serene expressions) seem to emerge
from some erotic alternative universe: an artificial paradise with no ad-
dress, where the unkind adults seem magically absent. The nudes make
152 T he S t o ries
Figure 5.4. Amedeo Modigliani. Reclining Nude (Le Grand Nu). Ca. 1919.
Digital Image © The Museum of Modern Art / Licensed by
SCALA / Art Resource, NY.
contact with an authentic aliveness, as Francis Carco testified, with life as

a gift, but—t he crucial point—t his contact occurs within a surrounding
politico-social context where being or the inner life of eros is always u nder
threat. Modi’s portraits often depict individuals sitting rigid, almost stone-
faced, expressionless, as if a vital spark has gone missing. The threat of
death and loss does not always announce its presence in art with a medi-
eval hooded skeleton. It can lie concealed in a velvety abyss of blackness,
or linger just beyond the canvas, like Consuela’s cancer or like the hag-
gard, ravaged artist.
A Politics of Eros: War, Dream, and Death

Death was not only hovering nearby in the studio as Modi spat blood,
doubled over coughing, heaved his shoulders, and painted his extraor-
dinary series of nudes. World War I changed Paris forever as the new
German sixty-nine-foot-long “Paris Gun” fired its payload twenty-six miles
high before hitting its random targets and rattling windows almost nightly
in Montparnasse from March to August 1918. An evening curfew turned
the artist quarter into a ghost town. Art dealers fled and galleries closed.43
Modi’s alarming ill-health spurred Zborowski in 1918 to take him (with a
war-weary entourage) to southern France, but even when Modi tempo-
rarily escaped wartime Paris his escape was predicated on illness and war.
The Parisian crowds that in 1914 had shouted deliriously “To Berlin, To
Berlin” soon gave way to amputees limping back from the Western front.
Modi’s friend Apollinaire now wore a huge turban of bandages over his
head wound. Braque, too, suffered a head wound; Salmon and Carco w ere
mobilized; Cocteau joined an ambulance unit; Foujita left for London;
Kisling was stabbed with a bayonet; and Blaise Cendrars lost his right
arm. (Where was Picasso? In Rome, a set designer for Sergei Diaghilev
and the Ballets Russes.) Opposed trenches, so close that enemies shouted
insults back and forth, crisscrossed the waterlogged terrain for 25,000
miles. Shell shock enters the medical lexicon in response to mechanized
killing on an unprecedented scale. Over six days, British forces at the
Somme took 300,000 casualties. It is politics that ultimately establishes
the bounds of personal possibility and entangles individual inner lives in
the filaments of historical desire, as AIDS in Africa has made painfully
evident. The politics of historical desire constitutes the lost backdrop of
Modigliani’s nudes: the so-called Great War lies just outside the canvas.
The wartime nudes in their serene embrace of eros in effect constitute
a rejection of the mechanized state violence: an erotic affirmation made
in the teeth of the war machine. Modi had no use for this war, which his-
torians argue was the utterly improbable result of statesmen, institu-
tions, and nations bungling into horror like sleepwalkers.44 Italy, although
by treaty allied with Germany, entered the war on the side of Britain and
the Allies in 1915. One report says that Modi tried to enlist but was re-
jected for poor health. Another report, more in character, says that after
an hour waiting in line to enlist, he walked off in a rage. His politics, when
not openly anarchist, found no real difference between the two vast armies
of the bourgeoisie. Alert to Modi’s self-contradictions, one observer
called him a “violent pacifist.” “Down with the Allies! Down with the
war!” he was heard shouting.45 This stumblebum catastrophe was not an
occasion for demonstrating love of country—“Cara Italia” were suppos-
edly Modi’s last words—or for mounting an all-out defense of civilized
values. The war, for Modi, was a pitiful deathtrap opposed to everything
154 T he S t o ries
that the vocation of art (as a gift of life) stood for. His nudes stand as a
silent protest: art as the opposite of war.
Nakedness has a modern history of protest that Modi’s nudes might
be thought to anticipate. In certain political contexts, it creates a powerful
emblem of unconcealment that, paradoxically, exposes the concealments
and fig-leaf fictions that nation-states employ in order to organize and jus-
tify mass killing. As protest, however, nakedness serves not only as a re
sistance to concealment, lies, and restrictions but also as a revelation. It
reveals, as if bringing to light a long-lost truth, something fragile, vulner-
able, and infinitely valuable: the undefended, poor, bare human body.
The rock-musical Hair, for example, which debuted in 1967 during the
height of the Vietnam War, concluded with a theatrical metaphor of its
anti-war, peace-and-love protest in a then-shocking scene of brave, vul-
nerable, on-stage mass nakedness. Is it significant that Modi’s nudes, like
Virginia Woolf’s invalids, are women who inhabit a political world run
as anti-erotic or anerotic expressions of male power and reason? Modi’s
series of g reat nudes deploys nakedness, we might say, not only as a gift
of life offered to the sleepwalkers and to the hurt children but also as a
personal affirmation of eros. They affirm the value of life amid a conflict
so horrific and life-denying that nakedness—in reducing human beings
to an image of their primal (almost infantile) unprotected helplessness—
in effect reverses its traditional erotic coding and stages a deliberately
shocking protest against every form of wartime dehumanization.
“For over two years,” writes the World War I historian Modris Eksteins,
“the belligerents on the Western Front hammered at each other in b attles,
if that old word is appropriate for this new warfare, that cost millions of
men their lives but moved the front line at most a mile or so in either di-
rection.”46 Modigliani had thirteen months to live—and a few more nudes
to paint—when the November 1918 armistice exposed the gruesome totals:
over 8 million dead, 21 million gassed, maimed, and shell-shocked.
Apollonaire died of his wounds on Armistice Day. The peace that
followed such pointless carnage did not fill Montparnasse with joy even
though, in the booming postwar art market as the 1920s roared in flush
with cash, many bohemian artists soon enjoyed international reputations
and immense financial success. His formerly destitute Russian-Jewish
friend Soutine, whom Modi passed on to Zborowski, now drove a fancy
car. Montparnasse artists complained that the old spirit was gone, and
Modi’s funeral—an event unparalleled since 2 million p eople had walked
in the procession for Victor Hugo in 1885—had registered like the end of
an era. His death in 1920 at age thirty-six seems the foregone conclusion
to a life in which his fierce commitment to art and to the bohemian exis-
tence that his art-making required ultimately burned out the body. It did
not, however, extinguish the era’s passionate interest in dreams that
Modi’s nudes also, indirectly, affirm.
“What I am searching for,” Modigliani wrote in an entry in his sketch-
book, “is neither the real nor the unreal, / But the Subconscious, the mys-
tery of what is Instinctive in the Race.”47 The nudes, in their opposition
to the surrounding political landscape, take up a position somewhere
between the real and the unreal: a dreamlike space where eros seems to
transcend sexual turmoil, as if sedating turbulent emotions in the quieter
pursuit of mysteries, desire, and the not-k nown. Dreams, of course, were
serious stuff in Modernist Paris, both as an alternative to politics and as
a privileged route to the inner life. Baudelaire stitched theological cliché
to scandalous revisionism in the opening sentence of Les Paradis artifi-
ciels (1860): “Good sense tells us,” he wrote, “that earthly things are rare
and fleeting, and that true reality exists only in dreams.”48 Good sense said
no such t hing: it called dreamers fools. Devoted to Baudelaire and fluent
in French, Modigliani shared the view that dreams and drugs opened up
the route to an artificial paradise. Dreams and opium, since at least
the time of the British Romantic poets, had acquired a contemporary
reputation as a conduit of creative power. Modi used hashish and opium
in pursuit of artistic ends, once claiming that they opened him up to a
new sense of color, and some see a drugged vision behind the swan-
necked portraits. But it is Cocteau, a reformed opium addict, who holds
particular interest here because he argued against the myth that opium
is a source of creative visions. “Opium,” as he corrected the record,
“nourishes a state of half-dream. It puts the emotions to sleep, exalts the
heart and lightens the spirit.”49 Modi’s nudes, as if in a state of half-dream,
might well be in semicontact with the oneiric realm that Baudelaire
would call “true reality.”
Modigliani produced only a single self-portrait. Significantly, it does
not depict a post-Byronic, torment-driven outcast or cursed dark-Romantic
156 T he S t o ries
poète maudit—Maldoror-Modigliani—but rather it represents the artist at

work, holding a palette, a gentle, pensive figure with (like many of the
nudes) closed eyes and a half-dreamlike expression.
Consider the irrepressible Kiki. Alfred Maury had argued in his influ-
ential book on sleep and dreams, Le sommeil et les rêves (1861), that
dreamlike fantasies are marked not by an extravagant departure from
external realities—as the surrealists later believed—but rather by an un-
canny closeness to what is external and real. Kiki, for example, had
a distinctive feature that for modeling assignments she sometimes dis-
guised with dark crayon. This trait, a visibly absent slice of pubic hair,
was sufficiently well-k nown among artists that Foujita once joked about
it, and Man Ray (her lover) later made Kiki’s signature trait inescapably
obvious in a photograph. There is no record that Kiki posed for Modi-
gliani, but Zborowski often climbed the stairs to see her posing nude
in Moïse Kisling’s studio. 50 More than a few Modi nudes represent the
woman’s pubic triangle as strangely offset or askew. This erotic irregu-
larity constructs certain Modi nudes as doubly unideal, declassicized,
asymmetrical, and gently disfigured, in a half-dreamlike conjunction of
the a ctual and the unreal: paradisal but earthbound, too. Modi’s nudes
do not edit out real-life traits, from teeth to rolls of fat or Kiki’s offset
pubic triangle, but instead occupy the mysterious erotic border where
what is neither entirely real nor entirely unreal somehow meet in the cre-
ation of a female image that offers an artistic, critical alternative to the
illness, injury, war, and death that nonetheless indirectly shadow it.
Tuberculosis: Art and the Limits of Medical Logos

Tubercular meningitis was the cause of death listed on Modigliani’s death
certificate at the Hôpital de la Charité. This fact, long known, seems to
his most careful and resourceful recent biographer, Meryle Secrest, the
key to Modigliani’s well-publicized erratic, wild, and drunken self-
display: “the explanation for the puzzle.”51 Self-display, of course, even
offensive self-display, belonged to Modi’s deliberate fashioning of a public
persona. Picasso asked, not so innocently, why when Modi was drunk he
always just happened to be drunk in front of Le Dôme and La Rotonde,
cafés where tourists came to gawk at the bohemian artists. “More or less
deliberately, he created his own ‘legend,’ ” says a contemporary source.52

The display of somewhat obnoxious excess as part of his public character
might well seem puzzling as a deliberate choice, expressing a deep
psychic contradiction. For Secrest, however, the hospital certificate
identifying tuberculosis as the cause of death “changed everything.”
She astutely observes that Modi’s dark alter ego, the antihero Maldoror,
was also tubercular. She also documents the twentieth-century culture
of illness that featured tuberculosis as a feared, contagious killer; pa-
tients were isolated and often stigmatized. She argues that Modigliani
deliberately concealed his diagnosis beneath a veneer of public drunk-
enness. “The received wisdom,” she writes, “was that he drank himself
to death.” Her tuberculosis-inspired revisionist view is that, instead, he
used alcohol and drugs as an anesthetic, the means by which he kept
functioning as an artist, and, most importantly, as a smokescreen to con-
ceal “the great secret”—tuberculosis—that he must hide at all costs.53
Is Secrest correct? I d on’t know. It is a plausible argument. Modigli-
ani’s life was certainly shadowed by serious illness. Devastating childhood
bouts with typhoid and with pleurisy almost killed him, weakening his
lungs so seriously that he abandoned his early work in Paris as a sculptor,
unable to withstand the constant stone dust. His health crashed so dan-
gerously following his first extended stay in Paris that in 1912 he returned
to Italy, where his mother nursed him back to health. On returning to
Paris, he turned from sculpture to painting, living in unheated garrets and
shack-like studios, during one period taking turns with Soutine to sleep
in their only bed while the other painter slept on the floor. A shared bed
constituted almost a luxury. Often, as one observer put it, he led a “vaga-
bond existence,” spending the nights “here, there, and anywhere.”54
Medicine, too, was a luxury that destitute artists could rarely afford,
and everyone, especially in winter, fell ill with something. Ilya Ehrenburg,
when he learned of Modi’s death a year later, offers only a brief and vague
description with no sense of shock. “Modi was always coughing,” he re-
calls, “always felt cold. He contracted a lung disease. His organism was
exhausted.”55 Less than a decade a fter Modi’s death, tuberculosis merited
no more than a parenthesis in Jean Cocteau’s account, which also embeds
cultural myths surrounding tuberculosis: “Refined by illness (he was tu-
bercular), he had the air of a true aristocrat.”56 If tuberculosis could
158 T he S t o ries
isolate, it could also—so the myth held—lend an elevating, ennobling air

of refinement, as the disease wasted away the flesh to expose pure spirit.
One fact seems beyond argument. Even if Modi did not possess certain
knowledge that he had contracted tubercular meningitis, he believed
that the shadow of serious illness hung over him like a death sentence
with the date of execution left open.
Modi’s desire for a life brief but intense expressed the sense that his
fierce devotion to art played out against a rapidly expiring timeline. Self-
destructiveness, even beyond his deliberate public contributions to myths
of the poète maudit, expressed almost a parallel sense that death was al-
ways hovering nearby. Just weeks before his death he stood outside for
two hours, unprotected, in a freezing Paris winter drizzle. His actual
death, officially caused by tubercular meningitis, stands as the final, lurid
episode in a series of life-threatening illnesses and of body-k illing depri-
vations compounded by alcohol, drugs, and poverty as he and Jeanne
somehow endured the glacial winter of early 1920 in a heatless garret. His
imminent death—looming as he “ceaselessly” painted his radiant apricot
nudes—remains significant here as it testifies less to tuberculosis as a
smokescreen than to his lasting affirmation of eros. Medical logos at the
end of World War I had no cure to offer Modi; it had myriads of badly
wounded veterans to care for. Eros, in the face of death, left open to
Modi an alternative that exactly suited the darker range of his personal
artistic temperament: a life brief but intense devoted to paintings that
assent to life.
Medical eros might be described as Modigliani’s life-sustaining alter-
native to a personal history of illness then beyond the reach of medical
logos. In France, it was not until 1921 that the Calmette-Guérin vaccine
was first used on humans, when one in six deaths was still caused by tuber
culosis. If tuberculosis was Modi’s great secret, it was a secret widely
shared among the urban poor, who had nowhere to go except into volun-
tary sanatoria that resembled prisons. Modi instead kept painting,
coughing up blood in a squalid, stone-cold, two-room garret he shared
with Jeanne, and his nudes thus stand in opposition not only to the bour-
geois war machine—grinding up artists and civilians and soldiers in its
maw—but also to his own illness and death. The nudes in their erotic
health and dreamlike serenity contradict or hold at bay the hacking cough
and blood-red sputum. Their robust, fleshly well-being has nothing to do

with the hectic flush typical of tuberculosis—sometimes falsely regarded,
in myths surrounding tuberculosis, as a sign of hypervitality—but arises
rather as a sheer erotic pronouncement: eros less as a god to be wary of
than as, despite the inescapable costs, a life-affirming human gift.
Medical eros might nominate Nude on a Blue Cushion (Figure 5.5) as
the antithesis of Modigliani’s illness-exhausted organism in wart ime
Paris: the image of a woman reclining in a timeless, voluptuous ease, no-
where in particular except beside a strangely discordant blue cushion that
shares top billing.
What to make of the ample curves, audacious sexuality, masklike and
vaguely cubist nose, and open-eyed, come-hither look? Maybe the blue
cushion holds a suggestion. Blue has a long history of association with
the Virgin Mary, and Vassily Kandinsky, writing about the spiritual ele
ment in art, described blue as “the typical heavenly color.”57 The blue
pillow, set against the adjacent dark, red-brown hues, might also recall
the theory of complementary colors (he called them “laws”) developed
by French chemist Michel Eugène Chevreul in 1828, whose work became
“an essential manual for painters.”58 Chevreul showed how primary colors
look brightest in contrast with dissimilar or complementary hues. The
bright color of the w oman and her blue cushion carries its own mute sub-
text. Modi’s quest for the mystery of “what is Instinctive in the Race”
might also start and conclude with an ambiguous spiritual / erotic image
featuring breasts so prominent as to be simult aneously erotic and ma-
ternal: the eternal feminine. No one could mistake Nude on a Blue
Cushion for a classical portrait of Venus or for an image of virginal inno-
cence. Isn’t that the point? Modi’s female nude, in all her ambiguity, is
an homage to the power of art and to the power of women to make a cru-
cial and redeeming affirmation of life and of eros.
Modigliani’s erotic “dreamgirls” (as David Kepesh calls them) observe
a single rule that does not shift: always, full frontal nudity. The elderly
Renoir, in a visit arranged by the indispensable Zborowski, advised Modi
to paint lovingly, as if stroking the backside of his nudes. “But Monsieur,”
replied Modi, annoyed, “I do not like backsides.”59 Among Modi’s two
minor exceptions to the front-facing rule, one is a failed experiment in
Cubist style, where the prominent backside may express Modi’s feelings
160 T he S t o ries
Figure 5.5. Amedeo Modigliani. Nude on a Blue Cushion. 1917.

Chester Dale Collection. National Gallery of Art, Washington, DC.
about Cubism—or about Picasso. The other backside nude, painted with
an unusual bright, hard, smooth surface, exaggerates the buttocks in a
derogatory allusion to Ingres’s La Grande Odalisque (1841)—greatly crit-
icized for the added low-back vertebrae that, according to novelist
George Sand, gave the w oman the look of a bloodsucker. Beyond ex-
pressing his taste in body parts, Modi’s two buttocks-facing nudes may
well signify inversion, eros upended, fantasy wrong-side out, dreams gone
awry, less a rejection of eros than an acknowledgement of its built-in limits
and discontents. Significantly, Modi refuses to pursue eros into macabre
lusts or unspeakable cruelties, but his two rear-facing nudes suggest how
nakedness can turn anti-erotic: eros dreaming its own failures or disen-
chantments. The two backside nudes at least confirm that his typical
front-facing posture is a deliberate choice, with affirmative implications
and erotic connections to the inner life. Even Modi’s self-portraits, as Coc-
teau wrote, “are not the reflection of his external observation, but of his
internal vision.”60
“If anyone wants to understand the drama of Modigliani,” Ilya Ehren-
burg wrote from his post–World War II stance as among the most fa-
mous and prolific authors of the Soviet Union, “let him remember, not
hashish, but the gas chamber; let him think of Europe lost and frozen, of
the devious paths of the c entury, of the fate of any of Modigliani’s models
around whom the iron ring was already closing.”61 Medical eros may seem
to some a powerless and irrelevant alternative to medical logos, but the
affirmations of eros carry significant weight. The nakedness of Modigli-
ani’s nudes casts a revealing light on the antiseptic removal of clothing
that so often signals the start of a medical examination. “Eroticism,” as
Bataille had asserted, “is assenting to life up to the point of death.” The
great nudes, whose power reaches far beyond the milieu of Modigliani’s
life span, suggest that patients, doctors, and everyone touched at some
point by serious illness might find in eros and its affirmations—right up
to the point of death—both strong medicine and quiet refuge, even a
source of resistance, as they confront personal pain, social suffering, and
the numberless modes of contemporary violence, soft or hard, from toxic
dumps to genocide and so-called holy wars. Medical logos has enough
biological calamity to deal with that it does not need to reject the assis-
tance—in related dramas of the inner life—available for the asking from
medical eros.
The series of g reat nudes may claim their least obvious kinship, finally,
with the “great odes” of Keats, which similarly emerge from a remarkable
creative burst while the poet was d ying of tuberculosis. Minus the “great
odes” Keats is a promising minor poet, and Romanticism minus Keats
has lost its heart. The “great odes” redefine Keats and reshape Romantic
poetry. The nudes of Modigliani, created in the era of the G reat War,
unfold in a bittersweet Keatsian drama of love and death that both rede-
fines Modigliani’s lifework and, in so d oing, reshapes an understanding
of Modernism. Mass death on an unprecedented scale and his own lin-
gering fatal illness provide a context within which the g reat nudes offer
a testament to the power of eros, an affirmation of life, accessible to
anyone, in pain, out of pain, or living in the lucky interval before pain
strikes, as it almost surely w ill, once again.
Chapter Six
The Infinite Faces of Pain:

Eros and Ethics
I went to a concert upstairs in Town Hall. The composer whose works
were being performed had provided program notes. One of t hese notes
was to the effect that there is too much pain in the world. After the con-
cert I was walking along with the composer and he was telling me
how the performances had not been quite up to snuff. So I said, “Well,
I enjoyed the music, but I didn’t agree with that program note about
there being too much pain in the world.” He said, “What? Don’t you
think there’s enough?” I said, “I think there’s just the right amount.”
John Cage, “Grace and Clarity” (1944)
J ust the right amount of pain? In his curious, unsettling remark,

John Cage perhaps intends his koan-like paradox to reorient a mu-
sical companion whom he regards as overinvested in rational judgments
and in computational thought. The sum total of world pain is unknow-
able—who can say what is too much or just the right amount?—and Cage,
steeped in Zen Buddhist teachings, no doubt understood pain as
embedded in a larger account of suffering, or dukkha, radically at odds
with concepts of a computational, mind-based, reason-directed ego.1
162
T he I nfinite F aces o f Pain : E r o s and E thics 163
Cage encountered enough destitution as he scraped by as an impover-

ished composer in postwar New York City to distance his paradox from
flippant denials of real-world misery. The first Noble Truth (and a foun-
dation of Buddhist thought) is the maxim that suffering exists. Suffering
and pain are not identical, of course; a stubbed toe is painful, momen-
tarily, but not usually a source of suffering. Pain, no doubt, is often inter-
twined with suffering, even a direct cause of suffering, but for John Cage
an affirmation of life does not depend upon the global reduction of pain.
“Our intention is to affirm this life,” he wrote in 1944, “not to bring
order out of chaos nor to suggest improvements in creation, but simply
to wake up to the very life w e’re living, which is so excellent once one
gets one’s mind and one’s desires out of its way and lets it act of its own
accord.”2 Waking up is a traditional philosophical image for sudden
inner illumination, a mind-altering transformation, and for Cage awak-
ening implies both fully experiencing the world as it is and fully letting
go of ego-based, computational rationalities that presume to measure,
say, which of two musical performances is better—or just how much
world pain is too much pain.
“Pain is a universal experience,” so begins the blue-ribbon Institute
of Medicine report Relieving Pain in America (2011), before, in a reflex
basic to medical logos, instantly shifting to computational thought:
“Common chronic pain conditions affect at least 116 million U.S. adults
at a cost of $560–635 billion annually in direct medical treatment costs
and lost productivity.”3 The report is correct, of course, and the compu-
tational thinking basic to medical logos has a valid point to make. Mean-
while, however, no new drug, no social program, nothing, has managed
to sweep back the rising tide of new pain that daily washes up on the
shores of biomedicine. A recent survey from the National Institutes of
Health (not prepared to let go of computational thought) estimates that
23.4 million American adults—a huge 10.3 percent of the current
population—experience “a lot” of pain.4 What, in the face of such
mounting, unrelieved, bottomless distress, does the Institute of Medi-
cine’s blue-ribbon panel recommend? The understanding and treat-
ment of pain in America, according to these very distinguished special-
ists, requires nothing short of a “cultural transformation.”5 A cultural
164 T he S t o ries
transformation in the understanding and treatment of pain may not re-

quire sudden illumination, or waking up the very life we’re leading, but it
certainly could use a l ittle help from medical eros.
The Institute of Medicine report—recognizing the limits of medical
logos—challenges doctors and therapists with a radical new and transfor-
mative agenda: to “promote and enable self-management of pain.” Self-
management, as a deliberate practice, seeks to enlist patients and nonpa-
tients in moving beyond a molecular gaze trained on genes, nerves, tissue
damage, and neurotransmitters. It needs patients and nonpatients to un-
derstand and to personalize the current recognition within medicine that
sociocultural contexts significantly influence chronic pain.6 Jobs, families,
and substance abuse are the sociocultural trio that most often provides the
focus for current clinical interventions, but pain engages far wider per-
sonal and cultural aspects of human lives, from spirituality and social
media to poverty, exercise, and nutrition. Cultural transformations cannot
occur without a sufficient buildup of personal transformations. Medical
eros has a key role to play in extending the sociocultural discourse on pain
and in encouraging the personal inflections of desire that actively promote
and enable strategies of self-management.
Desire, as a personal, emotional force, is something that John Cage
mostly wanted to get out of the way of, or to reduce to the status of an
observable phenomenon, like a preference for vanilla ice cream. A prac-
ticing Buddhist may perhaps succeed in the eradication of craving. Many
patients, however, weary of shuttling among specialists, are ready for a
program of self-management that respects their desire to get off the bio-
medical drug-taking treadmill. They are ready to participate actively in
reducing their personal burdens of pain. Such self-management, however,
will fail without an approach that mobilizes desire. Medical eros can con-
tribute toward the necessary cultural transformation, then, not only by
circulating new success stories of self-management, helpful in engaging
individual desire for change, but also by engaging patients and nonpa-
tients in understanding the role that narrative can play in the indi-
vidual experience of pain. In part icu lar, as a contribution t oward self-
management, I want to ask an eros-related question (with far-reaching
implications) that respects the harsh reality of personal suffering. Might
the self-management of pain—beyond biomedical reason, analysis, and
computation—depend far less on finding the right medication than on under

standing and responding to pain (both our own pain and the pain of
others) much as we might understand and respond to a story?
The Inexpressibility Topos: Pain and Language

The inexpressibility topos refers to the claim “that a particular experience,
person, or object, is beyond verbal description.”7 This ancient claim is a
standard feature in eighteenth-century aesthetic theories of “the sublime,”
and readers of Elaine Scarry’s important book The Body in Pain (1985)
often conclude that pain too is inexpressible. It is a claim open to ques-
tion. Scarry begins The Body in Pain with a section titled “The Inexpres
sibility of Physical Pain,” followed immediately by a section titled “The
Political Consequences of Pain’s Inexpressibility.” Inexpressibility thus
provides the origin for a fascinating and original discussion of pain-related
topics, ranging from torture to patent law.
It is important to notice, however, both Scarry’s modifying comments
and her shifts of emphasis. Her “overt subject,” Scarry writes, in the
opening section, is “the difficulty of expressing physical pain.”8 Difficulty
of expression, of course, is not identical with absolute inexpressibility, and
Scarry herself notes how this difficulty may be overcome, imperfectly, by
verbal means.9 Resistance, like difficulty, is another modifying term used
to soften the claims of absolute inexpressibility. Scarry is certainly right
that pain resists language. She goes further, however, in citing the pas-
sage from On Being Ill in which Virginia Woolf imagines a sufferer trying
to describe a pain to a doctor (“language at once runs dry”).10 This in-
stantaneous r unning-dry of language is “more radically true,” Scarry
writes, of the severe and prolonged pain that may accompany cancer,
burns, stroke, or phantom limb. “Physical pain,” she concludes in a very
broad generalization, “does not simply resist language but actively de-
stroys it.”
T here is good reason to emphasize that pain resists expression, as
Scarry does, but the absolute destruction of language by pain and the ab-
solute inexpressibility of pain are not exactly Woolf’s point. Woolf is not
offering a theory of pain but rather employing the illustrative example of
a sufferer with “a pain in his head” in order to support her main argument
166 T he S t o ries
that illness has been underdescribed in literature. Her description of

language running “dry,” further, does not imply that pain is absolutely
inexpressible. Rather, Woolf wants to replace the neglect of illness in lit
erature—presumably, the literary neglect of pain too—with a whole new
verbal discourse: a language “more primitive, more sensual, more ob-
scene.” If language can run dry, writers and cultures have the power to
renew language: creek beds may refill. Pain, especially chronic pain, what
ever its fate in literature, is not doomed or fated to absolute inexpress-
ibility. Language and narrative hold a crucial place in any f uture cultural
transformations focused on self-management.
Intense pain certainly resists language and introduces major difficul-
ties of expression. At its absolute upper limit, it can blot out conscious-
ness and defeat any utterance beyond a scream. David Biro, shortly after
finishing his medical residency, experienced pain so severe during a bone-
marrow transplant that, as he writes, “it literally strangled my vocal cords.”
“All I wanted to do,” he adds, “was to crawl inside a hole and shut my eyes
until it, or I, just went away.”11 Suicide is an extreme but, sadly, not un-
common response to unremitting intense pain. Biro, returning to clinical
work as a physician, looked for ways to break into the silences of pain, to
insert the wedge of language and of metaphor into moments when pain has
released its absolute stranglehold. In The Language of Pain (2010) Biro
both acknowledges his debt to Scarry’s work and undertakes to describe
various means of teasing pain, at least in its less intense versions, into ex-
pression. When pain takes on its more familiar forms of, say, carpal tunnel
syndrome or fibromyalgia, even visual analogue scales (rating degrees of
intensity) give a modest voice to pain; such numerical data prove impor
tant and telling enough to be required now in hospital charts. Pain also, in
less statistical formulations, obliquely infiltrates multiple modes of verbal
and visual expression, from infant cries (which a parent quickly learns to
read in their varying intonations) to sexual whispers, oral speech, writing,
cinema, and the visual arts. In its porous social existence, pain has regu-
larly absorbed a variety of religious and cultural meanings. Our personal
beliefs about pain can directly affect the pain we feel, so there is urgent
value in bringing such beliefs into expression. Pain itself—if we regard it as
a noun in search of a content—may remain as mysterious as love: irreduc-
ible to neurobiological correlates. Eros, in many cases, is entangled with

pain: both partake of not-knowing. As a state of being that calls for self-
management, however, pain is also subject to continuous clarifications
that owe much to the research methods of medical logos. Most important
among t hese clarifying insights is the crucial distinction—clinical rather
than philosophical—between acute pain and chronic pain.
Medical logos, in its pragmatic distinction between acute pain and
chronic pain, does more than add a new system of classification. Biomed-
icine has become adept at controlling acute pain, as in postoperative re-
covery. Major hospitals have acute-pain teams trained to treat especially
intense short-term episodes that may occur in cancer, for example, or in
stroke. The very rare cases of excruciating, intractable, untreatable acute
pain may require drastic means to short-circuit consciousness, but such
instances offer a poor model for what happens in chronic pain. Chronic
pain—with its immense costs to individuals and to the national gross do-
mestic product—is often defined as pain lasting for more than six months,
with or without an observable lesion. Although frequently less intense than
acute pain, chronic pain produces measurable changes in the brain, which
may make the pain self-perpetuating, more intense, and almost untreatable.
Inexpressibility is not the main dilemma that faces many chronic-pain
patients. Instead, the dilemma lies in finding people, inside or outside
medicine, who w ill truly listen to what they are saying—not tune them
out—and lend assistance. D ying patients, we might assume, w ill receive
the necessary attention to relieve pain. A prominent study, however,
showed that 50 percent of dying hospitalized patients spent at least half
their time in moderate to severe pain.12 A follow-up study, after six months
spent emphasizing practical remedies, found no improvement at all.
Medical eros would contend that the goal in self-management is pre-
cisely to talk more effectively and openly about pain—to improve the dis-
course and to oppose institutional or personal impediments—in ways
that ultimately benefit patients. In this aim, medical logos and medical
eros not only share common cause but have incentive and opportunity to
collaborate.
Pain, whether chronic or acute, is often (but not always) located in a
specific area of the body, but, w hether local or unlocalizable, it is always
168 T he S t o ries
an event of consciousness. “The brain,” as neurosurgeon and pain

specialist John D. Loeser writes, “is the organ responsible for all pain.”
“All sensory phenomena,” he adds, “including nociception, can be altered
by conscious and unconscious mental activity.”13 Loeser is past president
of both the American Pain Society and the International Association for
the Study of Pain; he is well-k nown in the wide world of medical logos;
and his statement reflects years of firsthand work with pain patients. No-
ciception is the technical term for the processes of neurotransmission that
occur, say, if you hit your thumb with a hammer; but hammer-blows bear
little relation to chronic pain, and Loeser insists that the activity of
sensory neurons does not constitute pain. Human pain is an event of
consciousness, a subjective product of the brain, where intricate neural
networks link sensation with perception, cognition, memory, and emo-
tion. It orchestrates such an instantaneous interrelation between body
and mind that the common terms physical pain and mental pain mis-
represent the central role of consciousness. The terms, an outmoded
legacy of the philosophical split between material bodies and immate-
rial minds, ignore the biological mind / body interactions that make
pain, like eros, both always mental and always physical. Consciousness
or inner life is where chronic pain, with or without an observable lesion,
plays out its baleful and often self-defeating narratives.
The International Association for the Study of Pain—the most presti-
gious worldwide organization of scientists, physicians, and therapists
dealing with pain—opens the door to a narrative approach when it in-
sists, in its official Classification of Chronic Pain, that pain is “always
subjective” and “always a psychological state.”14 Pain, especially chronic
pain, resists the reduction to a direct one-to-one relationship with tissue
damage. Lesions are often undetectable, so the primary object of study if
you are studying h uman pain (as distinct from counting laboratory tail-
flicks) is not an object at all but rather a subjective state. Even tissue damage
as measura ble as a prolapsed lumbar disk does not necessarily result in
pain. The self-management of pain—as a mind / body state centered in
consciousness—thus would seem to require a new model that integrates a
microlevel molecular gaze with macrolevel personal, psychological, so-
ciocultural accounts that inevitably affect human consciousness.
An Integrative (“Zoom”) Model of Pain

An Integrative Model of Pain—or, in reference to the zoom-in / zoom-out
function on computer screens, a Zoom Model—seeks to acknowledge the
shifting interplay among the multiple levels of mind / body relations that
underlie and participate in the human experience of pain: from micro-
level cellular processes to macrolevel individual beliefs, social practices,
and even oral or s ilent narrative frames and reframing. One version might
look something like Figure 6.1.
Figure 6.1. An Integrative (“Zoom”) Model of Pain. David B. Morris.

170 T he S t o ries
T here is no pain to consider when consciousness is shut down. A

consciousness-centered integrative Zoom Model, however, allows us to
understand how different levels of explanation might best match up with
biomedical treatments or with patient self-management. Some types of
chronic pain, for example, respond less well to drugs than to psychosocial
therapies and to treatments based on a cognitive-behavioral approach.
Chronic pain with a single identifiable lesion, on the other hand, might
call for an aggressive approach using opiates or surgical intervention.
Some pain seems produced almost wholly by the brain. In one study, re-
searchers attached volunteers to an electrical stimulator and told them
that its current might possibly produce a headache. Volunteers w ere not
told that the stimulator was set to produce nothing beyond a low hum-
ming sound. The result? Half the volunteers reported pain.15
A model of pain consistent with interacting microlevels and macrolevels
finds important support in the rich biomedical literature on pain
beliefs. Researchers show that specific beliefs affect the pain we experi-
ence, especially beliefs about cause, control, duration, outcome, and
blame. Such beliefs affect not only chronic pain but also acute pain and
postoperative pain. Beliefs about pain, moreover, often maintain a direct
link with emotions: anger toward a negligent employer, for example, or
fear of catastrophe, or hope for compensation, or love for a spouse. Spe-
cific pain beliefs even predict pain intensity. As this research shows, pa-
tients function better who believe that they have some control over their
pain, who believe that medical services are of value, who believe that
family members care for them, and who believe that pain has not left
them severely disabled. In one study, specific pain beliefs correlated di-
rectly with treatment outcomes.16 If you believe that your pain is disabling
or that you have no means of control, for example, this internal narrative
of belief already predicts an unfortunate outcome.
Self-management of pain, consistent with a new integrative Zoom
Model, cannot ignore the beliefs that we almost unknowingly embed in
speech and narrative. In the aftermath of an automobile accident, Lous
Heshusius, a Canadian academic, suffered excruciating chronic pain, and
she offers a first-person account in her memoir Inside Chronic Pain
(2009).17 She tallies up 27,000 hours of chronic pain over an eleven-year
period (ICP 7). She also lists some two hundred and forty appointments
with doctors and specialists, nearly five hundred appointments with

alternative professionals, a dozen appointments for tests and assessments,
and countless hours spent keeping track of prescriptions, bills, and in-
surance. Finding a photograph taken before the accident, she encounters
her own image as almost unrecognizable: “I had become someone else,”
she writes. “ ‘A crumbled woman,’ is how one of my daughters described
me. A strange shadow of my former self” (ICP 26). Crumbled is also the
word that Heshusius uses to describe the twisted steel beams of her
accident-demolished car: she, too, in her own mind, is wreckage. H uman
damage, unlike bent metal, leads to what she calls a “tormenting journey”
(ICP xxv). She singles out several doctors for warm praise, but mostly she
records her general and tormented dismay at the medical establishment.
Her language proves as instructive as her indictment. “In this book I show
as clearly as I can,” she writes, “what happens when a life that is going
along just fine takes that sudden turn into the hell that is chronic pain”
(ICP xxiv).
Heshusius’s metaphoric description (the hell that is chronic pain) seems
more than a casual figure of speech, since it reappears in several versions
during her account. She imagines pain as “a devil with raked horns”
(ICP 33), and she regards her book as a form of revenge in which “I rise to
Pain’s devilish power” (ICP 13). Her words powerfully illustrate how various
beliefs, metaphors, and miniature fragmentary narratives so often accom-
pany or infiltrate illness. They do not allow me to make clinical judgments
about her pain, and I refuse to do so, but her words can prompt two gen-
eral thoughts relevant to the self-management of pain. First, some pain
beliefs cause direct harm, and among the most harmful are pain beliefs
that contribute to the m ental-emotional state known as catastrophizing:
“characterizations of pain as awful, horrible and unbearable.”18 Pain some-
times surely is god-awful, but effective self-management depends on
knowing that we can also make our pain worse if we catastrophize. Second,
the process of “story-editing” that psychologist Timothy D. Wilson
recommends—a conscious reframing of the harmful stories we may tell
ourselves—can have significant beneficial outcomes.19 The harmful sto-
ries may proceed at a nonconscious level expressed only in metaphors
and images—but, once identified, harmful stories can be reframed,
Wilson shows, in ways that would permit helpful self-management. Two
172 T he S t o ries
distinguished pain specialists recently discussed disappointing clinical

results that seem directly related to the microlevel, cellular understanding
of pain pursued in medical school curricula. They ask if it is time to “flip”
the pain curriculum.20 Patients w ill benefit, they argue, when medical
students focus less on the microlevel cellular neurobiology of pain and
more on its macrolevel and sociocultural dimensions. Patients, too, in the
interests of self-management, may need to flip their own implicit or inter-
nalized biomedical pain curriculum.
Pain, like cancer, is plural, and so are the narratives of pain that self-
managers need to take into account. There are many types of cancer and
many types of pain, from the stabbing pain of postherpetic neuralgia, say,
or the queasy pain of migraine, to the dull ache of deep muscle pain or
the burning pain of a skin abrasion. Macrolevel environmental influences,
however, also weave around and through whatever cellular processes un-
derlie consciousness. A young mother in a happy, stable marriage may
experience the pain of childbirth differently from an isolated, impover-
ished, stigmatized rape victim. Anger and sadness, in laboratory experi-
ments, correlate with increased pain intensity, and the social emotions of
guilt and blame play a role in the undertreated pain of HIV / AIDS pa-
tients. Persistent undertreatment in medical settings is a cultural or envi-
ronmental fact that directly influences pain. Ethnicity, race, and gender
also influence pain in a complex biological and cultural mix. Chronic low
back pain patients in Japan, for example, proved less impaired in psycho-
logical, social, vocational, and avocational function than similar patients
in America.21 Pain, in short, is irreversibly porous, open to modifying in-
fluences from cultures and beliefs. The good news is that consciousness,
as rooted in the hubbub of human social and psychic life, holds the power
to modify and to ameliorate pain through its influence over thoughts and
feelings, unlike the crude neural mechanism that Descartes compared to
ringing a bell by pulling on the attached rope, as if pain w ere no more
than a mindless alarm signifying tissue damage. The placebo effect is
well-documented, as when a toothache disappears as soon as we catch
sight of the dentist, but the nocebo effect (as in voodoo death), too, dem-
onstrates the power of the mind in combination with explicit or implicit
cultural narratives to add or subtract pain.
“Find t hings to give you pleasure in life,” advises Sean Mackey, chief
of the division of pain management at Stanford University, “whether it be
through the one you love or g oing and listening to great music or reading
a good book.” Such activities, he suggests, will activate the brain’s reward
system and reduce pain. It is Mackey’s laboratory that published the
finding that simply looking at the picture of a romantic partner reduced
moderate pain by 40 percent.22 Pleasure is among the home-brewed anal-
gesics available with the cultural transformations implicit in a new Zoom
Model. Medical eros would endorse Mackey’s view that narrative
pleasures—from books to film—constitute a potent resource in the self-
management of pain.
Replacing Yourself: Narrative, Pleasure, and Ethics

uman brains, w
H hether we like it or not, manufacture narratives. Our an-
cestors told stories about the gods, including Eros, and we fill seats at the
local cinema courtesy of the same inborn narrative drive. Jill Bolte Taylor,
a brain neuro-anatomist, suffered a massive stroke that impaired the
language-processing areas in the left hemisphere of her brain. As cogni-
tive function gradually returned, she observed with a scientist’s objec-
tivity (but also with the bemusement of a recovering patient) that her left
brain, as if operating under its own power and command, “enthusiasti-
cally manufactured stories that it promoted as the truth.”23 Taylor came
to describe her left brain, almost fondly, as “my storyteller,” and she rec-
ognized its power to lead her astray. “I learned that I need to be very wary
of my storyteller’s potential for stirring up drama and trauma.” Confabu-
lation is the medical term for pathological versions of this unwilled
narrative stream of brain fiction.24 Paralyzed patients after a stroke, for
example, sometimes deny their paralysis and confabulate bogus stories
to account for their limitations. (Doctor: “Why can’t you lift your arm?”
Patient: “I’ve got arthritis in my shoulder.”) Such patients are not lying
or engaging in deceit. Stories, when we need an explanation, are simply
what our brains can’t help producing. We tell stories, even to ourselves,
much as birds build nests. Why? As Joan Didion puts it, we tell ourselves
stories in order to live. A life devoid of enjoyments would strike many
174 T he S t o ries
eople as not worth living. Perhaps we are also drawn to stories—or sto-
p
ries draw us—through the same life-enhancing force that inclines us to
hear a joke, to read a book, or to see a film: the expectation of pleasure.
Pleasure suffers from a mild case of disrespect t oday, as if it is insuffi-
ciently serious or has been trivialized by jet-set plutocrats, but medical
eros rejects the view that pleasure is inherently frivolous. Ancient philos
ophers agreed. Pleasure in the classical world occupied a central position
in discussions of human moral life. Plato devoted an entire dialogue (Phae
drus) to pleasure, and, if little else, this ancient respect might incline us
to question the modern cultural contradictions that both glorify mind-
less pleasure (girls gone wild) and suggest its triviality in comparison to
(the correct answer) world peace. Classical pleasure, as a moral state, has
somehow dwindled into amoral fun—if it feels good, do it—and we are
forever looking for something better. The cultural transformations needed
in the understanding and treatment of pain include a sense that pain raises
important ethical questions. An ethics of pain, in turn, depends on rec-
ognizing its almost paradoxical relation with narrative pleasure.
Narrative, in order to claim standing within the citadel of medical log
os, has to make a serious claim to knowledge. Rita Charon, in her bold
JAMA article “Narrative Medicine,” argues that competence in under-
standing narrative produces a distinctive form of knowledge: narrative
knowledge. JAMA, of course, issues from the headquarters of biomedicine,
and thus t here is strategic value in a focus on narrative knowledge, as
Charon expertly explains how such narrative knowledge serves as a
complement to logico-scientific understanding. Narrative pleasure, how-
ever, from the perspective of medical logos, is almost as objectionable as
not-knowing. Pleasure does hold one minor and almost negligible niche
within biomedicine. Laughter has been shown to stimulate endogenous
opiates and to relieve pain, so comic narratives presumably have thera-
peutic value if they excite laughter (rather than smiles). That’s about all.
Medical logos, if accepting of narrative at all, prefers to focus on the
knowledge that narrative might yield rather than on its possibilities for
pleasure.
Medical eros has no headquarters, but it has allies who recognize the
importance of narrative pleasure. In The Pleasure of the Text (1973), the-
orist Roland Barthes characterizes the two main reader responses to nar-
rative as plaisir and jouissance. Pleasure belongs to the everyday novels

and entertainments that don’t strain our capacities. Jouissance, or the
pleasure that Barthes associates with complex, code-breaking texts, covers
in French both bliss in general and, in particular, sexual orgasm.25 Sto-
ries in effect constitute little engines of pleasure. They draw us less from
a sense of duty than from off-duty desires, up to and including sexual de-
sire. Virginia Woolf valued poetry because it gives invalids access to the
sensuousness of sound, m usic, and nonsense, where pleasure is enough,
and such pleasures certainly extend to escapist narratives such as her tale
of Lady Waterford. Medical eros, in asserting the validity of narrative plea
sure, would defend its role as complement to analytical knowledge and
rational competence. Eros, in addition, offers a somewhat scandalous
opportunity to circumvent the knowledge-seeking mind-set keyed to
thinking about stories, as if stories could be reduced without loss to ob-
jects of study. Instead, it insinuates both the primacy of pleasure and the
benefits that flow, if indirectly, from an emotion-rich, subjective
thinking with stories.
Thinking with stories is a concept that I borrow from the sociologist,
cancer survivor, and pioneer scholar of illness narratives Arthur W. Frank,
and it refers to a process very different from the operations of analytical
reason common to medical logos.26 Frank focuses far less on the herme-
neutics of narrative (what stories mean) than on its pragmatics (what
stories do). The pragmatics of thinking with stories always involves an
element of reason—t hought can’t be wholly irrational or it ceases to be
thought—but it also invokes a pleasura ble collaboration with feeling.
Thinking about stories turns narrative into an object of thought. Thinking
with stories is a process in which we do not so much work on narrative,
analyzing it objectively, as take a radical step back and (giving free play
to pleasure) allow narrative to work on us.
“That story is working on you now,” a young male Apache tells anthro-
pologist Keith Basso about a particular Native American narrative.
“That story is working on you now,” he repeats. “You keep thinking about
it. That story is changing you now, making you want to live right. That
story is making you want to replace yourself.”27 Basso’s purpose is to show
how the western Apache people still live in a local landscape richly en-
dowed with narrative meaning. Even a passing allusion to identifiable
176 T he S t o ries
places, such as Line-of-W hite-Rocks or Red-R idge-with-A lder-Trees, in-

stantly evokes for tribal listeners traditional tales of what happened
there. In a culture that scrupulously avoids direct rebuke, such allusions
evoke the moral stories associated with a particular place and thus pro-
vide unobtrusive and indirect but steady moral guidance. Such stories al-
most literally get under your skin. Basso shows, in effect, how thinking
with stories enlists narrative pleasure in the stealth service of ethics.
Medical eros might invoke the stunning concept of stories that make
you want to replace yourself in order to underwrite a new affective bio-
ethics of narrative; this bioethics, as we w ill see, has direct relevance to
the understanding and management of pain. Such an affective bioethics
provides a complement and (at times) a rival to the traditional principle-
driven bioethics endorsed by medical logos. From this new ethical and
affective perspective, stories are not entertainments or trivial fictions but
experiences that incur an obligation on the listener.28 They exert a “call.”
The moral call of stories—as psychologist Robert Coles describes this
narrative power—is not restricted to indigenous peoples in remote loca-
tions.29 Coles tells how stories exercise a moral force among his patients
and students in Boston. A respectable minority tradition in philosophy,
from Aristotle to Iris Murdoch, has staked a claim for stories as engaging
what the philosopher Mark Johnson calls the moral imagination. “No
moral theory can be adequate,” he writes, “if it does not take into account
the narrative character of our experience.”30
Today, across disciplines, a substantial scholarly literature is beginning
to focus on so-called narrative ethics.31 Narrative now holds an established
place within the indispensable medical subfield of bioethics, although
bioethics still prefers to keep narrative pleasure at arm’s length. Good
precedent thus exists for rejecting a dismissive view of stories as merely
disposable products of the entertainment industry or as artifacts so inher-
ently indeterminate as to produce endless wrangling over interpretations.
Medical eros, by enlisting narrative pleasure in service of bioethics, can
offer practical help both in the patient’s self-management of pain and in
the self-understanding of physicians charged with managing the pain of
others. Patients and doctors will both benefit from understanding how
the stories we tell about pain and the painful narrative situations we en-
counter regularly include an emotional resonance that, even if appar-
ently far removed from pleasure, can work on us more effectively than
medicolegal arguments and (if we let it) show us what to do.
Pain and Narrative Ethics: Three Probes

Medical eros, while it has a special affinity for narrative and pleasure,
shares less evident common ground with pain. “Pain,” wrote Emily Dick-
inson, “has an Element of Blank.”32 The blankness of pain—only one
“Element,” but crucial and intrinsic—enfolds a not-knowing fundamental
to eros. Pain for Dickinson, which she personifies as if it were a super-
human being endowed with blankness, does not know its own origin and
when (or if) it w ill end. This inherent not-k nowing means that pain al-
ways contains an excess or surplus that remains forever inaccessible to
reason and to analysis. The blankness of pain, on the other hand, in its
overlap with the native terrain of medical eros, offers an opportunity to
explore how thinking with stories (instead of thinking about stories) helps
illuminate issues in ethics where eros comes into play. Three probes are
enough to begin an exploration of the relationship among pain, ethics,
and eros.
Probe one concerns a medical school symposium on the topic of pain
and ethics. It took place in the early 1990s, but the impact on me was
unforgettable, and the key issues have not appreciably changed. The
typical procession of speakers concluded with the chair of anesthesi-
ology. He spoke in convincing detail about the burdens on his budget
and staff, citing recent university cutbacks in funding and new state direc-
tives about mandatory care for the poor. His measured tones and what
struck me as his visi ble personal integrity left me unprepared for the
sweeping ethical conclusion. When it comes to the treatment of pain in
his department, he stated as a blunt matter of fact, “it is no longer pos
sible to do the right thing.”
This chilling conclusion, which I suspect could be repeated today (less
openly) in many medical specialties, offers a narrative glimpse into the
ethics of postmodern pain. The dilemma is not postmodern in its embrace
of doubt or contingency—the speaker assumes, with refreshing certainty,
that he knows what constitutes the right thing to do. He also knows, with
equal certainty, that ethical action—doing the right t hing—is now no
178 T he S t o ries
longer possible. Reason, principle, and moral agency all seem at an un-
decidable impasse: the postmodern showdown where action collapses in
endless talk. The impersonal construction “it is no longer possible” sug-
gests that this new dilemma does not concern the moral failure of spe-
cific individuals—anesthesiologists, administrators, legislators—but
rather it concerns the insignificance of individual action. The moral failure
apparently lies with systems and institutions that make personal choices
irrelevant. An ethics responsive to such distinctive postmodern dilemmas
may require tools as unfamiliar to medical logos as inquiries into narra-
tive point of view. It may require thinking in which moral action has less
to do with reason or fixed principles than with the stories we tell and the
emotions we feel—or deny.
Probe two concerns a journalistic story reported in the New York
Times in 1999 about a California Medicaid patient, Mrs. Ozzie Chavez.33
The ethical issues remain timely, although the relevant background re-
quires a brief comment on medical insurance and on narrative structure.
Narrative often embeds basic and familiar structural patterns: boy meets
girl, boy loses girl, boy gets girl. (The names and details are fungible.)
Medical insurance, which is now often systematically intertwined with
pain, embeds its own mininarrative structure: you are insured, you get
hurt, you get compensation. This mininarrative structure is not inno-
cent. It is not free from social implications, but rather entails built-in social
and personal costs. Compensation may sustain and possibly even create
pain. Developed nations, for example, face rapidly mounting claims for
pain associated with automobile accidents, but in Lithuania (where
drivers had no recourse to medical insurance) studies showed no signifi-
cant difference between accident victims and a control group in reports
of headache and neck pain.34 The implication? The head and neck pain
of chronic whiplash syndrome is, in developed nations, in part an arti-
fact of compensation narratives. It is not necessary to assume fraud. It
appears that disability payments for chronic pain actively impede medical
treatment if compensation serves as an incentive for patients to retain
pain.35 The issues at stake h ere, as regards pain, are not entirely economic
or medical but ethical.
Narrative bioethics may demonstrate its value precisely in illuminating
the conflicts native to every local world where moral action is no longer
strictly an individual Hercules-t ype choice between virtue or vice but

rather concerns shifting points of contact where powerf ul social or insti-
tutional narratives intersect with personal narrative identities and indi-
vidual life stories. A prestigious task force studied rising claims for
workers’ compensation payments associated with chronic pain and found
that, in many cases, the chronic pain could not be correlated with an or-
ganic lesion. The task force concluded that chronic pain in the absence of
an organic lesion should not qualify as a medical disability—eligible for
compensation—but should be reclassified as “activity intolerance.”36 Ac-
tivity intolerance, hardly an official biomedical diagnosis, reframes the
dominant sociomedical narrative (in which chronic pain merits disability
insurance) as a tone-deaf counternarrative of personal inadequacy. The
personal pain narratives that we live out today increasingly come into con-
flict with powerful if invisible sociomedical narratives that, in some
cases, may establish trajectories for chronic pain patients that are as dam-
aging on ethical grounds as nineteenth-century narratives of hysteria.
Mrs. Ozzie Chavez—back to probe two, where the emotions are less
veiled—met the income threshold at which the California Medicaid pro-
gram covered obstetrical expenses, and the birth of her child thus
belonged within an established social compensation narrative. The di-
lemma: the anesthesiologist refused Mrs. Chavez a standard form of
anesthesia in labor because she did not pay an additional (illegal) fee de-
manded in advance. “I’m not a wimp when it comes to pain,” Mrs. Chavez
told the Times reporter. “But it was a very painful delivery.” Demands for
additional payment, as it happened, were not rare because of California’s
well-k nown substandard Medicaid reimbursement policies, so this en-
counter is more than a typical “horror story” (another narrative sub-
genre) about uncaring doctors. Mrs. Chavez had her own narrative point
of view, however, and it is chilling. The anesthesiologist w ouldn’t even
come into the room until she got her money,” Mrs. Chavez explained.
“I was lying t here having contractions, and they wouldn’t give me an
epidural. I felt like an animal.”
Narrative bioethics will not get to the bottom of this event and expose
the bedrock truth about what really happened—who was right, and who
was wrong. A narrative approach, however, helps to illuminate the con-
flicting forces that define her experience. Bioethicist Tod Chambers’s
180 T he S t o ries
reminder that t here are no artless narrations certainly helps expose the
rhetorical strategies implicit in the unofficial comments and official
stories issued in response to Mrs. Chavez’s dilemma. The American Society
of Anesthesiologists in its newsletter ran an account that printed one mem-
ber’s particularly unsympathetic argument: “Poor people can’t expect to
drive a Rolls Royce or to eat in a fine French restaurant, so why should
they expect to receive the Cadillac of analgesics for free?” As if to head
off a looming public relations disaster, the president of the ASA deftly
steered the discourse away from economics and particularly far away from
Cadillacs and fine restaurants, to refocus directly on ethical issues and
principles. “It’s unethical,” John B. Neeld Jr. asserted, invoking a hallowed
pillar of bioethical principlism, “to withhold serv ices because of reim-
bursement.” End of story?
A narrative bioethics—attentive to situations and emotions—would not
regard the case closed when one character invokes a hallowed principle.
A narrative situation, to invoke Rita Charon, is always part of the relevant
data. Who invokes the principle? Why? Whose interest does it serve?
Narrative bioethics helps illuminate the hidden conflicts and reminds us
that all stories include gaps: no narrative tells everything. What don’t we
know about Mrs. Chavez, John Neeld, and the unnamed anesthesiologist?
Not-knowing, that is, matters as much in ethics as in law, and medical eros,
at home in non-k nowing, can also ask what is left unsaid. John Neeld
doesn’t say (perhaps it is unsayable?) that pain relief is withheld in Amer
ica every day—and not just for inability to pay. Medical undertreatment
for pain has been well-k nown for over fifty years, but its ethical implica-
tions have gone largely ignored, even among bioethicists.37 Narrative bio-
ethics is not fixed on assigning blame but rather focuses on elucidating
the stories (both told and untold) in ways that—with all voices heard and
with even the unsaid adequately accounted for—we are likelier to know
what the right t hing is.
The right t hing to do, regrettably, grows even harder to determine
because we live in an era marked by the massive overprescription of
opiate painkillers. The results are deadly, and only medical logos holds
the prescription pad. Hydrocodone and oxycodone products (currently
the most popular prescription painkillers) kill more people than heroin or
cocaine, and the United States consumes 99 percent of the world’s hy-
drocodone, much of it illegally.38 The Centers for Disease Control and
Prevention calls heroin use in the United States an epidemic: more than
8,200 people died of heroin overdoses in 2013 alone, while 45 percent of
those who used heroin were also addicted to prescription opioid pain-
killers.39 Doctors are caught in a no-win situation as social debates and
medical research almost monthly change the landscape. Researchers
have discovered that in rats morphine paradoxically spurs a “cascade” of
reactions in the brain and spinal cord that actually prolong chronic pain.40
The self-management of chronic pain with opioids is a tricky business—
dangerous, too—especially when doctors disagree, but when discussion
turns to ethics it is important to observe that prescription practices in
the United States w ere strongly influenced by the massive campaign for the
promotion and marketing of OxyContin, an oxycodone preparation cre-
ated by Purdue Pharma. “From 1996 to 2001,” as physician Art Van Zee
explains, “Purdue conducted more than 40 national pain-management
and speaker training conferences at resorts in Florida, Arizona, and Cali-
fornia. More than 5000 physicians, pharmacists, and nurses attended these
all-expenses-paid symposia, where they were recruited and trained for Pur-
due’s national speaker bureau.”41 This type of drug company symposium,
he adds, has been well documented to influence physicians’ prescription
practices, even though physicians attending these symposia—I would
add, no doubt with narratives of their own to tell—deny any influence.
Medical eros, through its affinity for narrative, has a surprisingly
important role in the ethical management of pain, as the experience of
Mrs. Chavez indicates, and no role is more important than its power, as
we have seen, to expose potentially harmful narratives. Such harm is par-
ticularly evident in the commonplace Us / Them narratives that divide
people into hardened opposing camps, with one group often demonized,
depending on whose side tells the story.42 Such Us / Them narratives may
often reflect rather than create divisions, but they are devilishly effective
in perpetuating and intensifying conflict. They sustain racial, ethnic,
national, and religious stereotypes, with stigmatized groups and mar-
ginalized individuals at special risk for harm. It is no coincidence that
Mrs. Chavez is poor, Hispanic, and female.
182 T he S t o ries
Race and ethnicity, which often overlap with lower socioeconomic

status, have a direct relation to the undertreatment of pain.43 The pain of
people identified with marginalized groups is often disregarded, as in the
once (and perhaps still) “dramatically undertreated” pain of AIDS pa-
tients.44 Raymond C. Tait coauthored a study of workers’ compensation
data showing that African Americans with job-related lower back injuries
were treated differently from whites, incurring lower costs, fewer compen-
sated work absences, shorter claim periods, lower disability ratings, and
smaller settlements. As Tait explained to a reporter: “Our data pretty
clearly say it’s a race issue.”45 African Americans in the United States face
a “disproportionate burden” of worse outcomes for pain. White skin can
be more important than traumatic injury in predicting the likelihood of
receiving opioid analgesics in the emergency department.46 Sickle-cell
disease in the United States, for example, affects mainly African Americans,
whose urgent emergency room requests for pain medication intersect
with powerful social narratives about drug-seeking behavior. In New York
City, pharmacies in white neighborhoods are three times likelier than
pharmacies in minority neighborhoods to carry adequate supplies of
opioid analgesics. Patients in the developing world routinely fail to receive
adequate pain medication, while third-world pain gets indirectly enfolded
within the well-publicized American “war” on drugs.47 Wars often create
a need for new narratives that implicitly justify, excuse, ignore, or deny
the pain of e nemy combatants, and noncombatants who are badly injured
often have their pain reclassified and bureaucratically abstracted, in the
newly militarized narratives, as mere collateral damage.
A narrative ethics of pain needs to pay special attention to stigmatized
groups and to individuals whose voices, overwhelmed by dominant so-
cial narratives and power structures, often go unheard or unheeded. Pain
is bad enough, but dying patients and the elderly frequently drop from
sight, much like children, as if their status erases the need for pain relief.
Even well-researched differences between women and men in pain sensi-
tivity—a measure subject to biological and psychosocial variables—easily
blend with stereot ypes characterizing w omen as hyperemotional, as if
their pain were somehow less deserving of attention. Barroom brawls
erupt over failures to understand that pain sensitivity differs by gender,
but men and w omen appear equal in their ability to tolerate pain inten-
sity. (Dentists already have taken note that true redheads carry variants
of the MC1R gene affecting pain receptors in the brain, which makes them
resistant to subcutaneous local anesthetics.)48 The questions for narrative
ethics are less about data, principles, and logic as grounds for moral ac-
tion than about who controls the stories, about identifying and reframing
harmful narratives, and about truly hearing what is said and recognizing
what is left unsaid. Speech is action—as charged with ethical significance
at times as a father’s curse. Medical eros would observe that Mrs. Chavez
(who insisted it was a painful delivery) didn’t complain about feeling pain.
Her exact words w ere that she felt like an animal.
Probe Three: The Infinity of the Face

Medical eros, in its focus on narrative, views pain in its social structure
as always concerning at least two inner lives. There is, first, the person in
pain; but pain also, most often, involves a second person: the person who
observes the pain of the other. The physician occupies this second-person
role, but its structural position is also occupied by caregivers, family
members, friends, or strangers. The question for the second-person
observer—ethical as much as medical—is, What call does pain make?
What response or obligation does pain incur in the person who occupies
the position where a response is called for, where even turning away or
doing nothing is an implicit response? This is the urgent question that
Susan Sontag posed in Regarding the Pain of Others (2003), and it is a
question of major concern for medicine, where the pain of others is a daily
presence and entails its own professional call. It is also the question ad-
dressed by the writer-director Preston Sturges in his 1944 biopic The
Great Moment, the nonfiction story of William Morton and the invention
of surgical anesthesia.49 The narrative pleasures of cinema, fraught with
ethical implications, often place the film audience in the second-person
role of observing the pain of the other.
Medical logos would seem to be the moving spirit behind The Great
Moment—a title that almost predicts a celebration of scientific achieve-
ment—and the film is loosely based on René Fülöp-Miller’s historical
novel describing the invention of surgical anesthesia, Triumph over Pain
(1938). Morton—a dentist too poor to afford medical school—conducts
184 T he S t o ries
the self-experimental tests with ether that lead directly to the discovery
of surgical anesthesia. For the next fifty years Massachusetts General Hos-
pital celebrated this anniversary—October 16, 1846—as Ether Day. On
that momentous day, at Mass General, chief surgeon John Collins Warren
performed the first successful public demonstration of pain-free surgery;
patients thereafter no longer faced the monstrous pain and lethal after-
math of operations performed without anesthesia. Surgery blossomed
with the option of slower, more intricate procedures.
Morton’s achievement certainly warranted scientific honor and finan-
cial reward. However, as in the Darwin–Wallace controversy over the
theory of evolution, counterclaims soon embroiled Morton in dispute. The
film begins with a flash-forward showing Morton as an old man, unrecog-
nized and unrewarded, worn out with poverty, frustration, and setbacks.
The film gains emotional power, then, from our knowledge that Morton
w ill die a ruined man as the result of a fateful act that he performs—h is
truly “great moment”—to save one patient from harrowing pain.
The G reat Moment recounts Morton’s story as a conflict between ab-
stract principles and a higher emotion-based or eros-driven ethics. It is
also a drama in which competing desires collide: while excited crowds
throng outside Mass General in anticipation of the groundbreaking op-
eration, delegates from the Massachusetts Medical Society meet behind
closed doors to stop the surgery. They, rightly, cite the Hippocratic
principle of do no harm (non-maleficence in modern principlism), arguing
that physicians are forbidden on ethical grounds from using medicines
with unknown ingredients, which was a valuable protection against quack
potions. Morton’s dilemma is that he can’t patent ether, a natural
substance, so his only sure source of financial reward will come from a
still-unpatented ether inhaler. Meanwhile, he has disguised his chemical
discovery u nder the pseudonym Letheon. If Morton’s desire for gain is
less than saintly, the upper-crust delegates of the medical society (the
word snob springs to mind) are far from spotless, desiring mainly to keep
a lowly dentist in his place. All power resides with the delegates, and
Morton thus f aces a stark ethical choice. His fortune depends on tem-
porarily maintaining the secret of Letheon, but secrecy means that
an unknown patient will undergo a harrowing, fully conscious, unanes-
thetized leg amputation performed (as Warren says dryly) “in the old
way.”
Figure 6.2. Operation scene from The Great Moment (1944),

directed by Preston Sturges, with Joel McCrea as William Morton.
Paramount Pictures.
The conflict now moves to a new level as Warren yields to his medical
society colleagues and prepares to operate. The camera follows Morton
down a long hallway in a lingering portrait of his isolation and indecision.
Ave Maria plays softly on the soundtrack while a priest attends to a young
girl on a stretcher outside the operating room; the unknown patient has
acquired an age, gender, and body. Morton ends his long walk at the
stretcher. Above his head, the film puts viewers in the second-person po-
sition as we glimpse the crowded amphitheater in which the girl’s awful
ordeal is about to begin. She assumes almost the role of sacrificial victim
as Morton m umbles a few words of gentle concern (Figure 6.2).
The girl—nameless—k nows nothing of the medical dispute about
principles. With one prominent tear glistening on her cheek, she responds
to Morton, saying that “a gentleman” has made a new discovery and that
the operation “doesn’t hurt anymore.” The dramatic ironies turn b itter
as Morton and the audience recognize his complicity in her upcoming or-
deal. Narrative ethics throws light on dramatic choices and actions.
What w ill Morton do?
“Not to relieve pain optimally,” writes the revered bioethicist Edmund
Pellegrino in a 1998 JAMA essay on palliative care, “is tantamount to
186 T he S t o ries
moral and legal malpractice.”50 The decision for Morton, without the ben-
efit of an essay on bioethics, is instantaneous. Looking into the girl’s
eyes, as if seized with a sudden epiphany, he acts. Simultaneously—this
is still Hollywood—the doors of the operating theater fling open with a
near-celestial flood of light. A musical crescendo assures viewers that the
girl is spared. As distinct from the just-celebrated medical event, the film’s
great moment is Morton’s private moment of truth: an ethical decision. It
is not entirely a happy ending b ecause viewers already know, via the
opening flash-forward, that Morton’s act of moral courage will mean the
ruin of all his worldly hopes.
The concept of thinking with stories, so basic to medical eros, offers a
chance to reflect on how the second-person position (as regarding the
pain of others) entangles ethics with two apparently unrelated phe-
nomena: emotions and f aces. Emotion, of course, is the driving force
in Morton’s ethical decision. The film represents moral action not as a
product of rational analysis—sifting evidence, analyzing arguments,
weighing principles—but as an almost spontaneous emotional impulse.
Morton, unlike the chair of anesthesiology, both knows what the right
t hing to do is . . . a nd he also does it, spontaneously. Emotion, in this
exploratory thinking-with stories, emerges as necessary for moral ac-
tion. Neuroscientist Antonio R. Damasio describes a patient with a local-
ized brain injury that impaired the ability to feel emotion while leaving
intact the ability to reason. Significantly, this emotionless reasoner per-
formed well on tests of moral judgment but had lost the power to make
decisions.51 Emotion, in short, proves indispensable to an ethics that not
only knows what is right but also acts rightly. Put differently: medical
logos, as if blind to its own blindness, quarantines emotion in ethical
decisions only at the certain risk of an ethics hamstrung by an inability
to choose and to act.
“The ethic u nder which I toiled,” Rafael Campo writes about his days
in medical school, “was that anyone who had time to write about his
feelings certainly was not spending enough time searching the medical
literature for relevant articles and memorizing the data.”52 The personal
transformation for Campo came as he gazed into the face of his suddenly
debilitated patient Aurora. The Great Moment highlights a similar occa-
sion when Morton stands beside the girl on the stretcher—holding his un-
patented ether inhaler like a wounded bird—and gazes into her face.
The face has much to suggest about an emotion-r ich ethics of pain. Al-
though human brains possess a facial recognition network, the face as
an ethical concept holds a different status in the work of philosopher
Emmanuel Levinas, and we cannot leave the second-person ethics of
pain without a brief conversation with Levinas.
Ethics for Levinas—one of the major continental philosophers of the
modern era—is where philosophy begins. Ethics, as he puts it, is “first
philosophy.” If philosophy can’t get ethics right, Levinas considers it use-
less, so the job of philosophy is to start with ethics. Ethics, in turn, starts
with the face. The face, as Levinas argues, is more than an anatomical or
biological feature: it represents the otherness of the other person. It signi-
fies the inherent, ineradicable, inexhaustible differences that make each
person irreducible to any knowledge that might summarize or “contain”
them. The face cannot be reduced to an object of knowledge or even to
an object of vision b ecause, for Levinas, the other person—in his or her
unknowable otherness—cannot be objectified. The face, instead, evokes
an experience: an experience of not-k nowing. It is a not-k nowing that dif-
fers from ignorance or lack of biomedical data. The face evokes a personal
experience of the uncontainable, untotalizable, incommunicable infini-
tude of the other person—which is to say, of everyone.
Levinas, in his thinking about the infinitude of the face, drew on his
experience during World War II imprisoned in a German stalag reserved
for Jewish prisoners of war. (His m other, f ather, and two b rothers in Lith-
uania w ere machine-gunned by Nazi soldiers.) He noted that the stalag
guards gave no sign of seeing anything h uman in their prisoners. War,
however, is only the most extreme instance of a dehumanizing gaze. The
infinitude of the other person is a concept that—given the ease with which
we ignore it—deserves a second thought. Doctors look into the faces of
patients e very day, in the act of delivering medical care. Do they ever rec-
ognize the infinitude of the patient? Does a patient ever look into a doc-
tor’s face and recognize an unknowable infinitude? Recognition suggests
a cognitive state, but for Levinas the face makes an immediate emotional
rather than cognitive or reflective claim. Our relation to the face, as he
puts it, is “straightaway” (d’emblée) ethical.53 This straightaway ethics de-
pends on an emotional contact that Levinas describes as a “shuddering”
188 T he S t o ries
( frémissement), a word translating the term (as he explains in a learned

annotation) that Socrates uses to describe the force of eros.
An erotic, face-to-face “shuddering,” even without its classical allusion,
taps into emotional strata more primitive than reason, and it might well
describe what happens to William Morton as he gazes into the face of the
young girl. “The face,” as Levinas writes of the precognitive, emotional
shudder, “opens the primordial discourse whose first word is obliga-
tion.”54 Medical eros may find Levinasian philosophy a bit thick and
solemn for everyday use—reading Levinas is definitely slow-going—but
Morton’s gaze into the face of the young patient certainly initiates a dis-
course of obligation: “Are you the girl, the girl for the operation?” he asks.
Her unthinkable imminent pain hangs in the balance between them. The
shudder of emotion implicit in their face-to-face contact, which Sturges
signals with a full orchestral score, is not the opposite of reason, not a trite,
frenzied juice squeezed out of the limbic system, even if it is also quite
different both from cognition and from pity. The G reat Moment, with all
the limitations of narrative, nonetheless shows how pain constitutes the
occasion for an emotional shudder of understanding in which we grasp
the infinity of the other person and act upon a concern that is “straight-
away ethical.”
Skeptics may interpret Morton’s ethics of the face as coinciding too
neatly with cinematic displays of male virtue that regularly depend on dis-
plays of female helplessness. Or they may contextualize his action and
reflect that The G reat Moment speaks to a World War II audience that ex-
alts male self-sacrifice: a performance called forth by an attractive girl
with no name and no history, who might almost serve as an icon of na-
tional innocence. No matter. Skepticism has slipped us back into thinking
about rather than with stories. The ethical call of pain and the face of the
other, moreover, contain useful suggestions for the self-management of
pain. The person in pain needs to recognize that institutions are imper-
sonal not solely as a by-product of size, complexity, or convenience; rather,
institutions cultivate and deploy, as to their direct advantage, a stone wall
of bureaucratic facelessness, like phone trees or Web sites engineered to
eliminate human contact. Neglect of the face takes on new meaning when
physicians spend an entire hospital-room visit peering into their laptop
screens. The G reat Moment deploys the pleasures of narrative, as if on
behalf of medical eros, in an implicit critique of absent faces: committee

decisions made on abstract principle, distributed by memo, and enacted
by rotating teams of employees as uncommunicative as their nametags.
Self-management needs to look elsewhere.
Medical eros, in its role as contrary and complement to medical logos,
reminds us of the ethical implications of pain that reason alone and princi
ples alone cannot convey. The goal is not to steer decisions in a specific
direction but rather to get the stories into the open, to sift their competing
values, to discuss any conflicts, and to explore their power to work on
us. I cannot imagine the audience that would endorse a conclusion to The
Great Moment in which Morton glances at the girl, shrugs his shoulders,
and strolls away. Sturges crafts a narrative in which a face-to-face
encounter and the prospect of imminent traumatic pain prompt a
straightaway ethics that makes it impossible (short of self-betrayal or a
perverse fall into evil) for Morton not to do the right t hing. If we agree
with Morton’s decision, we, too, share in a straightaway ethics with its
erotic shuddering. The self-management of pain will be far more difficult
without a respect for the role of eros, emotion, and desire. A truly desir-
able transformation in the understanding and treatment of pain might
well begin with new macrolevel narratives that give as much respect to
the face of the other—which is our own face as if seen in a mirror—as to the
pharmaceutical compounds and to the microlevel cellular structures that
occupy medical logos and the molecular gaze.
Part Three
The Dilemmas
Chapter Seven
Black Swan Syndrome:

Probable Improbabilities
The essence of life is statistical improbability on a colossal scale.
Richard Dawkins, The Blind Watchmaker (1986)
P ain is the archetype of a probable event. Almost everyone experi-

ences it at some time, and it is the number one complaint among
older Americans. There is a dilemma, however, concealed within the bio-
medical emphasis on probabilities. When you hear hoofbeats, so goes the
orthodox medical school advice, don’t think zebras! Symptoms in medi-
cine constitute the hoofbeat event that sends patients to doctors and that
sends the physician in search of a probable cause. It even underlies the
concept of patienthood. “May I never see in the patient anything but a
fellow creature in pain”: the oath of Maimonides, sometimes recited by
graduating medical students, takes the probability of pain as an unspoken
assumption, as if to be a patient means being in pain.1 A life entirely
without pain constitutes an improbability of the highest order; congen-
ital insensitivity is rare, thankfully, because it is no gift, and people born
fully pain-f ree most often die young. Medical logos and the molecular
gaze, which depend upon rational calculation, statistical data, and the
193
194 T he D ilemmas
orderly law-like discoveries of laboratory science, greatly increase the

clinical reliance on probabilities. The generation of probable knowledge
is almost synonymous with health care and is regarded as a self-evident
good. “The aim of all medical research,” writes the clinician and re-
searcher Guy B. Faquet, “is to accrue scientific knowledge to the medical
database, and in so doing, provide the foundation for ultimately improving
health care.”2
The probabilistic knowledge accrued to the medical database leads to
innumerable practical quandaries, however, such as how to weigh the
risks versus benefits of mammograms for women under fifty. Statistical
probabilities are notoriously hard for all but statisticians to wrap our
minds around. (It remains a puzzle to me why twenty-five “tails” in suc-
cession don’t increase the odds for “heads” on coin flip twenty-six—they
don’t, but I’d bet heads anyway.) Probabilities, although they seem an-
chored in statistics and in the nature of t hings, are also a product of the
pattern-seeking human brain. Early hunter-gatherers no doubt carefully
observed annual herd migrations to detect probable patterns, but in its
statistical form probabilistic thinking has an almost pinpoint origin in the
so-called Age of Reason. “The decade around 1660,” Ian Hacking writes,
“is the birthtime of probability.”3 Ever since, patterns extracted from ac-
tuarial data underwrite the insurance industry, patterns extracted from
epidemiological data underwrite public health policies, and patterns ex-
tracted from our online choices underwrite what annoying ads will pop
up on our computer screens.
Probabilities, in short, sweep across our lives in ways that invisibly con-
struct our everyday world. Take risk, for example. Statistical probabili-
ties encourage us to view risk less as the threat of a f uture event than as a
virtual reality: we are already at risk, if the numbers say so. The award-
winning actress and h uman-rights activist Angelina Jolie, at age 38, opted
for a preventive double mastectomy a fter learning that she carries the
BRCA1 gene and faced an 87 percent risk of developing breast cancer.
“Once I knew that this was my reality,” she said, in words suggesting how
far statistics reshape not only our bodies and our health but also our sense
of what’s real, “I decided to be proactive and to minimize the risk as much
as I could.”4
B lack S wan S yndr o me : P r o bable I mpr o babilities 195
Statistical discourses of probability proliferate ever new dilemmas as

they mesh with other features of biomedical thought. Jolie f aces still more
preventive surgeries. “I started with the breasts,” she continues, in the
objectifying language of biomedicine, “as my risk of breast cancer is higher
than my risk of ovarian cancer, and the surgery is more complex.” Thus,
two years a fter her double mastectomy and facing a 50 percent risk of
ovarian cancer, Jolie elected to have her ovaries removed.5 As a wife and
mother, she explains, what motivates her preemptive surgeries is concern
for her family. If logos provides the risk assessment, eros drives the deci-
sions. Eros has its own slant interest in probabilities. Traditions of ro-
mantic love, that is, emphasize the one-in-a-million unique individual—the
single soul mate in a universe of also-rans—who emerges when two
strangers lock eyes across a crowded room. Suppose your singular soul
mate, however, is an Ashkenazi Jew. A fter undergoing eight rounds of
maximum-dose chemotherapy, Elizabeth Wurtzel (author of the 1994 au-
tobiography Prozac Nation) contends that all Ashkenazi Jewish w omen
should have the BRAC test because they are ten times more likely than
other women to test positive.6 Modern love, it appears, now cannot work
its magic f ree from statistical probabilities. Our bodies are already tat-
tooed with invisible numbers whose acceptable range is keyed to prob-
abilities: cholesterol counts, heart rates, blood pressure, fat-to-muscle
ratios, and daily step targets. The question for medical eros is how far, in
giving our lives over to a calculus of probabilities, we ignore the improb-
abilities, singularities, coincidences, and anomalies that make falling in
love a welcome adventure, but also hold hidden risks far worse than ro-
mantic breakups or predictable divorce rates. The perils turn catastrophic
if the one big improbability we ignore is the deadly black swan.
Improbabilities and the Black Swan

A key dilemma at the heart of medical logos might be expressed as a par-
adox: how to reason about fringe experiences that reason can’t make
sense of. Absolute irrationality poses a less daunting challenge to biomedi-
cine than do shadowy events that fall just short of unreason and evoke the
dark regions that medical eros is at home in, including the native habitat
196 T he D ilemmas
of the Black Swan. The Black Swan is a metaphoric figure—the invention

of a former Wall Street trader, Nassim Nicholas Taleb—standing for any
improbable event that c auses massive consequences.7 Improbability is
the key trait of the Black Swan, but not just any unforeseen improba-
bility: the improbable event must entail g reat damage (or g reat benefit). A
sudden unforeseen crash of world financial markets, for example, would
count as a Black Swan, and the example is at least appropriate. Black
Swans as financial events certainly reflect Taleb’s practical experience as
a high-stakes broker in an arena where fortunes are lost and won; but
Black Swan catastrophes do not belong solely to financial markets. It is
even possible to benefit from Black Swan events, as Taleb did, having
taken appropriate precautions to r ide out a sudden, unpredictable market
collapse. The invisible Black Swan, in any case, is a fact of everyday life,
and it also inhabits the databases of biomedicine, with their accrual of sci-
entific knowledge, where lethal anomalies can emerge with blinding
suddenness, like Barbara Rosenblum’s breast cancer. The Black Swan
takes us by surprise and confronts us at our weakest point with an irrup-
tion of what had seemed safely excluded from our mental construction of
a probable world: t he improbable, the not-known, and the unknowable.
We mostly operate like our hunter-gatherer ancestors with brain
systems evolved to promote survival by locating patterns of probabili-
ties: probable food, probable shelter, and probable reproductive success.
Thus, for Taleb it is crucial to recognize—because it goes against the
grain of h uman evolution—how far our pursuit of probabilities blinds us
to the shadow of the improbable Black Swan. The Black Swan, even
deadlier because we ignore it, is the opposite of an abstraction. It is a
real-life menace that raises practical and ethical questions, as well as
thorny, unresolvable dilemmas, about how to live and what to do.
Taleb d oesn’t mind coming across as a maverick. He has spent his
entire financial c areer bucking trends with notable success, and he relishes
the role of self-taught rebel whose personal passions and intellectual pur-
suits will strike many, he knows, as eccentric. He prefers Marcus Aure-
lius and Montaigne to current academic favorites, and such intellectual
preferences reinforce his native temperament, which (raised to the level
of a philosophical outlook) he calls skeptical empiricism. Skeptical em-
piricism embraces the respect for hard empirical facts over abstract
theories that drives Taleb’s distrust of systems, but it is a paradoxical

respect—tempered by his equally strong belief that the facts are never
sufficient. Hard facts are the best we have, but they are not good enough
because we cannot possess all the facts, b ecause facts are inherently frag-
mentary, and b ecause previously unknown facts keep emerging to under
mine previous fact-based theories and practices.
Faithful readers of the Tuesday science section of the New York Times
know the feeling that any week now coffee may be declared either good
or bad for your health, or both. Taleb’s brand of skeptical empiricism does
not extend to a distrust of reason as inherently flawed. Facts, for Taleb,
are the best raw materials for reasoning, and reasoning is our best tool
for thinking; but, nonetheless, facts and reason remain unreliable. The
facts are always changing; reasoning is error-prone; and fact-based prob-
abilities are always at risk from an irruption of the improbable. The
danger, for Taleb, is that our statistically-based probabilistic thinking
tends to shut down an openness to anomalies, which by definition are in-
accessible to fact-based, reason-driven, statistical powers to predict or
even to anticipate their appearances.
The Black Swan is an emblem of singularities: one-time, unpredictable,
and perhaps unrepeatable events. Taleb, during the bull market years of
Bill Clinton’s presidency, had a front row seat for observing singularities
and Black Swan events. As fresh young traders arrive on Wall Street, they
rack up huge profits by predicting market fluctuations with computerized
algorithms that possess an almost instantaneous capacity for calculation,
data processing, and automated reasoning. Their success takes on mate-
rial shape in the form of the condo in Manhattan, the Mercedes, the
country house in Connecticut. U ntil, one fine day, something unpredict-
able and improbable happens, and they lose everything: the collapse of
the Soviet Union, the burst of the tech bubble, the mortgage meltdown,
the global recession. An unforeseen event occurs, a gigantic singularity,
and the financial markets go haywire. The bright young traders with their
condos, cars, and country h ouses, in the cold insider lingo of Wall Street,
just “blow up.”
For Taleb, the everyday world, like Wall Street, proves stranger and
more dangerous than most people (embedded in a network of probabili-
ties) assume. Assumptions based on probabilistic thinking are, for Taleb,
198 T he D ilemmas
a self-set trap unwittingly designed to ensnare us. He views the everyday

not as a stable, familiar residence—not even as a benign refuge where phi
losophers who give up on the claims of reason can find solace in common
practices and daily forms of life—but rather as the haunt of the Black
Swan: a site of radical uncertainty, instability, and catastrophic reversals
even more perilous precisely b ecause everyday life, ordinarily, appears
so benign. The ordinariness of everyday life is, in his view, utterly decep-
tive; it’s a smokescreen concealing unknown, unsuspected, singular
dangers, as if the sweet, quiet couple next door practices satanic rituals
and infant blood sacrifice.
Born into a Greco-Syrian community in Lebanon, Taleb declines the
descriptor Lebanese because national borders strike him as one more slick
empirical deception, as slippery new facts force out slippery old facts, and
the lines of nationhood change. He saw his homeland, which he viewed
as a cosmopolitan, almost paradisiacal crossroads, where for some thir-
teen centuries Muslims and Christians had lived together in peace, sud-
denly unravel in a fifteen-year civil and religious war that left over 100,000
dead. He saw his grandfather, a deputy minister, live out his last days as
a political exile in a shabby Athens apartment. As Taleb summarized the
awful transformation: “a Black Swan, coming out of nowhere, transformed
the place from heaven to hell.”8
The dilemma for Taleb is plain: the everyday empirical world cannot
be adequately understood either through facts or through reasoning de-
pendent on facts. Observable facts are inherently unreliable, and thus we
certainly can’t rely on the logic or reasoning that they support. It was once
believed—so firmly as to underwrite the standard example of a logical
syllogism—that all swans are white. The syllogistic chain of logic is im-
pervious: all swans are white, X is a swan, therefore X is white. Logical
syllogisms constitute a machine for generating valid conclusions, but the
validity of logic depends on the validity of the facts or statements fed
into the logic machine. The Black Swan stands as a caution—rooted in
history—against a reliance upon empirical facts and their logic machines.
The historical assumption that swans are white, based (reasonably
enough) on the empirical observation of white swans, suddenly unraveled
into the conceptual equivalent of smoking wreckage when astonished
nineteenth-century travelers to Australia encountered a swan that is ac-
tually black: Cygnus atratus. Syllogisms and reason are little help when
new facts emerge and old facts have heart attacks. The Black Swan—not
the name of a system but a cautionary metaphor against systems—reflects
Taleb’s experience with the fact-based experience that you never see
coming: singularities, anomalies, and unexpected catastrophic events. It
imagines unseen, unknowable disaster already nested within the everyday
probable world that we construct out of gossamer facts and reason.
Probabilities, Taleb’s nemesis, are visi ble everywhere t oday in the
world of Big Data. They underlie police work—the acronym Crush
stands for Criminal Reduction Utilizing Statistical History, or, in plain
English, predictive policing—and they power the algorithms behind dating
Web sites, online retail sales, and the U.S. National Security Agency.
Electronic medical records can now become, in effect, “disease surveil-
lance tools,” as a recent medical study explains in proposing an algo-
rithm to identify criteria predictive of coronary and heart failure events. 9
Probability, in its disrespect for accident, whim, and irrationalism, is
almost an anti-eros. We invoke it to describe both supposedly objective
laws of chance and subjective degrees of belief.10 That is, probability
refers to subjective claims with fluctuating degrees of credibility (by
midnight, t here is a high probability I w ill be asleep) and to objective
law-like regularities (the next coin flip has a fifty-fi fty probability of
landing “heads”). Clinical medicine relies on both objective and subjec-
tive senses as a basis for its prognostic claims, employing so-called Bayesian
probability, which combines objective experimental data with subjective
expert knowledge. (The patient, presumably no expert, adds nothing to
this formula.) The specialists who informed Angelina Jolie about her
87 percent risk of breast cancer put her in possession of probable knowl-
edge. The knowledge also possessed her. She chose to have her breasts
surgically removed not to treat disease but to lower her 87 percent prob-
ability of disease to a less alarming, if still uncertain, statistical level. It
was a brave and difficult choice. We all dwell, like Jolie, amid statistical
probabilities, and, right or wrong, we make life-changing choices based
on what we regard as the most probable outcome. The Black Swan re-
minds us that, no matter how good the statistics and probabilities are,
we also live in a world of unreasonable, anomalous, improbable, sin-
gular events that no one can foresee. T hese bolts out of the blue can
200 T he D ilemmas
bring massive sudden catastrophes as real as breast cancer, heart attack,

or the collapse of world financial markets.
Black Swans and Magical Thinking

“Life changes fast”: Joan Didion’s stark opening observation in The Year of
Magical Thinking (2005) describes, in general terms, the Black Swan mo-
ment when her husband, fellow writer, and daily companion of forty years,
John Gregory Dunne, as he sat by the fire in their Manhattan apartment
nursing his usual predinner scotch, suddenly pitched forward and hit the
carpet face-first. “Life changes in the instant,” Didion continues. “You sit
down to dinner and life as you know it ends.”11
The power of the Black Swan to expose the strangeness of the
everyday—the total demented otherness nested within what looks so
ordinary and benign—finds a perfect image in the picture of a devoted
couple, comfortably well-off and well past middle age, preparing to sit
down to dinner once again, as they’ve done for the last forty-some years.
Nothing to notice, no novelistic detail worth lingering over, as their daily
domestic ritual unfolds. Then, abruptly, the fabric of everydayness—
stitched together through 10,000 probabilities—opens up, rips, unravels,
and exposes the hidden strangeness that was always there, unseen,
waiting for its moment to emerge and to change everything. Are the de-
tails of a forty-year marriage medically relevant data? Not with John
Gregory Dunne face down, dead, on the carpet. Medical logos springs
into action as the emergency medical technicians and emergency room
doctors seek to revive an elderly white male with no vital signs who suf-
fered an apparent myocardial infarction. T here is no happy ending.
Medical eros, occupying a perspective that differs from the ground-level
urgencies facing the EMT crew, would observe that John Gregory
Dunne’s fatal heart attack changed all the facts. It continued to change all
the facts in the world of Joan Didion. Patienthood does not stop—only
shifts its shape—at the legal border signified by a death certificate.
“Grief has no distance,” Didion writes of her new reality, as if trapped
in an all-surrounding, battering surf. “Grief comes in waves, paroxysms,
sudden apprehensions that weaken the knees and blind the eyes and
obliterate the dailiness of life.”12
The obliteration of dailiness u nder the assault of the Black Swan is what
deserves special emphasis here. Dailiness belongs to the land of probabil-
ities, and it can vanish along with the reassuring probabilities that help de-
fine an individual life-world. Didion’s previous sense of “dailiness” doesn’t
just vanish, however, as if irreversibly gone. She chooses an arresting
image—a vortex—to describe the weirdly interruptive, multileveled state
of being that she now inhabits, at least in her inner life. The obliteration of
dailiness, that is, remains incomplete; it is punctuated, like grief; its odd,
jumpy, epileptic, back-and-forth movement resembles what might happen
if everydayness suddenly opened up, as a whirlpool opens up within a
flowing stream, with a circling, centripetal inward and downward draw.
Something like this vortex-effect suction draws Didion down into an un-
known dimension far beneath the everyday surface where, remarkably, she
continues to function, carrying on with her social duties as widow, mother,
friend, writer, and public figure. The vortex, however, remains a new fea-
ture of an altered life-world, as unfathomable as grief, and her steady flow
of new dailiness is now punctured with strangeness. The extended period
when the vortex operates at full force she calls her year of magical thinking.
Where have I met this punctuated vortex effect? Then I recall. The
shift into magical thinking reminds me of anthropologist David Lewis-
Williams and his theory of Paleolithic cave painting.13 A shaman leads the
torch-lit ritual descent into a pitch-black, subterranean cave: the interior
of the sacred earth m other. As they proceed farther into the cavernous
darkness, the smoky flickering torches suddenly light up images of bison
and of antelope, whose outlined contours take on a three-dimensional
kinetic life as they merge with the rough, irregular cavern walls. This
prehistoric and truly otherworldly ritual descent, as Lewis-Williams ar-
gues, opens up for the stunned participants an “intensified spectrum”
of consciousness.
For Didion, the descent of the Black Swan may produce something like
a similar split in consciousness, as grief pulls her down in a battering
vortex effect, opening onto an intensified magical dimension far removed
from the probabilities and rationalities of dailiness. Some psychiatrists
now use the term “complicated grief” to describe an ongoing heightened
state of mourning that prevents healing, but it does not apply to Didion.
Is her mental state an aberration treatable with psychotropic drugs? It was
202 T he D ilemmas
a psychotropic drug that impaired my wife Ruth’s vision and broke her
leg at the hip. For Joan Didion, Black Swan trauma exposed her everyday
consciousness to an influx of forgotten, undiagnosable, irrational other-
ness that may well belong to our ancestral birthright: a primal dimension
of not-k nowing well known, as it happens, to medical eros.
William James, a founder of modern psychology and the only American
philosopher with a degree in medicine, puts the matter succinctly: “our
normal waking consciousness, rational consciousness as we call it, is but
one special type of consciousness, whilst all about it, parted from it by
the filmiest of screens, t here lie potential forms of consciousness entirely
different. We may go through life without suspecting their existence; but
apply the requisite stimulus, and at a touch they are t here.”14 The Black
Swan is, for Joan Didion, the requisite stimulus: it parts the filmiest of
screens put in place by reason and probabilities, drawing her into a
mode of thinking and of being that lies uneasily close to delirium, but
also permitting her return as the vortex-effect spins her back t oward the
everyday world. “On most surface levels,” she reports, “I seemed rational.
To the average observer I would have appeared to fully understand that
death was irreversible.”15 When the surface opens up, however, when the
vortex of grief draws her down into the strange, intensified, magical do-
main, she fully believes that John Gregory Dunne—buried, mourned,
memorialized—is nonetheless out t here somewhere, just waiting, poised
to finish his usual scotch and rejoin her for dinner.
Medical logos, like the financial services industry, is driven by prob-
ability, and the focus on probability extends even to such valuable ad-
vances as simulated patient interviews using paid actors. “I’m called a
standardized patient,” writes Leslie Jamison in The Empathy Exams
(2014), “which means I act toward the norms set for my disorders.”16 Med-
ical norms, the probabilistic hoofbeats that medical students learn to
recognize, are indispensable in the world of biomedicine and modern
health care. Like other indispensable modern enterprises, however,
medicine still relies on an instrument for measuring and for creating
probabilities devised in the nineteenth c entury, the so-called Gaussian
function or bell-shaped curve. German mathematician Johann Carl
Friedrich Gauss (1777–1855) introduced the concept that bears his name
and still governs much of modern life. Three standard deviations from
Figure 7.1. The Bell-Shaped Curve: Home of the Black Swan. David B. Morris.
the norm—the inescapable, probable norm—equal 99.7 percent of any

data set. I feel about the bell-shaped curve much as I feel about psycho-
tropic drugs. I suppose they have their uses, but they also set us up for
disaster. Disaster, of course, is hidden away in the apparently innocent
figure that looks to me less like a bell than, as my b rother says, a l ittle hat.
The little hat is almost all crown and no brim—as if inviting us to ad-
mire its fashiona ble arch. Taleb is not fooled. The Black Swan nests
within those two symmetrical brims (often called fat-tails or long-
tails) that slope away, precipitously, from the third standard devia-
tions. The brims of the l ittle hat—t he fat-t ails or long-t ails—a re where
the mysterious 0.03 percent of any data set resides in almost complete
cognitive darkness, outside the norm; it is easy to forget that t hose tails
exist. Forgetting is easy b ecause life under the bell-shaped curve auto-
matically directs our attention away from the almost invisible double
0.015 percent outliers, the bandit hideout of the norm-busting Black
Swan (Figure 7.1).
Taleb hates the bell-shaped curve. Not because it is wrong—it has sta-
tistical validity and practical uses, especially as we distinguish between
high-probability and low-probability events—but because we so often fail
204 T he D ilemmas
to notice its implicit dangers. It creates a descriptive picture that lulls us

into a false sense of security. It also allows its descriptive picture to impose
predictive patterns. It carves up a classroom of thirty students, say, into a
massive central group—whose performance is declared normal—flanked
by two miniscule outliers, the rare A+ student and the rare F− student,
who are statistically abnormal. Suppose two sets of Mensa triplets register
for the class? OK, forget Mensa triplets—how common are they? Taleb’s
point is that life, which cannot be considered a data set, remains far
stranger, far less normal, and far, far more dangerous than the bell-shaped
curve leads us to believe. Its so-called norms prove downright perilous
when they conceal from us the improbable reality of the Black Swan. A
statistical study of the type basic to medical logos shows that random DNA
mutations—what one of the study’s coauthors calls the “bad luck
factor”—are largely responsible for two-thirds of adult cancers.17 Sudden,
improbable events that entail massive personal costs reconfigure our lives
perhaps more often than we care to reflect. (“I shut my eyes and saw abso-
lute black.”) Hoofbeats don’t always mean horses. One September day in
2001, jets over Manhattan didn’t mean just another plane full of tourists.
Medical Error and the Logic of Not-K nowing

“Black Swan logic,” writes Taleb, “makes what you don’t know far more
relevant than what you do know.”18 Black Swan logic is, in effect, a coun-
terlogic, or an alogic of the improbable: fact-based nontheory against
theories. His emphasis on the not-k nown does not disable Taleb from
identifying several distinctive empirical features of the otherw ise
mostly unseen Black Swan. First, it is an outlier. It lies beyond all expec-
tation and outside all probabilities b ecause no observable, factual evi-
dence points to its existence or predicts its arrival. Who knew that Russia
would default on its bonds? Second, it carries an extreme impact. It
doesn’t merely disrupt calculations or screw up a theory, but rather it
faces real p
eople with real disaster, like the twin towers of the World
Trade Center slowly beginning their surreal floor-by-floor implosion.
Third, once the Black Swan appears, in defiance of all our calculations
and expectations, we feel compelled to explain it, usually in ways that
sustain our underlying faith in evidence, in reason, and in probability.
Taleb offers no explanations. He proposes no alternate g rand narrative.

Instead, he argues that it is a mistake to believe that our empirical tools
will protect us from the unknown. What we don’t know is more rele-
vant, given the Black Swan, than what we know or—worse—what we
(wrongly) think we know.
The Black Swan, as Taleb describes it, does not contain an erotic
dimension, but it certainly plunges its victims into a nightmare of
not-k nowing. If nothing in our experience—no evidence, no logic, no
likelihood—prepares us for the Black Swan, if we are fated to wait u ntil a
new, unanticipated, outlier incarnation rips apart our carefully con-
structed fabric of everydayness, medical eros would ask a fundamental
question based, if not on compassion for others, at least on self-love and
a desire to avoid complete disaster: Is there anything we can do to pro-
tect ourselves?
Yes. Taleb believes t here is a limited self-protection available in an
awareness of the Black Swan and in a vigilant, proactive, self-protective
stance. His almost monomaniacal vision of unpredictable, ruinous threats
embedded within the everyday flow of financial markets led him to con-
trive personal investment strategies so conservative that he might as well
have stuffed his cash directly under the mattress. He made a fortune, as
a result of such strategies, in the unforeseen Black Swan market crash of
1987, a disaster against which he was fully protected. Otherwise, he re-
veals no temperamental interest in a Bataille-like immersion in the not-
known as constituting an erotic destruction of the self-containment basic
to his character as he is in his normal life. His advice, to the contrary, is
not only that we take practical steps to protect ourselves against the not-
known but also that we maximize our exposure to what he calls positive
Black Swans. For example, if you are lonely, you do not maximize your
exposure to positive Black Swans—such as the sudden appearance of the
one-in-a-million lover—by staying home, eating ice cream, and waiting
for the phone to ring. You can go to a bar, lose weight, join an online dating
site, or buy a dog. Just remember that these innocuous everyday acts also
might, as dating-site veterans know, explode in your face.
Medical eros would join medical logos in emphasizing the need for pro-
tections from Black Swan assaults, and not just for patients. It would re-
mind doctors that they, too, live under the shadow of the Black Swan. The
206 T he D ilemmas
improbable, the unknown, and the unknowable confront physicians

with dangers that are too easily dismissed as coming with the territory.
Unlike the reason-based order and calm of the laboratory, the clinician’s
daily workplace proves at times as unpredictable as a combat zone; its
dailiness is subject to rupture, vortex, and obliteration. Health profes-
sionals, for example, stand among the first-responders called to help at
inexplicable, unforeseen catastrophes ranging from the earliest cases of
mysterious, deadly infectious diseases such as HIV / AIDS or Ebola to
nuclear meltdowns, radiation sickness, and bioterrorism attacks. Some
threats may be more like grey swans (partly visible, partly predictable)
because true Black Swans cannot be identified or predicted in advance;
but grey swans also emerge from beyond the central dome of probabili-
ties, which means that fully effective precautions and impervious zones of
safety do not exist. T here are no best-practice guidelines that offer iron-
clad protection against unknown pathogens.
Dr. H is the pseudonym for a pediatric surgeon whose error during a
routine heart-valve repair resulted in the death of a two-year-old boy. Mal-
practice insurance is no shield against error. How many doctors, per-
haps type-A , high-achieving, dedicated workaholics, truly believe that
they are at risk for negligent or incompetent acts? A lawsuit followed the
lethal heart-valve error, and the combination resulted in a near total oblit-
eration of Dr. H’s daily world. “I couldn’t sleep,” he explains. “I would
wake up at night. I would sit up at night and my heart was pounding. I
was beside myself with anxiety, fear, guilt. I felt terrible. . . . You go
through the looking glass. It’s just a very bizarre world.”19
The strangeness that can open up within the daily world of biomedi-
cine is not entirely abnormal, as we might wish or imagine, but, as the
response of Dr. H. suggests, it extends far wider than most patients be-
lieve. A patient-centered perspective encourages justified alarm at various
statistics that, as we have seen, indicate that doctors and medical errors
in the United States are a leading cause of death.20 The supra-dyadic re-
lations of illness, however, extend beyond patients and families to include
the doctors who, in the immense majority of instances, pursue their calling
with profound professional skill and personal dedication. Consider, then,
Dr. H’s account of an ordinary day on the pediatric surgical ward as he
resumes what looks like professional business as usual following the med-
ical error that swept him through the looking glass. The normal ex-
plodes: “Somebody bumped into me in the hall and said ‘Hi, how are you
doing?’ and I just started crying. I mean, I couldn’t stop. I think every
thing had been bottled up. I couldn’t even walk, so they sent me home.”21
Medical error to the individual doctor, despite the cushion of malprac-
tice insurance and formal medical-school lectures and small-group dis-
cussions highlighting the topic of medical error, almost always comes with
the improbability of a thunderbolt on a cloudless day. Medicine functions
best in a bell-shaped and normalized field, with any inherent strangeness
subtly denatured, its anomalies and improbabilities squeezed out into the
remote scrubland, figured as little brims or fat tails. Medical error thus
can prove shattering to doctors whose professional identity and personal
self-esteem are so often keyed to the mastery of intricate skills and of eso-
teric knowledge. A child’s death is heartbreaking—even worse if it was
preventable. Practical steps toward prevention and (where warranted)
professional discipline are necessities. Medical eros would also recognize
the heartbreak of Dr. H. What can it mean for a respected surgeon to be
sent home from work like a schoolboy? This is a portrait of medical logos
at a limit point where the physician implodes. Dr. H has no buffer in his
self-accusation, no companionship in his self-exile. There is no repara-
tion, no forgetting, and (perhaps most difficult) no self-forgiveness. The
Black Swan has struck, and the statistical probabilities that might esti-
mate the risk-factor of serious medical error in pediatric surgery, in this
instance, prove pointless and irrelevant.
Medical logos responds to medical error—even to catastrophes such
as Dr. H’s medical nightmare—with the resources of logic, reason, and
probabilistic thought, and to good purpose. Biomedicine to its credit ini-
tiates statistical studies in particular specialties to identify the most
common, predictable errors and then takes steps to eliminate t hese par
ticular errors through system-wide procedural changes: “pre-op check-
lists, no look-alike medication bottles, computerized ordering to replace
handwritten prescriptions, surgery sites marked directly in ink on the
patient’s body prior to the operation, computerized algorithms for every
thing from urinary catheters to blood thinners.”22 Taleb, as a high-stakes
trader alert to the Black Swan and determined to avoid provoking it, put
in place highly rational (but unconventional) financial strategies that
208 T he D ilemmas
allowed him to prosper while less alert investors— trusting to

probabilities—watched their 401(k) accounts bubble down the drain. (I
did.) Market strategies devised to protect investments, however, are
never foolproof, and institutional practices to limit medical error do not
offer emotional protection for doctors and for patients whose lives are
ripped apart by improbable and deadly Black Swan catastrophes.
There is no certain protection from Black Swan assaults, but at least
for certain individuals it is possible to mount an effective response. In 1982
Stephen Jay Gould—the famed Harvard evolutionary biologist and well-
known baseball enthusiast—was diagnosed at age forty with abdominal
mesothelioma. This rare cancer, according to his quick dive into the med-
ical literature, was regarded as incurable, with a probable median mor-
tality rate, a fter discovery, of eight months. His immediate dilemma, as
Gould saw it through his lens as a scientist, did not lie in the projected
mortality rate. The dilemma was how to understand the statistics, and
Gould (an “old-style materialist,” as he called himself) immediately set
to thinking about what the general, probable statistic meant for him in
particular. Most patients, given a median mortality of eight months, would
most likely conclude I’m a goner. Gould, with his knowledge of the bell-
shaped curve, knew that an eight-month median mortality rate actually
meant that half of the patients die in less than eight months, and half live
longer than eight months. He decided, calling on his basically upbeat per-
sonality, that he would belong to the longer-lived half; he also decided
that his age, optimistic outlook, and strong desire to live gave him a good
chance of belonging to the minority of survivors who inhabit the farthest
limits of the bell curve. “Attitude clearly matters in fighting cancer,” he
wrote in a magazine article about his approach to illness: a strategy that
combined detailed knowledge of statistical probabilities with an emotional
commitment to maintain a positive attitude. A gifted teacher, he described
the article—a sui generis illness narrative—as “a personal story of statistics,
properly interpreted, as profoundly nurturant and life-giving.”23
Gould lived for twenty years after his diagnosis with abdominal cancer.
The g reat value of his personal story of statistics properly understood lies
in suggesting that medical logos and medical eros together can at least re-
spond to certain Black Swan dilemmas, push back against catastrophe,
and allow certain intrepid people to enter into the not-k nown region of
serious illness fortified—in addition to whatever medications prove

valuable—with the surplus resistances and affirmations offered by intel-
ligence, strong desire, and a stout heart.
Life beyond the Brim: Curiouser and Curiouser?

Jason and Jenny Cairns-Lawrence, a couple from England, were vaca-
tioning in New York City on September 11, 2001, when their holiday was
interrupted by the terrorist attack on the World Trade Center. Several
years later, on July 7, 2005, they happened to be in London when terror-
ists struck with train and bus bombs that killed fifty-two people. Three
years later, in November 2008, they were vacationing in Mumbai when
terrorists struck in four days of coordinated shootings and bombings,
killing one hundred and sixty-four people.24 You might think that major
world tourist sites would pay the Cairns-Lawrences an annual stipend to
stay home. You might also think, b ecause we seem to live surrounded by
coincidences large and small, that at least a few scientists or statisticians
would take an interest in such well-documented, curious anomalies
and want to ask—as the Cairns-Lawrences must at times ask themselves—
just what is g oing on?
Nothing in my experience or research prepared me for the moment,
near midnight, when an intense heavy iron globe—an alien, unknown,
inexplicable pain—lodged like a small aching cannonball in my upper
chest and quickly began to radiate more pain into my left shoulder.
Intense pain, it turns out, was not the Black Swan, only its precursor.
As the leaden ball of intense pain swelled and spread and intensified,
the Black Swan was still out of sight—in this case not hovering, ready
to descend, but unidentified and unannounced.
A heart attack—r ight out of the blue—constituted my personal intro-
duction to the Black Swan. I count it entirely coincidental that the at-
tack occurred in the native home of Cygnus atratus, specifically the
cowboy / hippie town of Darwin, Australia, about as far north as you can
go Down U nder without standing in the Sea of Timor. I was in bed when
the chest pain started. After a fruitless search for aspirin, I throw on some
clothes, ask the night clerk to call a taxi, and, with what now feels like a me-
teorite in my upper chest, I tell the driver to head for the nearest emergency
210 T he D ilemmas
department. I can’t sit upright, so I just sprawl across the back seat,
sweating like I’d just run a marathon. As I glimpse the driver in the
rearview mirror, I can sense he’s already wondering if he’ll get paid. I’m
wondering, too. Medical friends insist that I should have called an am-
bulance, with its stock of clot-busting drugs, but I was in no mind to think
things through. The Black Swan ushers us into a region of not-k nowing
that is profoundly foreign to everyday rationalities. Cardiac pain swept
me right through the looking glass. Arriving by taxi at the emergency de-
partment, however, is a double mistake. I tip the driver handsomely,
with everything left in my pockets, and get in line at the admissions
window. It is now well a fter midnight, and a belligerent young woman
ahead of me is engaged in a lengthy debate with the attendant about her
boyfriend’s arm. The normal act of standing in line feels unbearably
strange. Am I patiently waiting my turn to die? Politely I say nothing.
I’m not alone, statistically speaking, even though in Australia I’m trav-
eling solo for my first extended trip since Ruth had entered the region of
not-k nowing in which she no longer knows me and no longer knows
whether I’m around. E very year some 515,000 Americans suffer a first
heart attack. Another 205,000 Americans suffer a repeat attack.25 Many,
I’m guessing, experience my total shock: Me? I am not exactly the poster
child for lifestyle illness: my slim list of merits includes regular visits to
the gym, a fine primary care doctor, a normal body weight, and a mostly
vegetable diet. A heart attack had never crossed my mind, and an unlucky
crocodile encounter in the Darwin outback where I planned to look at ab-
original rock art was far more likely. Of course, I had completely for-
gotten about the accelerated risk facing caregivers; with Ruth safe in her
residential facility, I had put aside thoughts of a possible corpselike sleep.
Another surprise awaits me. (Do Black Swans come in twos?) A fter the
trauma team controls the pain, stabilizes my symptoms, and dilates my
arteries, I am still lying prone on the hospital gurney, my chest swaddled
in electrodes, when a well-dressed w oman appears. She tells me she’s from
the business office (the business office?) and wants to know what medical
insurance I carry. And so it goes: once the Black Swan descends—or ar-
rives by taxi—patients can’t avoid such mundane and terrifying questions
as what will it cost and who’s g oing to pay? Other questions roll in like fog.
Would I ever get out of there? Was Darwin, Australia, really, truly, the
place where I was supposed to die? Then I suddenly realize I am fifteen

hours by plane from the West Coast of the United States, with no f amily
or friends within a thousand miles, and now the business office is paying
a call? The Black Swans just keep on coming . . .
Coincidences, like all statistically improbable events, proceed from be-
yond the dome of the bell-shaped curve, which helps explain why it is so
easy to dismiss them as the anomalies they are. But why are we so quick
to dismiss them? Reason—a nd perhaps the brain, too—fi nds it easy to
shrug off coincidences. The neuroscientist V. S. Ramachandran argues
that the h uman brain abhors coincidence because coincidences violate
deep evolution-based neural principles favoring probability, regularity,
and order. “And your brain,” he writes, “always tries to find a plausible
alternate, generic interpretation to avoid the coincidence.”26 Maybe that’s
true. The brains of stroke patients, for instance, can confabulate expla-
nations for why the patients c an’t move their (paralyzed) limbs. Coinci-
dences, however, also have the power to make us stop and wonder, if only
for a few seconds, perhaps giving us a glimpse of the territory that Joan
Didion’s vortex opened up. Then we pull ourselves together, adjust our
uniforms, and go about our normal business of calculating probabilities.
We don’t need a statistician to tell us that eventually someone w ill win the
lottery; we call the winners lucky. Coincidences, on the other hand, often
seem to proceed from somewhere beyond luck, and they are memorable
enough that almost everyone can recite a few personal examples. Chance
or randomness are the terms we use to explain (or explain away) coinci-
dences, when we d on’t interpret them as acts of God. They confront
us with experience that doesn’t make sense, that the rational mind has a
hard time getting a purchase on—like the idea of the infinite, or like
meeting the existentialist philosopher Jean-Paul Sartre at the laundromat.
Do coincidences, if we don’t automatically dismiss them as a statistical
fluke, have any role in health and illness? “It has been my experience and
the experience of many other therapists,” reports Rachel Naomi Remen,
“that when I am facing a difficult personal issue or a painful decision or
am struggling with some recalcitrant and stubborn part of my self, a very
peculiar thing will happen. Many of my clients will spontaneously bring
in the same issue.”27 Why, I keep wondering, just two days before leaving
for Australia and for the first time ever, did I go online on sheer impulse
212 T he D ilemmas
and buy travel medical insurance? The no-nonsense woman from the hos-
pital business office had no intention of leaving without an answer, even
at well past 2:00 in the morning; luckily I could pull out my newly minted
insurance card and, careful not to dislodge electrodes, hand it over. I was
hoping, without great confidence, that it wasn’t the product of an Internet
scam.
Allure and wonder are traits that make coincidences a form of statis-
tical improbability of special interest to medical eros. Not all statistical
anomalies generate allure or make us pause and wonder. Allure belongs
to the uncanny strangeness that only certain improbable events possess
or generate. Allure also shares with eros a power to draw us into mental
states intrinsically at odds with reason. Ramachandran argues that the
brain resists coincidences because they are unreasonable, but coinci-
dences also possess an allure that draws us to what reason apparently
can’t explain—their power to attract our attention seems undeniable.
There is no attraction, for example, in the statement that Thomas Jefferson
died in the same year as the minor German poet Johann Voss. Many
people find it amazing, however, that Jefferson died in the same year as
John Adams: both were presidents, both were founding f athers of the
United States, and both died not only in the same year but on the same
day. That day, in fact, was July 4, 1826, the fiftieth anniversary of the
signing of the Declaration of Independence. Such radical strangeness is
what generates allure and wonder. The rational mind d oesn’t like what it
hears—the improbabilities seem almost monstrous. So our internal stat-
istician marshals all its analytical powers to argue that the strange improb-
able happening is no more than a blip on the screen, a pesky, meaning-
less, improbable anomaly. And yet. And yet. It emerges, like the Black
Swan, from beyond the dome of the little hat that we place atop the world
of facts.
Coincidental events, to the distress of reason, are a regular feature in
the literature on identical twins. It is not uncommon to read reports of
telepathic episodes when, to cite one instance, an identical twin skiing
in the Alps falls and breaks his left leg while the other identical twin,
skiing on a different trail, falls at the same time and breaks the same bone
in his left leg.28 Statistical analysis shows that such rare events prove
more common when identical twins are raised together or in close prox-
imity, compared with identical twins separated at birth. Most scien-

tists discount such inconclusive data as no more than what information
theorists call noise—irrelevant, beneath regard. We notice such events,
they argue, only because we do not notice the millions of occasions
when identical twins fail to break their left legs simult aneously while
skiing. In The Signal and the Noise (2012), statistician and master of
prediction Nate Silver argues that the best forecasters, t hose who most
accurately separate signal from noise, possess a strong grasp of proba-
bilities and pay close attention to detail. This is exactly what reasonable
people would expect. Silver adds, however, that the best forecasters also
maintain a deep appreciation of uncertainties.29
Medical eros can offer to medical logos an appreciation of illness as a
condition lived in a state of uncertainties. Uncertainties and improbabil-
ities, like coincidences, may distress the rational mind, but they also
evoke, for people not wholly given over to reason and to statistics, the ex-
perience of a strangeness embedded within the everyday. Many patients
simply do not share the commitment to evidence and reason that is so
basic to medical logos. Patients now regularly demonstrate their indepen
dence, or their open resistance to biomedicine, by paying large out-of-
pocket sums for unproven therapies.30 P. T. Barnum had a word (“sucker”)
that he used to describe p eople whom he regarded as gullible. Gullibility,
however, is not the best explanation for what moves patients to explore
complementary and alternative therapies. Public desire for such therapies
is significant enough that in 1998 the usually slow-footed United States
Congress established the National Center for Complementary and Alter-
native Medicine—later renamed the National Center for Alternative and
Integrative Health—with a mandate to explore nontraditional approaches
to health and wellness that, it conceded, “the public is using, often without
the benefit of rigorous scientific study.”31
Sceptics might think that legislation creating the NCCAM and NCAIH
was designed mainly to rein in demand for unproven therapies, by
demystifying their appeal. It certainly identifies the molecular gaze and
scientific biomedicine as the arbiters of all therapeutic value. P eople
meanwhile continue to vote with their wallets. Data from a 2007 survey
show that 83 million Americans spent $33.9 billion in annual out-of-pocket
costs for complementary and alternative therapies—some 1.5 percent
214 T he D ilemmas
of total health-care expenditures.32 Many patients who pay for unproven

therapies continue to consult their primary physicians, without telling
their physicians about the parallel nonallopathic health care. Perhaps
such patients were quietly and privately negotiating their personal alli-
ances between medical logos and medical eros. What moved them to
make substantial cash outlays in nontraditional care was surely less statis-
tical reason (or a calculation of probabilities) than the individual psycho-
dynamics of hope and desire.
One-t hird of the U.S. population notices coincidences with “some
frequency” and tends to make important decisions based on coincidental
events that they interpret as signs.33 Is such attentiveness unreasonable?
In retrospect, in the early stages of Ruth’s illness, I missed all the
signs. Or, worse, dismissed them. I reasoned that they were meaningless
blips. I reasoned that Ruth was simply being, in her own delightful ways,
not normal. Yes, I had noticed the unusual displays of temper, which
simply made me angry in return—another way of not paying attention.
Ruth said at times that her brain felt “fuzzy,” but I didn’t have a clue what
to make of the statement. I passed off such episodes as random events
that were not worth noticing. Ruth did seek medical assistance, and her
doctors prescribed antidepressants, which simply added sexual dys-
function as a predictable side effect. I don’t fault her physicians; they had
no reason to suspect Alzheimer’s disease in a healthy woman in her mid-
fifties who was holding down a professional job while working at night
on her doctoral dissertation. Even if they had suspected, they had no
treatments to offer. The Black Swan strikes out of the blue, and the New
Mexico sky overhead looked cloudless.
Probabilistic thinking, I’ve decided, can actively impair our ability to
recognize patterns or even the elements of patterns when the pattern is
unfamiliar, incomplete, or bizarre. I would have done far better for Ruth
if I had attended carefully to improbabilities. The signs w ere there, in ret-
rospect, including one truly serious domestic trauma, but in truth I
simply missed them. I not only failed to connect the dots, but I failed to
recognize the dots. In short, given a mind-set keyed to probabilities, I re-
garded the evidence as anomalies, or I passed it off as coincidence. The
dots were fragmentary, episodic, and low profile, certainly nothing as
attention-grabbing as Adams and Jefferson both d ying on the fiftieth an-
niversary of the Declaration of Independence. But the dots were visible,

if only I hadn’t discounted them, if only I had attended to singularities, if
only I hadn’t blocked the allure of strangeness. If only: the lament of the
caregiver immersed in a strange, wild sea of improbabilities.
Improbabilities, as I now believe, w ere a prominent feature of Ruth’s
illness. The strangeness was not simply bizarre but statistically inexpli-
cable. With my focus on reason and with my ignorance of the Black Swan,
I simply didn’t recognize the hard facts right before my eyes. I saw only
gradual, minor changes in behavior that failed to add up, as far as I could
calculate, to a significant conclusion. I blended them into the crowd of
slightly odd or edgy events that pass for daily living. Meanwhile, the Black
Swan was overhead, steadily circling.
The Black Swan, as I might add to Taleb’s account, strikes not only in
sudden spectacular calamities but also in slow-motion unravelings, like
the almost invisible day-by-day m ental attrition that often marks Alzheim-
er’s disease. Ruth’s illness, as it gradually eroded her once powerful
reason-based, fact-driven, probabilistic powers of decision making, for a
time put us both in the same semiblinded position, blind on blind. It also
eroded her power to resist the illness. I have met highly successful people
who say that they would commit suicide rather than continue to live with
Alzheimer’s disease. Well, on which day? Alzheimer’s disease, in eroding
the power to choose, takes away even the power to choose to end your
own life. Suicide, if it is more than a sudden impulse, requires a firm de-
cision. For William Styron, it required elaborate, ritualized prepara-
tions. Alzheimer’s disease wholly unraveled Ruth’s decision-making
power.
Brain damage showed me that I had much to learn. I learned that it
didn’t matter if Ruth wanted to wear six blouses. So what? It didn’t matter
if it took Ruth forty-five minutes instead of five to sort through her closet
in the morning. (I learned to change my schedule to wait until she was
finished.) I learned that it didn’t matter if the discarded clothes were left
scattered all over the bedroom. (I’d pick them up l ater.) “If I must drool,”
writes Jean-Do Bauby from within locked-in syndrome, “I may as well
drool on cashmere.”34 Illness teaches acceptance. Medical logos deals with
uncertainties by utilizing its chosen tools of reason, statistics, and prob-
abilities; medical eros mostly just plunges right in to not-k nowing. If
216 T he D ilemmas
desire says to drool on cashmere, then drool on cashmere. If desire says

to wear six blouses, then go right ahead. Desire, as we know, can serve us
poorly, but it also can serve us well, especially in calamities when reason
offers little beyond a calculus for adding up the awful costs. At best, de-
sire offers the insights and feel of full-body immersion in a strange realm
of alternate truths, a realm of improbabilities that lovers, too, know well
and that they sometimes navigate successfully. “In m atters of the heart,”
as the Swiss-born French novelist Madame de Staël (1766–1817) wrote
very wisely, “nothing is true except the improbable.”35
Nebulous F
actors: Flash! Bam! Alakazam!
Probable improbabilities is an oxymoron, like hot ice, offering a koan-like
poetic challenge to prose logic. In his authoritative studies, the sociolo-
gist and organizational theorist Charles Perrow prefers the phrase “normal
accidents.”36 He means that today we have created systems so complex,
so interactive, and so open to catastrophe—think of a space shuttle
launch—that “we cannot anticipate all the possible interactions or the in-
evitable failures.” If such failure is inevitable, it constitutes in Perrow’s
view a “normal” risk. We cannot exclude the Black Swan from our in-
creasingly complex and interactive systems, both biological and social,
and thus its improbable assaults would seem to constitute, in effect, a
normal catastrophe.
Terrorist killings happen now with such frequency as to suggest that
we have entered a new era of normal catastrophe. What constitutes the
norm is of course partly a m atter of perspective. I experienced a sudden
heart attack as an improbable catastrophe, while to biomedicine it was just
a normal night in the Darwin emergency department. The cardiac care
unit is already staffed, supplied, and set to receive a new patient. I am a
direct beneficiary of this statistic-based, data-driven rationality that pre-
dicts that someone in, say, Darwin, Australia, will experience a heart at-
tack, and it just happened to be me. Still, normal can be a lot weirder
than we normally assume. The near million heart attacks annually in the
United States include many s ilent or unrecognized heart attacks. 37 We
never see the Black Swan coming, and sometimes we d on’t even recog-
nize it when it arrives.
The practical problem facing medical logos involves the paradox of pre-
paring for risks that are not only unknown but also unknowable. The
risk management department in medical centers is usually staffed by
lawyers hired to protect the institution against the predictable risk of
malpractice suits. Risks in biomedicine, however, are everywhere, and
sometimes probabilities and predictions can get in the way. One lone,
smart, infectious disease specialist figured out, at the last minute, that the
life-t hreatening crisis that brought a friend of mine to the hospital had
little to do with complications from chemotherapy. What had put her per-
ilously close to death? Ehrlichiosis. In 2010 this tick-borne bacterial in-
fection had an annual incidence of 2.5 cases per million, but it can prove
fatal in patients with compromised immune systems.38 For my friend, the
hoofbeats did not mean h orses or even zebras—the culprit, most likely,
was an eight-legged insect the size of a baby aspirin. The two tiny brims
of the bell-shaped curve hide dangers and improbabilities far worse than
the brown dog tick. Oedipus, who fled Thebes to elude the prophecy that
he would kill his f ather, kills a stranger at the crossroads—who is, of
course, his f ather in disguise. Fate? Coincidence? Noise? Why, I keep
wondering even now, did I purchase that medical insurance at the last
minute for my Australian adventure?
The practical problem I faced was how to get out of the Darwin car-
diac care unit. Once black-swanned, if I may put it that way, I discovered
the strange and invisible l aser beams of officialdom that crisscrossed my
path like a museum security system. It was a minimum security system—I
wasn’t in chains, after all—but I wasn’t quite free either. We patients, it
turns out, are never entirely free agents, not once we enter the medical
system, no more than the physicians are, for whom hospital privileges are
not automatic. My exit was not automatic. Only a required angiogram and
echo-stress test would determine whether I would receive official permis-
sion to fly home. If I failed the tests, the Australian medical system would
send me, at my expense, four hours south by plane for a five-day stent pro-
cedure, or possibly for an even longer coronary bypass operation. Or, if
I failed but they deemed me stable enough to fly, they would first fly a
nurse from Los Angeles to accompany me home, again at my expense. It
was carefully explained that if I departed without permission, I would be
charged the full cost of diverting a jumbo jet should my heart condition
218 T he D ilemmas
require an emergency turnaround. Swimming home seemed a preferable

choice of ruin. I soon realized that I was caught up in a l ittle melodrama
of soft biopower from which not even my good-luck medical insurance—its
upper limit fast r unning out—conferred reliable protection.
Eros likes to find or invent a transgressive comic side, especially when
logos is firmly in control. I wore dark glasses on the operating t able for
the angiogram, determined (if need be) to go out cool, and I ran the
treadmill test in gym shorts, invoking Yankee gods of sport and fitness.
Happily, I won my official release, despite the questionable style choices,
escaping to the airport within an hour, en route to Sydney and then to
Los Angeles. My seatmate heard an audible sigh—no turnaround—when
our plane passed midpoint across the Pacific.
The inescapable strangeness of the everyday is in many ways just too
unscientific for medical logos. Medical logos has an official acronym,
MUS, for medically unexplained symptoms, but it has no acronym for
medically unexplained cures—for enigmatic, improbable, astonishing re-
coveries. Remissions from cancer occur in one out of e very 60,000 to
100,000 patients, although the true rate is likely higher due to underre-
porting.39 Andrew Weill, the telegenic founder of Integrative Medicine,
includes in his book Spontaneous Healing (1995) numerous reports that
count as medically unexplained cures, and Jacalyn Duffin scoured the
Vatican Secret Archives examining the records of some 1,400 unexplained
recoveries.40 Should we ignore them, or pretend that they d on’t exist?
Theology calls them miracles, defined as an event beyond human or
natural cause, but unexplained cures do not require belief in a super
natural power, only a belief in the limits of probabilistic thinking and in
the positive Black Swans tucked away, lurking, in the brims of the bell-
shaped curve.
Medical eros, because it is at home with improbabilities, might ask
medical logos to explain one particularly awkward statistical dilemma.
Biomedicine specializes in best-practice guidelines, it circulates the latest
facts almost instantaneously, and medical staffs are similarly well
educated. Reason predicts, then, that all specialized treatment centers
should have roughly similar outcomes. But they d on’t. Why not? The
surgeon and author Atul Gawande posed this question after examining
specialized treatment centers for cystic fibrosis. He found that, yes, out-
comes for most centers fell into a broad midrange dome, as predicted
by the bell-shaped curve. A few treatment centers, however, showed far
better results, some truly exceptional. “We are used to thinking,” Ga-
wande writes, “that a doctor’s ability depends mainly on science and
skill.” Science and skill, he allows, may constitute “the easiest parts” of
medical care, but they don’t guarantee good results. “Even doctors with
great knowledge and technical skill,” he continues, puzzled, “can have
mediocre results; more nebulous factors like aggressiveness and consis-
tency and ingenuity can matter enormously.”41
Nebulous factors. We are thrust back into dilemmas of the not-k nown.
Is t here a loophole or improbable role here for medical eros? For desire?
It turns out that the physicians in Gawande’s study who got consistently
exceptional outcomes were, as he says, unusually passionate about their
work and unusually devoted to their patients. “I was walking along
minding my business,” as the old song goes, “When love came and hit
me in the eye / Flash! bam! alakazam! / Out of an orange-colored sky.”42
Nebulous factors? The phrase offers a weird placeholder for nonrational,
alakazam-like, probability-busting forces that so often seem linked with
individual desire, passion, and devotion: the marks of eros. These are the
unruly forces that lie just beyond the reach of reason, beyond algorithms
and statistical data, where empirical research, bench science, and the en-
tire evidence-based armamentarium of medical logos cannot yet find the
means to reduce them, once and for all, to stable, compliant objects of
knowledge.
Chapter Eight
Light as Environment: How

Not to Love Nature
All-beauteous Nature! By thy boundless charms
Oppressed, O where shall I begin thy praise,
Where turn th’ecstatic eye, how ease my breast
That pants with wild astonishment and love!
Joseph Warton, “The Enthusiast, Or
The Lover of Nature” (1744)
O nce upon a time—well, in 1744 to be exact—it was possible to fall

in love with nature. Love affairs do not always end well, however,
and desire can lead us badly astray. Unhappy endings and erroneous
choices, so basic to eros, dominate entertainment news sites when the par-
ticipants are celebrities, but it also plays out—in quieter ways, on a larger
scale, with truly devastating consequences—in the h uman relationship
with nature. The figure of Mother Nature can be traced as far back as
Linear B syllabic script, an early form of writing that survives from some
twelve or thirteen centuries BCE, and nature (a nurturing, fertile, ma-
ternal force) has long been revered as a goddess and personified as fe-
male. Goddesses can turn vengeful, however, as Psyche learned the hard
220
L I G H T A S E N V I R O N M E N T : H O W N O T T O L O V E N AT U R E 221
way, and even earth mothers can breed monster storms. A 2016 headline
in the West Virginia Lafayette Tribune reports, “Thousands Affected by
‘Once-in-a-Millennium’ Flooding.”1 Isn’t it at least somewhat surprising,
given such increasingly regular disastrous reports, that so many people
(from weekend gardeners to wilderness trekkers) still profess an unalter-
able love of nature?
Nature, as a concept and even as a locus of human experience, is in
rapid retreat. It requires entire books to describe the changing philosoph-
ical and cultural ideas about the natural world in different societies and
eras, but the familiar attribution of gender to the natural world took a
significant turn at the dawn of the scientific revolution, when Adam’s
biblical “dominion” over the animals became a license for portraying hu-
mankind, in the language of Descartes, as the “masters and possessors”
of nature.2 The ancient gendered figure of nature as female, in a newly
industrialized culture, was easily enlisted to support a transformative
geo-sexual politics in which dominion turned into male-domination and
male-domination turned into exploitation. The first steam engines were
already pumping w ater from British mines—t he dark urban mills and
factories humming—when the young Eng lish poet Joseph Warton,
barely turned twenty, published “The Enthusiast, Or The Lover of Na-
ture” (1744). The poem speaks in the voice of a paramour who addresses
nature as his beloved, a beautiful woman whose “charms” enrapture
him with ecstasy and love. The love professed by Warton’s enthusiast is
no dried-up metaphor. It indicates, through its use of traditional romantic
language in order to address nature as his beloved, the arrival of an inno-
vative, full-blooded erotic passion.
Fast-forward 250 years. “Earth. Rock. Desert. I am walking barefoot
on sandstone, flesh responding to flesh. It is hot, so hot the rock threatens
to burn through the calloused soles of my feet. I must quicken my pace,
paying attention to where I step.” So begins Desert Quartet: An Erotic
Landscape (1995), in which Terry Tempest Williams—writer, naturalist,
and advocate for women’s health—describes her solitary trek into the
remote canyons of southern Utah.3 Paying careful attention to where she
steps, for Williams, is more than a sound strategy for traveling barefoot
over hot sandstone. A heightened sensuous awareness of the desert envi-
ronment belongs also to an elemental journey that strips away the buffers
222 T he D ilemmas
and filters that normally separate us from the natural world, exposing
a neglected or hidden truth (that we ignore in our preoccupations and
social roles) about the ultimately loving human relationship to nature.
Earth, air, sea, and sky are not just classical elements, more than occa-
sional objects of affection: they call to us, permanently, in too often un-
heard siren songs of the spirit. As Williams writes elsewhere, in a pas-
sage that helps explain her barefoot hike, “It is time for us to take off our
masks, to step out from behind our personas—whatever they might be:
educators, activists, biologists, geologists, writers, farmers, ranchers,
and bureaucrats—a nd admit we are lovers, engaged in an erotics of
place.”4
An erotics of place, as it turns out, cannot entirely disentangle us from
the dilemmas implicit in eros. The hot desert sandstone soon yields to a
contrasting sensation as Williams finally enters a cleft in the canyon wall
and leans her body against the dark, cool stone. Through an overhead
gap she momentarily gazes up at a slice of blue sky, but then looks away.
“I surrender. I close my eyes,” she recounts in a prelude to sensual dis-
solve. “The arousal of my breath rises in me like music, like love, as the
possessive muscles between my legs tighten and release. I come to the rock
in a moment of stillness, giving and receiving, where there is no partition
between my body and the body of Earth.”5 This amorous contact between
earth and flesh reflects larger connections that Williams explores be-
tween the natural and human spheres, which include her marriage and
her Mormon faith. It is her closed eyes, however, that hold my attention.
Darkness is the native ground of eros—whose mysteries Psyche violates
with a drop of hot candle wax—and, while I admire Williams’s commit-
ment to a passionate, nonexploitative relation to the earth, I am concerned
by what an erotics of place may ignore, what troubles lie as if embedded in
the hot sandstone or shut out by her closed eyes. Place is often politically
reconfigured as territory, homeland, or hood, fought over in rival claims
of ownership. People daily profess a love of nature, but nature is no longer
nature. Some scholars drop the term nature altogether in preference for
talk of environments, webs, or ecosystems; and, while we continue to say
we love nature, the relationship seems nonreciprocal. Does nature really
love us? Most important: above and beyond Williams’s barefoot, elemental,
erotic, desert journey looms the ever-burning sun.
Light Lite: A Thumbnail Guide to Illumination

The creation of light could be said to initiate the entire Judeo-Christian
tradition and to unlock a world of troubles. “Let t here be light, and t here
was light.” Light and the divine Word, as theologians never tire of ex-
plaining, emerge together and united: “And God called the light Day,
and the darkness he called Night. And the evening and the morning were
the first day” (Genesis 1:3–5). Modern sunbathers soaking up rays at the
beach perhaps seldom reflect that light once was considered sacred. The
first-day scene of creation in which God utters the fiat lux of Genesis is, at
least to a nonbiblical mind, eerily unimaginable: there is no earth and no
sun. The sun appears only on day four. The light of fiat lux thus shines
into an utter void. The biblical mentality that could keep light and the
sun in separate categories in effect imagined a cosmos in which light
abides directly with God. Light is the direct emanation of Deity.
The holiness of light, however, is not unique to Hebrew and Christian
scriptures. Ancient Egyptians worshipped the sun as the eye of the mighty
god Ra, and light thus constitutes their direct, unmediated contact with
sacred power. At the first light of day, obelisks tipped with gold suddenly
dazzle with divine presence. Its builders constructed the temple at Abu
Simbel so that, twice yearly, a shaft of light penetrates two hundred feet
through the open door to illuminate a statue of the pharaoh Rameses II:
a god-k ing whose image stands between the sun gods Ra and Amnon.6 A
divine architecture of light extends to medieval cathedrals, with their dim
interior spaces designed to permit strategic bursts of light and color.7 Early
Church fathers made the theological foundation of such feats explicit in
the formula God is Light. Light, for centuries, carries a trace or faint im-
print of its sacred origin.
The subsequent secular history of light is no less full of mysteries. “For
the rest of my life,” Albert Einstein is reported as saying, “I w ill reflect
on what light is!”8 Einstein makes me feel a little better that I don’t really
understand light, even after much thought and many books, not in the
way I understand other natural phenomena such as rain or snow. The near
immateriality of light—no more than a photon in mass—makes a pool of
light far different from a pool of water or a snowball. One physicist describes
the notorious wave / particle duality of light in an elegant aphorism:
224 T he D ilemmas
“light travels as a wave but departs and arrives as a particle.”9 What can
depart and arrive even mean, I wonder, when a photon of light circles
the earth seven times each second? Color is equally puzzling. Do colors exist
in the pitch dark, or are they a function of exposure to light? Sir Isaac
Newton’s prism experiment—dividing white sunlight into its spectrum
of multiple colors—set off a whole new poetics of light (as well as a running
quarrel between scientists and poets). What is light? What is light made
of? What are its possible relations to health and illness? Light, although
employed as a nearly universal image of mental illumination and of spiri-
tual enlightenment, makes it very easy to feel confused.
Physicists explain that light is electromagnetic radiation, which unfor-
tunately doesn’t help me much.10 We apparently live within surrounding
fields of radiation mostly without recognizing it, like fish in water. We
don’t recognize it largely because most radiation is invisible, although it
carries our favorite telev ision shows, cell phone conversations, or just
random impulses from deep space. Natural light, as radiation continu-
ously pulsing from the sun, constitutes a specific band range of the electro-
magnetic spectrum. Visible light, the light we see or see with, is bundled
closely on this spectrum with two flanking but invisible bands of radia-
tion, infrared light and ultraviolet light, so that we generally refer to all
three together when nonscientists talk about light.
Infrared light we perceive as heat. The earth absorbs infrared light
during the day, warming the air, seas, and soil; at night, the earth radi-
ates infrared light back into space, cooling soil, seas, and air. As a health
hazard, the same infrared beams produce both heat exhaustion and
sunstroke. Ultraviolet light, its partner, is the specific band of the elec-
tromagnetic spectrum responsible for the metabolic changes in the skin
that produce suntans. It penetrates even dense clouds, which explains
why we can get third-degree burns on a cloudy day. Light, then, how-
ever puzzling its physics, already merits notice b ecause inattentiveness
to infrared and to ultraviolet light can send us to the hospital.
Light holds a firm place in traditions where spiritual well-being pro-
vides a segue or passage to individual health and to social enlightenment.
The English word health shares a root with the word holiness. “There is
a light within a man of light,” says Jesus in the Gnostic Gospel of Thomas,
“and it lights up the whole world.”11 Oil-burning “slipper lamps” used by
Christians in Palestine during the Byzantine period (AD 313–638) com-

monly bear a Greek inscription that reads, “The light of Christ shines
for all,” a statement of social as well as spiritual inclusion.12 From medi-
eval mystics to patristic scholars, religious truth often takes the figure of
an intense light with direct and indirect impact on the social world. Prot-
estant dissenters in seventeenth- century England, for example, ex-
pressed the directness of their personal relation to God through the con-
cept of “inner light”: an enthusiasm, or, god-within, that supported
radical social and political change (up to and including the execution of
Charles I). Warton’s enthusiast appropriates this same religious lan-
guage to spiritualize, mildly, his new passion for nature. Deists and
philosophers in the European Enlightenment chose light as the em-
blem of universal reason, which they put immediately into the service of
social reform, while the nineteenth- century colonial meta phor of
carrying light into dark places soon served as a pretext for var iet ies of
mercantile exploitation. Light, in short, evoked values so crucial that to
forget light was like forgetting goodness, truth, or money.
Our distinctive modern forgetting owes much to the industrialization
of light in the nineteenth c entury, an event of historic importance.13 A
traditional Navajo dwelling, for example, always faces east, and a tradi-
tional Navajo w oman begins each day with ritual homage to the sun. Our
inattentiveness to light, except as a convenience, indicates how far we or
ganize our lives around different principles. Light now floods our houses
at the flick of a switch, night or day, following cables back to our indis-
pensable power companies, which sell us light, or at least the electric cur-
rent that produces light, as an industrial product. With light on demand,
we no longer depend on natural cycles but structure our time as we please.
Night is now an extension of day. Casinos, lit artificially and open for busi-
ness at all hours, deliberately erase the natural cycles of darkness and light,
much like hospitals, operating 24/7 in a field of nonstop, human-made
illumination where it never i sn’t light.
We did not simply forget about light; we came to live within it and to
take it for granted. The new industrial capacity to mass-produce light daz-
zled nineteenth-century consumers, for whom improvements in lighting
were a visible symbol of progress, as gaslights in the 1820s and electric
bulbs in the 1880s replaced smoky oil lamps. Soon fireplaces and candles
226 T he D ilemmas
joined other relics of a nostalgic past, transformed from necessities into

luxuries, while incandescent streetlamps remade Paris into the world-
famous “City of Light.”
Meanwhile, a postt heological imagination found new uses for light.
Dawn and sunset for Thoreau are not simply natural facts but summa-
rizing symbols of spiritual progress, while a century later military planners
gave light a new mission, transformed into l aser-weapon systems. Light
as weapon returns us to the field of health and illness: the nuclear blasts
over Hiroshima and Nagasaki lit up the skies like a false sun, shredding
flesh and raining down lethal radiation sickness, forever stripping light
of its holiness, while the less-well-remembered 1945 firebombing of
Tokyo incinerated some 100,000 people. Still, we remain creatures of
light, however negligent. The same force that can destroy incoming mis-
siles also illuminates urban sidewalks at night and floods vacant parking
lots with safety.
During the seven years when I lived in New Mexico, in a pueblo-style
adobe house on a bluff facing east, every morning I watched the sun
emerge with a sudden rush over the topmost peaks of the Sandia Moun-
tains. Light organized my day not with prayer but with sunblock, dark
glasses, and a wide-brimmed western hat worn for skin protection. The
sun was a daily adversary, stripping the varnish from my woodwork,
bleaching the paint on my car, turning my morning drive into a visor-
flipping struggle. I learned that light can blind you and kill you if you
wander lost too long, unprotected, in the desert sun. Without a passion
for barefoot hikes, I live instead acclimated to light as a commodity, avail-
able everywhere, on demand and in excess, like Times Square blazing
with colorful high-definition noontime ads. I tend to like all-night diners,
round-t he-clock malls, strobe lights, and Jumbotrons pumping up the
wattage at rock concerts. Then I remember Georgia O’Keeffe’s famous
“Cow Skull with Calico Roses” (1932), which was once featured as cover
art for the journal Emerging Infectious Diseases. Nature is roses but also
microbes, pathogens, and desiccated cow skulls. Is all this surplus light—
somewhere a television always on—really what we desire? Or, I begin to
wonder, is an unseen force perhaps desiring it for us—desiring us to de-
sire it, even to our lasting harm?
Medical Logos and the Biology of Light

Light is the basis of all life on earth. Water, air, soil are necessary, of course,
but without light, the blue-green planet we call home is no more than an
icy midsize spinning space cinder. Light, as medical logos and the mo-
lecular gaze can confirm, stimulates the chloroplasts in green plants to
drive the photosynthetic processes on which all earthly life depends.
Sightless fish in pitch-black caves, living in total darkness, cannot survive
without the light-dependent food chain seeding the water with nutrients,
nor can the 285 species of subterranean mammals who, like moles, live
in lightless burrows.14 The earth’s primordial atmosphere of carbon
dioxide could not sustain h uman life u ntil photosynthesis generated the
oxygen on which we continue to depend.
Much as green plants transform ultraviolet sunlight into the stored en-
ergy at the base of the food pyramid, humans convert this light-based
stored energy into power for health and for healthy function. What would
happen in a total absence of light? No nighttime stars, no fireflies, no
laptop glow, no visual directions up or down: total disorientation for the
last person standing on a planet otherwise officially declared dead. Driving
the last miles home, in the artificial tunnel of my headlamps, I feel a sat-
isfying relief as I turn into my driveway and the security lights automati-
cally snap on. The biology of light is crucial not only b ecause light is what
makes earth habitable for humans but also because light, among its con-
tributions, is inseparably linked to our well-being—and to our illnesses.
Consider rickets. Light turned out to be the secret turning point in the
flesh-a nd-blood mystery of a crippling childhood bone disease. The
disease arrived in Europe with the suddenness of plague. Rickets, first
described by Francis Glisson in De Rachitide (1650), ravaged the grim
overcrowded factory towns of preindustrial England with such speed
and ferocity that it was called “the English disease.” It was so common
that it spawned an all-purpose slang term for debilitation: rickety.
Rickets attacked c hildren in the first years of life, softening and twisting
the bones, leaving their bodies sickly and disabled. As late as 1922, the
same year when T. S. Eliot published “The Waste Land,” London phy-
sician J. Lawson Dick portrayed the typical rachitic child as dull and heavy,
228 T he D ilemmas
suffering from malformed bones, wasted muscles, and marked by defor-

mities of the skull, spine, and pelvis. “The disease is partially recovered
from,” Dick wrote, “but there is apt to be a permanent arrest or perversion
of the growth and development of the brain itself.” Rickets, he wrote, is
“the commonest disease of c hildren in our large towns, and at the present
day it is probably the most serious factor interfering with the efficiency of
the nation.”15 Like AIDS in Africa, rickets was a disease that not only
afflicted individuals but could also impair whole regions and countries.
Nobody knew what caused rickets. A few clues generated controver-
sial theories. Some theories focused on climate, bad housing, and socio-
economic status—because rickets took such a high toll among the urban
working-class poor. The disease is a general product of industrialism,
Dick concluded, adding that it was as difficult to imagine a town without
slums as to imagine children f ree from the threat of rickets. But why?
Other theorists invoked heritable disorders, infectious disease, or nutri-
tional deficiency. An experiment in 1918 showed that puppies developed
rickets on diets lacking a fat-soluble nutrient described, nebulously, as the
“antirachitic factor.” Not every child with a fat-poor diet, however, got
rickets. Could the culprit be endocrine glands? Lack of exercise? Rickets
as an enigmatic crippling disease of childhood evoked the anxieties as-
sociated in 1950s America with polio.
Then—thanks to medical logos—a breakthrough! Between 1922 and
1930, researchers in E ngland and in America showed that the cause of
rickets is a deficiency of vitamin D. Vitamin D was the vague “antirachitic
factor” that had mysteriously protected Icelanders and Greenlanders,
who, unlike the light-deprived urban poor, ate a diet rich in cod. Cod liver
oil is a very good source of vitamin D, but so, too, researchers soon dem-
onstrated, is sunlight.
The biology underlying such straightforward observations took years
to understand, earning at least one Nobel Prize in chemistry, and we now
know that human skin produces vitamin D in the presence of ultraviolet
light. Sunlight too weak in ultraviolet rays may not produce the neces-
sary quantities of vitamin D, and the famous pea-soup smog in Sherlock
Holmes’s industrial London—so thick and toxic that in 1952 it killed
12,000 Londoners in just four days—guaranteed a deficiency in ultravi-
olet light. The mud, rain, and snow of English winters also meant that
infants born in October likely spent their first six months in dark rooms.
Once doctors understood the biology of rickets, mothers in light-poor
slums—and elsewhere—were quick to grasp the extra protection offered
by fish-liver oils. Good access to the sun, however, still provides an inex-
pensive source of vitamin D, and rickets thus offers a striking instance of
how human health is linked directly to the biology of light.16
Light, as medical logos soon discovered, is responsible for far more
than the healthy bones of infants and c hildren. Rickets showed that
humans evolved with a biological need for light. Specialized skin cells,
called melanocytes, both absorb ultraviolet radiation and produce the
pigmented substance (melanin) that protects the skin from excessive expo-
sure. Moreover, inherited differences in the production of melanocytes
are largely responsible for differences in skin color.17 Skin color, of course,
is related to ongoing social conflict, often stoked by passions over ethnicity
or race. The biology of light indirectly provides a basis for color-based
racial stereotypes responsible both for incalculable injuries and deaths
and also for quite well-documented and measura ble disparities in mi-
nority health care, exacerbated by huge disparities in income. (A more
equitable health-care system may evolve when societies understand that
there is more genetic diversity within so-called races than across them.)18
The social and political attitudes that result in substandard health care
for black patients in the United States, for example, begin, although it is
only a beginning, with evolutionary melanocyte responses to a light-
drenched planet that completes one full rotation on its axis some 365.26
times in its annual twelve-month orbit around the sun.
Circadian rhythm is the technical name for biological variations that
repeat in twenty-four hour cycles. Although scientists now think that the
human cycle is closer to twenty-five hours, h umans and hamsters alike
share internal circadian clocks timed to the earth’s cycles of light and
darkness, a primal rhythm that determines the nighttime hunting of lions
as well as the crescendo of early morning bird calls. Proper functioning
of t hese internal biological clocks is essential to health, and disruption of
our circadian rhythms can result in various illnesses.19
The two main properties of circadian rhythms that affect health and
illness are simply stated. They are generated within the body, and, ordi-
narily, they synchronize to light-dark cycles by means of photoreceptors.20
230 T he D ilemmas
This bodily adaptation is significant for health because circadian rhythms

prove important to such basic biological processes as aging, mental per
formance, blood pressure, kidney excretion, immune functions, cell
growth, cardiovascular activity, and brain neurotransmission.21 Not all
human biological cycles are circadian—there are seven-day and monthly
cycles, too—but circadian rhythms are now well recognized, and doctors
remain on alert for disorders of the circadian timing system. For example,
light triggers the production of melatonin, a hormone affecting crucial
health-related processes from ovulation to sleep.22 Melatonin levels, more-
over, contribute to a variety of circadian rhythm disorders, such as jet
lag.23 NASA shift-workers, compared with subjects in a control group, re-
ported better sleep, better performance, and better physical and emo-
tional well-being after receiving a week of light treatments.24 Astronauts
on a Mars voyage would doubtless approve if the shift-workers at mission
control slipped in a few extra light treatments.
Light, in its circadian patterns, may also underlie biological processes
implicated in emotional and psychological well-being. A seasonal pattern
for depressive episodes, quickly publicized as seasonal affective disorder,
with the catchy acronym SAD, made news starting in 1984.25 Circadian
rhythms keyed to seasonal alterations in light seemed a possible cause of
SAD, but a fter decades of research the data remain inconclusive and at
times contradictory.26 A 2013 review article in the American Journal of
Psychiatry offers what is proba bly a safe summary of the current state
of research: “A wide range of studies have demonstrated the efficacy of
light treatment for SAD and have minimized the possibility that light
treatment works by a placebo effect.”27 Mild seasonal diminishment of
mood and energy, as research shows, is common in the northern hemi
sphere, even among p eople who do not qualify for a diagnosis of major
depression.
One surprise: the antidepressant effects of light are not mediated solely
through photoreceptors in the eye. An organ-based, nonvisual system of
light-sensitive molecules—often involving a photoactive pigment called
melanopsin—also seems capable of driving the circadian system. Ruth,
raised in sunny Los Angeles, wilted during our winter sojourns in the
Midwest, when arctic air over Lake Michigan generated cloud-cover thick
as a mattress. Two sun-filled winter weeks in Key West had therapeutic
benefits. Outdoor bars, roaming chickens, and palm trees may augment
the health benefits of light, my informal research suggests. In a psychi-
atric inpatient unit, patients in sunny rooms had an average stay almost
three days shorter than did patients in nonsunny rooms.28 Light in mod-
erate doses somewhere with outdoor live bands is doubtless a fine all-
purpose tonic.
Medical logos has expressed enough interest in light to generate a new
subspecialty called photomedicine, which occupies the border between
basic science and clinical practice. Dermatologists, for example, use
ultraviolet light (especially UV-B) as therapy for a number of skin dis-
eases, including psoriasis and vitiligo. Meanwhile, light has indirectly
contributed to health care when concentrated in lasers. Lasers create a
monochromatic, intense, narrow beam of light that proves invaluable
in performing various quasi-medical tasks, from melting material for
dental fillings to bleaching tattoos, but their truly remarkable use lies in
surgery. With its power to seal off small blood vessels, the laser permits
surgery with almost no bleeding, which is especially advantageous for
tissues rich in blood vessels. It is also ideal for microsurgeries in areas
too confined or delicate for a scalpel, such as the throat or eye. In the
detached retina procedure, a laser can accomplish what a scalpel c an’t:
weld the retina back to the eyeball.29 Surgeons now use lasers together
with fiber-optic endoscopes to shine precision surgical light into the
once-total darkness of interior organs.
Light offers medical logos a medium for endlessly inventive uses, even
as the newest means to store and to transport medical records. Photons
are so far superior to electrons in carrying information that they have given
hole new medically-related discipline, photonics, which special-
rise to a w
izes in technologies that shoot laser-generated photons through glass-
lined fibers. Medical data whiz by at nearly the speed of light. Photonics
has recently joined forces with an even newer biotechnology, optogene
tics, which employs genes encoding light-sensitive proteins. The genes
(introduced into specific cells of a host organism) can then direct the syn-
thesis of the light-sensitive protein—providing an internal, organic, self-
replicating surveillance system for studying such multinetworked, elusive
human functions as memory and pain.30 Light, then, in ways unrelated
to environmental experiments with solar power, is emerging as a raw
232 T he D ilemmas
material that medical logos can inventively work up to employ in the ser
vice of health.
XP: Light Is Not Our Friend

Light, in its shiftiness, includes a potential for inflicting significant harm.
Periodic darkness, through its link with the circadian system, is as crucial
to health as light is, and too much light breeds irreparable damage. Re-
searchers at Leiden University Medical Center in the Netherlands
tracked the health of rats exposed to 24 weeks of continuous light and
compared them with a control group exposed to alternating 12-hour cy-
cles of light and darkness. The light-saturated rats showed not only re-
duced circadian rhythmicity but also reduced skeletal muscle function
and bone deterioration. They got fatter, had higher blood glucose levels,
and gave evidence of immune system damage. 31 If you are a rat, which
is as far as the Leiden research allows us to conclude, you will be far healthier
with periodic exposure to darkness. If you are a human being and sleep
in darkness, sleep “resets” brain connections crucial for memory and for
learning.32 For the unlucky few born with the genetic disorder xeroderma
pigmentosum, however, sleep and periodic darkness do not help. Expo-
sure to light leads ultimately to suffering and early death.
Xeroderma pigmentosum, or XP, is a rare genetic condition that, in its
awful damage, offers a haunting confirmation that evolution has gifted
us with built-in protections against light. Lacking these genetic protec-
tions, the skin of patients with XP is so sensitive to daylight that expo-
sure to the sun can cause life-threatening burns. Skin cancers often
begin before children reach age ten. Ultraviolet radiation leads to malig-
nant changes in the eye as mucous membranes dry out and eyelids at-
rophy.33 In extreme cases, parents keep c hildren sheltered from daylight
or, for rare outdoor excursions, bundle them up like mummies. Despite
such precautions, children with XP tend to die at an early age. While
rickets assures us that human health depends on light, especially during
childhood, XP tells us that our health depends not only on proper expo-
sure to light but also on genetic protections that prevent the damage
caused by excess light. Without the proper function of these protective
genes, children with XP who do not die early live impaired and painful
lives. Their fate serves as a grim reminder that—even with our current
genetic protections intact—humans will suffer irreparable damage if the
atmospheric shields that protect us from excessive light ever fail.
In the United States, XP counts as a Black Swan. The probability of
being born with XP is one in a million, sort of like the odds of finding
your soul mate. The genetic diversity within a mobile, multiethnic pop-
ulation makes XP about as worrisome as the odds of a major earthquake
occurring on the Hayward fault in the next fifty minutes. In southwest
Brazil, however, more than twenty p eople in the small sundried rural
community of Araras, population 800, suffer from XP. At age 38, Djalma
Antonio Jardim has undergone more than fifty surgeries to remove skin
tumors, not to mention the skin he lost as the disease eats away at his lips,
nose, and cheeks. About one in three individuals with XP w ill develop
progressive neurological abnormalities—seizures, hearing loss, difficulty
swallowing, poor coordination, loss of intellectual function—a nd such
problems tend to worsen over time.34 Gleice Francisca Machado, a village
teacher in Araras whose son has XP, says simply, “The sun is our biggest
enemy and those affected must change day for night in order to live longer.”
She adds, evoking our ancient kinship with the sun, “Unfortunately, that
is not possible.”35
XP is the extreme case that exposes what happens, almost beneath no-
tice, as the human body encounters sunlight. And it’s not only human
bodies: ultraviolet exposure damages the immune system of nonhuman
animals and even affects the mutation rate of plants. The everyday
human example of sun damage is, of course, skin cancer. 36 It may seem
odd that equatorial populations (despite the increased exposure to ul-
traviolet radiation) suffer far less skin cancer than do northern popula-
tions. The explanation is that, as protection, they evolved dark skin and
a surplus production of melanocytes. Northern populations, who have
a decreased exposure to sunlight, evolved pale skin that produces more
vitamin D, but at the cost of increased risk for skin cancers.
The atmospheric ozone layer offers us vital protection from solar
damage, and thus it caused deep concern when scientists discovered a mas-
sive hole opening up, annually, over both poles. This ozone depletion—due
largely to the use of industrial chlorofluorocarbons (CFCs)—occurs
when chlorine molecules come into contact with sunlight. Happily, climate
234 T he D ilemmas
scientists now say that the ozone layer is “healing”—t heir term—thanks
mainly to the phasing out of CFCs u nder the 1987 Montreal Protocol.37
Nations still affected by the ozone loss, particularly Australia, mean-
while have seen large increases in skin cancer. Both melanoma and non-
melanoma skin cancers are escalating worldwide. The most important
risk factor for nonmelanoma skin cancers is ultraviolet light exposure,
most often from the sun.38 Melanomas occur also in protected areas of the
body not exposed to the sun, such as the stomach, but the worldwide in-
creased rates of lethal cutaneous melanoma and alarming increases in the
rate of skin cancers raise important cultural as well as strictly medical is-
sues about sun-related illness. Medical logos mostly acts as the desig-
nated skin-cancer cleanup squad.
It is absurd to ask biomedicine to take on full responsibility for a di-
lemma whose source is in part cultural and environmental. Rickets and
XP remind us that h umans evolved in a taut relation with light. Medical
logos possesses the knowledge to intervene when the absence of light (as
in rickets) proves damaging or when the excess of light (as in skin cancer)
proves damaging, but such medical interventions often help individuals
without addressing the wider cultural issues b ehind such damage. If the
source of urban gunfire is cultural, not medical, then medicine with all
its technical skills and biochemical knowledge cannot address the problem
at its root. Medical logos, in this sense, can patch up the victims of
Chicago gun violence, but it is at present powerless to stop urban gang
warfare. H uman health is hard to dissociate from h uman desires. Bio-
medicine and medical eros need each other, they depend on each other,
and their ideal relationship may well resemble a dance of contraries.
Medical eros, in an ideal health-related dance of contraries, is well-
positioned to address the contributions that human desire makes to
the problems of light damage. Sun worship has changed its meaning and
its purpose since the time of the ancient Egyptians. Humans have not al-
ways lathered up with suntan oil for a day at the beach. Soaking up rays
in a thong is a distinctively modern, erotic relation to light. Modern
trends in fashion, often with an erotic subtext, celebrate the exposure of
athletic bodies in muscle shirts, cutoff jeans, and less. Three erudite
books discuss the relation of eros to sport, but without an interest in light,
even though Olympic competition originated outdoors, under the sun.
The far more than three learned discussions of eros and film usually ig-
nore the role of light, even though lighting is crucial for on-screen ambi-
ence as well as for the semidark erotic ambience of the cinema.39 If rickets
was the representative disease of the industrial age, when factory workers
raised sun-starved c hildren with soft, twisted bones, skin cancer may
be its counterpart for the postindustrial democratic age of the ozone hole
and the tank top.
Medical eros occupies a strategic position from which to reverse or mit-
igate damage directly or indirectly caused by h uman desire and wrapped
up in our own changed relation to light. Medical logos can suggest pre-
ventive strategies, such as large floppy hats; it can enlist its knowledge to
support treaties and regulations aimed to reduce damage to the ozone
layer. However, this is exactly the point, given all we have learned from
photomedicine and from the science of light, where medical logos needs
assistance from medical eros. What we need, in addition to floppy hats
and smart treaties, is a well-considered culture-wide redirection of desire.
Daisyworld: Light and Global Climate Change

Global climate change is for authorities ranging from Nobel laureates to
Pope Francis the most extraordinary dilemma that we confront in the
twenty-first century. Its impact will reach far into future generations. After
some initial skirmishing over how to name it, global climate change is now
securely locked into our political and journalistic lexicons, and the damage
is as well documented and alarming as seas without fish. (In the last fifty
years, fish species utilized by humans have declined by half.)40 We know
that humans are driving pelagic species into collapse through overfishing,
and the international scientific community agrees that humans, mainly
through burning carbon-based fuels, are warming the air, seas, and earth,
driving global climate change. Controversies muddy the issue of cause,
and the geological record shows fluctuation in world climate, as the earth
cycles in and out of ice ages with no humans present to add or subtract a
degree of temperature.
Healing in the ozone layer indicates that humans can undo and reverse
damage that h umans cause, if we accept responsibility. The alternative
is alarming. The World Wildlife Fund predicts that coral reefs w ill
236 T he D ilemmas
disappear by 2050 if sea temperatures continue to warm at current rates.

Authoritative forecasts of a 10-to 32-i nch rise in sea levels by 2100 w
ill
put Miami and New Orleans (as well as coastal villages in the devel-
oping world) u nder w ater.41 T hese are not Black Swans. They consti-
tute a slow-motion, approaching catastrophe that human desire can either
escalate in speed and scale or possibly reduce. Light and desire are two
key players in this high-r isk game of planetwide climate change, and
both are related to the prospects for h uman health and illness. A visit to
Daisyworld can offer some clarification.
Daisyworld is the optimistic theme-park name of a simplified computer
model that British geophysiologist James Lovelock constructed to
i llustrate how the earth—somewhat like a gigantic creature—m ight in-
corporate periodic climate change within a larger, fluctuating homeo-
stasis. Light, as an engine of global climate change, could stand as a
symbol or logo for Lovelock’s vision of planet Earth (constituted by
multiple interlocking ecosystems) that he introduced under the name
Gaia Theory. Lovelock’s Gaia Theory postulates that living organisms are
“tightly coupled” with the environment. In later revisions, he came to
describe Gaia—the earth with its tightly coupled living organisms, human
inhabitants, and interlocking ecosystems—as “a self-organizing super-
organism.”42 Although Lovelock does not single it out explicitly, light is
the central, indispensable feature that governs the self-organizing prop-
erties of Gaia. “The self-regulation of the system,” he writes, almost in
passing, “is an active process driven by the f ree energy available from
sunlight.”43
Here is how Daisyworld works. As a virtual planet, simplified for the
purposes of computer analysis, it consists entirely of white daisies and
dark daisies. Lovelock then changes the planetary temperature by adding
more or less solar radiation. His point is that, despite changes in surface
temperature, Daisyworld as a self-organizing superorganism always main-
tains a stable climate favorable to life. The dark daisies prefer the cold
and absorb light, while the white daisies prefer warmth and reflect light.
As Daisyworld gets colder, dark daisies flourish, which would seem a dan-
gerous imbalance, but then as the dark daisies multiply and absorb more
light, Daisyworld gets increasingly warmer, at which point, of course, the
white daisies stage a comeback. Lovelock’s core idea is that Daisyworld
offers a model of the earth as a complex biotic system that self-corrects

for its own imbalances. In failing to call attention to the central impor-
tance of light, however, Lovelock also fails to explore how light (tightly
coupled, in its effects, with human desire) holds the power to bring this
beautiful and intricate planetary self-organizing superorganism—over
many eons, not just temporarily—to wrack and ruin.
Daisyworld, as a simple sunlight-driven model, is a pretty peaceful
joint. Lovelock, as manager or steward, supplies the correct quantum of
sunlight free energy used to test the system, and his system runs as de-
signed. (Too much sunlight w ill fry everything.) Suppose, however, that
we introduce into Lovelock’s simplified and stable model l ittle humanoid
creatures who reproduce like daisy-loving rabbits—8 billion and counting.
These little humanoid figures, when not reproducing, like to fight. They
cut down rain forests, frack for shale oil, melt polar ice caps, and release
tons of hothouse gases. While they are admiring photos showing the
bright lights visible from outer space, the sea levels rise, coastal popula-
tions move inland, and even more fighting breaks out (over scarce food,
contested territory, and dwindling resources). The white and dark
daisies didn’t hate each other. They didn’t hire lawyers, blow up mosques
and churches, create international drug cartels, or stockpile nuclear
weapons. Unlike the inhabitants of New York City, they did not produce
12,000 tons of residential waste daily. At some unknown tipping point,
isn’t it probable that Daisyworld’s elegant self-organizing light-driven,
desire-inflected system—white daisies, dark daisies, little humanoid
figures, the w hole shebang—w ill collapse into a fished-out, clear-cut,
pumped-dry planetary chaos?
Planet Earth and its damaged ecosystems will survive and self-regulate
over many millions of years. H umans, on a shorter timeline for survival,
may not be so lucky. It is thus important to recognize how Daisyworld
inadvertently repeats the lesson that light (too much light) is not our friend.
Solar radiation takes no interest in us, but we should take an interest in
it. Too much trapped solar energy will make our lives miserable. Global
climate change, described in a document produced by the U.S. Environ-
mental Protection Agency, promises a grim watch-list of dangers to h uman
health. Young children, older adults, people with medical conditions,
and the poor are most vulnerable to heat-related illnesses. Climate-related
238 T he D ilemmas
flooding that devastates infrastructure w ill produce thousands of evac-

uees, many suffering from afflictions ranging from intestinal illness
and depression to post-traumatic stress disorder. Increased airborne
carbon dioxide has already multiplied pollen in some ragweed varieties
60 to 90 percent, creating epidemic-level allergies, while warmer temper-
atures add more days when ground-level ozone hits unhealthy levels.
Ticks carrying Lyme disease have extended their range northward; in
2002 a new strain of warm-weather West Nile virus emerged in the United
States. We already see a large increase in skin cancers and in potentially
fatal melanomas. Nowhere does the EPA, in discussing threats from cli-
mate change, mention the crucial link between light and human health.44
Medical eros would insist that light cannot be reduced to photons, me-
lanocytes, and bands on the electromagnetic spectrum. Light as a
natural force can be redirected by the twists and turns of human desire,
for better or for worse, and desire as a planetary force finds a striking cor-
relate in the celebrated NASA composite photo (Figure 8.1) that shows
the earth, as viewed from outer space, lit up like an incandescent geopo
litical pinball machine.
Light on demand, beginning with the domestication of fire, is among
the most significant h uman inventions, transforming nighttime darkness
and extending human vision, with far-reaching effects that extend all the
way, circa 2015, to forty-six well-lit megacities with populations over 10
million and growing. Light in the nighttime NASA image not only indi-
cates concentrated areas of human activity but also reflects the techno-
logical skills and relative affluence required to fire up the night sky such
that it can be viewed from space. Such nighttime photos of the illuminated
earth are often offered as a tribute to h uman prog ress: a visual erotics
of light, as if the entire planet pulsed out its burning affection and admira-
tion. The glowing traces of h uman habitation visi ble from space, how-
ever, also convey a less congratulatory suggestion: they expose the
world-changing effect of human desire (aided and abetted by science,
technology, and commerce) as we tirelessly mine the coal, strip the
forests, and pump the oil needed to convert fossil fuels into electric cur-
rent. This alarming turn in h uman desire is a relatively recent cultural
event, and it finds almost joyous celebration in a philosophical text (at
Figure 8.1. NASA Earth Observatory image by Robert Simmon.

Data provided courtesy of Chris Elvidge (NOAA National Geophysical
Data Center). Composite photog raph. 2012.
the heart of the American enterprise) that bears the resonant one-word
title Nature (1836).
“Nature is thoroughly mediate,” writes Ralph Waldo Emerson. “It is
made to serve. It receives the dominion of man as meekly as the ass on
which the Saviour rode. It offers all its kingdoms to man as the raw mate-
rial which he may mould [sic] into what is useful. Man is never weary of
working it up.”45 Emerson is usually understood as a prophet of the spirit.
He writes about the material world as the sign of an ideal or transcendental
reality beyond mere m atter, and this spiritual bent carries over in his al-
lusion to Genesis 1:26, where God gives Adam “dominion” over all living
creatures. Emerson’s quasi-religious view of nature as “thoroughly me-
diate,” however, should come with a large red banner reading Beware! His
view of nature in this passage is far less sacramental than instrumental.
Humans—if we extend Emerson’s concept of nature as thoroughly me-
diate—not only work up nature into products for h uman use but also today
presume to manage nature in a self-appointed (if biblically authorized)
role as stewards. Can we manage nature if we c an’t manage ourselves? In
Beijing, which ranks as only the ninth worst polluted city in China, simply
breathing the air is equivalent to smoking a pack of cigarettes daily. Still,
there is room for managerial skill. Chicago, a leader in reducing migration
240 T he D ilemmas
casualties, now boasts 90 to 95 percent compliance from skyscrapers

in turning off lights between midnight and dawn, slowing the nocturnal
carnage of birds. Even environmental success stories, however, given the
interconnections we can’t always recognize, may conceal trouble. Artifi-
cial light, even if wisely managed to protect birds, depends largely on the
consumption of fossil fuels, which helps drive global climate change.
Natural sunlight, moreover, is what (as in Daisyworld) supplies the ulti-
mate driving force for a planetary climate change: change revved up by
human desire in a twisted understanding of nature as “made to serve.”
The result, if not catastrophic extinctions and vanishing biodiversity, is
certain to be a swollen global burden of human misery and illness.
This is what Emerson does not tell us. Sunlight has a primary role in
regulating global climate via solar radiation, but here, too, human desires
intervene. The usual culprits are so-called greenhouse gases—particularly
carbon dioxide and methane—but even though they are produced mainly
by human activities, they are no more than accomplices. The mastermind
is solar radiation, as light orchestrates a three-step, real-world collusion.
First, greenhouse gases accumulating in the atmosphere prevent daytime
solar radiation from bouncing back into space at night, so the trapped solar
radiation directly increases surface temperatures. Second, as tempera-
tures rise, the air and seas also grow warmer, reducing the global snow
cover (that ordinarily repels solar radiation) and melting polar ice. As a
result, surface temperatures rise further, especially in the all-important
ocean currents, which directly affect major air masses. Third, as ice caps
melt and as sea levels rise, the increasing heat creates atmospheric turbu-
lence and monster storms that batter heavily populated coastal areas, while
fertile inland areas suffer drought and famine. The impact on human
health is already visible as tropical pathogens move north and as violent
storms create social havoc. In the New Orleans floods that followed Hur-
ricane Katrina, local police fled and the public order almost collapsed.
Light is far too important to environmental health to be left inexplicit,
taken for granted, or just plain absent from the discussion. Interest in light
has mainly focused on solar energy as a source of clean, inexpensive power
to underwrite our current lifestyles. Innovations such as solar heating,
solar architecture, solar cars, solar phones, and even a space-age inven-
tion called artificial photosynthesis all promise positive changes. The
International Energy Agency declared in 2011 that “the development of

affordable, inexhaustible and clean solar energy technologies w ill have
huge longer-term benefits. It w ill increase countries’ energy security
through reliance on an indigenous, inexhaustible and mostly import-
independent resource, enhance sustainability, reduce pollution, lower
the costs of mitigating climate change, and keep fossil fuel prices lower
than otherwise.”46 This list of global advantages, it is interesting to ob-
serve, does not envision any possible Black Swan downsides. It does not
mention the close and often dangerous relation between light and health.
The World Health Organization takes a different perspective on the
immediate future of solar radiation. It estimates that climate change, in
the two decades from 2030 to 2050, w ill cause an additional 250,000
deaths per year. Most of the p eople who die as an indirect but clear result
of climate change will perish from malaria, diarrhea, heat exposure, and
malnutrition.47
Light and its impact on h uman health will take the largest toll precisely
where the promising global advantages of solar energy are hardest to re-
alize: in the developing world. The picture is not pretty. Chaos tends to
multiply in a complex network of interlocking systems, and social suf-
fering is likely to increase fastest—with multiplier effects—in developing
nations that lack effective public-health infrastructures. Drought and
floods will threaten already precarious food supplies just when warmer
temperatures f avor the spread of infectious disease and when unsanitary
conditions breed disease-bearing waterborne parasites. As disease levels
increase, the breakdown in social order will undermine local and national
governments, with dire consequences for economic activity, trade, immi-
gration, and other large-scale social patterns, with an extreme impact on
individual health. One sure lesson of the HIV / AIDS epidemic: any new,
cunning virus constitutes an international peril. There is no eco-paradise
or nearby planet to run to.
The most dangerously underestimated threat that light poses to life on
earth—not just to human beings but to the biodiverse web of life on which
we depend—concerns the warming of the oceans. Water makes up some
71 percent of the earth’s surface and offers a vast absorbent medium for
the reception of light. Most of the water (96.5 percent) is contained in the
oceans, with the rest distributed among lakes and glaciers. The I nternational
242 T he D ilemmas
Union for the Conservation of Nature, in a report based on the work of

eighty scientists from a dozen countries, depicts an alarming future
when warming ocean temperatures will unlock billions of tons of frozen
methane from the seabed, baking the surface of the planet. This
light-driven warming is even now having its greatest impact upon such
building blocks of life as phytoplankton, zooplankton, and krill, with ef-
fects rippling up through the food chain. Environmental activist and
longtime defender of marine wildlife, Paul Watson, describes the human
stakes with stark conditional logic: “If the oceans die, we all die!”48
Medical eros alone c an’t resolve interconnected global crises, but a
focus on the health-related impact of human desire has a significant role
to play. While medical logos can anticipate the dangers and prepare first
responders, medical eros can help redirect individual and social desires
in ways that maximize protection and minimize threats in the long term.
The stakes are serious, and not for humans alone. The mile-high Sandia
Mountains frame the southwestern city of Albuquerque, which grew a fter
World War II (in a paradigm of urban sprawl) from a small desert town
to a postmodern metropolis of one hundred and eighty-seven square miles.
Today more than half of the world’s population dwells in urban areas, and
in the next generation the number w ill be almost 70 percent. New resi-
dents to Albuquerque are attracted by a dry climate that boasts a whop-
ping 280 sunny days annually. Above the high-desert city, on the peaks
of the Sandia Mountains, you can find sedimentary rocks with the fossil-
ized imprint of trilobites, brachiopods, and other ancient marine inver-
tebrates that once thrived in a prehuman, prehistoric sea covering almost
all of bone-dry New Mexico. The speeded-up version of climate change
possible in Daisyworld, as inflected by h uman desire, might well see iPods
and smartphones mixed among the shards and nautiloid fossils. Medical
eros would urge ways of redirecting desire. It would help us turn our
desires toward the creation of new, respectful, life-affirming, even truly
earth-loving relations to light.
Luminosity: Spirit and Health

“I like to bring light to the place that is much like that in the dream,” the
artist James Turrell explains, “where you feel it to be something itself, not
something with which you illuminate other t hings, but a celebration of

the thingness of light, the material presence, the revelation of light.”49 Tur-
rell has dedicated his c areer to working with light, light as so basic to
human perception that it appears even in our Technicolor dreams, which
otherw ise would unfold in total darkness. Ezra Pound in his ABC of
Reading (1960) described artists as the “antennae of the race.”50 Artists
such as James Turrell and fellow Californian Robert Irwin may well help
advance a healthy culture-wide shift in our relation to light. Such a new,
life-a ffirming contemporary relationship to light is not an impossible
fantasy, given the changing history of human attitudes toward light,
and it is important that light (in its relations to health and illness) should
not emerge mainly as contributing to problematic medical conditions
from skin cancer and heatstroke to XP. Turrell’s Roden Crater Project is
a culmination of his lifelong artistic meditation on light: a colossal earth-
work decades in creation, carved out of an extinct volcano in Arizona,
that invites viewers to experience light in celebration of its dreamlike
thingness—almost abstracted from the objects it illuminates—as a sen-
suous, awe-inspiring, material presence with the power (which Bataille
attributed to eros) to take us outside and beyond ourselves.
Turrell’s aim is to create, in a natural setting screened from urban haze,
an experience that brings the viewer face to face, so to speak, with light.
Light pollution obscures true darkness—w ith its access to nighttime
stars—for 80 percent of Europe and North America, which makes us both
light-saturated and light-deprived.51 A restored or renewed experience of
light is what m atters to Turrell. Planning for the immense project began
in 1972, and ever since Turrell has been transforming the desert vol-
cano into a multichambered space for reexperiencing light. Roden
Crater, in its focus on light, in effect stands outside the contemporary
land-art or earthworks movement associated with Robert Smithson,
Walter De Maria, and Michael Heizer, which to some degree liberates
art objects from museums by transforming the earth into art. The 600-
foot tall cinder cone at Roden Crater, by contrast, is no art object but
creates the impression that you are standing inside a gigantic telescope
pointed at the open sky. The stars at night, viewed from within the
crater-telescope, with no ambient light pollution, look much as they
looked to our ancient ancestors. You might discover, Turrell says, that
244 T he D ilemmas
in one chamber you can see your shadow in a pool of water cast solely by
the light reflected from the planet Venus. Roden Crater, encouraging
such individual reawakenings along with their accompanying emotions,
is a kind of antigallery. The work on display is not for sale, almost im-
material, and nothing but light. With its alternating sun-warmed basins
and cool, crypt-like dark spaces encased in volcanic rock, the interior is not
designed or meant for human inhabitants but rather, in Turrell’s words,
is a “habitation for light.”52
Light, reexperienced with the primal intensity and even perhaps with
traces of the sacred status that it once held for the ancient Egyptians, of-
fers a unique occasion for the awakenings often associated with spiritual
renewal. Turrell’s Quaker background, filtered through a modern Zen
sensibility, brings with it the enduring Quaker commitment to an “inner
light” and to a personal relation with the divine. Roden Crater offers what
Turrell calls “a stage where the landscape of our thoughts is united with
the infinite.”53 As a light-filled environment that unites thought and in-
finitude, Roden Crater also has the advantage of a high-desert setting that
invokes the awe of elemental forces. It gestures toward traditions of the
sublime, whose early theorists (such as Joseph Warton) held that the awe-
inspiring powers of the natural world, like panoramic vistas stretching
toward infinitude, transport us beyond ourselves and simulate or inspire
a personal experience of the divine: a rapt state in which mere human con-
cerns slip away. The one invariable illustration of sublimity that
eighteenth-century theorists invoked for well over a century was the om-
nipotent fiat lux of Genesis: God said, Let there be light, and there was
light.
Roden Crater extends into a sublime dimension his impressive but
more modest light-centered installations in museums and in various public
buildings, where Turrell in effect brings modern art and its institutions
into contact with a quasi-religious vision that begins and perhaps con-
cludes in sensory experience. “We eat light, drink it in through our
skins,” he observes, perhaps in reference to basic photosynthetic and photo
biological processes. This renewed experience of light, even granting
its quasi-religious dimension, inescapably approaches the erotic. “Seeing,”
Turrell insists, “is a very sensuous act—there’s a sweet deliciousness to
feeling yourself see something.”54 The distinctive experience of light that
Turrell orchestrates in Roden Crater in effect regards the earth as far more
than the sum of its interlocked ecosystems and as far more than raw
material awaiting its call to be “worked up,” as Emerson might say, in
the service of humankind. The earth, newly reimagined as a habitation
for light, becomes the setting for an art-based experience that is more
than aesthetic. Turrell and Roden Crater in this sense belong among a
select group of artists and artworks engaged in redefining spiritual expe-
rience. Mark Taylor, professor of religion at Columbia University,
argues that Roden Crater explores a new vision of spirituality, and Tay-
lor’s view is shared by Stuart A. Kauffman in Reinventing the Sacred
(2008), who examines various contemporary perspectives that seek to
reconcile science, reason, and religion.55 Taylor notes that from Roden
Crater spectators can glimpse nearby Hopi villages where light remains
a crucial element of ancient spiritual practices. Light, as Turrell reorients
our vision, invites viewers to share an almost primal experience of the
earth, as if at Roden Crater we were seeing both light and the earth, like
Adam, for the first time.
Spirituality, slowly but surely, is gaining a respected place within bio-
medicine, which had previously relegated it to the hospital chapel. Last
rites were almost an implicit sign of failure, a notification that medical
logos had nothing left to try—no procedures, no drugs, no cures. Med-
ical planners, turning their attention from the molecular gaze to the
bottom line, cannot ignore research showing that a significant majority
of patients would like spiritual issues considered as part of their med-
ical care. A number of medical schools now include optional courses on
spirituality. Oxford University Press is a reliable indicator of change,
and the year 2012 was notable for the publication of the Oxford Textbook
of Spirituality in Healthcare.56 Spirituality can be meaningfully distin-
guished from religion: spirituality refers to a personal attribute or incli-
nation, while religion refers to a formal and organ ized theology (with
traditional or newfangled dogma, creeds, and rituals).
The key point is that biomedicine has begun to recognize the spiritual
as well as religious needs of patients. The absence of such recognition re-
sulted in the destructive cross-cultural conflicts between a Hmong im-
migrant f amily and their American doctors recounted in Anne Fadiman’s
classic The Spirit Catches You and You Fall Down (1997). The collision
246 T he D ilemmas
of cultures looked more like a battlefield when medical logos prescribed

neuroleptic drugs as the proper treatment for a Hmong child with
epileptic seizures. The immigrant parents, who trusted animal sacrifice,
saw their child’s condition as a spiritual endowment and as a divine gift,
and neither doctors nor parents could find common ground.
Spirit is not easy to define—neither is love, which has not impeded
poets, artists, lovers, philosophers, and theologians ever since Socrates
left off his trademark dialectic reasoning in order to retell a story about
eros and about a ladder leading from the love of bodies to a love of ideal
form. L ater religious traditions, e ager to revise and appropriate pagan
classical legacies, were quick to notice that Platonic love finds its highest
satisfaction on a spiritual plane. Physician-writers such as Richard Selzer,
David Hilfiker, and Rafael Campo, without rejecting biomedical knowl-
edge or endorsing particular theological traditions, understand medicine
and the act of healing as a calling (a devotion to the care of others) that
approaches or includes a dimension that some would call spiritual. Selzer
describes a spirit or almost numinous power in certain patients that he
compares, indirectly, to classical traditions in which gods temporarily
took possession of mortal bodies.
Spirituality in health care, even if largely confined to the patient side
of the bed, recognizes a place for desire—expressed openly at times as a
desire for God—that is certainly relevant to medical eros. Health in various
spiritual traditions is regularly associated with spiritual well-being. The
experience of serious illness, as it attacks our health, can also shake us
and change us, raising spiritual doubts or questions. The final loss of light
and descent of darkness signals the start of an uncertain journey. “Bright-
ness falls from the air,” writes Thomas Nashe in his haunting “Litany in
Time of Plague” (1592), which continues with the refrain, “I am sick, / I
must die. / Lord, have mercy on us!” Nashe may have felt some need of
divine forgiveness as the author of an infamous erotic poem, “The Choise
of Valentines; or the Merie Ballad of Nash His Dildo,” which some call
flatly pornographic.57 A firm belief in God or in an afterlife is not neces-
sary in order to express spiritual longings, or to experience religious
doubt, but it is a sign of significant change that family medicine (as a spe-
cialty) emphasizes care focused on what it refers to as “the whole person.”
The words wholeness and holiness share an entwined history, despite some
unruly or dark desires native to the whole person, and family medicine
now endorses for physicians a standard questionnaire designed particu-
larly for “spiritual assessment.”58
“Spiritual needs change with time and circumstances,” an editorial in
the British Medical Journal observes, recommending that “healthcare
teams ensure accurate and timely evaluation of spiritual issues through
regular assessment.”59 Evaluation and assessment, of course, return us to
the domain of medical logos, where even spiritual needs are subject to ex-
ternal observation and rational analysis. Rachel Naomi Remen—drawing
upon her background in pediatrics, family medicine, and psychotherapy—
reminds the medical students whom she teaches that their institutions
stand “in a direct and unbroken lineage” to the t emples of Asklepios. “I
remind them,” she writes, “that for all its technological power, medicine
is not a technological enterprise. The practice of medicine is a special kind
of love.”60 T here is more than one way to acknowledge the spiritual
dimensions of health and to enlist the healing force of eros. Love, for
ecofeminist Cynthia Moe-Lobeda, is a powerf ul energy for good with
which to mount active opposition to the structural evils built into cap
it alist economies and into our social hierarchies that despoil the earth,
oppose social justice, and, I would add, damage the health of individ-
uals and communities, beginning with the poorest and most vulner-
able.61 The power of eros to bind also includes a quasi-spiritual power
to unbind: to resist the oppression and injustice that leave certain
people not only in need of medical care but also in urgent need of lib-
eration and enlightenment.
Light in its spiritual dimensions always includes a ricorso that brings
us back to the earth. The Zuñi p eople traditionally regard the sun as the
sacred source of life; the Zuñi word for daylight even doubles as the word
for life. Zuñi pueblo rooms are always dim—w ith fireplaces for winter
heat, but no candles62 —so there is special significance to the Zuñi cere-
mony for newborns. On the eighth day, the newborn infant is taken
outdoors before dawn. At first light everyone f aces east—parents, relatives,
friends—and corn meal is sprinkled in reverence to the rising sun. It is a
ceremony that reconfirms the bonds of community and that recognizes
light as the sacred source that binds the p eople and their lives to the earth.
The prayer begins: “Now this is the day. / Our child, / Into the daylight / You
248 T he D ilemmas
ill go out standing. / Preparing for your day, / We have passed our
w
days.”63 Sunlight and daylight are such simple, primal forces, truths of
nature, but they are also the beginning of life on earth and indispensable
to human health.
My daily desert ritual, at least on weekdays, ultimately led homeward
at night to the security lights over my garage, halogen bulbs, and an LED-
backlit computer screen: a model of postmodern forgetting. The earth
will survive my forgetting, just as it survived the six-mile-wide Chicxulub
asteroid, which many scientists believe eradicated the dinosaurs by
blocking sunlight with thick clouds from planetary fires and volcanic
ash. And not just dinosaurs—this cosmic Black Swan erased 93 percent
of all mammal species.64 It is not h umans alone who w ill pay the price for
light-driven global climate change. A new erotics of light appropriate to
the anthropocene—as scientists now call the era when humans began to
alter the earth—is far preferable to another landscape of the dead. Yes, the
earth w ill recover, as it did before we muddled onto the scene in our per-
sonas as scientists, capit alists, industrialists, developers, technocrats,
systems analysts, and managers, upright cousins to the chimpanzee with
whom we share a common ancestor and 98.8 percent of our DNA. Light
is not an inappropriate metaphor for the wisdom and compassion that we
earthlings need. We might even recall, as an emblem of our mutual soli-
darity with the earth, especially amid illness or the nearness of death,
the purpose served by the once indispensable and now almost archaic
lighthouse. It is the nearby lighthouse—“tall, robust, and reassuring”—
that Jean-Dominique Bauby sees in his very first wheelchair expedition.
“I placed myself at once,” he writes, “under the protection of this broth-
erly symbol, guardian not just of sailors but of the sick—those castaways
on the shores of loneliness.”65 The lighthouse with its beam shining into
the darkness might serve as a visual reminder that we are all, in a cosmic
sense, castaways.
Chapter Nine
The Spark of Life:

Appearances / Disappearances
All goes onward and outward . . . and nothing collapses,
And to die is different from what any one supposed, and luckier.
Walt Whitman, Leaves of Grass (1855)
“S he had the spark of life,” says the grieving late-middle-aged

husband about his wife, Fiona, in the 2006 film Away from Her.
Sarah Polley, the Canadian writer-director, preserves the husband’s key
phrase from Alice Monro’s short story on which the film is based about
an aging w oman who checks herself into a residential Alzheimer’s facil
ity. It took several years before I worked up my nerve to watch the film
1
on DVD, but it was worth the wait. The attractive, well-r un, homelike
residential facility made me think, enviously, that Canada must be a
world leader in the compassionate treatment of degenerative neurolog-
ical diseases. I had to remove Ruth abruptly from her first for-profit facil
ity where residents in packs raided the closets of newcomers. I suspect
that the management was more concerned with filling beds than with care-
fully screening the patients who filled them. Away from Her certainly
cleaned up the pervasive messiness I remember—life coming apart at the
249
250 T he D ilemmas
seams and spilling out everywhere—that still wakes me up at night.

Ruth, too, had the spark of life. You could see it in her eyes. My eyes are
a gambler’s mask; they w on’t give me away, most of the time, and you
won’t learn much. Ruth’s eyes flat-out dazzled with light, and Alzheimer’s
disease has now snuffed out the spark. Ruth passes her days with blank,
unfixed eyes and doesn’t recognize me or even look up as I stroke her
hair. I gaze into her face, and she has not vanished—she is still here, but
she’s no longer Ruth. I don’t really know who she is. At times her vacant
look actually frightens me. I see all the old familiar traces, but daily and
gradually, right before my eyes, she is disappearing.
Disappearances now get my interest, especially what I’d call incomplete
or in-process disappearances, where you can still see traces of what is
about to vanish. The spark of life is infinitely precious not least b ecause
it tends to escape our attention before it suddenly goes missing, somewhat
like health. “Health,” the philosopher Hans-Georg Gadamer writes, “is
not something that is revealed through investigation but rather something
that manifests itself precisely by virtue of escaping our attention.”2 Health,
for Gadamer, remains an “enigma” (Verborgenheit), concealed in an un-
recognized mystery that differs from the not-k nowing of illness because
illness, most of the time, tends to attract our attention. Gadamer lived
past the age of one hundred, despite a medical prognosis that had pre-
dicted his early death, so he was certainly acquainted with mysteries that
escape the molecular gaze. Health, as Gadamer defines it through an in-
herent invisibility, differs from the gym-toned state pursued as a visible
goal by the consumers of fitness products, but fitness and health can also
both vanish suddenly, as illness plunges us into crises often as sharply
defined as a gunshot wound. Medical logos, of course, measures a return
to health through, among o thers, the measurable restoration of function
and the reappearance of healthy vital signs. The spark of life has no place
in a hospital chart. It belongs to the unofficial archives of medical eros,
and it may be most urgently valued, as I have been led to discover, in the
process of its own disappearance.
My desire to see Ruth restored, to see the spark of life in her eyes, turns
slightly less agitated when I recall Reynolds Price’s hard-earned advice
to be brutally realistic about your limits and thankful for air. Ruth’s limits
now are obvious; mine a ren’t. And brutal realism has brutal costs.
T he S park o f L ife : A ppearances / D isappearances 251
Gun violence in the United States is now a serious public health issue
in pediatrics, where twenty children and adolescents each day sustain
firearm-related injuries that require hospitalization.3 What playground
spark vanishes forever when a child suffers a near-fatal gunshot wound?
Thankful for air is not how I feel after visits to Ruth. Every day, she once
said, she looked for something to make her happy, and she usually found
it. Happiness is more than I can manage. I know that disappearances
belong to our hidden contract with time and death, and I remain grateful
for the days that I shared with Ruth, which have disappeared into the
past but not wholly vanished. The main dilemma I face in my new roles
as visitor and as behind-the-scenes care manager is not concerned with
disease or with happiness. It is about how to understand the disturbing
interlock between appearances and disappearances.
One quite personal disappearance—or series of daily disappearances—
was the loss of a desire to write, since writing, as I mentioned earlier, was
so central to my daily life. The caregiver’s dilemma, I found, extends
farther than I anticipated. I had expected collateral damage as my own
invisible health visibly slipped away, but I had not expected to lose a
taste for pleasure. Desire, too, had gone missing. My state of anhedonia
never approached clinical depression—I enlisted a psychologist to keep
track in case I tipped over the edge—and it never produced absolute
writer’s block, not completely. I still hit deadlines, but the work took on
an unaccustomed dutiful, mechanical feel. Hypergraphia, as neurologist
Alice W. Flaherty explains, is the medical term for “an overpowering
desire to write.”4 This odd condition is correlated with changes in a spe-
cific area of the brain. I must have experienced brain c hanges linked to a
near opposite condition. I called it atrographia: an overpowering loss of
desire to write. Imagine that you can walk, but you gradually experience
an intense loss of desire to walk. My state exactly: I could write, but
writing lacked all pleasure, joy, and desire. Eros loss. Maybe work can
go on minus the electrifications of eros—but why? Joyless work, drained
of desire, may yield a certain numb bolus of acceptable product, but not
much more. Some 15 percent of men and more than twice as many w omen
experience the loss of sexual libido, which merits medical attention. My
libido was alive and well. The loss of a desire to write, however, was new
and didn’t even rise to the quasi-medical level of writer’s block. It was
252 T he D ilemmas
Ruth who bore a medical diagnosis, while (to all appearances) I looked
at least not i ll. We had both lost our way. Both lost the spark. I could still
see the firefly traces, even as they were in the process of disappearing, and
recognize the loss, which made it far worse.
Appearances: The Convergence of Eros and Logos

My claim is that medical eros and medical logos can accomplish more to-
gether, as contrary powers and even as edgy disagreeing complements,
than e ither can accomplish alone. Sometimes, together, they are mutual
accessories and share overlapping interests. Physical appearances—to
which eros seems especially attached—are a case in point.
Appearances, as a daily fact of life, have claimed increasing attention
and importance in a media-driven visual culture where looks m atter:
hair, abs, big butts, tattoos. Medical logos and medical eros both have
investments in this trend, which shows no sign of slowing as social media
accelerate it with intimate selfies and online postings. Medical logos,
especially through cosmetic surgery and pharmacology, has lent its sci-
entific knowledge and technical skill to enterprises far removed from
traditional aims and methods for treating disease. Ohio-born Cindy
Jackson in the year 2000 became the official Guinness World Records
titleholder a fter recording fifty-t wo separate cosmetic surgeries. Lucky
Diamond Rich, as he is known, in 2006 held the Guinness record as
“the world’s most tattooed person,” meaning that he was 100 percent
tattooed. Surgeries, unlike tattoos, are medical procedures, and Cindy
Jackson’s multiple cosmetic surgeries were designed not to correct
disfigurements but rather to reconstruct her appearance so that it ap-
proached, as close as possible, her idea of visual, bodily perfection. If
medical logos supplies the knowledge and skill required in this ques-
tionable enterprise, then medical eros is surely complicit in whatever
personal and cultural desires lead someone to enlist surgeons in such
world-record excess.
Desire, as eros draws us toward immoderation, always threatens to spill
over social lines of containment. The overflow may reflect artistic as well
as cosmetic desires. The French performance artist who goes by the single
name Orlan is no Barbie-doll wannabe. “I’m interested in multiple iden-
tities, mutant identities, nomad identities,” she says, as if reading directly

from contemporary French theorists Gilles Deleuze and Felix Guattari.
Her multiple surgeries—fi lmed—are designed to reconstruct her face
so that it simulates—eyes, nose, mouth—features borrowed from famous
paintings and statues. Her new nomadic identity is thus a deliberate perfor
mance of creative self-fashioning focused not on fashion (as outer costume
or high couture) but on flesh. As she says, “I give my body to art.”5
Medical eros and medical logos go hand in hand, even if unknowingly,
in the new social drama of altered physical appearances—culpable,
laudable, or neutral, depending on the particular situation—but both are
inescapably entangled, even when the nonsurgical aim involves simply
losing half your body weight. The decorative enhancements of body art,
from genital beading to traditional Japanese irezumi, are most often harm-
less (even artistic) expressions of personal and cultural desire, although
medical logos may be called in to zap unwanted tattoos or to cure infec-
tions. Performance-enhancing drugs, on the other hand, are often illegal
or rule-breaking pharmacological products meant to aid in the pursuit of
athletic speed, strength, and agility. Improved physical appearance may
be a secondary motive for athletes—steroids can produce disfiguring acne,
among worse side effects—but desire still rules in the quest for victory
or gold. The booming worldwide market for drugs that improve sexual
performance offers a more obvious desire-driven confederation of eros
and modern medicine. By comparison, whiter smiles, thicker hair, and
slimmer waists seem an innocuous, everyday pharmacological pursuit in
cultures focused on outward appearances. Medical logos and medical
eros regularly join forces, then, in facilitating the pursuit of sexy, youthful,
attractive appearances.6
The pursuit of attractive appearances might seem merely a personal
matter, but the associated dilemmas reach further than questions about
whether to buy collagen or Botox injections. Social ills and psychic
traumas also attend a media-driven culture in which bodily perfection (“a
perfect 10”) becomes a plausible standard. Appearances matter, of course,
as everyone knows. Pinups and calendar art reflect a Paleolithic neuro
biology of reproductive success in which outward traits such as bilateral
symmetry and thick hair are signs of health in a prospective mate. Birth
defects and disfiguring injuries can bring with them lasting psychological
254 T he D ilemmas
distress, so medical logos merits sincere thanks for the repairs it can
offer. Medical eros, too, can point to success stories. In a significant cul-
tural shift, television and new media have developed a respectful open-
ness to people with disabled bodies or marred appearances, from wounded
warriors and wheelchair athletes to the victims of terrorist attacks. Alongside
the predictable phalanx of good-looking movie stars and charismatic
celebrities, the disabled, the disfigured, and the seriously ill are increas-
ingly emerging into public view. Medical eros and medical logos to-
gether, in an unscripted and spontaneous coalition, are helping people
with disabled, impaired, and less than perfect 10 bodies make their newly
visible social appearances.
Appearances often have an undeserved bad name as superficial, trivial,
deceiving, false, unreal, or simply fleeting: the binary opposite of every
thing solid, real, and true. It is high time to give appearances their
due. Appearances, we might say, constitute physical realities as genuine
as the Earth’s shadow cast against the moon. A lunar eclipse captures our
attention, and nobody criticizes the shadow as somehow false, deceiving,
or unreal. It is, as we take for granted, the appearance of a real shadow.
Appearances constitute social realities as significant as Aurora’s crimson
silk scarf and her three shades of green eyeshadow; her glitzy appear-
ances proved far truer to her personal identity than the staid professional
demeanor behind which her still-closeted doctor, Rafael Campo, ini-
tially screened his sexual confusions.
Appearances as a social reality hold special importance to p eople and
groups who face discrimination and stigma. Starting in the 1980s, for
example, gay rights activists risked injury and death as their protests of-
fered a visible target for hate, but their struggle continued on less visible
fronts as well, such as resistance to the stigmatizing images of emaciated
gay men on public health posters, which simply reified erroneous cul-
tural beliefs equating homosexuality with disease. Even the psychiatric
Diagnostic and Statistical Manual had classified homosexuality as a
form of m ental illness, until—after massed protests at the 1970 meeting
of the American Psychiatric Association—t he seventh printing of DSM
II revised the classification to “sexual orientation disturbance.” It was
not a huge step, but it was a step forward. The social fact of marred, im-
paired, or wasting appearances, in America as in Africa, carried its own

powerful subtexts.
Disability rights activists face similar battles focused on social appear-
ances. Indeed, for decades in the United States the disabled w ere either
invisible, socially speaking, or they were reduced to the sum of their phys-
ical appearances, as if each was all (disabled) body. Eros and logos to-
gether are responsible for the changes that now welcome images of the
disabled body, as in promotions for the Special Olympics. The broken
body, the grotesque body, the refugee body, the body in pain, all have
made new appearances. Doctors Without Borders and Amnesty Inter-
national, for example, have brought widespread attention and much-
needed medical care to poor, sick, elderly, forgotten, and homeless people
who were once invisible.
The new appearance of nonstandard bodies (as a site of medical care
and of public respect) is more than an expression of concern for equality
or for social justice. It turns appearances—formerly, the agent of a narrow,
glamorized ideal—into a freewheeling, liberated carnival of alternate
bodies: tattooed, pierced, ripped, androgyn, dreadlocked, shaved, hump-
backed, be-gothed, multiracial, obese, or strung-out. Such a vision shifts
how we understand both health and illness. I know a w oman astonished
at discovering that her husband regarded her bald head (the side effect of
a harrowing course of chemotherapy) as a complete sexual turn-on. Eros
no doubt just smiled—and notched another arrow.
Desire, of course, is regularly ignored by the molecular gaze as not a
medical issue, and philosophers strongly influenced by neuroscience may
regard it as the relic of an obsolete folk psychology. Nowhere is desire more
important, however, than as it relates to medical care, not simply for
the ill but for the imperfect, diseased, or disabled body. Medical logos
alone simply cannot explain why some physicians such as David Hilfiker
(no saint, he insists) choose to work almost exclusively among the poor,
pursuing what is sometimes called poverty medicine.7 The desires that
move physicians may differ widely, from spiritual growth or far-left poli-
tics to a passion for community service or a love of family, but reason
alone or the worthy goal of adding knowledge to the biomedical data-
base w on’t account for the long hours that physicians spend caring for
256 T he D ilemmas
seriously sick and damaged p eople so desperate for assistance that the
ideals of physical perfection or of perfect health seem laughable. We
may each prefer different objects of desire, and our desires may find
expression in our differing ideas of paradise. I like the counter-ideal ex-
pressed by poet Wallace Stevens—t he right standard, in my view, for
the era of nonstandard appearances—when he wrote, “The imperfect is
our paradise.”8
Imperfect appearances—as self-assertion or even as an aggressive act
of public re-education—have already achieved a place among con
temporary forms of guerrilla theater: a site of political resist ance and
combat. Disability aesthetics, as it is called, may wholly reject traditions
of beauty.9 Or it may redefine the beautiful in ways incompatible with tra-
ditional aesthetic norms. British photographer and educator Jo Spence
(1934–1992), for example, whose working-class politics and opposition to
standard biomedical treatment profoundly shaped her experience of
cancer, crafted photographs that both acknowledge and resist commercial
images of the erotic body. She stages her appearances, like an actor, to
offer a defiant, audacious counterimage that both subverts norms of
female beauty and also asserts a contrary set of values, as seen in the
photograph in Figure 9.1, which features her cancer-damaged breast.
This is not the image of a recovering patient. Spence co-opts the avi-
ator glasses from a tradition of hip glamor—glamor as limiting as the black
rectangles once pasted across the eyes of patients in early medical text-
books—and then, as if asserting the inner privacy of a Modigliani nude,
she directs her shuttered gaze outside or beyond the room that her glasses
reflect. The glasses allude to a standard erotic lexicon while the photo
declares allegiance to a nonstandard, new eroticism. The glasses, in ef-
fect, invoke an iconography that she sets out to unravel in order to recon-
struct, after her own desires. “I began to reverse the process of the way I
had been constructed as a woman,” she explains, “by deconstructing my-
self visually in an attempt to identify the process by which I had been
‘put together.’ ”10
We are all in some sense “put together” by forces that we do not en-
tirely understand or control. We may have put the clothes into our closets,
but who or what put them in the store? Why did we desire them? Bodies
are no less constructed than appearances, although such bodily construc-
Figure 9.1. Jo Spence in collaboration with Terry

Dennett. A Picture of Health: Heroine. 1982.
Copyright the Estate of Jo Spence.
Courtesy Richard Saltoun Gallery, London.
tions (inflected by cultural desires) meld uneasily at times with a less mal-
leable biological substrate, as in the preference for insanely small w omen’s
waists, or in the ancient Chinese practice of foot-binding. Jo Spence’s self-
portrait offers a political and deconstructive critique of the erotic images
and desires that can deform the female body in the name of beauty—or of
health. She titles her self-portrait, created in collaboration with photogra-
pher Terry Dennett, A Picture of Health: Heroine (1982). The title, in
conjunction with the image, asserts a new vision of health and of heroism,
but it does more: it explodes outmoded traditions of female beauty (even
as revised in Modigliani nudes) while it reclaims erotic desire as insepa-
rable from her marred, scarred, and fearlessly imperfect appearance.
258 T he D ilemmas
Appearances m atter, then, in their power to affirm or to resist, and

health (as more than a state of limbs and fluids) holds close commerce with
appearances in their social and political impact. Appearance, on the most
obvious level, provides visual evidence crucial to physicians about a per-
son’s health or illness, while recovery from illness often includes visual
signs that we interpret directly as a healthy appearance. This close rela-
tionship grows vexed and harder to interpret, however, when health as
an ideal comes to seem as oppressive or limiting as conventional standards
of beauty. The World Health Organization, with an annual budget nearing
$4 billion, defines health in a formula still in place since 1948 as “a state
of complete physical, mental and social well-being and not merely the ab-
sence of disease or infirmity.”11 How many p eople, I wonder, can claim to
possess “complete physical, mental and social well-being”? Not me, not
millions of refugees, and not many military veterans disabled with inju-
ries. A 2015 study in The Lancet contends that over 95 percent of the
world’s population has health problems, with over a third dealing with
more than five ailments.12
A misguided, almost moral, imperative that drives people to achieve
near utopian levels of well-being may actually increase the cultural load
of illness, which is the paradox behind a collection of essays titled Against
Health (2010). The authors are not truly against being healthy but rather
against the cultural fervor that turns body-monitoring from a psycholog-
ical trait into almost an ethical duty and a commercial responsibility.13
The Lancet study shows that only one in twenty people (4.3 percent)
worldwide had no health problems in 2013. Can’t at least some of
us—the other 95.7 percent—live relatively healthy lives while also dealing
with something less than optimal states of physical, m ental, and social
well-being?
It might be better, a fter 1948, to redefine health not as an optimal
state of mind, body, and spirit but rather as the subjective estimate of
how well we function despite our state of imperfection: despite illness,
disability, and bodily failures. Function—not some impossible optimum
state—seems to me what matters, and, on such a view, health is less an
appearance (rosy cheeks, average body weight, good posture) than what
invisibly disappears into our everyday functions. Everyday function is of
course often visible as an appearance, but it does not disappear when we
are unseen, and everyday function in an imperfect state at least recon-

structs health as a paradoxical appearance that indicates its presence, in
Gadamer’s words, “by virtue of escaping our attention.” Health, in short,
is less the visible appearance of well-being than a manifestation of its
own disappearances.
Health as everyday function—redefined (abstractly) as the manifesta-
tion of a disappearance—needs a concrete example to give it flesh and
blood. The AXIS Dance Company, founded in 1987, ranks among the first
and most influential professional companies pursuing so-called physically-
integrated dance; meaning, it employs dancers both with and without
physical disabilities. Its performances offer at least one instance suggesting
how disability and bodily impairment might somehow, like health, evap-
orate before our eyes into everyday function. Whereas Bill T. Jones in
Still / Here employed able-bodied dancers to represent disabled and ter-
minally ill patients, AXIS Dance Company—along with companies from
England and Australia to South Africa founded on similar principles—
employs in its performances a mixed ensemble of able-bodied and dis-
abled dancers. Their work begins, in effect, by removing disability from
a medical context in order to resituate it in a new aesthetic realm, from
which its disruptive and transformative energies can flow back into the
wider culture. Simultaneously, they challenge conventional aesthetics and
especially traditional dance by emphasizing a new inclusiveness. The
challenge aims to be subversive, as in modernist avant-garde traditions,
but these distinctively postmodern transgressions undercut certain
elitist tendencies within modernism that, especially in dance, f avor clas-
sically trained, beautiful, athletic, graceful, and, yes, thin and muscular
bodies. The AXIS Dance Company puts disabled dancers on stage,
mixed with able-bodied dancers, in a choreography that sometimes per-
mits embodied disabilities to disappear (or, better, to all-but-disappear)
before our eyes.
One visual image is insufficient to indicate how the AXIS Dance Com
pany upends traditional ideas of dance. Eros, of course, is not its main
focus, but the dancers moving in choreographed geometries (suggesting
mutual attraction and repulsion) are impossible to disentangle from erotic
implications. AXIS can even eroticize everyday appliances associated
with disability. The wheelchair thus appears on the AXIS stage not as
260 T he D ilemmas
Figure 9.2. AXIS Dance Company. Sonsherée Giles and Rodney Bell.
Choreographer, Joe Goode. Photographer, Brian Martin.
medical conveyance—not even quite possessing whatever thing-like quali-

ties that wheelchairs ordinarily possesses—but rather, through its trans-
formation, a platform for the erotic meeting of two bodies, much as AXIS
transforms desexualized stereotypes of people with disabilities. Figure 9.2
shows the AXIS Dance Company members Sonsherée Giles and Rodney
Bell performing in an award-winning piece from 2008 by pop artist and
choreographer Joe Goode.
An overturned wheelchair is usually a sign of trouble; I still cautiously
steer Ruth around her indoor facility, fearful of sudden bumps that might
pitch her forward out of the chair. The overturned AXIS wheelchair, dis-
abled from signifying only disability, now serves to surmount divisions
between health and unhealthiness. Less a device to accommodate
limitations than a bridge to overcome disconnection, the overturned
wheelchair mysteriously links male and female, able-bodied and dis-
abled, dancers and (if they respond as I do) audiences. It even bridges
usually separate orders of experience, from loss and impairment to ec-
stasy and transcendence, in a performance that enlists dancers, bodies,

and movement in a radical act of erotic or eros-like subversion.
The AXIS Dance Company, while subverting not only conventions of
dance but also conventional ways of reading bodies and minds, has re-
ceived seven Isadora Duncan Dance Awards, and its principles and
methods are most significant—beyond a specific focus on eros, on dance,
or on health—for inviting audiences to imagine new ways of understanding
disabled bodies. Dancers with disabilities not only mingle and switch po-
sitions with able-bodied dancers (in ways that blur their differences) but
also at times make their differences obvious by appearing on crutches or
using prosthetic limbs. Some companies now include dancers who are
mentally disabled. The overall effect, in blurring boundaries, is an art that
does more than simply include the disabled; rather, it depends on them.
They are necessary in the subversion of our conventional ways of reading
bodily appearances. Disabled bodies are not enfolded invisibly within the
cultural norms that had previously excluded them, like an assimilated mi-
nority, but instead they emerge into view precisely to explode oppressive
norms and to create a new integrative cultural space where disabled bodies
make a valued reappearance—by almost (but not entirely) disappearing.
Medical eros might see in such near disappearances the model for a new
and nonutopian ideal of health. After all, one in seven people today is dis-
abled, and the Black Swan circles. Meanwhile, I struggle to deal with
troubling disappearances—the spark of life, the desire to write—since,
despite Gadamer, I am still drawn to traditional images of good health
(like rosy cheeks) that resemble solid and reassuring appearances.
Pathologies of Desire: Violence and the Seductions of Reason

Eros in its appearances often seems almost inseparable from violence. A
potential for violence is certainly among its least attractive qualities,
whether expressed as jealous rage, rough sex, or a fascination with death.
Medical eros cannot simply wish away the troubling kinship that links
eroticism with violence. Violence likely has biological roots in the fight-
or-flight response that humans share with other primates, and the human
social order, too, depends on an accommodation with violence, expressed
via armies, police, and systems of discipline. Even the sacred, as a
262 T he D ilemmas
category regulated by h uman desire, relies on violence. As the anthro-

pologist René Girard has argued, religious rituals and the social cohesion
that they promote regularly find support in violent acts that range from
ceremonial human sacrifice and scapegoat rituals to reenactments of the
Crucifixion and religious jihad. Violence and the sacred, he argues, are
“one and the same t hing.”14
Are eros and violence, too, one and the same thing? The crucial issue
for medical eros is not whether desire can include or incite violence—
sometimes it does—but rather how to redirect erotic desire toward ben-
eficial, therapeutic, productive ends. Bataille has documented the bloody
dark-side of desire in The Tears of Eros, and we have daily evidence of
the covert links between death and desire. Eric Trump, writing in the
“Modern Love” column of the New York Times, describes how his life-
threatening kidney failure during his years as a graduate student served
as an aphrodisiac to spark a clandestine affair with his much-older, still-
married female professor. It was his end-stage renal disease and imminent
death, Trump writes, that “seduced us into believing we loved each
other.”15 The shadow of approaching death, it appears, can be far more
erotic than what Trump calls “the banality of health.” (His lurid romance
crumbles when a kidney-transplant and antirejection drugs unexpectedly
save his life.) Eros can never entirely break free from such dark-side
complexities, but Girard offers a helpful clarification in arguing that
violence has a dual nature: “At times violence appears to man in its
most terrifying aspect, wantonly sowing chaos and destruction; at other
times it appears in the guise of peacemaker, graciously distributing the
fruits of sacrifice.”16
The dual nature of violence—as peacemaker and warmonger—makes
it crucial, Girard argues, for societies to control harmful violence while
promoting beneficial violence, and medicine, although doctors seldom
emphasize it, has a place for beneficial violence. Chemotherapy and ra-
diation saved his life, but Reynolds Price suffered unremitting chronic
pain and lost the use of his legs as a direct result of life-saving medical
treatment. The hard-won diagnosis of diphtheria, in William Carlos Wil-
liams’s story, comes only a fter the use of force. Force is not identical with
violence, however, and patients occasionally act in ways that are undeni-
ably violent, as when drunks resist doctors in the emergency department,
for example, or when dementia patients strike out blindly or uncon-

trollably at staff members. Ruth’s facilit y disallows the use of physical
or chemical restraints, and medical eros must tread cautiously amid
hard questions about the rights of patients who are violent, the safety
of staff, the protection of fellow patients, and appropriate legal or eth-
ical countermeasures. I would like to raise a different question about
harmful violence, no doubt impolite but impossible to dissociate from
eros. Is t here also a violence inherent in reason?
Doctors, as Atul Gawande claims, tend to have a fierce commitment to
the rational. Can a fierce commitment resemble or turn into a violent pas-
sion? The question implies that reason may become less an instrument
used in the treatment of illness than the object of medical desire. It is as
if—to create personified abstractions—Reason enlisted Desire in the am-
orous pursuit of Reason. Reason (Narcissus-like) fiercely desires Reason
in a circular pursuit that can only end badly. The violence facing con
temporary doctors is sometimes in part self-inflicted, from suicide and
alcoholism to burnout, and it cannot be traced to a single source. A fierce
commitment to reason certainly entailed significant personal and profes-
sional harm for Rafael Campo, as he explained, but the relevant issues
for medical eros spill out far beyond biomedicine to the wider cultural
contradictions in which doctors, patients, and everyone in between find
ourselves caught.
Today it is hard to avoid getting caught up in a concealed triangular
relationship in which desire is the mediator between consumers and the
newest technology. The hyper-rationality embodied in our technological
gadgets is a large, if concealed, part of their allure. Even our phones now
are “smart”—a nd we regularly discard the previous, well-f unctioning
phone for a new model that is even smarter. Maybe smartness, as a quality,
draws us as much as the material object. For many patients, the newest
miracle drugs and high-tech treatments have certainly become objects of
desire, and it is hard not to separate the smart-power embodied in the new
medical technologies from the doctors authorized to access it. The tradi-
tional romantic liaison between doctors and patients takes a new twist
today, and erotic metaphors are not entirely far-fetched. “Above all,” writes
Gadamer, “it is the patients approaching the doctor for help who are so
seduced by the astonishing technical means of modern medicine that they
264 T he D ilemmas
see nothing but this aspect and marvel only at the doctor’s scientific
competence.”17
The erotic seduction directly invoked in Gadamer’s word verführen
(“seduced”) recalls soap-opera plots, but Gadamer identifies a strangely
different erotics of medical seduction in which it is patients who seduce
themselves. As if engaged in a weird form of self-hypnosis, they dangle
before their eyes the gleaming biotechnologies that embody, like the
doctor, all the allure of science and reason. Patients, of course, are hardly
unique in this one-person dance of self-seduction. Reason and technology
exert an openly erotic attraction over consumers in electronics stores,
kindling desires for products that we d idn’t know we wanted b ecause
the manufacturers and advertisers make sure that the objects already
embody our desires. We are becoming familiar with this new erotics of
self-seduction in science-fiction films where a young man falls in love
with an attractive female robot or with the throaty voice on his speech-
enabled computer. Gadamer recognizes the harm posed by this new
reason-driven love affair with biotechnologies: doctors and patients run
a g reat risk of forgetting that “the application of this knowledge is a
highly demanding and responsible task of the broadest human and so-
cial dimensions.”18
Biotechnologies are the proper province of medical logos, but medical
eros offers an important, complementary perspective for understanding
the subtle and complex ways in which biotechnologies engage personal
and social desire. The harmful violence of reason is not always self-
evident, unlike the violence of brute force; it is more dangerous precisely
for being usually concealed within social norms. We remain unaware of
its operation, like a worker who feels burned out but does not recognize
that burnout may be the result of a punishing work schedule nonetheless
considered reasonable. Even the violence of brute force, however, now
regularly lies in quasi-concealment—like the laser-guided “smart bombs”
that blow up enemy trucks or compounds in little exploding puffs of
smoke on a video screen. We are encouraged to forget that t here are d
rivers
and passengers inside. The seductive, soft violence of reason—implicit
in the technologies that underwrite smart bombs and surveillance
systems—certainly makes its appearances inside certain routines and as-
sumptions of everyday medical practice. Patients often assume, consis-
tent with the romance of biomedical science, that almost any punishing
therapy must be somehow reasonable. I sn’t what happens, then, almost
like a romantic betrayal when medical logos has no reasonable explana-
tion to offer for our suffering?
Modern Medicine: Eros and the Planet Mars

here is no greater loss for a parent—no greater personal tragedy—than
T
the death of a child. Perri Klass writes from her experience as a pediatri-
cian about how this cruelest form of harmful violence, even if the causes
are natural, also ripples through surrounding lives and distributes its
violence in supra-dyadic confusions. Klass ends her collection of short
stories Love and Modern Medicine (2001) with the story of such a loss: an
episode in which, a fter the death of her six-month-old child, a grief-
stricken mother moves in with her half-sister.19 The grieving m other is
Deirdre, and the story is told by her unnamed half-sister, who is both the
narrator and, like Klass, a pediatrician. Deirdre’s daughter has recently
died from the nightmare condition that haunts both parents and pediat-
rics: sudden infant death syndrome.
Each year in the United States, about 3,500 infants die suddenly of no
obvious cause. About half these deaths—which cannot be explained after
investigation—are classified, retrospectively, as sudden unexpected in-
fant death (SUID) and sudden infant death syndrome (SIDS). Not-
knowing and the failure of rational explanations thus become an official
requirement for a posthumous diagnosis. In the United States SIDS is
the leading cause of death among infants aged one to twelve months,
although the overall rate of SIDS has declined since 1990. Further reduc-
tion of the risk remains an import ant public health priority, especially
in non-Hispanic black, American Indian, and Alaska Native popula-
tions, where the risk is disproportionately high.20 Deirdre, like many
parents, had focused her worries on the supposed dangers of childhood
inoculations—she continues to harangue her pediatrician half-sister on
this hot topic—but no reasonable risk-assessment could have adequately
prepared Deirdre for the sudden death of her healthy six-month-old
daughter. It is impossible, as Nassim Nicholas Taleb says, to protect our-
selves fully against the Black Swan.
266 T he D ilemmas
Every death alters the web of relationships that receives it, but the death
of a child can drive parents apart and destroy a marriage. It is an ominous
sign that we learn nothing about Deirdre’s absent software-engineer
husband. Deirdre—white, m iddle-class, glamorous, and financially
comfortable—never suspected the violence threatening her daughter from
within the brim or fat tail of the bell-shaped curve. Money, glamor, and
white, m iddle-class privilege in effect created an illusion of security;
meanwhile, not even the compassion evoked by the death of a child can
mend the edgy relationship between the two half-sisters, which has a
long history. The pediatrician-narrator never particularly liked her
more attractive half-sister, and eros has ratcheted up the sisterly strain.
Although they share the same father, Deirdre is the child of the father’s
favored, younger wife, while the narrator grew up with the older (“dif-
ficult”) ex-w ife. Deirdre now occupies a spare room on the third floor,
and—w ith two children and a radiologist husband to occupy her
concern—t he narrator has l ittle time and less medical wisdom to offer
her grieving half-sister. Why did the child die? Medical logos, in the
voice of the narrator, is reduced to a stammer: “No one knows. So many
theories. Respiratory. Central nervous system. Persistence of fetal hemo-
globin. Nobody knows” (LMM 178).
Medical logos runs on knowledge, so when facts and knowledge fail,
it is pretty much in the dark. Medical eros, on the other hand, is less hand-
icapped by not-k nowing, and it has resources to offer when biomedical
knowledge falls short. Rational answers—even when available—may
prove less important in medical trauma than explanations that help clarify
a surrounding field of emotion. Klass tells a story of absent fathers and of
estranged d aughters, a story of resentful loss and bitterness that runs gen-
erations deep. How deep? Nobody knows. Deirdre moves around the
house in her bathrobe like a restless ghost, with a faint odor of herbal tea
indicating not so much her presence as where she recently was. Life amid
absences goes on in the narrator’s house regardless, despite Deirdre’s
tragedy, despite not-k nowing. School projects are due, and thus the nar-
rator f aces an urgent need for craft store supplies. This annoying, everyday
need, she senses, is also what Deirdre and her lost d aughter have lost. She
knows, too, what an unthinkable moment it would be—awful beyond
comprehension—for a mother to reach into the crib one morning and find
a corpse. “I cannot walk my mind through it,” she reflects. “Love and
modern medicine, both useless” (LMM 182).
The uselessness of both love and modern medicine—eros and logos—
is a cold truth at the moment when a parent confronts the inexplicable
death of an infant; but total futility is not the end point for Klass’s narra-
tive. While logos cannot offer a rational answer, eros and the mysteries of
not-k nowing apparently hold the resources for an eventual repair. Do we
really understand how healing works? “Don’t ask me why I mount the
stairs to knock and invite Deirdre,” the narrator says as she prepares to
drive with her two children to the crafts shop. “Don’t ask me why she
comes. We belt ourselves into the front seat; the children click themselves
into the back” (LMM 180). Don’t ask, in colloquial conversation, means
there’s no rational explanation. It means, I don’t know why. It means, in
effect, nobody knows. So don’t ask. Nonetheless something has changed.
In the crafts store, one son has selected a pumpkin-sized Styrofoam ball
to serve as the planet Mars in his model of the solar system. Deirdre holds
the future planet Mars and then, unexpectedly, smiles. The narrator
notices: “She is tall and queenly and lovely in the Styrofoam aisle, lovely
especially when she smiles.” The narrator quotes her half-sister: “ ‘It
doesn’t weigh anything,’ she says” (LMM 182).
A weight has lifted, a burden has shifted, a change has occurred, both
in Deirdre and in the narrator. The facts have not changed. What has just
happened? Nobody knows. Deirdre’s smile remains enigmatic, maybe no
more than a Mona Lisa trace with unknowable origins, but the narrator’s
change is more evident. Her dislike for her unwelcome, grief-haunted,
glamorous half-sister has altered. The burden of their history of
bad feeling and the long drama involving f athers, daughters, and step
daughters—a drama reaching back as far as Greek tragedy and the House
of Atreus—at least momentarily lifts its dark shadow. The enigmatic
concluding line takes us inside the narrator’s consciousness—into the
inner life as gently inflected by eros—as she reflects on the statement that
for Deirdre was a quite literal remark that the large Styrofoam ball doesn’t
weigh anything: “But it will be a planet,” says the narrator, “when we’re
done with it.”
Love doesn’t weigh anything either—it has few technologies at its
disposal, if you discount sex toys—but it includes, even amid its own
268 T he D ilemmas
history of failures, the possibilities of inexplicable transformations that

can repair the damage of harmful violence. Mars, the red planet, named
for the god of war, is h ere no match for Eros.
The inexplicable failures and harm of eros, as unpredictable as the
sudden death of an infant child, imply also, as Klass suggests, the pos-
sibility of inexplicable benefits. The same, in fairness, must be said for
medical logos. Love and modern medicine are both capable of g reat
harms—and great good. Every culture seems to need its doctors as well
as its poets. Klass’s narrative of f amily trauma does not lend itself to a sum-
marizing interpretation, as if it contains a hidden moral lesson, but rather
it honors the incomprehension, heartbreak, and turmoil that can follow
the sudden death of an infant, and it honors, too, the possibilities for in-
explicable change: a change as improbable and weightless as a craft store
Styrofoam ball transformed into the planet Mars. Not-k nowing can be a
source of anguish when rational answers are unavailable, but it can also
prove a matrix of healing possibilities when eros mysteriously helps re-
constitute the bonds that eros can also, just as inexplicably, rip apart.
Disappearances: Eros and Loss

Eros specializes in material, sensuous appearances: what we can touch,
see, or feel, like a lover’s caress. Eroticism, even while it deeply engages
the inner life, entangles us in a world of surfaces. The dilemma in sur-
face appearances, of course, is that traditions of dualism reaching back
to Plato encourage us to believe that surfaces and appearances are inher-
ently deceptive. “I used to believe that truth was found only below the
surface of t hings,” writes Terry Tempest Williams. “Underground. I was
a disciple of depth. What was hidden was what I desired.” Desire, in this
effort to probe beneath the surface, seeks its object in what cannot be seen
or touched or felt. Then something changed for Williams in her under-
standing of desire: a change no doubt reflected in her barefoot trek over
hot desert sandstone. “I am interested now,” she continues, revising her
desires in favor of earthly surfaces and of material appearances, “in what
my eyes can see, what my fingers can touch, what my hand can know by
moving slowly across flesh, or fur, or feathers, or stone.”21
The problem with appearances—as I make at first daily and then weekly
journeys to visit Ruth—is that they bundle so tightly with disappearances.
Sensory knowledge (what the eye can see and the hand can know) is not
only limited, as a skeptical empiricist such as Taleb w ill insist, but also
favors appearances. Eros is a connoisseur of sensuous appearances, of
course. The hand moving slowly across flesh, fur, feathers, or stone does
not seek hidden depths or a deferred knowledge, mediated through sur-
faces, but rather immediate contact: contact that initiates an erotic com-
merce with the inner life of consciousness. Disappearances, however,
are the flip-side of sensuous, tactile, material, earthly appearances. They
are the still-visible traces of sensuous appearances on their way out.
All phenomena are, etymologically, appearances. The English words
phenomenon and photo both derive from the Greek root phainein, meaning
to show, to shine, to appear. All material t hings, all phenomena, viewed
through the lens of geological time, are appearances that prove insepa-
rable from their ultimate disappearances. Nothing gold can stay, and
nothing not-gold can stay. The linkage with disappearances is also an
everyday affair. Pop stars appear, then disappear. An actor appears on-
stage, then disappears offstage. An infant is born, appears, and then dis
appears via SIDS. This movement from appearance to disappearance is
not linked to dualities of surface and of depth, or of deception and truth.
The actor’s appearance onstage—playing the role of Abraham Lincoln—
is neither true nor false, neither real nor unreal: it simply is. So, too, the
disappearance offstage. What matters here is the shuttling movement
between appearance and disappearance. Whatever appears—flesh, fur,
feathers, stone—is equally subject to disappearance. Eros could claim this
fact as a primal rule or condition of desire, citing various laws of physics
in support. My dilemma arises b ecause, while appearances often bring
joy, as expressed in the Zuñi ceremony to welcome the new eight-day in-
fant into the world of daylight, disappearances more often than not bring
regret, sadness, grief, or even the deepening hurt that ultimately corrodes
body and spirit.
Disappearances can be gradual, lingering, and almost imperceptible—
like the slow fade of disappearing ink—or fast and abrupt. W hether fast
or slow, abrupt or gradual, the act of disappearing is a process, and at least
270 T he D ilemmas
to keep my own thoughts and usage from complete unraveling into con-
fusion, I want to distinguish between disappearance as a process and van-
ishment as a fait accompli. What has vanished is gone; what disappears
is still in the process of going away. This artificial distinction matters
here because I am not concerned with vanishment but rather with the in-
between state when an appearance (flesh, fur, feathers, stone) enters into
the process of dis-appearing. Dis-appearance (hyphenated to indicate its
specialized usage) is the often-extended condition in which people, places,
and t hings (the rich, sensuous world of appearances) enter into the lethal
slow dance toward vanishment, akin to the gradual wearing away of a gla-
cier, which geologists call ablation. At some point, ablation ends and the
glacier is gone, replaced by the boulder-strewn rubble it crushed and car-
ried during its slow disappearance into vanishment. The dinosaurs have
vanished; they are no longer dis-appearing. Physicists contend that matter
and energy shuttle endlessly back and forth, minus a small sacrifice to en-
tropy. When people, places, and t hings vanish, however, an irreversible
loss occurs. No more shuttling back and forth. Dis-appearance, in this
sense, resembles a way station on the fast track to vanishment and ir-
reversible loss. Eros knows all about dis-appearance. I now see Ruth
entering into this extended process of dis-appearing.
As Alzheimer’s disease took its awful, gradual toll, its relentless abla-
tion of mind and of body, I never fully grasped what was happening right
before my eyes, in the sensory world of surfaces and of appearances. I
could still touch and feel and see Ruth. She was still there. Then I en-
countered Anne Carson’s strange book Nox (2009).22 Nox is Latin for
night, and night in Carson’s book is not the counterpart of day but
rather the pagan realm of ultimate darkness into which p eople, places, and
t hings—a ll sensory appearances—u ltimately dis-appear in their slide
toward irreversible vanishment.
Carson in her writings regularly circles back to eros. Eros the Bitter-
sweet (1986), her brilliant first book, explored the triangular geometry of
desire: a three-sided figure comprising the lover, the beloved, and the gap
or obstacle that separates them. She indirectly returns to eros and to the
triangle of desire in her boundary-crossing book Nox, if book is r eally the
right word; half the text (each left-hand or verso page) contains her schol-
arly gloss on each word in a famous elegy by the Roman erotic poet
Catullus. The elegy by Catullus, on the death of his b rother, ends with
the famous lines ave atque vale (hail and farewell). Nox, in the recto half
of the text, constitutes an extended memorial or “epitaph” (as Carson once
calls it) on the death of her brother Michael. Nox thus connects two lost
brothers in parallel explorations. One exploration resembles fragments
assembled from a classical dictionary; the other resembles a scrapbook
packed with photos, memorabilia, and brief meditations on loss. Nox, with
its collage-like shards, occupies a sort of semantic twilight—a no-man’s-
land of meaning—in which clarities appear and disappear, as new mys-
teries emerge. It immerses the reader in an experience of not-k nowing—
in some sense an experience of flickering darkness that almost reverses
the situation of visitors to Roden Crater—whereby not-k nowing emerges
as a more or less steady state that no effort of logic or reason or scholar-
ship can fully overcome. It is the fertile darkness from which basic ques-
tions arise. Questions, for the author, about time, desire, history, and
writing. For readers, questions may begin with the book’s strange and
resistant material appearance.
Multiple dis-appearances are what engage Carson inside a book that,
as you hold it in your hands, arrives in a grey rectangular box—“the color
of a rainy day,” as New York Times reviewer Ben Ratliff further describes
its appearance.23 The first dis-appearance, once you open the box, is the
standard codex form of ordinary books: separate pages bound between
hard or soft covers. Instead, inside a box with the look of a small, fat casket
the reader encounters a single sheet of stiff continuous accordion-folded
paper. (Like a winding sheet?) Nox, then, from the moment of its initial
appearance, engages in strategies that suggest a book in the process of dis-
appearing. The codex, of course, replaced the classical scrolls on which
the poems of Catullus once circulated. Scrolls haven’t vanished, but they
are fast disappearing outside special collections and religious rituals,
much as codex books are now disappearing and may soon survive mainly
in niche markets. Digital, electronic publication is now transforming not
only the appearance of books but also the social and material environ-
ment within which reading occurs—maybe even changing the brain-based
neurobiology of reading. The online retail g iant Amazon reported in 2010
that its customers were buying bestsellers in e-book form by a ratio of two
to one over print.24 In medicine and science, where timely updates are
272 T he D ilemmas
crucial to research and to treatment, electronic publication is superior to

traditional print media. Nox makes its appearance in the world as an ex-
tremely irregular book, almost a nonbook, a book in which Michael’s
death is the focus for contemplating other, more public instances of dis-
appearing, and a book that also stages a resistance to the vanishment of
books. It simply cannot be duplicated or simulated by a digital version.
Nox resists the vanishment of books especially through a material ap-
pearance as sensuous as what the hand encounters moving slowly across
flesh, fur, feathers, or stone. Readers must deal with Nox as a thing-like
object irreducible to its semantic content, which in any case is interrup-
tive and at times deeply obscure, like an ancient manuscript riddled with
lacunae. The single accordion-folded sheet seems to put up resistance just
leaving its box, and we encounter a book so strangely resistant that, by
design, it is permanently unopenable. You can open up the box, that is,
but the text and its meaning defeat the normal processes of opening up.
Although we have learned how to “scroll up” and “scroll down” virtual
pages on e-readers, in a forgotten reference to classical scrolls, nothing is
smooth or familiar about reading Nox. Nox reshapes the experience of
reading as a jagged process of radical estrangement. The reassurances of
linear form disappear like the chain bookstores that once seemed a sure-
bet growth stock. The estrangement gets even stranger as readers unfold
the accordion-pleated text and encounter the photo-facsimile of an orig-
inal scrapbook that Carson, presumably, once put together with her own
hands. Narrative threads emerge, vanish, reappear. Images blur. Pictures
block text. Data turns indecipherable. It is easy to get lost. Nox in its dense
material appearance transforms the act of reading into a continuous
negotiation with dis-appearances of meaning, dis-appearances of narra-
tive, and dis-appearances of what once looked like solid facts.
Carson is a specialist in dis-appearances, and dis-appearances are a
state that she invests with almost philosophical significance, albeit rooted
in everyday experience. Think of a lover watching the taillights disappear
as the beloved drives off into the night, forever. Dis-appearance marks a
transitional moment—fast or slow—in the passage from presence to ab-
sence. It is similar to the state that Carson elsewhere calls “unlost,” a
coinage that she applies to an ancient individual known today (in a brief
epitaph written by Simonides of Keos) as Spinther. “Spinther,” Carson
observes, “would have vanished utterly save for a single Simonidean line
of verse.”25 Total vanishment—gone without a trace—is oblivion, with not
even a buried dinosaur fossil to let us know they were here. Dis-appearance,
by contrast, stays just this side of vanishment, identified mainly by the
traces that it leaves in its passage toward nothingness. The survival of
the unlost is about as thin as appearances can get, but it is not nothing.
It encompasses the twilight remains of Spinther (a name you can grow
fond of) or the extended moments when a long marriage breaks apart.
Dis-appearance always traffics with the border where, not far off, you
can glimpse the black night of vanishment. The lost brother of Catullus
remains a total blank, as Carson explains in Nox; without even a name,
he is completely unknown except that Catullus addresses him once (as
“brother”) in a poem that almost miraculously survived the destruction
of multiple ancient manuscripts. Her deceased b rother Michael faces a re-
alistic prospect of vanishment but for whatever resistance his intellectual
writer / sister (whom he called “pinhead”) can mount in fending off
oblivion.
“Every time a poet writes a poem,” according to Carson, “he is asking
the question, Do words hold good: And the answer has to be yes.”26 Carson,
herself a poet, must ask if her words “hold good”—but what does the
question mean? The idiom “holding good” implies that something re-
mains valid, true, or in force, like a promise made yesterday that holds
good today. Illness, like other forms of trauma, can drain words of their
currency. “What my m other and I shared w
ere words,” writes David Rieff,
acknowledging their kinship as writers, “and yet now they felt all but
valueless—like Confederate dollars or Soviet roubles.”27 Words, like cur-
rencies, can fail to hold good; words, too, are subject to dis-appearance.
Dis-appearance, as theorist Paul Virilio argues, takes on special sig-
nificance in modern societies with their radical new emphasis on speed.
The universe holds nothing faster than a photon—which is fast replacing
ink as the medium of literary production—and Virilio argues that some
change occurs so rapidly that we experience it without knowing. Hun-
dreds of dis-appearances occur daily, he writes, and “most often pass
completely unnoticed.”28 Who has time or desire to mourn the dis-
appearance of typewriters, letters home, virginity until marriage, drive-
in theaters, eight-track tape decks, smallpox, nation states, 1956 Chevys,
274 T he D ilemmas
Fred Astaire movies, or the young Elvis Presley? The loss happens—loss
accelerated by the planned obsolescence incorporated into the design of
modern commodities—but minus the knowledge and the emotional
experience of loss. It thus creates what Virilio calls our “epileptic con-
sciousness”: the jolting, modern experience of t hings dis-appearing right
before our eyes—chain stores and national brands, former lovers, on-
line postings, old friends moved off the grid or dead—minus a conscious
experience of loss. Like Carson’s brother, Michael. Just gone.
Death is a dis-appearance but not necessarily, for Carson, total van-
ishment. Nox—a title just three letters short of vanishment—confronts
death and loss without the consolation typical in elegies. Her title recalls
another famous poem by Catullus in which night signifies the bleak noth-
ingness that follows death: nox est perpetua una dormienda. Dormienda
(from dormire, to sleep) means not just a sleeping but a future-perfect sleep
that must be slept. Death for Catullus is no gentle good-night. It is a pagan,
endless night that must be slept all the way through. Nox, similarly, is no
Tennysonian journey through loss and grief to a wild-bells Christmas re-
covery. It is a sober nonelegiac struggle against vanishment carried out
in an improbable ragtag mosaic-like boxed memorial constructed of verbal
scraps and visual shards. Its saving grace, beyond a resistance to vanish-
ment, is the indirect presence of eros.
“What is erotic about reading (or writing),” as Carson puts it in a lit-
erary version of the geometry of desire, “is the play of imagination called
forth in the space between you and your object of knowledge.”29 Eros, in
Carson’s work, carries readers into a space where they are immersed in
the fertile darkness of not-k nowing, where imagination can play its cre-
ative role and from which resolutions may emerge, much as in the woods
outside Athens. Eros thrives precisely in the gaps and absences of not-
knowing where reason flounders, where desire enlists multiple cognitive
and emotional powers—not analytical reason alone—to bear upon expe-
rience that cannot always be quantified and measured, like the death of a
brother. The power of eros can be jolting, difficult, or even heartbreaking,
much like the epileptic consciousness of continuous dis-appearances, but
eros also inhabits regions of the inner life where meanings and knowledge
matter less than imaginative intensities and emotions. The f ree play of
imagination that reading calls forth can offer the same erotic solace—far
distant from sexual transport—that others may find in a network of sup-

portive friends or in the fellowship of a local church congregation. Such
networks, research shows, are often crucial to the health and long-term
survival of individuals who pass through traumatic loss. Reading puts us
in contact, at the very least, with the voices of writers and fictional char-
acters. My mother, in the months after my father died of congestive heart
failure, consumed books—sometimes as many as one book per day—as
if they w ere the only sustenance that kept her inner life from wasting away
into nothingness.
Eros for Carson—a writer of formidable intelligence—is inseparable
from reading and from thought. Socrates, after all, represents her ideal
of what she calls the passionate “electrifications” of eros. Socrates exem-
plifies an erotic idea not b ecause of his specific thoughts—not even because
eros is the only subject he claimed to know anything about—but because
for Carson the act of thinking is erotic. As she says of Socrates, who car-
ried on his incessant questioning in a predominately oral culture and with
a personal distrust of writing: “He loved, that is, the process of coming
to know.”30 Coming-to-k now, as an exploratory process, differs from
knowing much as it remains distinct even from the knowledge that it seeks
to produce. “In any act of thinking, the mind must reach across this space
between known and unknown, linking one to the other but also keeping
visible their difference,” Carson writes. “It is an erotic space.”31
The erotic space of coming-to-know is inseparable, in the modern
world, from the erotic space of reading, which is also, inescapably for the
reader, a space occupied with the process of coming-to-k now. What
Carson once described as an “erotics of reading,” then, does not refer to
the subgenre of erotica but rather to the internal process in which coming-
to-k now makes its crucial appearances. Appearances, for Carson, also
hold an erotic power. Her husband, Robert Currie, once gave an interview
account of their first meeting and subsequent courtship, but Carson in-
tervened to set the record straight—in her own distinctive style: “There
you w ere, and then you w ere there more.”32 The t here-more-ness, in this
strange account, might stand as another version of the erotic thickening
of appearances that occur in coming-to-k now. Currie appears; he does
not dis-appear; then he keeps on appearing. Nox mounts an erotic literary
resistance to her b rother’s dis-appearances as Carson pieces together
276 T he D ilemmas
scraps of memory and fragments of ephemerae. Michael is dis-appearing,

no question, and he is daily dis-appearing more, but Carson deploys a
writer’s resources and the power of eros in an effort to find the words that
will fend off nox and his utter vanishment.
Sisters and b rothers possess a unique bond. Unlike husbands and
wives, unlike adult partners of any gender, they share a childhood that
no one else completely understands or shares. They know each other in
ways that no other person alive knows them, in ways that words c an’t ex-
press because much of the experience of children takes place outside
language, in the not-k nown unspoken dimensions of feeling. The death
of a b rother or the death of a s ister takes away this very special part of
us—part of our identity, part of our past, no doubt part of our possible
futures. When they dis-appear, something has vanished that cannot be
replaced, only mourned. The ultimate question for Carson, immersed as
a writer in a field of language, is will her words hold good? Can eros, with
its electrifications and not-k nowing, successfully fend off vanishment
and oblivion in a scrapbook-style “epitaph” that transforms loss into
an intermittent, jagged, epileptic, one-reader-at-a-t ime, Spinther-l ike
dis-appearing?
On Not-K nowing: Flute’s Solo

The spark of life for Ruth has gone, even though her body continues
to function. Bodily function now is the opposite of health. She is dis-
appearing, slowly but surely, and the spark—once so visi ble that you
could see it in her eyes—has completely vanished. Jean-Do Bauby knew
that he was fading away; it added to the terror of locked-in syndrome. I am
at least grateful that Ruth is now spared the consciousness of what Alz
heimer’s disease is relentlessly stripping away. That terror has passed to
me. The spark may be what I miss most as Ruth’s body—shifted from
bed to wheelchair and back to bed—continues to decline. I recall how Mi-
chel Foucault identified “thinking” as the distinctive human function
and how he celebrated the revolutionary moment (Carson might call it
erotic) when we witness the birth of new ideas in the bursting outward of
their force: “not in books expressing them, but in events manifesting this
force, in struggles carried on around ideas, for or against them.”33 Events
are appearances—created by individuals caught up within still-unstable

ideas and improvised struggles—as impassioned thinking and action
begin to break away from the inchoate realm of the not-k nown. Isn’t
love, too, in its origins but also in its changes, not just a feeling but an
action? A disruptive event, a bursting outward, an impassioned, im-
provised creation in which bodies and minds, fully present and fully
engaged, make their indelible appearances? Love, too, however, can
move toward the condition of dis-appearances. I too am resisting a
form of vanishment. Husbands and wives (like lovers of every descrip-
tion) may not share a childhood but they have entered together into the
unspoken mysteries of eros that always lie somewhere beyond the
reach of language.
The spark of life, as I saw it in Ruth’s eyes, was wide open to desire.
The events she managed to find every day that made her happy found
expression in her bodily life as well as in her inner life. Desire adds a
brilliance that knowledge and power, for all their social uses, cannot re-
produce, and sometimes the disruptive genius of eros proves most re-
vealing in comic moments, as the coming-to-know and the bursting forth
of events skids toward sheer chaos and the primal pleasures of not-
knowing. A Midsummer Night’s Dream, in the 1999 film version directed
by Michael Hoffman, offers a faithful version of Shakespeare’s long
night’s journey into erotic confusion as all the lovers, including the king
and queen of the fairies, experience the power of eros to erode self-
knowledge and to loosen rational control. A luminous cinematic moment
(unauthorized by Shakespeare’s text) occurs, however, in the famous
concluding play-within-a-play, as Bottom the Weaver and his Athenian
tradesmen accomplices offer a performance of the highbrow Ovidian
tragedy Pyramus and Thisbe.
Pyramus and Thisbe, before Bottom and his pals reduce it to farce, is
a serious play about desire in which tragic events spin out of control,
leading to a mistaken suicide. The Ovidian high tragedy spins even fur-
ther out of control, however, as the amateur, working-class actors (who
know next to nothing about the theater) blunder on. Their earnest but
laughable performance not only exposes their not-k nowing to ridicule
but also manages to convey their own endearing ignorance of their
not-k nowing, as they enter into this alien enterprise of the theater as an
278 T he D ilemmas
expression of their desire to honor the duke’s wedding. The clumsiness

of the performance continues to spark smug ridicule and unintended
merriment among the sophisticated courtiers in audience—until the film
takes leave of Shakespeare’s text and makes a sudden turn. Bottom as
Pyramus has just killed himself, with ham-l ike dying histrionics, and
Flute the Bellows-Mender, wearing a long wig as the romantic heroine
Thisbe and mimicking a woman’s voice in his squeaky falsetto, bends
over the apparently lifeless body. Then it happens. Suddenly the high-
flown diction stops. Flute takes off his wig and lowers his register to speak
in his natur al voice. Why? In his ignorance of theater and its make-
believe, Flute seems to believe that the theatrical dead body lying before
him (the imitation of a corpse) is not Pyramus but Bottom. Worse, it is not
Bottom playing dead. (“Asleep, my love?” asks Flute as Thisby. “What,
dead, my dove?”)34 It is Flute’s bosom friend, Bottom-the-Weaver, truly
dead.
Flute’s blunder and confusion mark a rare moment—amid the pretense
and folderol surrounding the duke’s marriage ceremony—when eros and
not-knowing somehow cross over to make contact with truth or rightness.
Flute’s knowledge may be flawed or incorrect (it surely is), but his emo-
tion is true. This is, after all, the mystery of the theater. Somehow all the
artifice on stage can produce real emotions in the audience. Flute, in his
not-k nowing, cuts through all the theatrical make-believe; his emotion is
real even if it is based on a m istake or not-k nowing. In this moment of
authentic emotion, he indirectly exposes the falsity of the fawning court-
iers and self-satisfied aristocrats in the audience, as they play out their
designated social roles, witty, charming, or deferential. Only the women
seem to get it. The faces of several brides-to-be, unlike their prospective
grooms, register an uneasy sense that something odd is g oing on. Social
actresses almost from birth, bred to play their subordinate roles in the
reason-dominated male world, the w omen perhaps intuitively sense the
unexpected arrival of a moment of truth when the masks drop. It is
almost as if death—cold as a winter wind slicing through the precoital
midsummer hall—has made its appearance, and Flute alone (in his not-
knowing) knows.
Conclusion
Altered States
Eros—the divine principle of desire and love—surges from our deepest
evolutionary roots: the urge to create, to generate new life, to regenerate
the species. It is the creative energy immanent in us as living beings.
Stephen Nachmanovitch, Free Play (1990)
T he biggest question that occupies me in this purposely inconclu-

sive and open-ended conclusion is So what? What good does it do to
explore distinctions between medical eros and medical logos? What real
work can medical eros accomplish in the world? How can we turn its
advantages—respectfully and without reducing them to a stealth agent of
instrumental reason—to practical human use? The best way I can ad-
dress these rude questions is to return to desire. Human health and ill-
ness are fundamentally altered by the dynamics of desire, for better or for
worse. One touchstone example is the history of tobacco, with its legacy
of lung cancer.
The desire for profit as much as the desire for tobacco is what drove
the triangular Atlantic slave trade. In a simplified version, European com-
panies traded guns and factory goods in Africa for slaves, then they sold
the African slaves in Virginia for tobacco and cotton, and then they sold
Virginia tobacco and cotton in Europe, pocketing a large profit at each
279
280 C o nclusi o n
transaction. Twelve million West African black slaves—and likely more—

were brutalized in this triangle of desire, and t oday big tobacco compa-
nies are still in business, after spinning off a few charitable foundations,
with continuing damage to global human health. Lung cancer, then, not
to mention slavery, has everything to do with desire.
Similar stories could be told about modern industries where desire is
not simply a m atter of individual psychology—I want a new car—but a
widespread consumer preference stimulated by well-designed ads, with
less than primary concern for the related personal and environmental
damage that correlates directly with accidents, disease, debilities, and (in
the case of some drugs) birth defects.1 Medical eros is concerned not only
with individual desires, especially because we must accept responsibility
for our own desire-driven choices, but also with larger, social, health-
related effects of desire as desire is built into late consumer capitalism and
the systems of contemporary health care.
Knowledge—the home province of medical logos—is, alone, not enough
to change behavior. For over half a century it failed to change medical under
treatment for pain. The U.S. Surgeon General imprints every pack of
cigarettes with the warning that cigarette smoke is harmful to your health.
Cigarette smoking is now well-documented to cause not only lung cancer
but also cancers of the esophagus, larynx, mouth, throat, kidney, bladder,
pancreas, stomach, cervix, and blood, in addition to more indirect con-
tributions to heart disease, stroke, aortic aneurysm, chronic obstructive
pulmonary disease, asthma, hip fractures, and cataracts.2 Knowledge
alone seems easy to ignore, and reason is not always effective in changing
behavior, especially if corporate profits are keyed to sustaining the status
quo. Knowledge, as medical eros would claim, is most effective when it
engages desire, such as the desire for tobacco or the desire for clean air,
and the goal of enhanced public health offers a powerf ul incentive for
medical logos and medical eros to work together as complements when
desire and knowledge can combine forces for better results.
It is important to say here, if it is not already obvious, that medical eros
and medical logos are a manner of speaking. They offer unfamiliar terms
and broad concepts with which to think about the terrain that moves,
sometimes visibly, sometimes invisibly, beneath them. Certain important
personal or national conversations do not occur mainly b ecause we lack
A ltered S tates 281
an enabling vocabulary. Race, for example, never gets the conversation

that leaders keep saying needs to happen, partly because Americans are
tongue-tied without an enabling vocabulary. The point is not to enshrine
a certain manner of speaking. Enabling vocabularies may self-destruct or
inspire replacements once the conversation gets u nder way and generates
its own lexicon. What m atters most is the conversation.
Medical eros and medical logos are not what philosophers call “natural
kinds”—like chemical elements—inscribed in the nature of t hings. They
are also not figures in a grand narrative that seeks to explain the entire
field of health and illness. They are, for certain, not boxes into which we
can stuff whatever falls out of the medicine cabinet or the bestseller list.
The real confinement belongs to a total commitment to the molecular
gaze that boxes in our understanding of illness and health so as to ne-
glect their cultural and personal dimensions. Medical eros and medical
logos are what icebreakers are to ice. They offer means to unblock stasis
and to start the flow of conversations that we urgently need as individ-
uals confronting illness and as cultures dealing with health-care systems
and health-care policies. It is a conversation that we can no longer afford
to neglect. Nor can we afford to neglect the claims of human desire.
Desire, as we have seen, encompasses serious dilemmas, including
some dilemmas that it creates through its tendency t oward transgression.
Three dilemmas above all seem important to single out. First, desire can
be misplaced. Misplaced here doesn’t mean lost, as in misplaced car keys,
but rather misplacement acknowledges that we can desire persons, ob-
jects, or experiences that are directly or indirectly harmful, from cigarette
smoke to stony-hearted lovers. Second, desire can be alienated. The alien-
ation of desire occurs by means of a complex psychodynamics through
which assertions of desire (I want to be a doctor) do not express our own
desire but the desire of o thers, as when it is r eally the parents who want
their son or daughter to enter medicine. Cultures, religions, ideologies,
or simply an overbearing individual conscience can encourage us to
alienate our own individual desires in preference to the desire of the other.
(Certain schools of psychoanalysis would capitalize Other in acknowl-
edgement that all desire proceeds from the Unconscious.) Third, and
most important h ere, desire can be hijacked. Hijacked desire is desire put
under the control of a usurping power, comparable to terrorists taking
282 C o nclusi o n
over command of a jetliner. Addiction is the most serious individual and

social instance of hijacked desire. In addiction, whatever still-unknown
neurobiological network it is that underwrites desire gets taken over (or
overridden) by the overlapping but separate neurobiology of addiction.
The ravaged health and shattered relationships due to addiction are as
devastating as bombed-out scenes of a civil war.
“Bring me my Bow of burning gold,” wrote William Blake in the voice
of a biblical prophet. “Bring me my Arrows of desire.”3 The arrows of
desire—not identical with the feathered shafts in Cupid’s quiver—are what
drove Blake to display his passionate opposition to the then-legal British
slave trade. The arrows of desire are what drove his censure of a political
status quo in which palace walls were stained with blood and in which
churches recoiled from prostitutes created by an unjust social system and
by a sanctimonious state religion. They are not merely instruments of pro-
test in bygone times: “the only way to do great work,” said Steve Jobs,
acclaimed among the most hugely successful, visionary entrepreneurs
of the modern era, “is to love what you do.”4 The arrows of desire are
certified hazardous, then, but they also can drive personal and cultural
change. Nowhere is this double-edged power more evident than in the
human impulse to seek various forms of self-transcendence: religious,
philosophical, or biochemical. Blake, immersed in his own private mythic
cosmos, saw desire as necessary to lead us beyond sensory knowledge and
beyond analytical reason to altered and elevated states of consciousness
here and now. Liberated desire, for Blake, is what will lead us to grasp the
hidden truths accessible only to the expanded mind. “If the doors of per-
ception w
ere cleansed,” as he wrote in a famous, much-quoted passage
from The Marriage of Heaven and Hell (1789), “every thing would appear
to man as it is: infinite.”5
Altered states of consciousness are at times such beneficial, benign, spir-

itual, erotic, liberating, or simply uncanny conditions—like Joan Didion’s
year of magical thinking—that they need to be disassociated from statis-
tics on drug addiction. Mike Jay, in High Society: The Central Role of
Mind-Altering Drugs in History, Science and Culture (2010), provides a
fascinating historical account of drug use across cultures and times dem-
onstrating that the desire to alter human consciousness has deep roots,
doubtless in the brain as well as in social arrangements.6 Scientific and

social experiments with medical marijuana encourage the need to distin-
guish between mood-altering substances (with possible therapeutic
value) and mind-altering hallucinogens or recreational narcotics. Extreme
loneliness, especially among the elderly, might count as an undesired state
of altered consciousness, which, in its dire effects, may well merit med-
ical or paramedical attention. The crucial point is that a desire for altered
states of consciousness does not guarantee liberation—freedom from the
mind-forged shackles of our limited, ordinary perception—especially if
such desires end in drug addiction and alcoholism.
Desire can surely imprison as well as liberate, and substance abuse has
established its position (despite documented historical lulls) as a distinc-
tive contemporary crisis, fueled in part by an unprecedented interna-
tional traffic in illegal drugs. Emergency rooms, treatment centers, po-
lice departments, and prisons absorb much of the trauma and damage.
Their stories make for compelling television drama and supply a pipeline
of bestselling memoirs about addiction and recovery, but cold numbers
describe an equally dramatic calamity. The National Institute on Drug
Abuse, an agency within the National Institutes of Health, reports in
2015 that the overall annual cost of illicit drugs—in health-care expenses
alone—runs to $11 billion.7 Other addictive substances run the tab still
higher. The annual health-care costs from alcohol are $30 billion, and
tobacco tops the list with annual health-care costs of $96 billion. An In-
ternet search of comparative net worth reveals that the combined total cost
of $137 billion is enough cash to buy, let’s say, Cuba or Morocco.8
The personal costs of addictive desire are of course incalculable when
we consider lives lost, families destroyed, and c hildren abused or aban-
doned. Heroin overdoses for the year 2011, according to the National
Center on Health Statistics, resulted in 4,397 deaths. Cocaine overdoses
resulted in 4,681 deaths, and benzodiazepine overdoses resulted in 6,872
deaths. The largest number of overdose deaths came from opioid pain re-
lievers and synthetic narcotics: 16,917.9 Is the drug crisis resolving? Not
exactly. Deaths from drug overdoses in the decade between 2001 and 2011
increased threefold. Such numbers make melancholy reading, but so do
the daily news stories about local drug busts and international drug king-
pins. None of this carnage is possible without the arrows of human
284 C o nclusi o n
desire—misplaced, alienated, or outright hijacked—and the neurobiology

of addiction. Medical logos has tools to address the neurobiology of ad-
diction. An understanding of eros, it would seem, puts us in a better po-
sition to deal with a crisis that owes much of its force and its collateral
damage to eros.
One bright California morning in 1953 the distinguished British writer
Aldous Huxley dissolved four-tenths of a gram of mescaline in a glass of
water, swallowed, and sat down to wait for the results.10 His wait took
place long before epidemiologists began to tote up the disheartening sta-
tistics on addiction, before the Haight-Ashbury drug scene, before Harvard
professor Timothy Leary’s LSD-inspired call to “turn on, tune in, drop
out,” before even the legendary extravaganzas at Woodstock and
Altamont. Numerous modern intellectuals, including a loose confedera-
tion of existentialist philosophers, had been trying to lay hands on mes-
caline; even Jean-Paul Sartre conducted a physician-g uided psychedelic
experiment, although all he saw on his trip was “a hellish crew of snakes,
fish, vultures, toads, beetles and crustaceans,” creatures who then
followed him around for months.11 Mescaline is a powerf ul hallucinogen,
and Huxley had long nourished questions about mystics, artists, and
visionaries that he felt mescaline might let him address. His brief 1953
encounter with altered consciousness commenced, as he points out, under
supervision and in the spirit of a rogue scientific experiment, much like
William Morton’s self-experiments with the anesthetic properties of
ether. Huxley published the results of his May morning research in a
fascinating l ittle book that he titled, a fter William Blake, The Doors of
Perception (1954).
Huxley’s experiment did not go as anticipated. Previous research had
led him to believe that mescaline would transport him to an inner world
of fantastic visions, something like a Blakean vista of mythic figures
striding across star-strewn cosmic landscapes, “But what I had expected,”
he reports, “did not happen” (DP 14–15). Mescaline did not open up an
interior realm of subjective vision or of hidden truths. The drug, instead,
totally altered his perception of the external environment. The room
where he awaited the results of his hallucinogen cocktail, for example,
contained a vase with three colorful, oddly matched flowers. “I was not
looking now at an unusual flower arrangement,” he writes describing his
mescaline-inspired response. “I was seeing what Adam had seen on the

morning of his creation—the miracle, moment by moment, of naked ex-
istence” (DP 17). Adam’s vision on the morning of creation, as Huxley
imagines it, was like experiencing the revelation of a w hole new world.
Familiar objects shone with a transformed radiance. Naked existence, as
a description of what mescaline revealed, comes close to what philoso
phers and theologians mean by being: a state stripped bare of all human
interpretation and cultural baggage, when existence seems to stand re-
vealed, without mediation, in its basic truth or untouched reality.
His altered state of consciousness led Huxley to surprising intensities
and to equally surprising disinterest. Color seemed so fresh, brilliant, and
hyperintensified as to feel almost overwhelming. The familiar books in
his study took on new life: “Like the flowers, they glowed, when I looked
at them, with brighter colors, a profounder significance. Red books, like
rubies; emerald books; books bound in white jade; books of agate; of aqua-
marine, of yellow topaz; lapis lazuli books whose color was so intense, so
intrinsically meaningful, that they seemed to be on the point of leaving
the shelves to thrust themselves more insistently on my attention” (DP 19).
Meaningfulness in this altered state is somehow separated from meaning,
since the conscious meaning-making processes of reason, logic, and
ordinary cognition have lost relevance. Objects simply radiate a mystical
significance as self-evident as their colors. What surprised him, however,
along with his intensified awareness of external objects, was a simultaneous
and profound disinterest in h uman beings, including himself. “For per-
sons are selves,” as he wrote about this odd change in perception, “and,
in one respect at least, I was now a Not-self, simult aneously perceiving
and being the Not-self of the things around me” (DP 35). Language
bends nearly to the breaking point of inexpressibility under the burden
of this new experience of absent selfhood. As if in a mirror, mescaline
reflected his own image as, paradoxically, a “new-born Not-self.” This
is a very unusual imagery of rebirth in which his new noninterest in
human beings extended to a form of self-erasure. His pants commanded
more attention than his ego. Fully aware of the Blakean allusions, he
describes sitting in his study surrounded by material objects that in-
spired only a desire for the solitude of selfless and immaterial immensi-
ties: “I longed to be left alone with Eternity in a flower, Infinity in four
286 C o nclusi o n
chair legs and the Absolute in the folds of a pair of flannel trousers!”
(DP 35–36).
We know—from the modern history of substance abuse—where a de-
sire for altered consciousness can take individuals who are less cautious
than Huxley and less scientifically inclined, even if some may be equally
well-read in Blakean texts and equally well-schooled in Eastern religious
traditions. The Not-self for Huxley h adn’t completely lost touch with his
personal and professional status as a successful writer in his private study
wearing flannel pants, and his personal safety net (during what is almost
a controlled experiment) certainly sets him apart from people who turn
to drugs in a social context of poverty, squalor, racism, and hopelessness.
A temporary relaxation of the boundaries of the self—boundaries drawn
and policed by outside forces at least as powerf ul as consciousness in its
well-behaved, law-abiding, everyday modes—is for some people an almost
necessary escape from utterly oppressive personal experiences and social
surroundings. Drugs seem to offer what eros, too, can provide, in its im-
passioned release from var iet ies of individual limitation, although the
inner life of addiction is—for the long-term drug addict—the direct op-
posite of liberating.
The desire for an altered consciousness remains, whatever its dangers,
an enduring h uman trait. Huxley describes the “urge” to transcend our
ordinary lives, if only for a few moments, as among “the principal ap-
petites of the soul” (DP 62). Art, religion, carnivals, dance, saturnalia,
and even oratory strike him as means to address this desire for self-
transcendence, which tobacco and alcohol also address. If he is right,
then the response of governments to ban certain drugs that alter con-
sciousness is like seeking to ban sex. Sex in the age of HIV / AIDS
can prove harmful, and t here are sex addicts of e very gender, but the war
on drugs has failed. “If I started a business and it was clearly failing,”
writes virtuoso British businessman Richard Branson, “I would shut it
down. The war on drugs has failed—why isn’t it being shut down?”12 The
American habit of declaring war on complex social problems, such as
Lyndon Johnson’s war on poverty, is only part of the dilemma. Branson
urges Americans to heed the Global Commission on Drug Policy and to
treat drugs not as a criminal matter but as a health issue. American
prisons today are overcrowded—w ith 1.5 million state and federal in-
mates in 2014—while 16 percent of state prisoners and 50 percent of fed-

eral prisoners are convicted of drug-related offenses.13 Has failure finally
reached a turning point? Might medical eros join with medical logos in
addressing the role of desire in drug dependency, especially as desire
gets hijacked by addiction and serviced by criminal gangs?
Huxley offers an even more audacious proposal regarding drugs.
Because he regards the quest for altered consciousness as an appetite of
the soul, he believes it is “very likely” that h umans w ill never renounce
what Baudelaire called the artificial paradise of drugs. Startlingly, he does
not advocate fewer drugs but better drugs. “What is needed,” he argues,
“is a new drug which will relieve and console our suffering species without
doing more harm in the long run than it does good in the short” (DP 64–65).
Moralists w ill seize the opportunity to excoriate Huxley’s perhaps poorly
phrased concept of “chemical vacations,” evoking opium dens and inter-
galactic drug bars, but a new and ideal drug (potent in minute doses as
well as synthesizable) should produce changes in consciousness “more
interesting” and “more intrinsically valuable” (DP 65), as Huxley puts it,
than the narcotic products of sedation or idle dreaminess. Medical logos
and the worldwide pharmaceutical industry might take note.
The whole business of eroticism, as Bataille had put it, is to destroy
“the self-contained character” of the participators as they are “in their
normal lives.”14 Serious disease and disabling conditions of body or mind
almost automatically introduce us into a reality so changed that it resem-
bles a foreign land: what Susan Sontag aptly called “the kingdom of the
ill.”15 It is not so much a place, of course, as an inner state, an altered state
of consciousness. In such a state, as V irginia Woolf described in On Being
Ill, the self-contained upright character of our normal healthy lives is
deeply challenged, and our familiar surroundings come to look as eerily
transformed as Huxley’s luminous ruby-red books. The medicines
prescribed for the treatment of illness or for medical procedures, of
course, regularly bring on alterations of consciousness—t hat is their
function—including restful or rejuvenating states such as the pop star
Michael Jackson sought from the anesthetic drug propofol, which he
used for at least an entire decade in order to help him sleep, before he ul-
timately died from an overdose of the same medication.16 Even in a drug-
free state we are changed—translated—by the experience of serious
288 C o nclusi o n
illness and by our entry, as patients, f amily, friends, or caregivers, into the
uncannily familiar kingdom of the ill.
Illness as an almost involuntary altered state of consciousness runs like
a leitmotif through the narratives of medical eros. The “intoxication” that
Anatole Broyard experienced, “as concentrated as a diamond or a micro-
chip,” resembles the experience of British academic Gillian Rose a fter her
diagnosis with advanced ovarian cancer: “What people now seem to find
most daunting with me, I discover, is not my illness or possible death, but
my accentuated being: not my morbidity, but my renewed vitality.”17 Joan
Didion’s vortex-punctuated year of “magical thinking” included an al-
tered temporal consciousness: “I had been trying to reverse time, run the
film backward.”18 For Virginia Woolf, illness resembled the intoxica-
tions of love: “It invests certain faces with divinity, sets us to wait, hour
after hour, with pricked ears for the creaking of a stair.”19 The inner life
of serious illness, beyond the molecular gaze, is regularly experienced as
an altered state of consciousness—and not just among patients. “For the
next eight years I would have flashbacks,” Dr. H reports a fter his cata-
strophic surgical error left a two-year-old boy dead; “I would just be
driving down the highway and think about it, or I’d conjure up horrible
images. It was like a war scene, so bloody and gross.”20 Medical eros, with
its attention to such altered states, offers an important perspective on what
happens—on radical changes to our inner lives—not only when we our-
selves are seriously ill but also when we enter even the outskirts or envi-
rons of illness and its unseen consequences.
The altered states of consciousness typical of illness are often unsought
and undesired, but they quickly intersect with desire if only in prayers
for a recovery and a return to health. Prayer—from the Latin precari (to
ask earnestly, to beg, to entreat)—is often an altered state, whether con-
ducted in solemn privacy, or incorporated in dancing, whirling, ecstatic
rituals and group joy or communitas.21 Prayer and meditation as everyday
altered states, sometimes correlated with alpha brain waves, are impor
tant beyond their personal benefits as a reminder that desire leads into
regions still poorly understood and perhaps inherently enfolded in states
of not-k nowing. Does whatever neurobiology correlates with desire
somehow intersect with genetic predispositions that, under certain cir-
cumstances, lead to alcoholism? What happens if desire veers into the
pathological altered state known as obsession? Or when it aligns with the

constant craving that Buddhists see as the source of all suffering?
The permutations of desire extend even to efforts to control or eradi-
cate it. Joy E. Corey, in Divine Eros (2014), writes about desire as a fun-
damentalist Christian minister whose point of view marks a 180-degree
turn from the eroticism of Audre Lorde. “We guard and watch over our
minds,” Corey writes, “by being vigilant over our wills and our desires.
If t hese don’t conform to God’s w
ill and desire, we must struggle to align
them with His by turning away from our attachments and carnal pas-
sions.”22 Cultural competence is the catch-phrase for a valuable new em-
phasis within medical education on the knowledge and sensitivity needed
to practice medicine in an era of increasing national, ethnic, and racial
diversity, but such competence needs to extend beyond immigrant pop-
ulations and religious minorities. Cultural competence—as a measur
able, testable, objective knowledge that medical students must master—
is perhaps less what doctors need as they confront multiethnic patient
populations than an attitude of openness and of respect in the face of
human difference. Such otherness w ill inevitably include the different
orientations toward desire that help make every patient unique and that
help shape the distinctive individual experience of illness.23
Foucault, in his late lecture courses, in both Paris and Berkeley, argues
that care of the self—always understood in political and ethical (not strictly
medical) contexts—requires, crucially, a relation to others: “one cannot
attend to oneself, take care of oneself, without a relationship to another
person.”24 We act, ethically and politically, in a landscape of not-k nowing
where the darkness of the self meets the infinity of the other person. Care
of the self, then, is an impossible but necessary task, far beyond the powers
of medical logos alone, and medical eros can at least offer as encourage-
ment the recognition that we live surrounded by imperfectly understood,
immeasurable forces. Our best scientific instruments detect only a small
fragment of the known universe, with dark energy and dark matter (in-
visible and thus far undetectable) as potent metaphors for what remains
both strangely fundamental and nonetheless not-k nown.25
What to do? Ralph Waldo Emerson, whose beloved wife Ellen Louisa
Tucker died of tuberculosis at age twenty, viewed eros as the only power
290 C o nclusi o n
that merits our complete allegiance: “Give all to love; / Obey thy heart; /
Friends, kindred, days, / Estate, good-frame, / Plans, credit and the Muse,— /
Nothing refuse.” Eros, despite heartbreak, remains for Emerson, as for
Updike a c entury later, the essential cosmic and spiritual binding force
without which everyt hing in human life falls apart: “the glue,” as one
Emersonian scholar puts it, “that holds the universe and humanity
together.”26
Eros might well stand for the glue-like connections that hold individuals
together, and, if so, it could have a surprising role to play in the under-
standing and treatment of addiction. British journalist Johann Hari re-
cently provided strong arguments for thinking that addiction is best
understood not as a disease or as a moral weakness but as a condition that,
whatever its direct cause, embodies a profound loss of social connection.27
Disconnection is the altered state that typifies addicts, according to Hari’s
extensive research. I was skeptical at first b ecause the genetics and neu-
robiology of addiction are well established, but Hari changed my mind.
His crucial contribution is to emphasize that the psychology of addiction
includes an almost pathological absence of social connection. Most drug-
dependent patients, for example, easily manage the process of step-by-step
withdrawal. Addicts do not. A focus on social disconnection is valuable
precisely because it offers an effective means of intervention. Social
reconnection, a form of erotic glue-like bonding, both actively assists ad-
dicts in the process of recovery and also provides a humane, pragmatic,
and economical alternative to high-priced, futile “wars” on drugs.
“If you are loved,” Hari concludes of the drug casualties he has inter-
viewed, “you have a chance. For a hundred years we have been singing
war songs about addicts. All along, we should have been singing love songs
to them.”28 Medical logos is likely to dismiss this claim as sentimental,
but significant evidence supports further study into the role of social
reconnection.
Portugal at the turn of the twenty-first century, for example, was a
gateway for European drug trafficking, and widespread intravenous drug
use caused rates of infectious diseases to soar. Facing this dilemma, a
government-appointed expert commission proposed a new national policy
of decriminalizing personal drug use and introduced a multidimensional
drug strategy that included an emphasis on “social reintegration.”29 Por-
tugal a dopted this policy in 2001, and the strategy of social reintegration
involved taking very practical steps to assist addicts, such as helping under
write costs of employment. Such moderate costs were more than offset by
vastly reduced expenditures in health care, in law enforcement, and in
criminal justice. Meanwhile the policy led to major reductions in opiate-
related deaths and infections. T hese measurable benefits to public
health parallel transformations in the lives of addicts. Humans, as social
animals, run in families, gangs, and tribes; our desire for connection
may be what gets lost in addiction. No single policy, of course, can elimi-
nate substance abuse. Social reconnection as a means to help addicts
recover, however, suggests that our relations to others—bonds funda-
mental to eros—also prove basic to human function and to the dynamics
of self-care.
Foucauldian care of the self, as the example of addiction suggests,
implies far more than good nutrition, a regular gym visit, and vitamin
supplements. It is an exercise of desire that leads us, inevitably, into the
mind-spinning realm of the not-k nown, where not-k nowing is a condi-
tion of inner life that connects us with the lives of others (who are simi-
larly at risk or already at a loss). Care for others, in traditional Christian
theology, is an instance of caritas or charitable love: the “most excellent”
of the virtues, according to Aquinas, and a practice not difficult to
imagine at work in secular or nontheological contexts. If care for o thers
is a virtue, self-care too merits a respected place in the system of moral
thought known as virtue ethics, since we are the other. That is, we are
simultaneously self and other, both because our selfhood contains an
intrinsic otherness (our own dark or unconscious spaces) and because
we already occupy the position of other when viewed by someone e lse.
Care of the self, then, understood as the opposite of solipsistic self-
indulgence, is less an issue of personal health than an expression of eros
as a binding, connective, even ethical force able to draw us into the gen-
tler registers of human loving-k indness. Self-care m atters especially
because it is so easy to ignore or to get wrong when—as patients, care-
givers, f amily, friends, doctors, or random o thers—we enter into the dis-
orienting nightside kingdom of the ill.
It was Susan Sontag who described illness as “the night-side of life.”30
It is reasonable to presume that the metaphor is not false to her experience
292 C o nclusi o n
in 1975 with stage IV metastatic breast cancer. She never mentions her
experience with cancer in Illness as Metaphor (1978), a brilliant analysis
(published several years later) showing how figurative language—such as
a metaphoric description of the Watergate scandal as “a cancer on the
Presidency”—exposes distinctive individual and cultural beliefs about
illness. Such beliefs are largely erroneous and such metaphoric language
harmful, in her view, b ecause illness for Sontag is exclusively a biolog-
ical condition of the body, and the body for Sontag is an organic system
known, or in principle always knowable, by medical science. “My mother
loved science,” writes Sontag’s son, David Rieff, “and believed in it (as
she believed in reason) with a fierce, unwavering tenacity bordering on
religiosity. There was a sense in which reason was her religion.”31 Fierce-
ness suggests passion, and Sontag’s passionate belief that medicine and
reason hold the answers to illness certainly underlies her own care of the
self. A radical mastectomy—removing the breast, the chest-wall muscle,
and the lymph nodes in the armpit—left her in an altered state almost the
opposite of intoxicated.
“People speak of illness as deepening,” Sontag writes in a passage from
her journal. “I don’t feel deepened. I feel flattened. I’ve become opaque
to myself” (SSD 35). What does it mean to become opaque to oneself? Is it
like a darkened mirror in which we no longer recognize our own reflection?
Rieff believes that this opaqueness extended to “the damage done to her
sexuality from which I do not believe she ever fully recovered” (SSD 36).
For eros, of course, sexuality is a key feature of the inner life, as crucial
to our self-understanding as the image in a mirror. Eros matters as much
in its failures as in its transcendence. Sontag’s fierce religion of cutting-
edge medical science saved her life, but it did not offer solace from what
Rieff calls “the depth of her despair” (SSD 41). Medical logos, outside
psychiatry, does not focus closely on such altered states of consciousness.
Sontag’s respite lasted until the late 1990s when she was diagnosed
with uterine sarcoma. The chemotherapy that she received in treatment
precipitated a form of stem-cell disorder known as myelodysplastic syn-
drome, for which medical science had no effective treatment. The prog-
nosis indicated rapid advance into full-blown acute myeloid leukemia.
“When I first met Susan,” Rieff quotes her oncologist as saying, “she
repeatedly told me that she was ‘in freefall’ ” (SSD 116). In free fall, Sontag
kept up her determined struggle despite the failure of a bone m arrow

transplant, as she called upon her prodigious intellect, research skills,
and extraordinary will to explore all medical options. Science and
reason laid out the steep statistical odds against recovery, and, like Ana-
tole Broyard, she had no patience with optimistic, well-meaning friends
who offered consolation. “ ‘Read the statistics,’ she’d say, ever factual,
‘read the statistics’ ” (SSD 133). When friends continued to express confi-
dence that she would recover, Rieff writes that his mother would explain
how bad her chances were “in a pedantic tone that soon spiraled into
panic.” Medical logos accompanies us as far as reason w ill extend, but
reason, as it encounters the individual mysteries of serious illness and
not-k nowing, may lead to the edge of an abyss.
David Rieff’s memoir Swimming in a Sea of Death (2008), in its focus
on Sontag’s last years, begins with a phone call from his famous mother
asking that he accompany her as she met with a specialist to discuss trou-
bling blood tests, and his focus throughout remains on how Sontag deals
with illness not as a magnet for false metaphors and erroneous beliefs—
as in Illness as Metaphor—but as a lived experience. Her lived experience,
as Rieff viewed it, took shape from her fierce belief that illness is exclusively a
bodily state amenable to scientific, rational, biomedical understanding.
There is, amid Rieff’s biographical reflections about his mother, another
important narrative thread (almost a subtheme) that concerns what he
calls “the loved one’s dilemma” (SSD 21). It is Rieff who swims alongside
his mother in a sea of death, and the book also details his struggle, which
includes continually adjusting his responses to what he believes are his
mother’s desires, although he never wholly grasps what her desires
are. The uncertainties of desire and not-knowing return us, of course, to
the native ground of medical eros, and caregivers will doubtless recognize
their own anguish in the litany of unanswerable questions that continue,
long a fter Sontag’s death, to disturb David Rieff’s bittersweet dreams.
Dreams are another common altered state, and for Rieff the incessant
questions tumble out, as he says, both in wakefulness and in sleep. For a
full two years after his mother’s death he continues to replay at night his
own tormenting self-indictments. At times he wishes that he had died in-
stead of Sontag—a mental state that he identifies as, in part, survivor’s
guilt (SSD 159). The questions are as unresolvable as they are relentless:
294 C o nclusi o n
“Did I do the right thing? Could I have done more? Or proposed an al-
ternative? Or been more supportive? Or forced the issue of death to the
fore? Or concealed it better?” (SSD 21). I have asked similar questions,
repeatedly, received no answers, and found my altered consciousness
reflected in the loved o ne’s dilemma.
Rieff ’s memoir unfolds as a double narrative, two quite different,
parallel accounts, with each matching a prototype described by Ar-
thur W. Frank in The Wounded Storyteller. One narrative, a classic quest
narrative, concerns a famous writer—proud of her “straight-A student”
intellect (SSD 81)—who remains steadfast in her belief that science and
reason hold the ultimate remedy for her condition. Sontag transforms
her apartment into an ad hoc research library searching for a cure, while
nonetheless caught in the vortex of loss and confusion from which no
exertion of intellect could f ree her. Rieff aptly captures the vicious circle:
“But while she knew she had a deadly illness, good student though she
undoubtedly was, this did not make her any less lost, as almost all pa-
tients are, in the thick fog of the alien language of medicine and biology,
and in the thicker fog of passing from being an autonomous adult to an
infantilized patient—all need, and fear, and pain” (SSD 82).
The second narrative—as if two parallel swimmers told differing adja-
cent stories—is the lost caregiver’s chaos narrative. Rieff is caught in cur-
rents of unnavigable paradox. Intense loving care of the (unknowable)
other, in his case, entails a deferred or misplaced care of the (equally un-
knowable) self; and even if Rieff guesses right about his mother’s con-
cealed desires, he can’t know for sure that he’s right, and meanwhile he
blames himself when he responds ineptly to what he imagines her needs
are. Their mute exchanges are like the dumb show prelude to a tragedy,
in which concealed desires and mounting doubts ultimately take an im
mense psychic toll. “Inside, I was shutting down,” Rieff writes, “almost
as if, instinctively, I realized that I could not handle my own emotion as
well as hers” (SSD 99). In retrospect, he wonders if shutting down was
inevitable, or the right choice. (“I am by no means sure.”) Occasional
doubts happen every day, but unremitting, traumatic uncertainties about
the care of a loved one, accompanied by an emotional freeze, soon rise to
the level of a pathological altered state. “I was numb for so long,” Rieff
says ruefully (SSD 109). His summary holds no consolation. “I am any-
thing but certain that I did the right thing,” he concludes, “and, in my
bleaker moments, wonder if in fact I might not have made things worse
for her by endlessly refilling that poisoned chalice of hope” (SSD 169).
The two parallel narratives—reason and doubt, quest and chaos,
mother and son—do not belong to the well-lit world of medical logos.
They emerge from the dark side of life: the altered state of not-k nowing
native to medical eros. Eros may not spring to mind when we think about
filial affection, but eros is present, too, in the relations between adult
children and declining parents, especially when illness calls them to-
gether. David Rieff entered a maze with wrong turns everywhere. “She
quickly made it plain,” he notes of his m other’s less than lucid communi-
cation, “though she never came out and said it so bluntly, that there were
‘no go’ areas on the subject of her illness” (SSD 42). Ruth and I also had
unspoken “no go” agreements. I feared where the talk might lead. Maybe
she did, too, but such speculations simply uncover more not-knowing. My
suggestion that we learn sign language was an idiotic proposal, of course,
because Ruth wasn’t just losing English words but all language facility.
Still, caregivers are desperate. Ruth had recently begun to cling ever closer
to me. Only after I realized, in my exhaustion, that she might one day
wake up beside a corpse did I dare say, as I mentioned earlier, I had vis-
ited a residential care facility and (like Rieff, my replays are endless) felt
the utter astonishment of hearing Ruth reply, Can we go see it?
David Rieff had the grace often to acquiesce in his mother’s unspoken
desires, even though in silencing his disagreements and his doubts he
knowingly betrayed his own code of honesty. “I became her accomplice,”
he says, “albeit with the guiltiest of consciences” (SSD 43). He allows him-
self in retrospect some critical, personal judgments about his m other—t hat
her faith in reason was “unreasonable” (SSD 94), for example—but such
opinions are rarely f ree from the doubt, self-reproach, and guilt that seem
the inescapable cost of his caregiver role. As a writer, he could see a
value in certain real-life stories or fictions—nontruths or deceptions that
we embrace out of care for another person—which nonwriters or truth-
squads might call lies. Three times he cites Joan Didion’s astute state-
ment (the title of her collected essays) that we tell ourselves stories in order
to live.32 The life-sustaining story that Susan Sontag told in the face of
illness concerned the power of reason and of science; David Rieff’s
296 C o nclusi o n
companion story is about the limits of reason and about the unreason-
able t hings that we do, for love, in an altered state of doubt, guilt, confu-
sion, fear, and not-k nowing what to do.
Hippocrates famously says that the art of healing has three parts: the dis-
ease, the patient, and the healer. Medical eros is most Hippocratic, we
might say, in its emphasis on the patient and on the healer. The biology
of disease is the province of medical logos and of the molecular gaze, but
medical logos might reclaim a share of its Asklepian heritage if logos were
permitted to resonate with its pre-Socratic connotations of word, speech,
discourse, and meaning. Joan Didion is right: we tell stories—to ourselves,
to others—in order to live. Such stories, however, do not always resemble
traditional narratives with beginnings, m iddles, and conclusions. Like
shards or splinters, many stories we tell about illness resemble angular
remnants of a missing and perhaps forever inaccessible plot: true to the
moment, perhaps no more than a random, jotted diary entry, but also at
times almost holographic images in which each fragment recapitulates a
vanished whole. “While I was busy zapping the world with my mind,”
Rieff quotes from Sontag’s journal, “my body fell down” (SSD 41). This
is the statement of a pubic intellectual who not only “loved reason” and
“loathed appeals to the subjective,” as Rieff notes (SSD 40), but also
for whom the unreasoning body always took second place. “For my
mother, whose pleasure in her own body—never secure—had been irre-
trievably wrecked by her breast cancer surgery,” Rieff concludes, “con-
sciousness was finally all that mattered” (SSD 73). Consciousness for
Sontag meant logos in its strictest biomedical, scientific meanings as
principle, law, and reason.
Science and fact constitute the only ground on which Sontag would
permit hope—the rationalist story she told herself in order to survive—and
the ground in her final illness was radically unstable. Consciousness
for Rieff holds a different meaning, more consistent with eros and not-
knowing, less wholly aligned with reason and less alienated from the
body. It was only in the last weeks of her life, as he writes, after the bone
marrow transplant in Seattle had failed, that Sontag returned home to
New York and “essentially gave up finding ways to believe there were ra-
tional reasons for her to think she would survive. It was an impossible
balancing act” (SSD 127). Rational reasons: for Rieff, the heart, too, has
its reasons, but that is a paradox; it invokes a nonscientific concept of
reason. In effect, it belongs to another story.
Illness as Metaphor, despite the skill with which Sontag analyzes the
metaphoric language of illness, belongs alongside other 1970s texts of lib-
eration. It shares in an antimilitarist spirit typical of the post-Vietnam
War era. It also embodies Sontag’s desire to f ree illness from what she
regarded as the erroneous, contaminating, metaphoric discourses that
prevent us from understanding it as, simply, a biological event. She seeks
especially to liberate cancer from the psychoanalytic language of self-
denial and repression, implying that patients are responsible for their
disease, mainly through forms of erotic refusal. Illness as Metaphor, along-
side its brilliant analysis of ways in which illness infiltrates literary and
nonliterary discourse, is a fierce defense and exposition of the powers of
reason, in which reason (employing the analytical tools of biomedicine)
identifies the hidden cellular processes that always underlie disease. Her
son believes that Sontag never entirely broke free from the suspicion that
her own self-denials had caused her illness. What we know for sure is that
the network of supra-dyadic erotic relations in which serious illness reg-
ularly enfolds us—patient, friends, lovers (past or present), family, and
caregivers, in an open-ended series—register in complex biofeedback
loops on the organic systems at play in illness, so that (like stories, faiths,
and beliefs) they are rarely irrelevant to the truth of an individual malady
but rather, like the “nebulous f actors” affecting outcomes at the best spe-
cialized clinics, contribute to the intricate mind / body interrelations that
define illness.
Altered states include the emotional entanglements that come with fam-
ilies and with illness, and David Rieff explains that he preferred to write
“as little as possible” about his relations with his mother in the last de
cade of her life. Their relations, he confesses, were “often strained and at
times very difficult” (SSD 160). More complications of eros. He describes
her d ying as “so protracted” that there was “almost too much time” to
prepare for her death. Sontag’s journey ends, but for Rieff there is no con-
clusion, no end point, only the continued doubt and not-k nowing. Even
the nineteenth-century tradition of last words—t he closure that comes
with whatever concluding statement the d ying person utters—in Rieff’s
298 C o nclusi o n
case takes a decidedly postmodern turn, as he recalls his final exchange

with his mother at her bedside.
The day before she died, she asked, “Is David here?”
“Yes, I’m here,” I remember hearing myself say.
My mother did not open her eyes, or move her head. For a moment,
I thought that she had fallen back to sleep. But after a pause, she said,
“I want to tell you . . .”
That was all she said. She gestured vaguely with one emaciated
hand and then let it drop onto the coverlet. I think she did fall back to
sleep then. T
hese were the last words my mother spoke to me.33
Eros, amid the transcendence and torment that plays out in the inner life,
is the medium of questions to which we cannot find answers; it holds out
the promise of an inaccessible but wished-for knowledge that, no m
atter
how hard we reason or try, we w ill never possess.
Bittersweet. The Greek epithet for eros— glukopikron: literally

“sweetbitter”—that Sappho invented in fifth-century BCE Lesbos is less
a literary figure of speech, an oxymoron (like hot ice), than an accurate
description of the contrary states that eros unites or at least brings into
alternating contact. The sweet-bitterness of love can range from ecstatic
transcendence to abject misery. “Spurn me, strike me,” Helena adds to
her spaniel-like litany of abjection as she begs her cold lover for attention
in A Midsummer Night’s Dream.34 Any contact better than no contact. If
eros can reduce us to such abject fawning, less an expression of love than
of twisted self-contempt, it can also raise us to the stars. The rival who
sits face to face with Sappho’s beloved—drinking in her “sweet speech
and lovely / laughter”—is, as Sappho writes enviously, elevated above
mortal status: “peer of the gods” (theoisin).35 Significantly, it is the speech
and laughter of the beloved—not her visual beauty—that Sappho extols
here. Eros lives through all the senses, even as it lifts the lover at times far
beyond the sensual or material world. Still, despite its intoxicating tran-
scendence, the altered states into which eros can draw the lover include
jealousy, betrayal, and a lovesickness so extreme that, as Sappho also ac-
knowledges, it approaches the hyperdestructive and ultimate bitter al-
teration of erotic inner life: “dying.”
An account of my own altered states offers at least an inconclusive post-

script to the scraps of personal essay scattered throughout. Ruth spends
her days now in a conscious but heartbreakingly near-comatose state. She
no longer walks, although she once ranged the perimeter of her residen-
tial facility in shark-like constant motion. I find her most afternoons lying
on her bed, eyes unfocused, lost in space. She takes no notice of me—or
anyone. Is her chronic teeth-grinding a sign of anxieties? Does she under
stand where she is, or who she is? No one can tell me. I arrange for her
favorite hairdresser to cut her hair each month, although several years ago
we agreed to stop the color treatments. Ruth would have fought grey hair
to the b itter end. She would not share my pleasure that her later years
promised a gorgeous cascade of silvery-platinum locks. I know that I am
losing her. I now rationalize that it is OK to reduce my visits because she
doesn’t know I’m present or absent. Reasons d on’t help. Psyche never gave
up searching for Cupid. Others—spouses, parents, lovers, kin—have faced
harder roads. Like David Rieff, I find no way to step outside this clouded
not-k nowing state.
Eros, however, is not all bitter. It always holds the promise of an in-
separable sweetness. Perhaps eros is with us all along—like an invisible
force field we inhabit, or like the (mostly unheard) whisper of being that
Levinas imagined surviving even catastrophic extinctions—available to
gather suddenly into a positive Black Swan event as improbable as Ruth’s
illness. Well past sixty, I worked up my nerve for some first dates over the
Internet. After discovering my complete comic futility on the senior dating
scene, I finally met a talented painter, living sixty miles away, who had
recently accompanied her husband through an extended, fatal dementia.
We don’t talk much about brain disease, as you might imagine, but we
don’t need to. It’s in our bones, and luckily eros has given us an unex-
pected chance to focus, for now, on sweetness.
Medical eros is the power I’ve relied on when I did not know what to
do, but not to the exclusion of medical logos. I think of them working sep-
arately as needed, but often in concert, like the right hand and the left
hand. Of course, there’s no medical diagnosis for getting beaten up, run
ragged, and just plain pushed to the limit of your strength, as many care-
givers are, and eros then proves indispensable. Sometimes, too, words and
images can help more than drugs and surgeries in situations where illness
300 C o nclusi o n
Figure 10.1. Trisha Orr. Squander It All. Oil on canvas.

Reproduced courtesy of Trisha Orr.
might seem to blot out eros and obliterate an assent to life. Contemporary
painter Trisha Orr and her poet-husband, Gregory Orr, joined forces
starting in 2006 on a series of poem- paintings, as Trisha Orr calls them,
in which his words together with her images create a synergy unavail-
able to e ither alone. The impact of their collaboration changed in 2009,
however, when Trisha was diagnosed with a serious illness. What may
have begun, inside a marriage, as an aesthetic engagement with the ven-
erable traditions that combine poetry and painting took on a new, life-
sustaining significance. “I came to feel,” she writes, “that the poems
gave me the courage, faith, and hope necessary to live vitally, not just to
survive passively.”
“Squander it all / Hold Nothing Back / The Heart’s / A Deep Well / And
When It’s Empty / It Will Fill Again” (Figure 10.1). Like a wall ceaselessly
scraped and repainted with graffiti, the canvas in its layered orange and
yellow random sprawls of battered color gives the eroded striations of
black-and-white linear verse just the right feel of a meaning that survives,
absorbs, and transcends whatever powers w ill continue to resist or op-

pose it.
I don’t know for certain that my heart will always keep refilling—reason
says no, wells sometimes run dry, just as language sometimes runs dry,
just as Ruth now lives in a nightside world beyond my reach, beyond my
touch. But words can also hold good, and a true heart-refilling is what
I deeply desire, with no holding back. Call it survivor’s hope. Not a
passive, thin wishful-t hinking but instead a sturdy trust in facing the
unknown, the not-known, despite the improbabilities ahead, some good,
some doubtless not so good. Hope is certainly an inflection of desire.
Eros, in its assent to life, is no less than the unofficial guardian of hope
and desire: the g reat god of sprawl, squander, and not-knowing. How will
it all end? I don’t know. Not-k nowing, I continue to relearn, is the one
inescapable altered state that eros assures us of.
Notes
INTRODUCTION
Epigraph: John Updike, quoted in Ethan Bronner, “Bethlehem Journal; John Updike Re-
turns to His Source,” New York Times, November 6, 1998, www.nytimes.com/1998/11/06/us
/bethlehem-journal-john-updike-returns-to-his-source.html. Updike was replying to ques-
tions from students at Lehigh University, in Bethlehem, Pennsylvania, on November 4, 1998.
1. Hubert Dreyfus and Sean Dorrance Kelly, All T hings Shining: Reading the Western
Classics to Find Meaning in a Secular Age (New York: Simon & Schuster, 2011), 85.
2. For an exemplary collection, see Erotikon: Essays on Eros, Ancient and Modern, ed.
Shadi Bartsch and Thomas Bartscherer (Chicago: University of Chicago Press, 2005).
3. Georges Bataille, Erotism: Death and Sensuality, trans. Mary Dalwood (San Francisco:
City Lights Books, 1986), 11. This English translation was first published as Death and
Sensuality: A Study of Eroticism and the Taboo (New York: Walker, 1962).
4. Georges Bataille, The Tears of Eros [1961], trans. Peter Connor (San Francisco: City
Lights Books, 1989).
5. Bataille, Erotism, 29.
6. Anne Carson, Eros the Bittersweet (1986; repr., Normal, Ill.: Dalkey Archive, 1998), 40–41.
7. G. E. Berrios and N. Kennedy, “Erotomania: A Conceptual History,” History of Psychi-
atry 13 (2002): 381–400; see also Brendan D. Kelly, “Erotomania,” CNS Drugs 19 (2005):
657–669.
8. Bataille, Erotism, 17 (“une destruction de la structure de l’être fermé qu’est à l’état
normal”).
9. Kenneth M. Ludmerer, “The Development of American Medical Education from the
Turn of the C entury to the Era of Managed Care,” lecture, Case Western Reserve Uni-
versity, October 12–13, 2001, www.case.edu/artsci/wrss/documents/wrs2001-02ludmerer
_000.pdf.
10. Abraham Flexner, Medical Education in the United States and Canada: A Report to the
Carnegie Foundation for the Advancement of Teaching (1910; repr. New York: Carneg ie
Foundation for the Advancement of Teaching, 1972), http://archive.carnegiefoundation
.org/pdfs/elibrary/Carnegie _ F lexner_ R eport.pdf.
11. See Sander L. Gilman, Sexuality: An Illustrated History, Representing the Sexual in
Medicine and Culture from the M iddle Ages to the Age of AIDS (New York: Wiley, 1989).
304 N O T E S T O PA G E S 1 0 – 2 3
12. William Carlos Williams, “The Use of Force” [1938], The Doctor Stories, comp. Robert
Coles (New York: New Directions, 1984), 59. The subsequent quotations, in order of
occurrence, refer to pages 59, 57, 57, and 60.
13. Carson, Eros the Bittersweet, 70.
14. Centers for Disease Control and Prevention, “Diphtheria,” Epidemiology and Preven-
tion of Vaccine-Preventable Diseases, 13th ed. (Atlanta: CDC, 2015), www.cdc.gov
/vaccines/pubs/pinkbook/downloads/dip.pdf.
15. Karen Davis, Kristof Stremikis, David Squires, and Cathy Schoen, “Mirror, Mirror
on the Wall: How the Performance of the U.S. Health Care System Compares Interna-
tionally,” The Commonwealth Fund (June 2014), publication no. 1755.
16. Martin Makary and Michael Daniel, “Medical Error—T he Third Leading Cause of
Death in the US,” BMJ, May 3, 2016, doi: http://dx.doi.org/10.1136/ bmj.i2139. For a dis-
senting voice, see Richard Gunderman and Jae Hyun Kwon, “Deadly Medical Errors
Are Less Common Than Headlines Suggest,” The Conversation (United States edi-
tion), accessed August 23, 2016, http://theconversation.com/deadly-medical-errors-are
-less-common-t han-headlines-suggest-61944. For a wider discussion, see Barbara
Starfield, “Is US Health R eally the Best in the World?,” JAMA 248, no. 4 (2000): 483–
485; R. Monina Klevens, Jonathan R. Edwards, Chesley L. Richards Jr., Teresa C.
Horan, Robert P. Gaynes, et al., “Estimating Health Care-Associated Infections and
Deaths in U.S. Hospitals, 2002,” Public Health Reports 122 (2007): 160–166; and
Institute of Medicine, Preventing Medication Errors, ed. Philip Aspden, Julie Wol-
cott, J. Lyle Bootman, and Linda R. Cronewett (Washington, D.C.: The National
Academies Press, 2006).
17. Donna Haraway, The Companion Species Manifesto: Dogs, People, and Significant Oth-
erness (Chicago: Prickly Paradigm, 2003), 8; Bruno Latour, We Have Never Been
Modern [1991], trans. Catherine Porter (Cambridge, Mass.: Harvard University Press,
1993), 41; and Andrew Scholtz, Concordia discors: Eros and Dialogue in Classical Athe-
nian Literature (Cambridge, Mass.: Harvard University Press, 2007).
18. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978), 3.
19. Jonathan Kipnis, quoted in Josh Barney, “T hey’ll Have to Rewrite the Textbooks,”
UVA Today, March 21, 2016, https://news.virginia.edu/illimitable/discovery/theyll-have
-rewrite-textbooks; and Antoine Louveau, Igor Smirnov, Timothy J. Keyes, Jacob D.
Eccles, Sherin J. Rouhani, et al. “Structural and Functional Features of Central Ner
vous System Lymphatics,” Nature 523 (2015): 337–341.
20. My deepest thanks to Gail Lauzzana for permission to quote from her e-mail.
CHAPTER ONE • THE AMBUSH: AN EROTICS OF ILLNESS
Epigraph: Eugen Herrigel, Zen in the Art of Archery [1948], trans. R. F. C. Hull (New York:
Pantheon Books, 1953), 51. The Master is the renowned Japanese teacher Awa Kenzō.
1. A Midsummer Night’s Dream, III.i.18–19, in The Riverside Shakespeare (Boston:

Houghton Mifflin, 1974).
atters,” JAMA
2. Steven H. Woolf, “The Meaning of Translational Research and Why It M
299, no. 2 (2008): 211–213.
N O T E S T O PA G E S 2 5 – 3 1 305
3. Arthur Frank, At the Will of the Body: Reflections on Illness (Boston: Houghton Mif-
flin, 1991), 8.
4. Donald Hall, Without (Boston: Houghton Mifflin, 1998), 40.
5. Alzheimer’s Association, “2016 Alzheimer’s Disease Facts and Figures” www.a lz.org
/documents_custom/2016-facts-a nd-figures.pdf.
6. David Rieff, Swimming in a Sea of Death: A Son’s Memoir (New York: Simon &
Schuster, 2008), 28. Rieff observes that Sontag “loathed appeals to the subjective” (40).
7. Susan Sontag, “Directions: Write, Read, Rewrite. Repeat Steps 2 and 3 as Needed”
[2000], in Writers on Writing: Collected Essays from the New York Times, introduced
by John Darnton (New York: Times Books, 2001), 227–228.
8. Ann Jurecic, Illness as Narrative (Pittsburgh: University of Pittsburgh Press, 2012), 18.
See also Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography,
2nd ed. (Lafayette, Ind.: Purdue University Press, 1999).
9. Among relevant accounts, see Rachel Hadas, Strange Relation: A Memoir of Marriage,
Dementia, and Poetry (Philadelphia: Paul Dry, 2011); Edward Bliss Jr., For Love of Lois
(New York: Fordham University Press, 2003); Michael S. Pritchard, Moments with
Millie: A Memory Walk (Haslett, Mich.: Buttonwood Press, 2007); and Lisa Genova,
Still Alice: A Novel (New York: Pocket Books, 2009).
10. Alzheimer’s Association, “2016 Alzheimer’s Disease Facts and Figures,” Alzheimer’s
& Dementia 12, no. 4 (2016), www.a lz.org/documents_custom/2016-facts-a nd-figures
.pdf.
11. Kirsten P. Smith and Nicholas A. Christakis, “Social Networks and Health,” Annual
Review of Sociology 34 (2008): 405–429.
12. Anne E. Becker, “New Global Perspectives on Eating Disorders,” Culture, Medicine
and Psychiatry 28 (2004): 433–437; and “Telev ision, Disordered Eating, and Young
Women in Fiji: Negotiating Body Image and Identity during Rapid Social Change,”
Culture, Medicine and Psychiatry 28 (2004): 533–559.
13. Rose McDermott, James H. Fowler, and Nicholas A. Christakis, “Breaking Up Is Hard
to Do, Unless Everyone Else Is Doing It Too: Social Network Effects on Divorce in a
Longitudinal Sample,” Social Forces 92 (2013): 491–519.
14. Susan Sontag, “The Way We Live Now” [1986], in The Way We Write Now: Short
Stories from the AIDS Crisis, ed. Sharon Oard Warner (New York: Citadel Press,
1995), 9.
15. Richard Schulz and Scott R. Beach, “Caregiving as a Risk Factor for Mortality: The
Caregiver Health Effects Study,” JAMA 282 (1999): 2215–2219.
16. Connie Matthiessen, “Caregiving: Does It Have to Be This Hard?” Caring.com,
April 3, 2008, www.caring.com/ blogs/caring-currents/caregiving-are-you-getting-t he
-support-you-need.
17. Oliver Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales (New
York: Simon & Schuster, 1985), 81.
18. For two basic texts, see Nancy L. Mace and Peter V. Rabins, The 36-Hour Day: A F amily
Guide to Caring for P eople Who Have Alzheimer’s Disease, Related Dementias, and
Memory Loss, 5th ed. (Baltimore: Johns Hopkins University Press, 2011), and Always
on Call: When Illness Turns Families into Caregivers, rev. ed., ed. Carol Levine (Nash-
ville: Vanderbilt University Press, 2004).
306 N O T E S T O PA G E S 3 2 – 4 6
19. Rebecca Garden, “The Problem of Empathy: Medicine and the Humanities,” New Lit-
erary History 38 (2007): 551–567.
20. Danielle Ofri, What Doctors Feel: How Emotions Affect the Practice of Medicine (Boston:
Beacon, 2013), 3.
21. Reynolds Price, A Whole New Life: An Illness and a Healing (New York: Atheneum,
1994), 184 (italics added).
22. King Lear, V.iii.307–308, in The Riverside Shakespeare.
23. See Victor Strandberg, “The Religious / Erotic Poetry of Reynolds Price,” Studies in
the Literary Imagination 35 (2002): 85.
24. Helen Fisher, Why We Love: The Nature and Chemistry of Romantic Love (New York:
Henry Holt, 2004), 77–98. For a sociological account, see Eva Illouz, Why Love Hurts
(Malden, Mass.: Polity, 2012).
25. Price, Whole New Life, 183.
26. Carol Levine, “One Loss May Hide Another,” Hastings Center Report 34, no. 6
(2004): 19.
27. Arthur Kleinman, “Caregiving: The Odyssey of Becoming More Human,” The Lancet
373 (2009): 293; and “Catastrophe and Caregiving: The Failure of Medicine as an Art,”
The Lancet 371 (2008): 22–23.
28. John Bayley, Elegy for Iris (New York: St. Martin’s Press, 1999), 76.
29. See E. P. Thompson, “The Moral Economy of the English Crowd in the Eighteenth
entury,” Past & Present, 50 (1971): 76–136.
C
30. Georges Bataille, “The Notion of Expenditure” [1933], in The Bataille Reader, ed. Fred
Botting and Scott Wilson (Oxford: Blackwell, 1997), 169.
31. Lore K. Wright, “The Impact of Alzheimer’s Disease on the Marital Relationship,” The
Gerontologist 31 (1991): 224–237. For contrast, see Stacy Tessler Lindau, L. Phillip
Schumm, Edward O. Laumann, Wendy Levinson, Colm A. O’Muircheartaigh, and
Linda J. Waite, “A Study of Sexuality and Health among Older Adults in the United
States,” New E ngland Journal of Medicine 357 (2007): 762–774.
32. William Carlos Williams, “The Use of Force” [1938], The Doctor Stories, comp. Robert
Coles (New York: New Directions, 1984), 60.
33. Jean Baudrillard, Seduction, trans. Brian Singer (New York: St. Martin’s Press, 1990;
published in French in 1979), 34.
34. See Harold Schweizer, On Waiting (New York: Routledge, 2008).
35. W. H. Vanstone, The Stature of Waiting (London: Darton, Longman and Todd, 1982);
and Henri J. M. Nouwen, Adam: God’s Beloved (Maryknoll, N.Y.: Orbis, 1997).
36. For a values-based ethics, see Mark D. Bennett and Joan McIver Gibson, A Field Guide
to Good Decisions: Values in Action (Westport, Conn.: Praeger, 2006).
37. Lisa Diedrich, “Conclusion: Toward an Ethics of Failure,” in Treatments: Language,
Politics, and the Culture of Illness (Minneapolis: University of Minnesota Press,
2007), 148–166.
38. Donnie McClurkin, “Stand,” released September 25, 2007, under the Verity Label.
39. John Milton, Sonnet XVI (“When I consider how my light is spent”), in The Shorter
Poems, ed. Barbara Kiefer Lewalski and Estelle Haan (Oxford: Oxford University
Press, 2012), 245 (spelling normalized).
N O T E S T O PA G E S 4 7 – 5 4 307
40. Aaron Alterra, The Caregiver: A Life with Alzheimer’s (1999; repr., New York: Cornell Uni-
versity Press, 2007), 17. Aaron Alterra is the pen name for fiction writer E. S. Goldman.
41. Alterra, The Caregiver, 188. On presence, see Hans Ulrich Gumbrecht, Production of
Presence: What Meaning Cannot Convey (Stanford, Calif.: Stanford University Press,
2004); on testimony, see Arthur W. Frank, The Wounded Storyteller: Body, Illness,
and Ethics, 2nd ed. (Chicago: University of Chicago Press, 2013).
42. World Alzheimer Report 2015: The Global Impact of Dementia (London: Alzheimer’s
Disease International, 2015), 71. The figure includes aggregated direct and indirect “so-
cietal costs.”
CHAPTER TWO • UNFORGETTING ASKLEPIOS: MEDICAL EROS AND ITS LINEAGE
Epigraph: William Blake, The Marriage of Heaven and Hell [1789–1790], in The Complete
Poetry and Prose of William Blake, rev. ed., ed. David V. Erdman, commentary by Harold
Bloom (Berkeley: University of California Press, 1982), 34 (plate three).
1. Euripides, “Hippolytus,” in Euripides II, rev. ed., ed. and trans. David Kovacs (Cam-
bridge, Mass.: Harvard University Press, 2005), ll. 540–542.
2. Apuleius, The Golden Ass, trans. P. G. Walsh (Oxford: Oxford University Press, 2008),
76 (IV.30).
3. Anne Carson, Eros the Bittersweet (1986; repr., Normal, Ill.: Dalkey Archive, 1998), 32.
4. A Midsummer Night’s Dream, III.ii.115, in The Riverside Shakespeare (Boston:
Houghton Mifflin Company, 1974). Subsequent quotations w ill be indicated in the text
by act, scene, and line number (in parentheses).
5. See Ralph Jackson, Doctors and Diseases in the Roman Empire (Norman: University
of Oklahoma Press, 1988), 142.
6. Darrell W. Amundsen, Medicine, Society, and Faith in the Ancient and Medieval Worlds
(Baltimore: Johns Hopkins University Press, 1996), 146.
7. On Socrates’ last words, see Glenn W. Most, “ ‘A Cock for Asklepios,’ ” Classical Quar-
terly 43 (1993): 96–111.
8. P. Aelius Aristides, “An Address Regarding Asclepius,” in The Complete Works, trans.
Charles A. Behr, 2 vols. (Leiden: Brill, 1981), 2:247.
9. For the description of Anatole Broyard as a “fabled libertine,” see Henry Louis Gates Jr.,
Thirteen Ways of Looking at a Black Man (New York: Random House, 1997), 196.
Broyard insists—awkwardly—that “it was ultimately with girls’ souls that I grap-
pled”; see Anatole Broyard, Kafka Was the Rage: A Greenwich Village Memoir (New
York: Carol Southern, 1993), 146.
10. Anatole Broyard, “Intoxicated by My Illness,” in Intoxicated by My Illness and Other
Writings on Life and Death, ed. Alexandra Broyard (New York: Clarkson Potter, 1992),
4. Subsequent quotations w ill be indicated in the text as IMI. The essay “Intoxicated
by My Illness” first appeared in the New York Times in 1982.
11. On desire as discussed by classical thinkers who held the purpose of philosophy to be
medicinal and therapeutic, see Martha C. Nussbaum, The Therapy of Desire: Theory
and Practice in Hellenistic Ethics (Princeton, N.J.: Princeton University Press, 1994).
308 N O T E S T O PA G E S 5 4 – 6 4
12. Carson, Eros the Bittersweet, 10, 37.

13. Chris Kraus, I Love Dick (1997; repr. Los Angeles: Semiotext[e]: 2006), 239.
14. Anatole Broyard, Aroused by Books (New York: Random House, 1974).
15. See John Hoberman, Black and Blue: The Origins and Consequences of Medical Racism
(Berkeley: University of California Press, 2013).
16. Vivian Nutton, Ancient Medicine, 2nd ed. (New York: Routledge, 2013), 104. Asklepios
is the Greek spelling; the Latin spelling Asculapius is regularly anglicized to Asklepius.
All are in common usage. I follow the Greek spelling in my text, but retain each author’s
original usage in endnotes. See, above all, Emma J. Edelstein and Ludwig Edelstein
in their monumental Asclepius: Collection and Interpretation of the Testimonies (1945;
repr., Baltimore: Johns Hopkins University Press, 1998). I am also indebted to
Gerald D. Hart, Asclepius: The God of Medicine (London: Royal Society of Medicine
Press, 2000); and Sara B. Aleshire, The Athenian Asklepieion: The P eople, Their Ded-
ications, and The Inventories (Amsterdam: Gieben, 1989).
17. Bronwen L. Wickkiser, Asklepios, Medicine, and the Politics of Healing in Fifth-Century
Greece: Between Craft and Cult (Baltimore: Johns Hopkins University Press, 2008), 1.
18. Gary B. Ferngren, “Introduction,” in Emma J. Edelstein and Ludwig Edelstein,
Asclepius: Collection and Interpretation of the Testimonies (Baltimore: Johns Hop-
kins University Press, 1998), xviii. This book reprints the famous two-volume study
by the Edelsteins published in 1945. Ferngren is summarizing claims argued by the
Edelsteins.
19. James Longrigg, Greek Medicine from the Heroic to the Hellenistic Age: A Source Book
(1998; repr., New York: Routledge, 2012), 1.
20. Roy Porter, The Greatest Benefit to Mankind: A Medical History of Humanity (New
York: W. W. Norton, 1997), 7.
21. See Sarah Cant and Ursula Sharma, A New Medical Pluralism?: Alternative Medicine,
Doctors, Patients, and the State (1999; repr., New York: Routledge, 2014); Ted J.
Kaptchuk and David M. Eisenberg, “Var iet ies of Healing. 1: Medical Pluralism in the
United States,” Annals of Internal Medicine 135, no. 3 (2001): 189–195; and Charles
Leslie, “Medical Pluralism in World Perspective,” Social Science & Medicine 14B, no. 4
(1980): 191–195.
22. On ancient theories of dreaming, see Patricia Cox Miller, Dreams in Late Antiquity:
Studies in the Imagination of a Culture (Princeton, N.J.: Princeton University Press,
1994). Wickkiser discusses the two-t ier system of medicine in Asklepios, Medicine, and
the Politics of Healing, 42–61.
23. Nutton, Ancient Medicine, 104 and 115.
24. See Hart, Asclepius, 12–15.
25. On represent at ions of Hippocrates, see Jacques Jouanna, Hippocrates, trans. M. B.
DeBevoise (1992; repr., Baltimore: Johns Hopkins University Press, 1999), 38–39.
26. “The Oath,” in Hippocratic Writings, ed. G. E. R. Lloyd, trans. J. Chadwick and W. N.
Mann (1978; repr., New York: Penguin, 1983), 67.
27. C. Kerényi, Asklepios: Archetypal Image of the Physician’s Existence, trans. Ralph
Mannheim (1947; repr., New York: Pantheon, 1959), 41.
28. Mabel L. Lang, Cure and Cult in Ancient Corinth: A Guide to the Asklepieion (Princeton,
N.J.: American School of Classical Studies at Athens, 1977), 15, 22.
N O T E S T O PA G E S 6 4 – 7 9 309
29. Rachel Naomi Remen, Kitchen T able Wisdom: Stories That Heal (New York: Riverhead,
1994), 164; and Pausanias, Guide to Greece, trans. Peter Levi, 2 vols. (New York: Pen-
guin Books, 1971), 1:194 (ii.27.3). I am unable to identify Remen’s source in Cicero.
30. Plato, The Symposium, trans. Christopher Gill (New York: Penguin Books, 1999), 18–19.
Significantly, Gill cites as parallels two tracts from the Hippocratic corpus.
31. Rafael Campo, The Desire to Heal: A Doctor’s Education in Empathy, Identity, and Po-
etry (New York: W. W. Norton, 1997), 13. Subsequent citations will be indicated in the
text as DH.
32. Ariel Roguin, “Rene Theophile Hyacinthe Laënnec (1781–1826): The Man behind the
Stethoscope,” Clinical Medicine and Research 4, no. 3 (2008): 230–235.
33. Audre Lorde, The Cancer Journals, 2nd ed. (San Francisco: Aunt Lute, 1980). Subse-
quent citations w ill be indicated in the text as CJ. See also Audre Lorde, “Uses of the
Erotic: The Erotic as Power” (1978), Sister Outsider: Essays and Speeches (1984; repr.,
Berkeley: Crossing Press, 2007), 53–59.
34. Virginia Woolf, On Being Ill, introduction by Hermione Lee (Ashfield, Mass.: Paris
Press, 2002), 6–7. Subsequent citations w ill be indicated in the text as OBI. On Being
Ill first appeared in 1926 as an essay in the journal New Criterion, edited by T. S. Eliot,
and it went through minor revisions thereafter. The Paris Press edition closely repli-
cates the 1930 Hogarth Press edition.
35. Martin Cutts, Oxford Guide to Plain English, 2nd ed. (New York: Oxford University
Press, 2004), 19.
36. Richard Horton, Health Wars: On the Global Front Lines of Modern Medicine (New
York: New York Review of Books, 2003), 58.
37. Aristotle in Categories 10 discusses the var iet ies of opposition, including the relation
of contraries. See The Complete Works of Aristotle: The Revised Oxford Translation,
ed. Jonathan Barnes, 2 vols. (Princeton, N.J.: Princeton University Press, 1984),
1:18–21.
38. In The Complete Poems of D. H. Lawrence, ed. Vivian de Sola Pinto and Warren Rob-
erts (New York: Penguin Books, 1964), 620 (spelling normalized).
39. Richard Selzer, “The Exact Location of the Soul,” in Mortal Lessons: Notes on the Art
of Surgery (New York: Simon & Schuster, 1976), 18.
40. The Oxford Illustrated Companion to Medicine, 3rd ed., ed. Stephen Lock, John M.
Last, and George Dunea (Oxford: Oxford University Press, 2001), 262.
41. American Medical Association, “The Symbol for a New AMA: Medicine for the
21st Century,” AMA News, June 20, 2005, www.a mednews.com/a rticle/20050620
/opinion/306209958/4/.
42. Jennifer Glaser, “Mortality Can Be a Powerf ul Aphrodisiac,” New York Times, Au-
gust 13, 2006, www.nytimes.com/2006/08/13/fashion/13love.html.
CHAPTER THREE • NOT-K NOWING: MEDICINE IN THE DARK
Epigraph: John Berryman, 77 Dream Songs (New York: Farrar, Straus, 1964), 74 (no. 67).
1. Florida Scott-Maxwell, The Measure of My Days (1968; repr., New York: Penguin, 1979),
69–70. I am grateful to Professor Margaret A. Miller for this reference.
310 N O T E S T O PA G E S 8 0 – 8 7
2. Centers for Disease Control and Prevention, “HIV among Older Americans,”
November 2013, www.cdc.gov/ h iv/pdf/ l ibrary_f actsheet _ H IV_% 20AmongOlder
Americans.pdf.
3. Larry J. Young and Zuoxin Wang, “The Neurobiology of Pair Bonding,” Nature
Neuroscience 7 (2004): 1048–1054.
4. Larry J. Young, “Love: Neuroscience Reveals All,” Nature 457 (2009): 148; and Jarred
Younger, Arthur Aron, Sara Parke, Neil Chatterjee, and Sean Mackey, “Viewing Pic-
tures of a Romantic Partner Reduces Experimental Pain: Involvement of Neural Re-
ward Systems,” PLoS One 5 (2010), doi: 10.1371/journal.pone.0013309.
5. Slavoj Zizek, “The Swerve of the Real,” in Erotikon: Essays on Eros, Ancient and
Modern, ed. Shadi Bartsch and Thomas Bartscherer (Chicago: University of Chicago
Press, 2005), 215.
6. William Carlos Williams, Sappho: A Translation by William Carlos Williams (San
Francisco: Grabhorn, 1957). This single poem was printed separately as a broadside.
7. Williams, Sappho.
8. Kathryn Montgomery, How Doctors Think: Clinical Judgment and the Practice of Med-
icine (New York: Oxford University Press, 2006), 4–5, 49–51, and 86–90.
9. Atul Gawande, Complications: A Surgeon’s Notes on an Imperfect Science (New York:
Picador, 2003), 109, 110.
10. See Montgomery, How Doctors Think, and Jerome Groopman, How Doctors Think
(Boston: Houghton Mifflin, 2007).
11. Don DeLillo, Zero K (New York: Scribner, 2016), 131.
12. In The Letters of John Keats 1814–1821, ed. Hyder Edward Rollins, 2 vols. (Cambridge,
Mass.: Harvard University Press, 1958), 1:193 (21, 27 [?] December 1817).
13. Donald Barthelme, “Not-K nowing,” in Not-Knowing: The Essays and Interviews of
Donald Barthleme, ed. Kim Herzinger (New York: Random House, 1997), 11.
14. Paul Kalanithi, When Breath Becomes Air (New York: Random House, 2016), 170.
15. Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the
Twenty-First Century (Princeton, N.J.: Princeton University Press, 2007), 7, 4.
16. See Tamar Sharon, Human Nature in an Age of Biotechnology: The Case for Mediated
Posthumanism (New York: Springer, 2014).
17. Lori Arviso Alvord and Elizabeth Cohen Van Pelt, The Scalpel and the Silver Bear
(New York: Bantam, 1999), 190.
18. Meghan O’Rourke, “Doctors Tell All and It’s Far Worse Than You Think,” The At-
lantic, November 2014, www.t heatlantic.com/magazine/a rchive/2014/11/doctors-tell
-a ll-a nd-its-bad/380785/.
19. Eva S. Schernhammer and Graham A. Colditz, “Suicide Rates among Physicians: A
Quantitative and Gender Assessment (Meta-A nalysis),” American Journal of Psychi-
atry 161 (2004): 2295–2302. See also Niku K. Thomas, “Resident Burnout,” JAMA
292 (2004): 2880–2889; and Elizabeth J. D’Amico, Susan M. Paddock, Audrey
Burnam, and Fuan-Yue Kung, “Identification of and Guidance for Problem Drinking
by General Medical Providers: Results from a National Survey,” Medical Care 43
(2005): 229–236.
20. Alvord and Van Pelt, Scalpel and the Silver Bear, 190–191.
N O T E S T O PA G E S 8 7 – 9 7 311
21. See, for example, Antonio R. Damasio, Descartes’ Error: Emotion, Reason, and the
H
uman Brain (New York: G. P. Putnam’s Sons, 1994); Norman Doidge, The Brain
That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science
(New York: Penguin, 2007); Jonah Lehrer, How We Decide (Boston: Houghton Mifflin
Harcourt, 2009); and Sara Algoe and Jonathan Haidt, “Witnessing Excellence in Ac-
tion: The ‘Other-Praising’ Emotions of Elevation, Gratitude, and Admiration,” Journal
of Positive Psychology 4 (2009): 105–127. On the neurobiology of moral action and de-
cisions, see also Michael S. Gazzaniga, The Ethical Brain (New York: Dana Press,
2005).
22. See Joseph LeDoux, The Emotional Brain: The Mysterious Underpinnings of Emo-
tional Life (New York: Simon & Schuster, 1996); and Daniel Goleman, Emotional
Intelligence (New York: Bantam, 1995).
23. John Milton, Paradise Lost [1667], 2nd ed., rev. ed., ed. Alistair Fowler (London:
Pearson Longman, 2007), I.250–251. See A. Roger Ekirch, At Day’s Close: Night in
Time Past (New York: W. W. Norton, 2006).
24. William Kentridge, Six Drawing Lessons (Cambridge, Mass.: Harvard University
Press, 2014), 80.
25. Anna Steidle and Lioba Werth, “Freedom from Constraints: Darkness and Dim Illu-
mination Promote Creativity,” Journal of Environmental Psychology 35 (2013): 67–80.
26. Perri Klass, “When Doctors and Patients Speak a Different Language,” in A Not En-
tirely Benign Procedure: Four Years as a Medical Student (New York: G. P. Putnam’s
Sons, 1987), 183.
27. Klass, “Baby Poop,” in A Not Entirely Benign Procedure, 161.
28. E. L. Doctorow, “False Documents” [1977], in E. L. Doctorow: Essays and Conversa-
tions, ed. Richard Trenner (Princeton, N.J.: Ontario Review Press, 1983), 25, 26.
29. Tod Chambers, “From the Ethicist’s Point of View: The Literary Nature of Ethical
Inquiry,” Hastings Center Report 26, no. 1 (1996): 25.
30. Didier Eribon, Insult and the Making of the Gay Self, trans. Michael Lucey, ed.
Michèle Aina Barale, Jonathan Goldberg, Michael Moon, and Eve Kosofsky Sedgwick
(1999; repr., Durham, N.C.: Duke University Press, 2004), 264, 265.
31. Michel Foucault, “Les Reportages d’idées,” Corriere della sera, November 12, 1978,
in Didier Eribon, Michel Foucault, trans. Betsy Wing (1989; repr., Cambridge, Mass.:
Harvard University Press, 1991), 282. Eribon describes Foucault as a “militant intel-
lectual” (210).
32. Quoted in Rux Martin, “Truth, Power, Self: An Interview with Michel Foucault,” Tech-
nologies of the Self, ed. Luther H. Martin, Huck Gutman, and Patrick H. Hutton (Am-
herst: University of Massachusetts Press, 1988), 9.
33. John Cage, quoted in John Ashbery, “Cheering Up Our Knowing,” New York, April 10,
1978, 69.
34. Richard Kearney, On Stories (New York: Routledge, 2002), 83.
35. David M. Eddy, “Variations in Physician Practice: The Role of Uncertainty” [1984],
in Professional Judgment: A Reader in Clinical Decision Making, ed. Jack Dowie and
Arthur Elstein (Cambridge: Cambridge University Press, 1988), 45. I owe this refer-
ence to Groopman, How Doctors Think.
312 N O T E S T O PA G E S 9 8 – 1 0 8
36. Wendy Steiner, The Scandal of Pleasure: Art in an Age of Fundamentalism (Chicago:
University of Chicago Press, 1995).
37. Oliver Sacks, Musicophilia: Tales of M usic and the Brain (New York: Alfred A. Knopf,
2007). As Michiko Kakutani puts it, “In Dr. Sacks’ view, music can aid aphasics and
patients with parkinsonism, and it can help orient and anchor patients with advanced
dementia because ‘musical perception, musical sensibility, musical emotion and mu-
sical memory can survive long a fter other forms of memory have disappeared’ ” (“Power
to Soothe the Savage Breast and Animate the Hemispheres,” review of Musicophilia:
Tales of Music and the Brain, by Oliver Sacks, New York Times, November 20, 2007,
www.nytimes.com/2007/11/20/ books/20kaku.html).
38. Stephen Nachmanovitch, Free Play: Improvisation in Life and Art (New York:
Tarcher / Putnam, 1990), 43.
39. See Robin Wright, “Theatre of War: Sophocles’ Message for American Veterans,” The
New Yorker, September 12, 2016, www.newyorker.com/culture/culture-desk/theatre-of
-war-sophocles-message-for-american-veterans. I am grateful to Professor Marcia Chil-
dress for first calling my attention to Theater of War performances.
40. “Overview,” Theater of War, Outside the Wire, www.outsidethewirellc.com/projects
/t heater-of-w ar/overview. For interpretations of catharsis, see Aristotle’s Poetics:
A Translation and Commentary for Students of Literature, trans. Leon Golden,
commentary O. B. Hardison Jr. (Tallahassee: University of Florida Press, 1981),
114–120.
41. A Midsummer Night’s Dream, IV.i.204—206, in The Riverside Shakespeare (Boston:
42. See the chapter entitled “Records and Progress Notes,” in Brian N. Baird, The Intern-
ship, Practicum, and Field Placement Handbook: A Guide for the Helping Professions,
7th ed. (New York: Routledge, 2013). Baird includes the subsequent passage on
prosecuting attorneys.
43. Wislawa Szymborska, “A Note,” in Monologue of a Dog: New Poems, trans. Clare Ca-
vanagh and Stanislaw Baranczak (New York: Harcourt, 2006), 79–81.
44. Wislawa Szymborska, “Nobel Lecture,” December 7, 1996, in Poems New and Collected
1957–1997, trans. Stanislaw Baranczak and Clare Cavanagh (New York: Harcourt,
1998), xv, xvi.
45. Scott Fishman, M.D., quoted in Claudia Wallis, “The Right (and Wrong) Way to Treat
Pain,” Time, February 20, 2005, http://content.t ime.com/t ime/m agazine/a rticle
/0,9171,1029836,00.html.
CHAPTER FOUR • VAR IET IES OF EROTIC EXPERIENCE: FIVE ILLNESS NARRATIVES
Epigraph: William James, “Conclusions,” in The Varieties of Religious Experience: A Study

in Human Nature (New York: Random House, 1902), 492.
1. Arthur W. Frank, The Wounded Storyteller: Body Illness, and Ethics, 2nd ed. (Chicago:
University of Chicago Press, 2013).
2. Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography, 2nd ed. (La-
fayette, Ind.: Purdue University Press, 1999), 3.
N O T E S T O PA G E S 1 0 9 – 1 2 1 313
3. Anonymous, “Our Family Secrets,” Annals of Internal Medicine 163 (2015): 321. See
also the accompanying editorial regarding the decision to publish (p. 320).
4. Abraham Verghese, “Medicine and Writing,” in Abraham Verghese: FAQ, no date,
http://a brahamverghese.mc2beta.com/ home/faq /#Medicine%20and%20Writing.
5. See Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the H uman
Condition, 2nd ed. (New York: Basic Books, 1992); Rita Charon, Narrative Medicine:
Honoring the Stories of Illness (New York: Oxford University Press, 2006); Arthur W.
Frank, Letting Stories Breathe: A Socio-Narratology (Chicago: University of Chicago
Press, 2010); James W. Pennebaker, Opening Up: The Healing Power of Expressing Emo-
tions, rev. ed. (1990; New York: Guilford, 1997); Richard G. Tedeschi and Law-
rence G. Calhoun, “Posttraumatic Growth: Conceptual Foundations and Empirical
Evidence,” Psychological Inquiry 15, no. 1 (2004): 1–18. The second edition (2013) of
Frank’s Wounded Storyteller contains a valuable new preface that surveys work on ill-
ness and narrative over the preceding decade.
6. William Styron, Darkness Visible: A Memoir of Madness (New York: Random House,
1990), 64. Subsequent citations w ill be indicated in the text as DV.
7. Georges Bataille, Erotism: Death and Sensuality, trans. Mary Dalwood (San Francisco:
City Lights Books, 1986), 11.
8. See National Institute of Mental Health, “Major Depression among Adults,” no date,
www.nimh.nih.gov/ health/statistics/prevalence/major-depression-among-adults.html.
9. See Rita Charon, “Narrative Medicine: A Model for Empathy, Reflection, Profession,
and Trust,” JAMA 286, no. 15 (2001): 1897, 1898.
10. Rose Styron, “Strands,” in Unholy Ghost: Writers on Depression, ed. Nell Casey (New
York: HarperCollins, 2001), 133. Subsequent quotations will be indicated in the text as S.
11. Alexandra Styron, Reading My F ather: A Memoir (New York: Scribner, 2011), 3. Sub-
sequent quotations w ill be indicated in the text by RMF.
12. Sandra Butler and Barbara Rosenblum, Cancer in Two Voices (San Francisco: Spin-
sters Book Company, 1991), i. Subsequent citations w ill be indicated in the text as CTV.
13. Richard Kearney, On Stories (New York: Routledge, 2002), 5.
14. National Cancer Institute, “SEER Stat Fact Sheets: Female Breast Cancer” (Bethesda,
Md.: National Cancer Institute), no date, http://seer.cancer.gov/statfacts/ html/ breast
.html.
15. Stephanie Nolen, 28: Stories of AIDS in Africa (New York: Walker & Company, 2007),
5. Subsequent quotations will be indicated in the text by AA. I am indebted to Nolen
for facts and figures cited in my discussion.
16. See Desmond Tutu HIV Foundation, “Background,” http://desmondtutuhivfoundation
.org.za/a bout/ background/.
17. For additional discussion, see Michael Battle, Reconciliation: The Ubuntu Theology
of Desmond Tutu, rev. ed. (Cleveland: Pilgrim Press, 2009); and Christian B. N. Gade,
“What Is Ubuntu? Different Interpretations among South Africans of African De-
scent,” South African Journal of Philosophy 31 (2012): 484–503.
18. Desmond Tutu, “The Politics of Ubuntu,” Huffington Post, June 10, 2014, www
.huffingtonpost.com/desmond-tutu/t he-politics-of-u buntu _ b_ 5125854.html.
19. See Kathryn Montgomery Hunter, Doctors’ Stories: The Narrative Structure of Med-
ical Knowledge (Princeton, N.J.: Princeton University Press, 1991).
314 N O T E S T O PA G E S 1 2 3 – 1 3 5
20. Jean-Dominique Bauby, The Diving Bell and the Butterfly: A Memoir of Life in Death,
trans. Jeremy Leggatt (1997; repr., New York: Random House, 1997), 9. Subsequent
citations w ill be indicated in the text as DB.
21. William James, “Conclusions,” in Varieties of Religious Experience, 492.
22. Eric J. Leed, The Mind of the Traveler: From Gilgamesh to Global Tourism (New York:
Basic Books, 1991), 276.
23. Bill T. Jones, with Peggy Gillespie, Last Night on Earth (New York: Pantheon, 1995),
246. Subsequent citations w ill be indicated in the text as LN.
24. Judith Mackrell quoted in John O’Mahony, “Body Artist,” The Guardian, June 11,
2004, www.t heguardian.com/stage/2004/jun/1 2/dance.
25. Arlene Croce, “Discussing the Undiscussable” [1994], in Writing in the Dark, Dancing
in the New Yorker (New York: Farrar, Straus and Giroux, 2000), 708. Croce’s objec-
tions to (what she calls) “victim art” are badly outdated. See Tobin Siebers, Disability
Aesthetics (Ann Arbor: University of Michigan Press, 2010).
26. In Bill T. Jones: Still / Here (1997), prod. Bill Moyers (New York: Films Media Group,
2006).
27. World Health Organization, “WHO Definition of Palliative Care,” May 26, 2014, www
.who.int/cancer/palliative/definition/en/.
28. David B. Morris, “Palliation: Shielding the Patient from the Assault of Symptoms,”
Academy Update 7, no. 3 (1997): 1ff; reprinted as “The Cloak and the Shield: A Thumb-
nail History of Palliation,” in Illness, Crisis, & Loss 6, no. 2 (1998): 229–232.
29. Butler and Rosenblum, Cancer in Two Voices, 162.
30. Ezekiel J. Emanuel, “Cost Savings at the End of Life: What Do the Data Show?” JAMA
275 (1996): 1907–1914. See also Baohui Zhang, Alexi A. Wright, Haiden A. Huskamp,
Matthew E. Nilsson, Matthew L. Maciejewski, et al., “Health Care Costs in the Last
Week of Life: Associations with End-of-Life Conversations,” Archives of Internal Med-
icine 169 (2009): 480–488.
31. See the essays collected in Dying Well: The Prospect for Growth at the End of Life, ed.
Ira Byock (New York: Riverhead, 1997). For a general introduction to palliative care,
see Hospice and Palliative Care: Concepts and Practice, ed. Denice C. Sheehan and
Walter B. Forman (Sudbury, Mass.: Jones and Bartlett, 1996).
32. David Barnard, Anna Towers, Patricia Boston, and Yanna Lambrinidou, Crossing
Over: Narratives of Palliative Care (New York: Oxford University Press, 2000), 14.
On the need for new options, see Angelo E. Volandes, The Conversation: A Revolu-
tionary Plan for End-of-Life Care (New York: Bloomsbury, 2015).
33. Oliver Sacks, Gratitude (New York: Alfred A. Knopf, 2016). Sacks’s medical circum-
stances, during the period of composition, are described in a foreword to Gratitude
by Kate Edgar and Bill Hayes.
CHAPTER FIVE • EROS MODIGLIANI: ASSENTING TO LIFE
Epigraph: Georges Bataille, Erotism: Death and Sensuality, trans. Mary Dalwood (San Fran-
cisco: City Lights Books, 1986), 17: “L’action décisive est la mise à nu.”
1. Jacques Lipchitz, “Amedeo Modigliani,” in Modigliani (New York: Harry N. Abrams,

1953), 5.
N O T E S T O PA G E S 1 3 5 – 1 4 3 315
2. Jean Cocteau, My Contemporaries, ed. and trans. Margaret Crosland (1935; repr., Phil-
adelphia: Chilton, 1968), 69.
3. Jean Cocteau, “Preface,” in Franco Russoli, Modigliani (New York: Harry N. Abrams,
1959), 9.
4. Lipchitz, “Amedeo Modigliani,” 6 (“une vie brève mais intense”).
5. Another version reads “Cover him with flowers”; see Charles Douglas, Artist Quarter:
Reminiscences of Montmartre and Montparnasse in the First Two Decades of the Twen-
tieth Century (London: Faber and Faber, 1941), 300. “Charles Douglas” is the pen name
for coauthors Charles Beadle and Douglas Goldring.
6. Douglas, Artist Quarter, 301.
7. Robert Hughes, “And Now the Nudes,” The Guardian, June 10, 2004, www
.t heguardian.com/artanddesign/2004/jun/10/art.
8. Aaron Smith, “Modigliani’s ‘Reclining Nude’ Sells for $170 Million at Christie’s,” CNN
Money, November 10, 2015, http://money.cnn.com/2015/11/09/ luxury/reclining-nude
-modigliani-christies/index.html?i id= o b_ article _footer.
9. Quoted in Douglas, Artist Quarter, 112. On Picasso’s changing costumes, see Dan
Franck, Bohemian Paris: Picasso, Modigliani, Matisse, and the Birth of Modern Art,
trans. Cynthia Hope Liebow (1998; repr., New York: Grove, 2001), 72.
10. Ilya Ehrenburg, People and Life 1891–1921, trans. Anna Bostock and Yvonne Kapp
(New York: Alfred A. Knopf, 1962), 152.
11. Gertrude Stein, Paris France (New York: Charles Scribner’s Sons, 1940), 11.
12. Marevna Vorobëv, Life in Two Worlds, trans. Benet Nash (New York: Abelard-
Schuman, 1962), 157. See also Douglas, Artist Quarter, 98; and Nina Hamnett, Laughing
Torso: Reminiscences of Nina Hamnett (1932; repr., London: Virago, 1984), 54.
13. Herbert Lottman, Man Ray’s Montparnasse (New York: Harry N. Abrams, 2001),
33.
14. Cocteau, “Preface,” in Russoli, Modigliani, 10.
15. “Je suis Modigliani. Juif ” (quoted in Douglas, Artist Quarter, 211).
16. Ehrenburg, People and Life, 154–155.
17. Quoted in Meryle Secrest, Modigliani: A Life (New York: Alfred A. Knopf, 2011), 165.
Survage (1879–1968) is of complicated Russian-Danish-Finnish descent, and his sur-
name has numerous ethnic spellings.
18. In Douglas, Artist Quarter, 87, 201.
20. Cocteau, “Preface,” in Russoli, Modigliani, 10.
21. Quoted in Pierre Sichel, Modigliani: A Biography of Amedeo Modigliani (New York:
Dutton, 1967), 295.
22. Kenneth Clark, The Nude: A Study in Ideal Form (Princeton, N.J.: Princeton Univer-
sity Press, 1956); see chapter 1 (“The Naked and the Nude”).
23. Lynda Nead, The Female Nude: Art, Obscenity and Sexuality (New York: Routledge,
1992), 16.
24. Giorgio Agamben, “Nudity,” in Nudities, trans. David Kishik and Stefan Pedatella
(Stanford, Calif.: Stanford University Press, 2011), 55–90.
25. Francis Carco, The Last Bohemia, from Montmartre to the Quartier Latin, trans. Mad-
eleine Elise Reynier Boyd (New York: H. Holt, 1928), 237.
316 N O T E S T O PA G E S 1 4 3 – 1 5 5
26. Meryle Secrest identifies this passage—inscribed on the back of a painting—as from
Italian novelist Gabriele D’Annunzio (1863–1938), a Modigliani favorite (Modigliani:
A Life, 167).
27. Douglas, Artist Quarter, 227. The unnamed speaker—a “poet friend”—is likely Max
Jacob.
28. In Douglas, Artist Quarter, 194.
29. Lipchitz, “Amedeo Modigliani,” 2.
30. Umberto Boccioni, Carlo Carrá, Luigi Russolo, Giacomo Ball, and Gino Severini,
“Futurist Painting: Technical Manifesto 1910,” in Futurist Manifestos, ed. Umbro
Apollonio, trans. Robert Brain, R. W. Flint, J. C. Higgitt, and Caroline Tisdall (1970;
repr., New York: Viking, 1973), 30–31. See also, F. T. Marinetti, “The Founding and
Manifesto of Futurism 1909,” in Futurist Manifestos, 19–24.
31. André Salmon, quoted in Douglas, Artist Quarter, 202.
32. Picasso, quoted in Jean Clair, “The School of Darkness,” in Picasso Érotique, ed. Jean
Clair (New York: Prestel, 2001), 14.
33. Douglas, Artist Quarter, 107–108.
34. Tsuguharu Foujita, quoted in Sichel, Modigliani, 407.
35. The Education of a French Model: Kiki’s Memoirs, trans. Samuel Putnam, introduced
by Ernest Hemingway (1930; repr., New York: Belmont, 1962), 36. First published in
English as The Education of a French Model: The Loves, Cares, Cartoons and Carica-
tures of Alice Prin, trans. Samuel Putnam (New York: Boar’s Head Books, 1950); and
in French as Les souvenirs de Kiki (Paris: H. Broca, 1929).
36. Anne Carson, Eros the Bittersweet (1986; repr., Normal, Ill.: Dalkey Archive, 1998),
12–17.
37. Bataille, Erotism, 17.
38. In Douglas, Artist Quarter, 260.
39. Franck, Bohemian Paris, 23.
40. Archibald MacLeish, “Ars Poetica,” in Collected Poems 1917–1982 (Boston: Houghton
Mifflin, 1985).
41. Philip Roth, The D ying Animal (Boston: Houghton Mifflin, 2001), 98.
43. Franck, Bohemian Paris, 181.
44. See Holger Afflerback, “The Topos of Improbable War in Europe before 1914,” in An
Improbable War?: The Outbreak of World War I and European Culture before 1914, ed.
Holger Afflerback and David Stevenson (Oxford: Oxford University Press, 2007),
161–182; and Christopher Clark, The Sleepwalkers: How Europe Went to War in 1914
(New York: Harper, 2012), 562.
45. On socialists as “bald-headed parrots,” see Ehrenburg, People and Life, 199; on Modi-
gliani as a “violent pacifist,” see Douglas, Artist Quarter, 268–269.
46. Modris Eksteins, Rites of Spring: The G reat War and the Birth of the Modern Age
(Boston: Houghton Mifflin, 1989), 144.
47. Quoted in Secrest, Modigliani: A Life, 166–167.
48. Charles Baudelaire, Artificial Paradises, trans. Stacy Diamond (1860; repr., New York:
Citadel Press, 1996), 29.
N O T E S T O PA G E S 1 5 5 – 1 6 5 317
49. Jean Cocteau, Opium: The Diary of a Cure, trans. Margaret Crosland and Sinclair
Road, rev. ed. (1930; repr., London: Peter Owen, 1968), 66.
50. The Education of a French Model: Kiki’s Memoirs, 41.
51. Secrest, Modigliani: A Life, 184.
53. Secrest, Modigliani: A Life, 298.
54. Douglas, Artist Quarter, 258, 122.
56. Cocteau, My Contemporaries, 56.
57. See Wassily Kandinsky, Concerning the Spiritual in Art, trans. M. T. H. Sadler (1911;
repr., New York: Dover, 1977), 38.
58. Philip Ball, Bright Earth: Art and the Invention of Color (New York: Farrar, Straus and
Giroux, 2002), 176.
59. Quoted by Russoli, Modigliani, 33 (“Mais, monsieur, je n’aime pas les fesses”).
60. Cocteau, My Contemporaries, 57.
CHAPTER SIX • THE INFINITE FACES OF PAIN: EROS AND ETHICS
Epigraph: “Grace and Clarity” [1944], in Silence: Lectures and Writings by John Cage (Mid-
dleton, Conn.: Wesleyan University Press, 1961), 93.
1. See Kay L. Larson, Where the Heart Beats: John Cage, Zen Buddhism, and the Inner
Life of Artists (New York: Penguin, 2012); and John Russon, “Self and Suffering in Bud-
dhism and Phenomenology: Existential Pain, Compassion and the Problems of Insti-
tutional Healthcare,” Cultural Ontology of the Self in Pain, ed. Siby K. George and
P. G. Jung (New York: Springer, 2016), 181–195.
2. Cage, “Grace and Clarity,” 95.
3. Institute of Medicine, Relieving Pain in America: A Blueprint for Transforming Pre-
vention, Care, Education, and Research (Washington, D.C.: National Academies Press,
2011), 1.
4. Richard L. Nahin, “Estimates of Pain Prevalence and Severity in Adults: United States,
2012,” Journal of Pain 16, no. 8 (2015): 769–780.
5. Institute of Medicine, Relieving Pain in America, 1.
6. See David B. Morris, The Culture of Pain (Berkeley: University of California Press,
1991); and “Sociocultural Dimensions of Pain Management,” in Bonica’s Management
of Pain, 4th ed., ed. Jane C. Ballantyne, James P. Rathmell, and Scott M. Fishman (New
York: Lippincott Williams & Wilkins, 2010), 133–145; also Pain and its Transforma-
tions: The Interface of Biology and Culture, ed. Sarah Coakley and Kay Kaufman She-
lemay (Cambridge, Mass.: Harvard University Press, 2008).
7. David Mikics, A New Handbook of Literary Terms (New Haven, Conn.: Yale Univer-
sity Press, 2010), 156.
8. Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (New York:
Oxford University Press, 1985), 11; quotations that follow refer to the introduction
(pp. 3–23).
318 N O T E S T O PA G E S 1 6 5 – 1 7 2
9. See Ronald Melzack, “The McGill Pain Questionnaire: Major Properties and Scoring
Methods,” Pain 1, no. 3 (1975): 277–299.
10. Virginia Woolf, On Being Ill, introduction by Hermione Lee (Ashfield, Mass.: Paris
Press, 2002), 6–7. As noted previously, On Being Ill first appeared as an essay in 1926.
11. David Biro, The Language of Pain: Finding Words, Compassion, and Relief (New York:
W. W. Norton, 2010), 12, 20. See also David Biro, One Hundred Days: My Unexpected
Journey from Doctor to Patient (New York: Pantheon, 2000).
12. SUPPORT Principal Investigators, “A Controlled Trial to Improve Care for Seriously
Ill Hospitalized Patients,” JAMA 274 (1995): 1591–1598.
13. John D. Loeser, “What Is Chronic Pain?,” Theoretical Medicine 12 (1991): 215, 216.
14. Classification of Chronic Pain, 2nd ed., ed. Harold Merskey and Nikolai Bogduk (1994;
repr., Seattle: IASP Press, 2002), 210.
15. Timothy L. Bayer, Paul E. Baer, and Charles Early, “Situational and Psychophysio-
actors in Psychologically Induced Pain,” Pain 44 (1991): 45–50.
logical F
16. See, in order of reference, David A. Williams and Beverly E. Thorn, “An Empirical As-
sessment of Pain Beliefs,” Pain 36 (1989): 351–358; David A. Williams, “Acute Pain
Management,” in Psychological Approaches to Pain Management: A Practitioner’s
Handbook, ed. Robert J. Gatchel and Dennis C. Turk (New York: Guilford, 1996),
55–77; David A. Williams and Francis J. Keefe, “Pain Beliefs and the Use of
Cognitive-B ehavioral Coping Strategies, Pain 46 (1991): 185–190; Mark P. Jensen
and Paul Karoly, “Pain-Specific Beliefs, Perceived Symptom Severity, and Adjust-
ment to Chronic Pain,” Clinical Journal of Pain 8 (1992): 123–130; Michael S.
Shutty Jr., Douglas E. DeGood, and Diane H. Tuttle, “Chronic Pain Patients’ Beliefs
about their Pain and Treatment Outcomes,” Archives of Physical Medicine and Reha-
bilitation 71 (1990): 128–132.
17. Lous Heshusius, Inside Chronic Pain: An Intimate and Critical Account (Ithaca, N.Y.:
Cornell University Press, 2009). Subsequent citations will be indicated in the text as ICP.
18. R. H. Gracely, M. E. Geisser, T. Giesecke, M. A. B. Grant, F. Petzke, et al., “Pain Cata-
strophizing and Neural Responses to Pain among Persons with Fibromyalgia,” Brain
127, no. 4 (2004): 835–843.
19. Timothy D. Wilson, Redirect: The Surprising New Science of Psychological Change
(New York: L ittle, Brown, 2011).
20. Daniel B. Carr and Ylisabyth S. Bradshaw, “Time to Flip the Pain Curriculum?” An-
esthesiology 120 (2014): 1–3.
21. See, in order of reference, Henriët van Middendorp, Mark A. Lumley, Johannes
W. G. Jacobs, Johannes W. J. Bijlsma, and Rinie Greenen, “The Effects of Anger and Sad-
ness on Clinical Pain Reports and Experimentally-Induced Pain Thresholds in Women
with and without Fibromyalgia,” Arthritis Care & Research 62 (2010): 1370–1376; Wil-
liam Breitbart, Barry D. Rosenfeld, Steven D. Passik, Margaret V. McDonald, Howard
Thaler, and Russell K. Portenoy, “The Undertreatment of Pain in Ambulatory AIDS
Patients,” Pain 65 (1996): 243–249; Roger B. Fillingim, Christopher D. King, Marga-
rete C. Ribeiro-Dasilva, Bridgett Rahim-Williams, and Joseph L. Riley III, “Sex,
Gender, and Pain: A Review of Recent Clinical and Experimental Findings,” Journal
of Pain 10 (2009): 447–485; Anita M. Unruh, “Gender Variations in Clinical Pain Ex-
N O T E S T O PA G E S 1 7 3 – 1 7 8 319
perience,” Pain 65 (1996): 123–167; Maryann S. Bates, W. Thomas Edwards, and

Karen O. Anderson, “Ethnocultural Influences on Variation in Chronic Pain Percep-
tion,” Pain 52 (1993): 101–112; and Steven F. Brena, Steven H. Sanders, and Hiroshi
Motoyama, “American and Japanese Chronic Low Back Pain Patients: Cross-Cultural
Similarities and Differences,” Clinical Journal of Pain 6 (1990): 118–124.
22. Sean Mackey, quoted in Tara Parker-Pope, “Love and Pain Relief,” New York Times,
October 13, 2010.
23. Jill Bolte Taylor, My Stroke of Insight: A Brain Scientist’s Personal Journey (New York:
Viking, 2006), 151.
24. See William Hirstein, Brain Fiction: Self-Deception and the Riddle of Confabulation
(Cambridge, Mass.: MIT Press, 2005), 5: “T here is also a clear connection here to the
human gift for storytelling.”
25. Roland Barthes, The Pleasure of the Text, trans. Richard Miller (1973; repr., New
York: Hill and Wang, 1975).
26. Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics, 2nd ed. (Chicago:
University of Chicago Press, 2013), 23–25.
27. Quoted in Keith H. Basso, Wisdom Sits in Places: Landscape and Language among the
Western Apache (Albuquerque: University of New Mexico Press, 1996), 59.
28. Jean-François Lyotard and Jean-Loup Thébaud, Just Gaming, trans. Wlad Godzich
(Minneapolis: University of Minnesota Press, 1985), 32–35.
29. Robert Coles, The Call of Stories: Teaching and the Moral Imagination (Boston:
30. Mark Johnson, Moral Imagination: Implications of Cognitive Science for Ethics (Chi-
cago: University of Chicago Press, 1993), 11.
31. See, for example, Narrative Ethics: The Role of Stories in Bioethics, ed. Martha Montello,
Hastings Center Report 44, no. 1 (2014): S2–S44; Stories Matter: The Role of Narrative
in Medical Ethics, ed. Rita Charon and Martha Montello (New York: Routledge,
2002); Tod Chambers, The Fiction of Bioethics: Cases as Literary Texts (New York:
Routledge, 1999); Stories and Their Limits: Narrative Approaches to Bioethics, ed.
Hilde Lindemann Nelson (New York: Routledge, 1997); Sally Gaddow, “Relational
Narrative: The Postmodern Turn in Nursing Ethics,” Scholarly Inquiry for Nursing
Practice 13, no. 1 (1999): 57–69; Adam Zachary Newton, Narrative Ethics (Cambridge,
Mass.: Harvard University Press, 1995); and William J. Ellos, Narrative Ethics (Ave-
bury, UK: Ashgate, 1994).
32. Emily Dickinson, The Complete Poems of Emily Dickinson, ed. Thomas H. Johnson
(Boston: Little, Brown, 1960), no. 650.
33. My account is based on Robert Pear, “Mothers on Medicaid Overcharged for Pain Re-
lief,” New York Times, March 8, 1999, www.nytimes.com/1999/03/08/us/mothers-on
-medicaid-overcharged-for-pain-relief.html.
34. Harald Schrader and Diana Obelieniene, “Natural Evolution of Late Whiplash Syn-
drome outside the Medicolegal Context,” The Lancet 347 (1996): 1207–1211.
35. George Mendelson, “Compensation and Chronic Pain,” Pain 48 (1992): 121–123; and
Robert W. Teasell, “Compensation and Chronic Pain,” Clinical Journal of Pain 17
(2001): S46–S51.
320 N O T E S T O PA G E S 1 7 9 – 1 8 3
36. Back Pain in the Workplace: Management of Disability in Nonspecific Conditions: A Re-
port of the Task Force on Pain in the Workplace of the International Association for the
Study of Pain, ed. Wilbert E. Fordyce (Seattle: IASP Press, 1995), xiii.
37. Ben A. Rich, “A Legacy of Silence: Bioethics and the Culture of Pain,” Journal of Med-
ical Humanities 18 (1997): 233–259.
38. Fiona Stockard, “Painkiller Addiction Facts and Statistics,” Lighthouse Recovery In-
stitute, http:// l ighthouserecoveryinstitute.com/painkiller-addiction-facts/.
39. Centers for Disease Control and Prevention, “Today’s Heroin Epidemic,” July 7, 2015,
www.cdc.gov/v italsigns/ heroin/.
40. Peter M. Grace, Keith A. Strand, Erika L. Galer, Daniel J. Urban, Xiaohui Wang, et al.,
“Morphine Paradoxically Prolongs Neuropathic Pain in Rats by Amplifying Spinal
NLRP3 Inflammasome Activation,” Proceedings of the National Academy of Sciences
of the United States of America 113, no. 24 (2016): E3441–E3450.
41. Art Van Zee, “The Promotion and Marketing of OxyContin: Commercial Triumph,
Public Health Tragedy,” American Journal of Public Health 99, no. 2 (2009): 221–222.
42. Richard Kearney, On Stories (New York: Routledge, 2002), 91–117.
43. Carmen R. Green, Karen O. Anderson, Tamara A. Baker, Lisa C. Campbell, Sheila
Decker, et al., “The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities
in Pain,” Pain Medicine 4, no. 3 (2003): 277–294; and Sophie Trawalter, Kelly M.
Hoffman, and Adam Waytz, “Racial Bias in Perceptions of Others’ Pain,” PLoS ONE 7,
no. 11 (2012), http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0048546.
44. Joan Stephenson, “Experts Say AIDS Pain ‘Dramatically Undertreated,’ ” JAMA 276
(1996): 1369–1370.
45. Raymond Tait, quoted in Abby Goodnough, “Minorities Seeking Pain Relief Are
Shortchanged in Treatment,” New York Times, August 10, 2016. See Raymond C.
Tait, John T. Chibnall, Elena M. Anderson, and Nortin M. Hadler, “Management of
Occupational Back Injuries: Differences among African Americans and Cauca-
sians,” Pain 112 (2004): 389–396; and Raymond C. Tait and John T. Chibnall, “Ra-
cial / Ethnic Disparities in the Assessment and Treatment of Pain,” American Psy-
chologist 69 (2014): 131–141.
46. Knox H. Todd, “Influence of Ethnicity on Emergency Department Pain Management,”
Emergency Medicine 13 (2001): 274–278; Salimah H. Meghani, Eeeseung Byun, and
Rollin M. Gallagher, “Time to Take Stock: A Meta-A nalysis and Systematic Review
of Analgesic Treatment Disparities for Pain in the United States,” Pain Medicine 13
(2012): 150–174.
47. R. Sean Morrison, Sylvan Wallenstein, Dana K. Natale, Richard S. Senzel, and Lo-Li
Huang, “ ‘We Don’t Carry That’—Failure of Pharmacies in Predominantly Nonwhite
Neighborhoods to Stock Opioid Analgesics,” New E ngland Journal of Medicine 342
(2000): 1023–1026; and Anthony DePalma, “In Mexico, Pain Relief Is a Medical and
Pol itical Issue,” New York Times, June 19, 1996, www.nytimes.com/1996/06/19/world
/in-mexico-pain-relief-is-a-medical-a nd-political-issue.html.
48. Roger B. Fillingim, “Individual Differences in Pain Responses,” Current Rheumatology
Reports 7, no. 5 (2005): 342–347; Zsuzsanna Wiesenfeld-Hallin, “Sex Differences in
Pain Perception,” Gender Medicine 2, no. 3 (2005): 137–145; and Catherine J. Binkley,
N O T E S T O PA G E S 1 8 3 – 1 9 5 321
Abbie Beacham, William Neace, Ronald G. Gregg, Edwin B. Liem, and Daniel I.
Sessler, “Genetic Variations Associated with Red Hair Color and Fear of Dental
Pain, Anxiety Regarding Dental Care and Avoidance of Dental Care,” Journal of the
American Dental Association 140 (2009): 896–905.
49. The G reat Moment, dir. Preston Sturges (1944; repr., Universal City, Calif.: Universal,
2006), DVD. The screenplay (entitled Triumph over Pain) is available in Four More
Screenplays by Preston Sturges, introduction by Brian Henderson (Berkeley: Uni-
versity of California Press, 1995). Paramount edited Sturges’s film before its release.
See René Fülöp-Miller, Triumph over Pain, trans. Eden and Cedar Paul (New York:
The Literary Guild of America, 1938); and Susan Sontag, Regarding the Pain of
Others (New York: Farrar, Straus and Giroux, 2003).
50. Edmund D. Pellegrino, “Emerging Ethical Issues in Palliative Care,” JAMA 279 (1998):
1521.
51. Antonio R. Damasio, Descartes’ Error: Emotion, Reason, and the H uman Brain (New
York: G. P. Putnam’s Sons, 1994), 34–51.
52. Rafael Campo, The Desire to Heal: A Doctor’s Education in Empathy, Identity, and Po-
etry (New York: W. W. Norton, 1997), 132.
53. Emanuel Levinas, Ethics and Infinity: Conversations with Philippe Nemo, trans.
Richard A. Cohen (1982; repr., Pittsburgh: Duquesne University Press, 1985), 87.
54. Levinas, Ethics and Infinity, 87; and Emmanuel Levinas, Totality and Infinity: An Essay
on Exteriority, trans. Alphonso Lingis (1961; repr., Pittsburgh: Duquesne University
Press, 1969), 201, containing a section titled “Ethics and the Face” (pp. 194–219).
CHAPTER SEVEN • BLACK SWAN SYNDROME: PROBABLE IMPROBABILITIES
Epigraph: Richard Dawkins, The Blind Watchmaker: Why the Evidence of Evolution Reveals
a Universe without Design (New York: W. W. Norton, 1986), 317.
1. “The Oath of Maimonides,” in S. Y. Tan and M. E. Yeow, “Moses Maimonides

(1135–1204): Rabbi, Philosopher, Physician,” Singapore Medical Journal 43, no. 11
(2002): 551–553.
2. Guy B. Faquet, The War on Cancer: An Anatomy of Failure, A Blueprint for the Future
(New York: Springer, 2008), 109.
3. Ian Hacking, The Emergence of Probability: A Philosophical Study of Early Ideas about
Probability, Induction and Statistical Inference (1975; repr., Cambridge: Cambridge
University Press, 1978), 11.
4. “Angelina Jolie Cancer Surgery: Actress to Have Another Procedure to Prevent Dis-
ease,” Huffington Post, March 13, 2014, www.huffingtonpost.com/2014/03/13/a ngelina
-jolie-cancer-surgery_n _ 4954496.html.
5. Angelina Jolie Pitt, “Angelina Jolie Pitt: Diary of a Surgery,” New York Times, March 24,
2015, www.nytimes.com/2015/03/24/opinion/angelina-jolie-pitt-diary-of-a-surgery.html.
6. Elizabeth Wurtzel, “The Breast Cancer Gene and Me,” New York Times, September 27,
2015, www.nytimes.c om/2 015/0 9/2 7/opinion/s unday/e lizabeth-w urtzel-t he-breast
-cancer-gene-a nd-me.html.
322 N O T E S T O PA G E S 1 9 6 – 2 0 9
7. Nassim Nicholas Taleb, The Black Swan: The Impact of the Highly Improbable, 2nd ed.
(New York: Random House, 2010); see also Fooled by Randomness: The Hidden Role
of Chance in Life and in the Markets, 2nd ed. (New York: Random House, 2005).
8. Taleb, Black Swan, 7.
9. See Leo Hickman, “How Algorithms Rule the World,” The Guardian, July 1, 2013,
www.t heguardian.com/science/2013/jul01/ how-a lgorithms-r ule-t he-world-n sa; and
Thomas E. Kottke and Courtney Jordan Baechler, “An Algorithm that Identifies Cor-
onary and Heart Failure Events in the Electronic Health Record,” Preventing Chronic
Disease, February 28, 2013, doi: http://d x.doi.org/10.5888/pcd10.1 20097.
10. See Alan Hájek, “Interpretations of Probability,” in The Stanford Encyclopedia of Phi-
losophy, ed. Edward N. Zalta (Stanford, Calif.: Metaphysics Research Lab, Center for
the Study of Language and Information, December 19, 2011, revision), http://plato
.stanford.edu/entries/probability-interpret/.
11. Joan Didion, The Year of Magical Thinking (New York: Alfred A. Knopf, 2005), 3
(italics in the original).
12. Didion, Year of Magical Thinking, 27.
13. David Lewis-Williams, The Mind in the Cave: Consciousness and the Origins of Art
(London: Thames & Hudson, 2002), 124–126.
14. William James, “Mysticism,” in The Var ieties of Religious Experience: A Study in
Human Nature (New York: Random House, 1902), 378–379.
15. Didion, Year of Magical Thinking, 42.
16. Leslie Jamison, The Empathy Exams: Essays (Minneapolis: Greywolf, 2014), 1.
17. Cristian Tomasetti and Bert Vogelstein, “Variations in Cancer Risk among Tissues Can
Be Explained by the Number of Cell Divisions,” Science, 347, no. 6217 (2015): 78–81.
See “Most Types of Cancer Largely Down to Bad Luck Rather Than Lifestyle or
Genes,” The Guardian, January 1, 2015, www.t heguardian.com/society/2015/jan/01
/t wo-t hirds-cancer-cases-caused-bad-luck-l ifestyle-genes.
18. Taleb, Black Swan, xxiii.
19. Quoted in Margaret Plews-Ogan, Justine E. Owens, and Natalie May, Choosing
Wisdom: Strategies and Inspiration for Growing through Life-C hanging Difficulties
(Philadelphia: Templeton, 2012), 45.
20. Institute of Medicine, To Err Is Human: Building a Safer Health System (Washington,
D.C.: National Academy Press, 1999); Jawahar Kalra, Natasha Kalra, and Nick Baniak,
“Medical Error, Disclosure and Patient Safety: A Global View of Quality Care,” Clinical
Biochemistry 46, nos. 13–14 (2013): 1161–1169; and Martin Makary and Michael
Daniel, “Medical Error—T he Third Leading Cause of Death in the US,” BMJ, May 3,
2016, doi: http://d x.doi.org /10.1136/ bmj.i 2139.
21. Plews-Ogan, Owens, and May, Choosing Wisdom, 45.
22. Danielle Ofri, What Doctors Feel: How Emotions Affect the Practice of Medicine (Boston:
Beacon, 2013), 131.
23. Stephen Jay Gould, “The Median Isn’t the Message,” Discover Magazine 6 ( June 1985):
40–42.
24. Alex Cipriano, “The 7 Most Bizarrely Unlucky People Who Ever Lived,” Cracked,
June 1, 2009, www.cracked.com/a rticle _17416_t he-7-most-bizarrely-u nlucky-people
-who-ever-l ived.html.
N O T E S T O PA G E S 2 1 0 – 2 1 8 323
25. Centers for Disease Control and Prevention, “Heart Disease Facts,” August 10, 2015,
www.cdc.gov/HeartDisease/facts.htm.
26. V. S. Ramachandran, The Tell-Tale Brain: Unlocking the Mystery of H uman Nature
(New York: Windmill, 2011), 232.
27. Rachel Naomi Remen, Kitchen Table Wisdom: Stories That Heal (New York: River-
head, 1996), 247.
28. See Guy Lyon Playfair, Twin Telepathy, 2nd ed. (Gloucestershire, UK: History Press,
2008), xiv.
29. Nate Silver, The Signal and the Noise: Why So Many Predictions Fail—But Some Don’t
(New York: Penguin, 2012).
30. David M. Eisenberg, Roger B. Davis, Susan L. Ettner, Scott Appel, Sonja Wilkey, et al.,
“Trends in Alternative Medicine Use in the United States, 1990–1997: Results of a
Follow-up National Survey,” JAMA 280 (1998): 1569–1575; David Eisenberg and Cathe-
rine Woteki, Exploring Complementary and Alternative Medicine (Washington, D.C.:
National Academies Press, 2003); and Hilary A. Tindle, Roger B. Davis, Russell S.
Phillips, and David M. Eisenberg, “Trends in Use of Complementary and Alternative
Medicine by US Adults: 1997–2002,” Alternative Therapies in Health and Medicine 11
(2005): 42–49.
31. Francis S. Collins, “NIH Complementary and Integrative Health Agency Gets New
Name,” NIH News & Events, December 17, 2014, www.n ih.gov/news-events/news
-releases/n ih-complementary-integrative-health-agency-gets-new-name.
32. National Center for Complementary and Integrative Health, “The Use of Complemen-
tary and Alternative Medicine in the United States: Cost Data,” January 4, 2016,
https://nccih.n ih.gov/news/camstats/costs/costdatafs.htm.
33. Bernard D. Beitman, Connecting with Coincidence: The New Science for Using Syn-
chronicity and Serendipity in Your Life (Deerfield Beach, Fla.: Health Communica-
tions, 2016).
34. Jean-Dominique Bauby, The Diving Bell and the Butterfly: A Memoir of Life in Death,
trans. Jeremy Leggatt (New York: Random House, 1997), 17.
35. Anne Louise Germaine de Staël, Letter to Juliette Récamier (1810), in J. Christopher
Herold, Mistress to an Age: A Life of Madame de Staël (Indianapolis: Bobbs-Merrill,
1958), 401.
36. Charles Perrow, Normal Accidents: Living with High-Risk Technologies (New York:
Basic Books, 1984), 11.
37. Erik B. Schelbert, Jie J. Cao, Sigurdur Sigurdsson, Thor Aspelund, Peter Kellman,
et al., “Prevalence and Prognosis of Unrecognized Myocardial Infarction Determined
by Cardiac Magnetic Resonance in Older Adults,” JAMA 308 (2012): 890–897.
38. Centers for Disease Control and Prevention, “Ehrlichiosis: Statistics and Epidemi-
ology,” September 5, 2013, www.cdc.gov/Ehrlichiosis/stats/. See also, Barbara Fouts
Flicek, “Rickettsial and Other Tick-Borne Infections,” Critical Care Nursing Clinics
of North America 19 (2007): 27–38.
39. Warren H. Cole, “Efforts to Explain Spontaneous Regression of Cancer,” Journal of
Surgical Oncology 17, no. 3 (1981): 201–209.
40. Andrew Weil, Spontaneous Healing: How to Discover and Enhance Your Body’s Natural
Ability to Maintain and Heal Itself (New York: Alfred A. Knopf, 1995); and Jacalyn
324 N O T E S T O PA G E S 2 1 9 – 2 2 4
Duffin, Medical Miracles: Doctors, Saints, and Healing in the Modern World (Oxford:
Oxford University Press, 2009).
41. Atul Gawande, “The Bell Curve: What Happens When Patients Find Out How Good
Their Doctors R eally Are?,” The New Yorker, December 6, 2004, www.newyorker
.com/magazine/2004/1 2/06/t he-bell-curve.
42. Milton DeLugg and Willie Stein, “Orange Colored Sky” (New York: Frank Music
Corp., 1950). It was first recorded in 1950 with Janet Brace singing; in 1950 it also be-
came a Billboard hit song when recorded by Nat “King” Cole.
CHAPTER EIGHT • LIGHT AS ENVIRONMENT: HOW NOT TO LOVE NATURE
Epigraph: Joseph Warton, “The Enthusiast, Or The Lover of Nature” [1744], in English
Poetry of the Mid and Late Eighteenth Century, ed. Ricardo Quintana and Alvin Whitley
(New York: Alfred A. Knopf, 1963). Warton’s reference to enthusiasm still carried its ear-
lier religious connotation as “possession by a god” (Greek en = within and theos = god).
1. Cheryl Keenan, “Thousands Affected by ‘Once-in-a-Millennium’ Flooding,” The La-

fayette Tribune, June 27, 2016, www.fayettetribune.com/news/thousands-affected-by
-once-in-a-millennium-flooding/article_c5d3d3ce-3c1d-11e6-bcbe-ef7611dd6cfd.html.
2. René Descartes, Discourse on the Method of Rightly Conducting One’s Reason and of
Seeking Truth in the Sciences [1637], ed. and trans. Charles W. Eliot, Harvard Classics
(New York: Collier, 1909–1914), part vi (“maîtres et possesseurs de la nature”). On the
gendering of the natural world, a persistent theme in ecofeminism, see Carolyn Mer-
chant, The Death of Nature: W omen, Ecology, and the Scientific Revolution (New York:
Harper & Row, 1980).
3. Terry Tempest Williams and Mary Frank, Desert Quartet: An Erotic Landscape (New
York: Pantheon, 1995), 3. Frank provides illustrations.
4. Terry Tempest Williams, “The Erotics of Place,” Whole Earth 91 (Winter 1997), 53–54,
reprinted from An Unspoken Hunger: Stories from the Field (New York: Pantheon,
1994). See also Sarah McFarland Taylor, “Land as Lover: Mormon Eco-Eroticism and
Planetary Plural Marriage in the Work of Terry Tempest Williams,” Nova Religio: The
Journal of Alternative Religions 8, no. 1 (2004): 39–56.
5. Williams and Frank, Desert Quartet, 10.
6. Kim Levin, “The Eye of Ra,” Light in Art, ed. Thomas B. Hess and John Ashbery (New
York: Collier, 1969), 21–36. See also Erik Hornung, Akhenaten and the Religion of Light
[1995], trans. David Lorton (Ithaca, N.Y.: Cornell University Press, 1999).
7. See Patrik Reuterswärd, “What Color Is Divine Light?” in Light in Art, ed. Hess and
Ashbery, 101–124.
8. Albert Einstein, quoted in Emil Wolf, “Einstein’s Researches on the Nature of Light,”
Optics News 5 (1979): 24.
9. Ralph Baierlein, Newton to Einstein: The Trail of Light: An Excursion to the Wave-
Particle Duality and the Special Theory of Relativity (Cambridge: Cambridge Univer-
sity Press, 1992), 170.
10. See Sidney Perkowitz, Empire of Light: A History of Discovery in Science and Art (Wash-
ington, D.C.: Joseph Henry, 1996), 19–39; Arthur Zajonic, Catching the Light: The
N O T E S T O PA G E S 2 2 4 – 2 3 0 325
Entwined History of Light and Mind (New York: Bantam, 1993); and David Park, The
Fire within the Eye: A Historical Essay on the Nature and Meaning of Light (Princeton,
N.J.: Princeton University Press, 1997).
11. Quoted in Elaine Pagels, The Gnostic Gospels (New York: Random House, 1979), 120.
12. Jodi Magness, “Illuminating Byzantine Jerusalem: Oil Lamps Shed Light on Early
Christian Worship,” Biblical Archaeology Review 24, no. 2 (1998): 42.
13. Wolfgang Schivelbusch, Disenchanted Night: The Industrialization of Light in the
Nineteenth Century [1983], trans. Angela Davies (1988; repr., Berkeley: University of
California Press, 1995), 124–126. Also see Ruth G. Sikes, “The History of Suntanning:
A Love / Hate Affair,” Journal of Aesthetic Science 1, no. 2 (1998): 1–7; and Ferenc Morton
Szasz, The Day the Sun Rose Twice: The Story of the Trinity Site Nuclear Explosion,
July 16, 1945 (Albuquerque: University of New Mexico Press, 1984).
14. Eviatar Nevo, Mosaic Evolution of Subterranean Mammals: Regression, Progression,
and Global Convergence (New York: Oxford University Press, 1999); and, in a review
of Nevo, Hynek Burda, “Light from Underground,” Nature 402 (1999): 725.
15. J. Lawson Dick, Rickets: A Study of Economic Conditions and Their Effects on the Health
of the Nation (London: Heinemann, 1922), 3, 91.
16. See, for example, Michael J. Lillyquist, Sunlight and Health (New York: Dodd, Mead,
1985).
17. J. A. Parrish, “The Scope of Photomedicine,” The Science of Photomedicine, ed.
James D. Regan and John A. Parrish (New York: Plenum, 1982), 6.
18. Natalie Angier, “Do Races Differ? Not R eally, Genes Show,” New York Times, Au-
gust 22, 2000, www.nytimes.com/2000/08/22/science/do-races-differ-not-really
-genes-show.html. See also Alan H. Goodman, “Why Genes Don’t Count (for Racial
Differences in Health),” American Journal of Public Health 90, no. 11 (2000):
1699–1702.
19. See Physiology and Pharmacology of Biological Rhythms, ed. Peter H. Redfern and
Björn Lemmer (New York: Springer-Verlag, 1997); Biological Clocks: Mechanisms and
Applications, ed. Yvan Touitou (New York: Elsevier, 1998); and Biologic Effects of Light
2001: Proceedings of a Symposium, ed. Michael F. Holick (Boston: Kluwer Academic,
2002).
20. Robert Y. Moore, “The Organization of the H uman Circadian Timing System,” The
Human Hypothalamus in Health and Disease, ed. D. F. Swaab, M. A. Hofman,
M. Mirmiran, et al. (New York: Elsevier, 1992), 101–115.
21. Biological Rhythms in Clinical and Laboratory Medicine, ed. Y. Touitou and E. Haus
(New York: Springer-Verlag, 1992).
22. H. J. Lynch, M. H. Deng, and R. J. Wurtman, “Indirect Effects of Light: Ecological
and Ethological Considerations,” Annals of the New York Academy of Sciences 453 (1985),
231–241.
23. Gregory M. Brown, “Light, Melatonin and the Sleep-Wake Cycle,” Journal of Psychi-
atry and Neuroscience 19 (1994): 345–353.
24. Karen T. Stewart, Benita C. Hayes, and Charmane I. Eastman, “Light Treatment for
NASA Shiftworkers,” Chronobiology International 12 (1995): 141–151.
25. Norman E. Rosenthal, David A. Sack, J. Christian Gillin, Alfred J. Lewy, Frederick K.
Goodwin, et al., “Seasonal Affective Disorder: A Description of the Syndrome and
326 N O T E S T O PA G E S 2 3 0 – 2 3 3
Preliminary Findings with Light Therapy,” Archives of General Psychiatry 41 (1984):

72–80.
26. Dan G. Blazer, Ronald C. Kessler, and Marvin S. Swartz, “Epidemiology of Recurrent
Major and Minor Depression with a Seasonal Pattern: The National Comorbidity
Survey,” British Journal of Psychiatry 172 (1998): 164–167; C. I. Eastman, M. A. Young,
and L. F. Fogg, “A Comparison of Two Different Placebo-Controlled SAD Light Treat-
ment Studies,” Light and Biological Rhythms in Man, ed. L. Wetterberg (New York:
Pergamon, 1993), 371–383; and Michael Terman, Jiuan Su Terman, and Donald C.
Ross, “A Controlled Trial of Timed Bright Light and Negative Air Ionization for Treat-
ment of Winter Depression,” Archives of General Psychiatry 55 (1998): 875–882. See also
Seasonal Affective Disorder and Beyond: Light Treatment for SAD and Non-SAD Condi-
tions, ed. Raymond W. Lam (Washington, D.C.: American Psychiatric Press, 1998).
27. Dan A. Oren, Marek Koziorowski, and Paul H. Desan, “SAD and the Not-So-Single
Photoreceptors,” American Journal of Psychiatry 170 (2013): 1403. See also Melissa Lee
Phillips, “Of Owls, Larks and Alarm Clocks,” Nature 458 (2009): 142–145.
28. Kathleen M. Beauchemin and Peter Hays, “Sunny Hospital Rooms Expedite Recovery
from Severe and Refractory Depressions,” Journal of Affective Disorders 40 (1996):
49–51.
29. Jeff Hecht and Dick Teresi, Laser: Light of a Million Uses (1982; repr., Mineola, N.Y.:
Dover, 1998), 6. My account of lasers is indebted to Hecht and Teresi.
30. Gero Miesenböck, “The Optogenetic Catechism,” Science 326 (2009): 395. For the use
of optogenet ics in research on pain, see Shrivats Mohan Iyer, Kate L. Montgomery,
Chris Towne, Soo Yeun Lee, Charu Ramakrishnan, et al., “Virally Mediated Optoge
netic Excitation and Inhibition of Pain in Freely Moving Nontransgenic Mice,”
Nature Biotechnology 32 (2014): 274–278. On optogenetics and memory, see Ewen
Callaway, “Flashes of Light Show How Memories Are Made,” Nature.com, June 2,
2014, www.nature.com/news/flashes-of-l ight-show-how-memories-are-made-1.15330.
31. Eliane A. Lucassen, Claudia P. Coomans, Maaike van Putten, Suzanne R. de Kreij,
Jasper H. L. T. van Genugten, et al., “Environmental 24-hr Cycles Are Essential for
Health,” Current Biology 26 (2016): 1843–1853.
32. Marion Kuhn, Elias Wolf, Jonathan G. Maier, Florian Mainberger, Bernd Feige, et al.,
“Sleep Recalibrates Homeostatic and Associative Synaptic Plasticity in the H uman
Cortex,” Nature Communications, August 23, 2016, doi: 10.1038/ncomms12455.
33. I closely follow John J. DiGiovanna, “Xeroderma Pigmentosum: A Model of Acceler-
ated Photodamage,” Photodamage, ed. Barbara A. Gilchrest (Cambridge, Mass.: Black-
well Science, 1995), 157–167.
34. National Institutes of Health, “Xeroderma pigmentosum,” June 7, 2016, https://ghr.nlm
.n ih.gov/condition/xeroderma-pigmentosum; and “What R eally Has a 1 in a Million
Chance?,” www.stat.berkeley.edu/~aldous/R eal-World/m illion.html.
35. Quoted in Eraldo Peres, “Rare Disease Afflicts Brazilian Village,” May 6, 2014, http://
medicalxpress.com/news/2014-05-rare-disease-a fflicts-brazilian-v illage.html.
36. Anne B. Britt, “Plant Biology: An Unbearable Beating by Light?,” Nature 406 (2000):
30–31; and Paul R. Bergstresser, “Immediate and Delayed Effects of UVR on Immune
Responses in Skin,” in Photodamage, 81–99.
N O T E S T O PA G E S 2 3 4 – 2 4 1 327
37. Susan Solomon, Diane J. Ivy, Doug Kinnison, Michael J. Mills, Ryan R. Neely III, and
Anja Schmidt, “Emergence of Healing in the Antarctic Ozone Layer,” Science, June 30,
2016, doi: 10.1126/science.aae0061.
38. Shannon C. Harrison and Wilma F. Bergfeld, “Ultraviolet Light and Skin Cancer in Ath-
letes,” Sports Health 1 (2009): 335–340. See also Dallas R. English, Bruce K. Armstrong,
Anne Kricker, and Claire Fleming, “Sunlight and Cancer,” Cancer Causes and Control 8
(1997): 271–283; Avril D. Woodhead, Richard B. Setlow, and Michiko Tanaka, “Environ-
mental F actors in Nonmelanoma and Melanoma Skin Cancer,” Journal of Epidemiology
9 (1999): S102–S114; and Frederick Urbach, “Ultraviolet Radiation and Skin Cancer,”
Topics in Photomedicine, ed. Kendric C. Smith (New York: Plenum, 1984), 39–142.
39. See Allen Guttmann, The Erotic in Sports (New York: Columbia University Press,
1996); Thomas F. Scanlon, Eros and Greek Athletics (New York: Oxford University
Press, 2002); and Alain Fleischer, Éros / Hercule: Pour une érotique du sport (Paris: La
Musardine / l’Attrape-corps, 2005).
40. World Wildlife Fund, Living Blue Planet Report: Species, Habitats, and Human Well-
Being (Gland, Switzerland: WWF International, 2015), 2.
41. Steven C. Sherwood, Sandrine Bony, and Jean-Louis Dufresne, “Spread in Model Cli-
mate Sensitivity Traced to Atmospheric Convective Mixing,” Nature 505 (2014):
376–343; Benjamin H. Strauss, Scott Kulp, and Anders Levermann, “Carbon Choices
Determine US Cities Committed to F utures Below Sea Level,” Proceedings of the Na-
tional Academy of Sciences 112 (2015): 13508–13513.
42. James Lovelock, The Ages of Gaia: A Biography of Our Living Earth, rev. ed. (New
York: W. W. Norton, 1995). The Gaia Hypothesis, in Lovelock’s Gaia: A New Look at
Life on Earth (New York: Oxford University Press, 1982), postulated that biota “regu-
late” the surface of the earth. The Ages of Gaia adds a description of the earth as a “self-
regulating super-organism”: “I now see the system of the material Earth and the living
organisms on it, evolving so that self-regulation is an emergent property” (pp. 19–20).
43. Lovelock, Ages of Gaia, 30.
44. U.S. Environmental Protection Agency, “Climate Impacts on Human Health,” www3
.epa.gov/climatechange/impacts/ health.html. See also the National Center for Environ-
mental Assessment, Review of the Impacts of Climate Variability and Change on
Aeroallergens and Their Associated Effects, EPA / 600 / R-06/164F (Washington, D.C.:
Office of Research and Development, EPA, August 2008).
45. Ralph Waldo Emerson, “Nature,” in Essays and Lectures, ed. Joel Porte (New York:
Library of America, 1983), 28 (chapter 5). On an ethics of biocentrism, see Paul W.
Taylor, Respect for Nature: A Theory of Environmental Ethics (Princeton, N.J.:
Princeton University Press, 1986).
46. International Energy Agency, “Solar Energy Perspectives: Executive Summary,” 2011,
www.iea.org/Textbase/npsum/solar2011SUM.pdf.
47. Maria Neira, “Climate Change: An Opportunity for Public Health,” Specimen News,
September 14, 2014, https://web.archive.org/web/20151007195114/http://specimennews
.com/2015/10/07/climate-change-a n-opportunity-for-public-health/. Dr. Neira is di-
rector of the Department of Public Health, Environmental and Social Determinants
of Health—at the World Health Organization.
328 N O T E S T O PA G E S 2 4 2 – 2 4 8
48. Explaining Ocean Warming: C auses, Scale, Effects and Consequences, ed. J. M. Baxter
and Daniel D’A. Laffoley (Gland, Switzerland: IUCN, 2016); “Soaring Ocean Tempera-
ture is ‘Greatest Hidden Challenge of our Generation,’ ” The Guardian, September 5,
2016, www.t heguardian.com/environment/2016/sep/05/soaring-ocean-temperature
-is-greatest-hidden-challenge-of-our-generation; and Paul Watson, “If the Oceans Die,
We All Die!,” September 29, 2015, www.seashepherd.org/commentary-and-editorials
/2015/09/29/if-the-ocean-dies-we-all-die-741.
49. Quoted in “James Turrell: Interview by Esa Laaksonen,” Architectural Design 68, nos.
7–8 (1997): 77. See also the interview with Turrell by Martin Gayford, “Seeing the
Light,” Modern Painters 13, no. 4 (2000): 26–30.
50. Ezra Pound, ABC of Reading (New York: New Directions, 1960), 73.
51. See Amanda Petrusich, “Fear of the Light: Why We Need Darkness,” The Guardian,
August 23, 2016, www.t heguardian.com/environment/2016/aug /23/why-we-need
-darkness-l ight-pollution-stars.
52. Quoted in “Turrell: Interview by Esa Laaksonen,” 78.
53. James Turrell, quoted in Alison de Lima Greene, “As It Is, Infinite: The Work of James
Turrell,” James Turrell: A Retrospective, ed. Michael Govan and Christine Y. Kim (Los
Angeles: Los Angeles County Museum of Art, 2013), 127.
54. Turrell, quoted in Michael Govan, “Inner Light: The Radical Reality of James Tur-
rell,” Turrell: A Retrospective, 13.
55. Mark C. Taylor, Refiguring the Spiritual: Beuys, Barney, Turrell, Goldsworthy (New
York: Columbia University Press, 2012), 117; and Stuart A. Kauffman, Reinventing the
Sacred: A New View of Science, Reason, and Religion (New York: Basic Books, 2008).
56. Oxford Textbook of Spirituality in Healthcare, ed. Mark Cobb, Christina M. Puchlaski,
and Bruce Rumbold (Oxford: Oxford University Press, 2012).
57. Thomas Nashe, “A Litany in Time of Plague,” www.poets.org/poetsorg/poem/litany
-time-plague. The lyric first appeared in Nashe’s play Summer’s Last Will and Testament,
performed in the autumn of 1592. “The Choice of Valentines” circulated in manuscript.
58. Gowri Anandarajah and Ellen Hight, “Spirituality and Medical Practice: Using the
HOPE Questions as a Practical Tool for Spiritual Assessment,” American F amily Phy-
sician 63 (2001): 81–89.
59. Peter Speck, Irene Higginson, and Julia Addington-Hall, “Spiritual Needs in Health
Care: May Be Distinct from Religious Ones and Are Integral to Palliative Care,” BMJ
329 (2004): 123.
60. Rachel Naomi Remen, Kitchen Table Wisdom: Stories That Heal (New York: River-
head Books, 1996), 164.
61. Cynthia A. Moe-Lobeda, Resisting Structural Evil: Love as Ecological-Economic Vo-
cation (Minneapolis: Fortress, 2013), 165–299. On social power as it affects health, see
Paul Farmer, Pathologies of Power: Health, Human Rights, and the New War on the Poor
(Berkeley: University of California Press, 2003).
62. Matilda Coxe Stevenson, The Zuñi Indians: Their Mythology, Esoteric Fraternities,
and Ceremonies, 23rd Annual Report of the Bureau of American Ethnology (Wash-
ington, D.C.: U.S. Government Printing Office, 1904), 293.
63. Ruth L. Bunzel, Zuñi Ceremonialism (1932; repr., Albuquerque: University of New
Mexico Press, 1992), 635. See also M. W. Stirling, “Concepts of the Sun among Amer-
N O T E S T O PA G E S 2 4 8 – 2 5 6 329
ican Indians,” Smithsonian Report for 1945 (Washington, D.C.: Smithsonian Institu-
tion, 1945), 387–400.
64. Peter Schulte, Laia Alegret, Ignacio Arenillas, José A. Arz, Penny J. Barton, et al., “The
Chicxulub Asteroid Impact and Mass Extinction at the Cretaceous-Paleogene
Boundary,” Science 327 (2010): 214–218. (Note that this article has forty international
coauthors.) See also N. R. Longrich, J. Scriberas, and M. A. W ills, “Severe Extinction
and Rapid Recovery of Mammals across the Cretaceous-Palaeogene Boundary, and
the Effects of Rarity on Patterns of Extinction and Recovery,” Journal of Evolutionary
Biology 29, no. 8 (2016): 1495–1512.
65. Jean-Dominique Bauby, The Diving Bell and the Butterfly, trans. Jeremy Leggatt (New
York: Knopf, 1997), 28–29.
CHAPTER NINE • THE SPARK OF LIFE: APPEARANCES / DISAPPEARANCES
Epigraph: Walt Whitman, Leaves of Grass (Brooklyn, N.Y., 1855), 17. In Whitman’s many
revisions, this long poem is retitled “Song of Myself.” This passage too is l ater revised, very
slightly.
1. See Alice Munro, “The Bear Came over the Mountain,” in Hateship, Friendship,
Courtship, Loveship, Marriage (New York: Alfred A. Knopf, 2001), 276.
2. Hans-Georg Gadamer, The Enigma of Health: The Art of Healing in a Scientific Age,
trans. Jason Gaiger and Nicholas Walker (Stanford, Calif.: Stanford University Press,
1996), 96. Verborgenheit is a key term in the philosophy of Martin Heidegger, with
whom Gadamer studied, and refers to concealment or hiddenness, which Heidegger as-
sociates with the concept of Being.
3. See, for example, Bindu Kalesan, Clare French, Jeffrey A. Fagan, Dennis L. Fowler,
and Sandro Galea, “Firearm-Related Hospitalizations and In-Hospital Mortality in the
United States, 2000–2010,” American Journal of Epidemiology 179 (2014): 303–312;
Carl E. Fisher and Jeffrey A. Lieberman, “Getting the Facts Straight about Gun
Violence and Mental Illness: Putting Compassion before Fear,” Annals of Internal
Medicine 159 (2013): 423–424; and Mike Mitka, “Firearm-R elated Hospitalizations: 20
US Children, Teens Daily,” JAMA 311 (2014): 664. For a comprehensive view, see
the American Psychological Association, Gun Viol ence: Prediction, Prevention, and
Policy (2013), www.apa.org/pubs/info/reports/g un-v iolence-prevention.aspx.
4. Alice W. Flaherty, The Midnight Disease: The Drive to Write, Writer’s Block, and the
Creative Brain (New York: Houghton Mifflin, 2004), 2.
5. Quoted by Teresa Wiltz, “The Operating Room Is Her Studio,” Chicago Tribune, De-
cember 4, 1998, http://articles.chicagotribune.com/1998-1 2-04/features/9812040380
_1_plastic-surgeon-f rench-orlan.
6. See Carl Elliott and Peter D. Kramer, Better Than Well: American Medicine Meets the
American Dream (New York: W. W. Norton, 2003).
7. See David Hilfiker, Not All of Us Are Saints: A Doctor’s Journey with the Poor (New
York: Ballantine, 1996).
8. Wallace Stevens, “The Poems of Our Climate” [1938], in The Palm at the End of the
Mind: Selected Poems and a Play, ed. Holly Stevens (New York: Alfred A. Knopf, 1971).
330 N O T E S T O PA G E S 2 5 6 – 2 7 3
9. See Tobin Siebers, Disability Aesthetics (Ann Arbor: University of Michigan Press,
2010); and, for its indispensable overview, The Disability Studies Reader, 4th ed., ed.
Lennard J. Davis (New York: Routledge, 2013)—w ith a fifth edition on the horizon.
10. Jo Spence, Putting Myself in the Picture: A Political, Personal and Photographic Auto-
biography (London: Camden, 1986), 83. See Terry Dennett, “The Wounded Photog-
rapher: The Genesis of Jo Spence’s Camera Therapy,” Afterimage 29, no. 3 (2001): 26–27;
and Susan E. Bell, “Photo Images: Jo Spence’s Narratives of Living with Illness,”
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medi-
cine 6, no. 1 (2002): 5–30.
11. World Health Organization, Constitution of the World Health Organization, 45th ed.,
supplement (October 2006), www.who.int/governance/eb/who_constitution _en.pdf.
12. Global Burden of Disease Study 2013 Collaborators, “Global, Regional, and National
Incidence, Prevalence, and Years Lived with Disability for 301 Acute and Chronic Dis-
eases and Injuries in 188 Countries, 1990–2013: A Systematic Analysis for the Global
Burden of Disease Study 2013,” The Lancet 386: 743–800. See also Against Health: How
Health Became the New Morality, ed. Jonathan M. Metzl and Anna Kirkland (New York:
New York University Press, 2010).
13. Metzl and Kirkland, eds., Against Health.
14. René Girard, Violence and the Sacred, trans. Patrick Gregory (1972; repr., Baltimore:
Johns Hopkins University Press, 1977), 262.
15. Eric Trump, “My Illness, the Third Partner in Our Relationship,” New York Times,
April 24, 2014, www.nytimes.com/2014/04/27/fashion/Modern-Love-My-I llness-t he
-T hird-Partner-in-Our-R elationship.html.
16. Girard, Violence and the Sacred, 37.
17. Gadamer, Enigma of Health, 164.
18. Gadamer, Enigma of Health, 164.
19. Perri Klass, Love and Modern Medicine (Boston: Houghton Mifflin, 2001). Subsequent
citations w ill be indicated in the text as LMM.
20. Centers for Disease Control and Prevention, “About SUID and SIDS,” June 8, 2016,
www.cdc.gov/sids/a boutsuidandsids.htm.
21. Terry Tempest Williams, Finding Beauty in a Broken World (New York: Pantheon,
2008), 29.
22. Anne Carson, Nox (New York: New Directions, 2009).
23. Ben Ratliff, “Lamentation,” review of Nox, by Anne Carson, New York Times, June 11,
2010, www.nytimes.com/2010/06/13/ books/review/R atliff-t.html.
24. Rachel Deahl, “How E-book Sales Compare to Print . . . So Far,” Publishers Weekly,
November 1, 2010, www.publishersweekly.com/pw/ by-topic/d igital/content-a nd
-e-books/article/45015-how-e-book-sales-compare-to-print-so-far.html.
25. Anne Carson, Economy of the Unlost (Reading Simonides of Keos with Paul Celan)
(Princeton, N.J.: Princeton University Press, 1999), 82.
26. Carson, Economy of the Unlost, 121.
Schuster, 2008), 5.
28. Paul Virilio, The Aesthetics of Disappearance, trans. Philip Beitchman (Los Angeles:
Semiotext[e], 2009), 19.
N O T E S T O PA G E S 2 74 – 2 8 4 331
29. Anne Carson, Eros the Bittersweet (1986; repr., Normal, Ill.: Dalkey Archive, 1998), 109.
32. Anne Carson, quoted in Sam Anderson, “The Inscrutable Brilliance of Anne Carson,”
New York Times Magazine, March 14, 2013, www.nytimes.com/2013/03/17/magazine/the
-inscrutable-brilliance-of-a nne-carson.html.
33. Michel Foucault, “Les Reportages d’idées,” Corriere della sera, November 12, 1978,
in Didier Eribon, Michel Foucault, trans. Betsy Wing (1989; repr., Cambridge, Mass.:
Harvard University Press, 1991), 282.
34. A Midsummer Night’s Dream, V.i.324–325, in The Riverside Shakespeare (Boston:
CONCLUSION: ALTERED STATES
Epigraph: Stephen Nachmanovitch, Free Play: Improvisation in Life and Art (New York:
Tarcher / Putnam, 1990), 163.
1. See Anne Nadakavukaren, Our Global Environment: A Health Perspective, 7th ed.
(Long Grove, Ill.: Waveland, 2011); Illness and the Environment: A Reader in Contested
Medicine, ed. Steve Kroll-Smith, Phil Brown, and Valerie J. Gunter (New York: New
York University Press, 2000); and Critical Condition: Human Health and the Envi-
ronment, ed. Eric Chivian, Michael McCally, Howard Hu, and Andrew Haines (Cam-
bridge, Mass.: MIT Press, 1993).
2. National Cancer Institute, “Harms of Smoking and Health Benefits of Quitting,”
December 3, 2014, www.cancer.gov/a bout-cancer/causes-prevention/r isk/tobacco
/cessation-fact-sheet.
3. William Blake, Preface to Milton: A Poem in 2 Books [ca. 1804–1810], in The Complete
Poetry and Prose of William Blake, rev. ed., ed. David V. Erdman, commentary by
Harold Bloom (Berkeley: University of California Press, 1982), 95.
4. Steve Jobs, “ ‘You’ve Got to Find What You Love,’ Jobs Says,” Stanford University Com-
mencement Address on June 12, 2005, Stanford News, June 14, 2005, http://news
.stanford.edu/2005/06/1 4/jobs-061505/.
5. Blake, “The Marriage of Heaven and Hell” [1789–1790], in Complete Poetry and Prose,
39 (plate 14).
6. Mike Jay, High Society: The Central Role of Mind-Altering Drugs in History, Science
and Culture (Rochester, Vt.: Park Street, 2010).
7. National Institute on Drug Abuse, “Trends and Statistics,” August 2015, www
.drugabuse.gov/related-topics/trends-statistics.
8. “15 T hings Apple Could Buy with Its $137B Cash Reserve,” ZD Net, February 10, 2013,
www.zdnet.com/pictures/15-t hings-apple-could-buy-w ith-its-137b-cash-reserve/.
9. National Institute on Drug Abuse, “Overdose Death Rates,” December 2015, www
.drugabuse.gov/related-topics/trends-statistics/overdose-death-rates.
10. Aldous Huxley, The Doors of Perception, in The Doors of Perception and Heaven and
Hell (1954; repr., New York: Harper Colophon, 1963), 12. Subsequent citations w ill be
indicated in the text as DP.
332 N O T E S T O PA G E S 2 8 4 – 2 9 0
11. Sarah Bakewell, At the Existentialist Café: Freedom, Being, and Apricot Cocktails (New
York: Other Press, 2016), 99.
12. Richard Branson, “The War on Drugs Has Failed, So Let’s Shut It Down,” Huffington
Post, August 3, 2014, www.huffingtonpost.com/richard-branson/the-war-on-drugs-has
-fail_1_b_5 439312.html.
13. “U.S. Prison Population Declined One Percent in 2014,” Bureau of Justice Statistics,
September 17, 2015, www.bjs.gov/content/pub/press/p14pr.cfm.
14. Georges Bataille, Erotism: Death and Sensuality, trans. Mary Dalwood (1957; repr.,
San Francisco: City Lights Books, 1986), 17 (la structure de l’être fermé).
15. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978), 3.
16. “Michael Jackson Requested Propofol Long before Death, Says Doctor,” CBS News,
August 29, 2013, www.cbsnews.com/news/m ichael-jackson-requested-propofol-long
-before-death-says-doctor/.
17. Gillian Rose, Love’s Work (London: Chatto & Windus, 1995), 72.
18. Joan Didion, The Year of Magical Thinking (New York: Alfred A. Knopf, 2005),
107, 183–184.
19. Virginia Woolf, On Being Ill (1926), introduction by Hermione Lee (Ashfield, Mass.:
Paris Press, 2002), 6.
20. Quoted in Margaret Plews-Ogan, Justine E. Owens, and Natalie May, Choosing
Wisdom: Strategies and Inspiration for Growing Through Life-Changing Difficulties
(Philadelphia: Templeton Press, 2012), 46.
21. Edith Turner, Communitas: The Anthropology of Collective Joy (New York: Palgrave
Macmillan, 2011).
22. Joy E. Corey with Mark Sanford, Divine Eros: A Timeless Perspective on Homosexuality
(La Vergne, Tenn.: Lightning Source, 2014), 113.
23. See Sunil Kripalani, Jada Bussey-Jones, Mara G. Katz, and Inginia Genao, “A Prescrip-
tion for Cultural Competence in Medicine,” Journal of General Internal Medicine 21,
no. 10 (2006): 1116–1120.
24. Michel Foucault, The Government of Self and Others, ed. Frédéric Gros, trans. Graham
Burchell (New York: Palgrave Macmillan, 2010), 43.
25. National Aeronautics and Space Administration, “Dark Energy, Dark Matter,” NASA
Science: Astrophysics, updated June 5, 2015, http://science.nasa.gov/astrophysics/focus
-areas/what-is-dark-energy/.
26. Ralph Waldo Emerson, “Give All to Love,” in Essays and Poems, ed. Joel Porte, Harold
Bloom, and Paul Kane (New York: Library of America, 1996); and Len Gougeon, Em-
erson and Eros: The Making of a Cultural Hero (Albany: State University of New York
Press, 2007), 7.
27. Johann Hari, Chasing the Scream: The First and Last Days of the War on Drugs (2015;
repr. New York: Bloomsbury, 2016). See also Robert Weiss, “The Opposite of Addic-
tion is Connection,” Psychology Today, September 30, 2015, www.psychologytoday.com
/blog/love-and-sex-in-the-digital-age/201509/the-opposite-addiction-is-connection.
28. Hari, Chasing the Scream, 293.
29. Caitlin Elizabeth Hughes and Alex Stevens, “What Can We Learn from the Portuguese
Decriminalization of Illicit Drugs?,” British Journal of Criminology 50 (2010): 999–1022.
N O T E S T O PA G E S 2 9 1 – 2 9 8 333
30. Sontag, Illness as Metaphor, 3.

Schuster, 2008), 31. Subsequent citations w ill be indicated in the text as SSD.
32. Rieff, Swimming in a Sea of Death, 38, 43, 121.
33. Rieff, Swimming in a Sea of Death, 162–163. I have omitted several sentences (which I
believe do not alter the sense of the passage) in order to convey the gist of the deathbed
encounter, and I have italicized the text in order to indicate my editorial intrusion.
34. A Midsummer Night’s Dream, II.i.205, in The Riverside Shakespeare (Boston: Houghton
Mifflin, 1974).
35. William Carlos Williams, Sappho: A Translation by William Carlos Williams (San
Francisco: Grabhorn Press, 1957). Williams’s translation of Sappho’s famous ode 31
was printed separately as a broadside.
Acknowledgments
Writing for me is so tangled up in incessant rewriting and rethinking that it

is at best a continuous stop-a nd-go process (prolonged over many years and
many revisions) that only gradually discovers the shape and substance of
what emerges as a book. H ere, as usual, I call upon fragmentary materials
lodged in previous essays as I come to recognize where earlier tryouts might have
led, but nothing here merely reproduces previous essays or articles. Everything
stands u nder correction—revised, turned, expanded, cut, plundered, redi-
rected, and substantially altered—as it meets with new thinking, new purposes,
and (a gift from the anonymous readers at Harvard University Press) invaluable
new critiques. A full acknowledgment is impossible—it would resemble a
prose curriculum vitae over the last ten years—but I want to extend grateful
thanks to the editors, journals, and presses whose support stands behind the
fragments and chunks of previous work that I have, inescapably, rethought and
substantially reworked h ere. I owe ongoing thanks for their vision to five gifted
scholars who have worked at the crossroads where medicine and the humani-
ties intersect: Arthur Kleinman, Joanne Trautmann Banks, Arthur Frank,
Rita Charon, and Kathryn Montgomery. My part icu lar household pantheon
has a permanent niche as well for Michel Foucault and Mikhail Bakhtin.
No road this long and winding is traveled alone. I want to express deepest
gratitude to Joan Gaustad for her generous spirit, loving heart, invaluable in-
sight, and saving encouragement. My incomparable brothers—Christopher,
Michael, and Jess—again proved how much I need them. Heartfelt thanks for
improving several preliminary versions go to Julie Sando—astute reader, fine
critic, and fast friend. Gerald Bruns, Christopher Morris, Danny Becker,
Peg Miller, and Larry Zaroff all helped in ways that they might not recognize
or agree on, while Lindsay Waters, Al Zuckerman, and Joy Deng contributed
336 A ckn o wledgments
crucial support. No one could wish for a finer editor than Amanda Peery. Her
deft guidance was invaluable. Meanwhile, I take steady inspiration, on all roads,
from my family trio of writers, scholars, and intrepid explorers: Ellen Morris,
Severin Fowles, and Julia Fowles Morris. Ruth Morris, my wife, despite the ill-
ness that separates us, inhabits whatever I feel, think, do, and write. I dedicate
this book to Ruth, but, in so many ways, it is really her book.
Index
ABC of Reading (Pound), 243 American Journal of Psychiatry, 230

Ablation, 270 American Medical Association (AMA)
Action, eros as, 147–152 logo, 76–77
ACT UP, 69 American Pain Society, 168
Acute pain, 167 American Psychiatric Association, 254
Adams, John, 212, 214–215 American Society of Anesthesiologists, 180
Addiction: eros and, 290–291; as hijacked Amnesty International, 255
desire, 282; substance abuse, 283–284 Amnon, 223
Advance directives, 131 Anesthesia, invention of (ether), 183–186,
Adverse drug events, 12 187–189
Aeschylus, 101 Annals of Internal Medicine, 109
Affective bioethics of narrative, 176 Annotation, 103–104
Africa, stories of AIDS in, 119–123 Aphrodite, 4
Against Health (Metzl & Kirkland), 258 Apollinaire, 153, 158
Agamben, Giorgio, 33 Appearances, 252–261; alternate bodies,
Ajax (Sophocles), 101 255; eros and, 268–269; imperfect,
Alienated desire, 281 255–257; movement to disappearances,
Allure, coincidence and, 212 268–276; physical, 252–254; as social
Altered states of consciousness, 282–289; reality, 254–258
dreams as, 293; eros and, 298–301; Apuleius, 49
illness and experience of, 287–289; Aquinas, Thomas, 291
of not-k nowing, 295–296, 301 Aristides, P. Aelius, 52
Alternative therapies, 213–214 Aristotle, 101
Alto Rhapsody (Brahms), 112, 113 Arnold, Matthew, 74
Alvord, Lori Arviso, 86–87 Aroused by Books (Broyard), 56
Alzheimer’s disease, 25–26; ablation of “Ars Poetica” (MacLeish), 150
mind and body and, 270; Black Swan Ashbery, John, 96
and, 215; caregiving for, 28, 36–39; Asklepiads, 59
erotic economy and, 39–42 Asklepieion, 51, 64
Amazon (retailer), 271 Asklepios, 23, 247; Broyard and, 53;
Amazons, 69–70 coexistence with Hippocrates, 52–53,
American Academy of Hospice and 58–60; contrast with Hippocrates,
Palliative Medicine, 130 60–64; dream treatments and, 51, 59,
American Association of Retired Persons 60, 62; erasure of, 56–60; as Greek god,
(AARP), 30 51–53; Hygieia and, 64; medical eros
338 INDEX
Asklepios (continued) Biomedicine, 7. See also Medical logos

and, 50, 53; recognizing legitimacy (biomedicine)
of Hippocrates and, 75–78; statuette, BIOS Centre for the Study of Bioscience,
60–62 Biomedicine, Biotechnology and
Asclepius adolescens, 60–62 Society, 85
At Day’s Close: Night in Times Past Biotechnologies, medical eros and,
(Ekirch), 89 263–265
The Atlantic magazine, 86 Biro, David, 166
At-loss state, 46–47 Black Swans, 195–200; Alzheimer’s disease
Atrographia, 251 and, 215; coincidence and, 209–216;
Attachment, 34–35 logic of, 204–205; magical thinking and,
The Awakening of Titania (Fuseli), 23–25 200–204; nebulous factors, 216–219;
Away from Her (film), 249–250 positive, 205; XP as, 233
AXIS Dance Company, 259–261 Blake, William, 54, 282, 284
Blue, in art, 159
Body art, 253
Bare life, 33 The Body in Pain (Scarry), 165
Barnum, P. T., 213 Branson, Richard, 286
Barthelme, Donald, 83 Braque, Georges, 153
Barthes, Roland, 174–175 Breast cancer: Lorde’s illness narrative on,
Basso, Keith, 175–176 68–71; Rieff on m other’s experience
Bataille, Georges, 10, 98; on dark side with, 292–298, 299; Rosenblum and
of desire, 262; on eros and dépense, 40; Butler’s illness narrative on, 114–119;
on eros and inner life, 67; on eros and Sontag’s illness narrative on, 26,
sexuality, 6; on eroticism and assent 292–293, 297; Spence’s self-portrait and,
to life, 110, 137, 161; on purpose of 256–257
eroticism, 7, 148, 287; on stripping British Medical Journal, 247
naked, 147–148 Broyard, Anatole, 53–56, 71, 83, 288
Bauby, Jean-Dominique, 123–127, 215, 248, Butler, Sandra, 115–119, 126
276 Byock, Ira, 131–132
Baudelaire, Charles, 138, 155, 287
Baudrillard, Jean, 41
Bayesian probability, 199 Caduceus, 76–77
Beckett, Samuel, 42, 85 Cage, John, 96–97, 162–163, 165
Bedside: caregiver and, 28–32; eros at, Cairns-Lawrence, Jason and Jenny, 209
27–33 Calhoun, Lawrence G., 109
Behavior, knowledge and changes in, Campo, Rafael, 254, 263; on desire, 65–68,
280 76, 98; on desire to heal, 89; emotions in
Being, Modigliani’s nudes and, 149–150 medicine and, 186; eros as ally
Being at a loss, 46 in medicine and, 71; on medicine as
“Being with the Dying” (program), 90 calling, 246
Bell, Rodney, 260 Camus, Albert, 73
Bell-shaped curve, 202–204 Cancer in Two Voices (Rosenblum &
Bender, Gretchen, 127 Butler), 116–119
Best-practice guidelines, medical, The Cancer Journals (Lorde), 68–71
218–219 Canova, Antonio, 36, 37
Big Data, probabilities and, 199 Carco, Francis (Carcopini-Tusoli,
Binary opposites, contraries vs., 13–14 François), 143, 148, 152, 153
Biology of light, 227–232 Care: for others, 291; of the self, 289, 291
INDEX 339
Caregivers: doctor / patient dyad and, 27, Coincidence, 209–216

28–32; erotic economy and, 39–42; Coles, Robert, 176
failure and, 36–39; lost caregiver’s Colors, 224
chaos-narrative, 294–296; loved o ne’s Coming-to-k now, 275
dilemma, 293–294; medical eros and Commonwealth Fund, 12
role of, 14–15; as representative figure, Complementary therapies, 213–214
26–27, 28–29; self-transformation and, Concordia discors, 14
35; supra-dyadic effects and, 29–32; Confabulation, 173–174
survivor’s guilt and, 293–294; waiting Consciousness: James on forms of, 202;
and, 42–48 pain as event of, 168, 170; power to
Caritas, 291 modify and ameliorate pain, 172. See also
Carlyle, Thomas, 40 Altered states of consciousness
Carneg ie Foundation, 8 Contraries, binary opposites vs., 13–14
Carson, Anne, 6–7; on eros, 10, 11, 49, Control, illness and loss of, 23–25
50, 146–147; on Greek lyric poets, 54; Corey, Joy E., 289
on less-ness, 37; Nox, 270–276 Cosmetic surgery, appearances and,
Carson, Michael, 271, 272, 273, 275–276 252–253
Catastrophizing, 171 Costs: of caring for dementia patients,
Catullus, 271, 273, 274 47–48; end of life, 131
Cedars-Sinai Hospital complex, 134 “Cow Skull with Calico Roses” (O’Keeffe),
Cendrars, Blaise, 153 226
Centers for Disease Control and Preven- Creative force, Eros and, 2
tion, 12, 181 Croce, Arlene, 129
Chambers, Tod, 93, 179–180 Cultural competence, 289
Charon, Rita, 76, 109, 111, 174, 180 Cupid, 35–36
Chavez, Mrs. Ozzie, 178, 179–180, 181, 183 Cures: healing vs., 70, 132; unexplained,
Chekhov, Anton, 94 218
Chevreul, Michel Eugène, 159 Currie, Robert, 275
Chicxulub asteroid, 248
“The Choise of Valentines; or the Merie
Ballad of Nash His Dildo” (Nashe), 246 Dailiness, Black Swan and obliteration of,
Christakis, Nicholas, 28–29 201–202
Chronic pain, 167; Heshusius on, 170–171; Daisyworld, 236–237
Loeser on, 168 Damasio, Antonio R., 186
Cigarette smoking, 280 Dance: Bill T. Jones and, 127–131, 133–134,
Circadian rhythm, 229–230 259; eros and, 127–128; physically
Clark, Kenneth, 141–142, 143 integrated, 259–261
Classification of Chronic Pain, 168 Dante, Alighieri, 138
Climate change: Daisyworld model and, Darkness, medical eros and primal,
236–237; light and, 235–242; related creative, 88–91
illnesses and, 237–238 Darkness Visible: A Memoir of Madness
Clinical gaze, 58 (Styron), 111–114
Clinical practice: not-k nowing and, Death and d ying: Bill T. Jones’s narrative
102–103; uncertainty and, 82, 97–98, of, 127–131; of child, 265–268; desire
102–103 and, 262; as dis-appearance, 274; eros
Cocteau, Jean: on Modigliani, 135–136, 138, and, 128–129, 133–134; fear of pain and,
140, 157, 160; Modigliani’s portrait of, 130, 132, 133; Modigliani’s nudes and,
144; on opium, 155; World War I and, 150–152; new narratives of, 131–134; pain
153 relief and, 167, 182
340 INDEX
Death and the Maiden (Schubert), 133 The Diving Bell and the Butterfly (Bauby),
Death wish, eros and, 9 123–127
Deities: nature, 220–221; sun gods, 223. Doctor: in illness narratives, 108–109;
See also Asklepios medical narratives and, 109
Deleuze, Gilles, 253 Doctorow, E. L., 93
DeLillo, Don, 83 Doctor / patient dyad: caregiver and, 27,
De Maria, Walter, 243 28–32; health-care crisis and, 86–87;
Dementia, costs of, 47–48. See also schism between in understanding
Alzheimer’s disease illness, 75–76
Les Demoiselles d’Avignon (Picasso), 149 Doctors Without Borders, 255
Dennett, Terry, 256 The Doors of Perception (Huxley), 284
Dépense, eros and, 40, 41, 42 Drama, pleasure and, 101–102
Depression: caregivers and, 30; Styron on, Dream-based treatment, Asklepian, 51, 59,
110–114 60, 62
Descartes, René, 120, 172, 221 Dreams: as altered state, 293; closeness to
Desert Quartet: An Erotic Landscape real, 156; health and, 99; Modigliani
(Williams), 221–222 and, 155; not-k nowing and, 102
Desire: alienated, 281; Bauby on, 125; Drugs: Huxley experiment with mescaline,
Broyard on, 53–55; climate change and 284–286; Huxley’s argument for better,
culture-w ide redirection of, 235, 238, 287; overdoses, 283; war on, 286–287.
242; death and, 262; efforts to eradicate, See also Addiction
289; eros and, 1–3, 5–7; feminist poetics Ducasse, Isidore (Lautrémont), 138
of, 68–75; hijacked, 281–282; illness Duffin, Jacalyn, 218
and, 10, 15–16, 53–56; loss of, 251–252; Dunne, John Gregory, 200, 202
medical eros and, 8–9; medicalized The D ying Animal (Roth), 151
rejection of, 65–68; misplaced, 281;
reason and, 263–264; self-management
of pain and, 165; spirituality in Eddy, David M., 97
healthcare and, 246–247. See also Ehrenburg, Ilya, 139, 151, 157, 160–161
Eros Einstein, Albert, 223
Desmond Tutu HIV Foundation, 120 Ekirch, A. Roger, 89
Dick, J. Lawson, 227–228 Eksteins, Modris, 154
Dickinson, Emily, 112, 177 Eliot, T. S., 74, 227
Didion, Joan, 173, 200–202, 282, 288, 295, Emergency Plan for AIDS Relief, 122
296 Emerging Infectious Diseases ( journal),
Diedrich, Lisa, 46 226
Diphtheria, 11–12 Emerson, Ralph Waldo, 239–240,
Disability, people with: disability 289–290
aesthetics, 256; physically i ntegrated Emotion: ethics and, 186; pain and,
dance and, 259–261; social appearance 170–173; reason vs., 87
and, 255 Empathetic behaviors, 32–33
Dis-appearance, 270–276, 277 Empathy: caregivers and, 38; medicine
Disappearances, 268–276; incomplete, and, 32
250, 251–252 The Empathy Exams ( Jamison), 202
Discrimination, appearances as social Enabling vocabularies, 280–281
reality and, 254–255 “The Enthusiast or The Lover of Nature”
Disinterest in human beings, drug use and, (Warton), 221
285–286 Environmental Protection Agency, 237
Divine Eros (Corey), 289 Epileptic consciousness, 274
INDEX 341
Eros: as action, 147–152; addiction and, Foucault, Michel: on care of the self, 289,
290–291; allegiance to, 289–290; as 291; not-k nowing and, 94–95; on
altered state of being, 4–5, 298–301; thinking, 276
Asklepios and, 64; Bauby and, 125–126; Foujita, Tsuguharu, 146, 153, 156
at the bedside, 27–33; bittersweetness Frank, Arthur W., 25, 108, 109, 175, 294
of, 298–299; Broyard and, 53–56; as Free play, 100–101
classical god, 1–3; dance and, 127–128; Freud, Sigmund, 9
danger of, 79–80; death and dying and, The Fruitful Darkness (Halifax), 90
128–129, 133–134; duality of, 49–50; Fülöp-Miller, René, 183
ethics and, 177–183; healing role for, 68, Function, defining health in relation to,
71; illness and, 1, 7; inner life and, 6–7; 258–259
irreducibility of, 3–4; loss and, 268–276; Fuseli, Henry, 23–25
Modigliani’s nudes and, 136–137, 139, Futurist Manifesto, 145
145–146, 148–152, 161; molecular vision Futurists, nude and, 145
and, 85–86; not-k nowing and, 274–275;
pain and, 167, 177–183; pleasure and, 74;
as poison and antidote, 36; politics of, Gadamer, Hans-Georg, 250, 259, 261,
152–156; as primal force, 3–4; probabili- 263–264
ties and, 195; sensuous appearances and, Gaia Theory, 236
268–269; sexual activity and, 5–6; Galen, 64
violence and, 261–265; Woolf, illness Gates, Henry Louis, Jr., 56
and, 72, 73–75. See also Desire; Medical Gauss, Johann Carl Friedrich, 202
eros Gaussian function, 202–204
Eros the Bittersweet (Carson), 270 Gawande, Atul, 82, 109, 218–219, 263
Erotic economy, 38–39; of illness, 39–42 Gay rights activism, 254
Erotic life, stages of, 34–35 Gender, pain and, 182–183
Erotics: of place, 222; of reading, 274–276 Giles, Sonsherée, 260
Eryximachus, 64 Giorgione (Giorgio da Castelfranco), 145
Ethics: face and, 186–189; narrative, Girard, René, 262
176–183; observing pain of other and, Glaser, Jennifer, 77, 99
183–189; virtue, 291 Glisson, Francis, 227
Ethnicity, undertreatment of pain and, 182 Global Commission on Drug Policy, 286
Euripides, 49 Gnostic Gospel of Thomas, 224
God, light and, 223
The Golden Ass (Apuleius), 49
Face, as ethical concept, 186–189 Goldman, E. S., 47
Fadiman, Anne, 245–246 Goode, Joe, 260
Failure, caregiving and, 36–39 Gould, Stephen Jay, 208
Fall of Man, nakedness and, 142 La Grande Odalisque (Ingres), 160
Faquet, Guy B., 194 Gratitude (Sacks), 133
Fat tails, of bell-shaped curve, 203 The G
reat Moment (film), 183, 184–187,
Federal Drug Administration, 15 188–189
The Female Nude (Nead), 142 Groopman, Jerome, 82
Fictive voices, medical eros and, 93 Guattari, Felix, 253
Le Figaro (newspaper), 145 Guggenheim Museum, 141
Fisher, Helen, 34–35
Fishman, Scott, 104
Flaherty, Alice W., 251 Hacking, Ian, 194
Flexner Report, 8 Hair (musical), 154
342 INDEX
Halifax, Joan, 90–91 How Doctors Think (Montgomery &

Haraway, Donna, 14 Groopman), 82
Hare, Augustus John Cuthbert, 74 “How We Live Now” (Sontag), 29
Hari, Johann, 290 Hughes, Robert, 136
Hawkins, Anne Hunsaker, 108 Hugo, Victor, 155
Healing: Asklepios and, 62; cure vs., 70, Hunter, Kathryn, 121
132; eros and, 68, 71; narratives of, Huxley, Aldous, 284–287
131–132 Hygieia, 63–64
Health: coincidence and, 211–212; defining Hypergraphia, 251
with respect to function, 258–259;
dreaming and, 99; Gadamer on, 250;
light and, 227–232, 237–238; meaning of, Iatrogenic causes, 12–13
34; WHO definition of, 258; Woolf ’s Identity, illness and recreation of personal,
definition of, 72 69–71
Hearing, biomedicine’s neglect of, 91 Illness: as alien psychic state, 71–75;
Heart attack, as Black Swan, 209–211, climate change and, 237–238; coinci-
217–218 dence and, 211–212; as condition lived
Heizer, Michael, 243 in uncertainty, 213; desire and, 10, 15–16,
Hermes, 76–77 53–56; eros and, 1, 7; erotic economy of,
Heroin use / overdoses, 181, 283 39–42; as experience of altered state,
Heshusius, Lous, 170–171 287–289; as intoxication, 53–56; light
Hesiod, 2–3 and, 232–235; loss of control and, 23–25;
High Society: The Central Role of Mind- medical eros and lived experience of, 17;
Altering Drugs in History, Science and not-k nowing and, 9, 16, 46, 77–78,
Culture ( Jay), 282–283 80–81, 83–84, 102–103; schism dividing
Hijacked desire, 281–282 patient from doctor in understanding of,
Hilfiker, David, 246, 255 75–76; transformation of self and, 33–36,
Hippocrates, 23, 101, 296; coexistence with 54, 56; Woolf, eros, and, 72, 73–75
Asklepios, 52–53, 58–60; contrast with Illness as Metaphor (Sontag), 26, 292–293,
Asklepios, 60–64; images of, 61–62; 297
medical logos and, 50, 53, 58; rational Illness narratives, 107–110; breast cancer,
medicine and, 57–59; recognizing 26, 114–119, 292–293, 297; depression,
legitimacy of Asklepios and, 75–78 110–114; HIV, 119–123; locked-in
Hippocrates the Askepiad, 59 syndrome, 123–127; palliative care,
Hippocratic Oath, 59, 64 127–134
Hippocratic Writings, 57–58 The Illness Narratives (Kleinman), 109
HIV / AIDS, 29, 206, 241, 286; in Africa, Imperfect appearance, 255–257
119–123; age and infection with, 80; Improbability: Black Swans and, 195–200;
Campo’s story of AIDS patient, 65–66; probable, 216
undertreatment of pain and, 172 Inaction, moral value imbued in, 44–46
Hmong immigrants, medical and spiritual Incubation treatment, 51
needs of, 245–246 Individuality, James on, 124
Hoffman, Michael, 277 Industrialization of light, 225–226
Holiness, w holeness and, 246–247 Inexpressibility topos, 165–168
Homer, 4 Infrared light, 224
Homosexuality, gay rights activism, 254 Ingres, Jean-Auguste-Dominique, 160
Hope, survivor’s, 301 Inner life, eros and, 6–7
Horton, Richard, 75 Inside Chronic Pain (Heshusius), 170–171
Hospice, 130, 131 Institute of Medicine, on pain, 163, 164
INDEX 343
Integrative Medicine, 218 Kiki (Alice Prin), 146, 156

Integrative (“zoom”) model of pain, Kipnis, Jonathan, 16
169–173 Kisling, Moïse, 135, 136, 153
International Association for the Study Klass, Perri, 92–93, 94, 265–268
of Pain, 168 Klein, Kevin, 102
International Energy Agency, 241 Kleinman, Arthur, 38, 109
International Union for the Conservation Knowledge: changes in behavior and, 280;
of Nature, 241–242 narrative, 174–176
Intersubjective model of narrative Kraus, Chris, 54
discourse, 115
Intoxicated by My Illness (Broyard), 53–56
Intransitive waiting, 44, 45–47 Lacan, Jacques, 9–10
Irwin, Robert, 243 Laennec, René, 67
Isadora Duncan Dance Awards, 261 Lafayette Tribune, 221
The Lancet, 75, 258
Language: enabling vocabularies, 280–281;
Jackson, Cindy, 252 of medicine, 92–93; pain and, 165–168
Jackson, Michael, 287 The Language of Pain (Biro), 166
Jacob, Max, 144 Lasers, 231
James, William, 124, 202 Last words, 297–298
Jamison, Leslie, 202 Latour, Bruno, 14
Jardim, Djalma Antonio, 233 Laughter, pleasure and, 99–100
Jay, Mike, 282 Lautrémont (Isidore Ducasse), 138
Jefferson, Thomas, 212, 214–215 Lauzzana, Gail, 16, 81
Jesus: Asklepios as pagan competitor of, Lawrence, D. H., 76
57; as model of intransitive waiting, 45 Leary, Timothy, 284
Jobs, Steve, 282 L’érotisme (Bataille), 6
Johns Hopkins Medical School, 7–8 Levinas, Emmanuel, 187–188, 299
Johnson, Lyndon, 286 Levine, Carol, 37
Johnson, Mark, 176 Lewis-Williams, David, 201
Jolie, Angelina, 194–195, 199 Light, 223–226; artificial, 238–240; in
Jones, Bill T., 127–131, 133–134, 259 biblical and Christian traditions, 89;
Jouissance, 175 biology of, 227–232; culture-w ide shift
Journal of Environmental Psychology, 90 in relation to, 243; global climate change
Joy, 100 and, 235–242; health and, 227–232,
Jung, Carl, 9 237–238; illness and, 232–235; industri-
Jupiter, 36 alization of, 225–226; infrared, 224;
Jurecic, Ann, 26 luminosity, 242–248; medical eros and
Justinian, 52 damage from, 234–235; religious truth
and, 224–225; sacredness of, 223;
secular history of, 223–226; solar energy
Kalanithi, Lucy, 84 technologies, 240–241; spirituality and,
Kalanithi, Paul, 84–85 242–248; ultraviolet, 224, 232, 233, 234;
Kandinsky, Vassily, 159 warming of oceans and, 241–242; as
Kauffman, Stuart A., 245 weapon, 226
Kearney, Richard, 97, 115 Light pollution, 243–244
Keats, John, 83, 133, 161 Lipchitz, Jacques, 135, 145
Kentridge, William, 90–91 Listening, medical eros and commitment
Kenyon, Jane, 25 to, 93, 95–96
344 INDEX
“Litany in Time of Plague” (Nashe), 246 213; illness as lived experience and, 17;
Locked-in syndrome, illness narrative on, light damage and, 234–235; narrative
123–127 ethics and, 176–177; narrative pleasure
Loeser, John D., 168 and, 175; not-k nowing and, 9–10,
Longrigg, James, 57 96–104, 215–216; observing pain of other
Lorde, Audre, 68–71, 94, 289 and, 183–189; patient-side transforma-
Loss, eros and, 268–276 tions and, 33–36; patients’ voice and, 93;
Lost caregiver’s chaos-narrative, 294–296 place within modern medicine, 22–27;
Love: dis-appearance and, 277; modern pleasure and, 99–100; protection from
medicine and, 267–268 Black Swan and, 205–206, 208–209;
Love and Modern Medicine (Klass), 265 redirection of light and, 238, 242;
Love and Work (Price), 34 resurgence of, 65–75; Rosenblum and,
Loved one’s dilemma, 293–294 117–118; at sickbed, 26–27; social
Lovelock, James, 236–237 health-related effects of desire and, 280;
LSD, 284 sovereignty of medical knowledge and,
Ludmerer, Kenneth M., 7 83; violence and, 261–265; waiting and,
Lung cancer, 84–85, 279, 280 42–48; Williams on encounter with,
Lust, 34 10–11
Medical error, 12–13; logic of not-k nowing
and, 206–208
Machado, Gleice Francisca, 233 Medical knowledge: new philosophy of,
Machel, Graça, 122 75–78; not-k nowing and myth of, 81–85
Mackey, Sean, 173 Medical logos (biomedicine), 1; advent of,
Mackrell, Judith, 128 7–8; adverse events and, 12–13; art and
MacLeish, Archibald, 150 limits of, 156–161; bedside and, 27–28;
Maimonides, 193 best-practice guidelines, 218–219;
Mandela, Makgatho, 122 biology of light and, 227–232; conver-
Mandela, Nelson, 122–123 gence with medical eros, 76–78,
Manet, Édouard, 143 252–261, 299–300; distinctions between
Man Ray, 156 medical eros and, 13–15, 279–281;
Mapplethorpe, Robert, 98–99 emphasis on probabilities, 193–195, 202;
The Marriage of Heaven and Hell (Blake), Hippocrates and, 50, 53, 58; Lorde and
282 resistance to, 68–71; love and, 267–268;
Massachusetts General Hospital, 184 medical eros’s critique of, 13; medical
Massachusetts Medical Society, 184 error and, 207–208; medically unex-
Matisse, Henri, 138 plained symptoms (MUS), 218;
Maury, Alfred, 156 molecular gaze and, 15–16, 85–88;
McCrea, Joel, 185 paradox of unknown / unknowable risk
Meaning: of altered state, 285; of health, 34 and, 217; place for eros within, 22–27;
Medical eros, 1, 7; altered states and, 288; power of, in United States, 12; role of
Asklepios and, 50, 53; biotechnologies desire in illness and, 16; spirituality and,
and, 263–265; caregivers and, 14–15, 31; 245–248; uncertainty and, 215; Woolf
convergence with medical logos, 76–78, and resist ance to, 68, 71–75
252–261, 299–300; critique of biomedi- Medical narrative, 109
cine, 13; darkness and, 88–91; desire Medical norms, 202
and, 8–9; distinctions between medical Medical pluralism, Hippocrates and
logos and, 13–15, 279–281; ethical Asklepios and, 58–60
management of pain and, 181–183, 189; Medicine: ancient Greeks and invention of
illness as condition lived in uncertainty, rational, 57–59; beneficial violence and,
INDEX 345
262–263; Gaussian function and, Moral practice, caregiving as, 38–39

202–204; poverty, 255–256; transla- Morris, Ruth, 7; Alzheimer’s disease and,
tional, 23 31–32; decline in condition, 39, 43–44;
Melanocytes, 229 improbability and early stages of
Melanopsin, 230 illness, 214–215; Modigliani’s nudes
Melatonin, 230 and, 136, 141; in near-comatose state,
Mendibil, Claude, 124, 125 299, 301; no go areas on subject of
Mescaline, Huxley’s experiment with, illness, 295; onset of illness, 15, 21–22,
284–286 25, 26; in region of not-k nowing, 210;
A Midsummer Night’s Dream (Shake- residential facilities and, 249; spark of
speare): desire for pleasure and life and, 250, 252, 276; therapeutic
not-k nowing and, 101–102; doubleness value of light and, 230–231; visits
of eros and, 49–50; irrationality of illness to, 250–251; as wheelchair user,
and, 23–25; power of eros to dissolve 260–261
self-k nowledge and, 277–278; sweet- Morton, William, 183–189, 284
bitterness of love and, 298 Mother Nature, 220
Milton, John, 46–47, 89 Moyers, Bill, 129–130, 134
Misplaced desire, 281 Mukherjee, Siddhartha, 109
Modigliani, Amedeo: aliveness in art of, Museum of Modern Art, 151
143, 152; death and funeral of, 135–136, Music, pleasure and, 99–100
155, 158; dreams and, 155; drug use of, MUS (medically unexplained symptoms),
155, 157; Futurists and, 145; medical eros 218
and, 158; Paris and, 137–138; public
displays of self, 137–139, 156–157; Renoir
and, 159; self-portrait, 155–156, 160; Nachmanovitch, Stephen, 100
tuberculosis and, 156–158; World War I Nakedness: of Modigliani’s nudes,
and, 152–154 148–149, 161; nudity vs., 141–142;
Modigliani, Jeanne, 158 as protest, 154
Modigliani’s nudes, 136–137, 139–141; Narcissus, 76
being of, 149–150, 152; compared to Narrative, 173–177; chaos-, 294–296; of
Picasso’s, 145–146; in Cubist style, contract, 132–133; of death and dying,
159–160; eros and, 145–146, 148–152, 131–134; of healing, 131–132; inborn drive
161; erotic health of, 158–159; link with for, 173–174; individual experience of
death, 150–152; Morris’s private visit to pain and, 165; knowledge and, 174;
view, 141–144; nakedness of, 148–149, patient voice and, 93–96; pleasure and,
161; Nude, 141–144; Nude on a Blue 96–104, 174–176; public-health, 121;
Cushion, 159, 160; pubic triangle in, reframing harmful, 171–172; thinking
156; Reclining Nude, 146, 147; Reclining with stories, 175–176, 177, 186. See also
Nude (Le G rand Nu), 151–152; Reclining Illness narratives
Nude (Nu couché), 150; as a series, Narrative competence, 111
144–147; in state of half-dream, 155; Narrative ethics, 176–177; pain and,
wart ime, 153–154 177–183
Moe-Lobeda, Cynthia, 247 Narrative frame, Modigliani’s nudes and
Molecular gaze, 15–16, 85–88 rejection of, 149
Monro, Alice, 249 Narrative medicine, 94, 174
Montaigne, 83 “Narrative Medicine” (Charon), 174
Montgomery, Kathryn, 82 Narrative situation, 180
Moral economy, 39 Nashe, Thomas, 246
Moral imagination, 176 National Alliance for Caregivers, 30
346 INDEX
National Center for Complementary and Objectification, 32–33

Alternative Medicine (National Center Oceans, warming of, 241–242
for Alternative and Integrative Health), Ofri, Danielle, 32, 109
213 O’Keeffe, Georgia, 226
National Center on Health Statistics, 283 Olympia (Manet), 143, 144
National Institute on Drug Abuse, 283 On Being Ill (Woolf ), 71–75, 165–166, 287
National Institutes of Health, 111, 163, 283 Opiate painkillers, 180–181
Nature: changing philosophical and Optogenet ics, 231
cultural ideas about, 220–222; as deity, Oresteia (Aeschylus), 101
220–221; instrumental view of, Orlan, 252–253
239–240 Orr, Gregory, 300
Nature (Emerson), 239–240 Orr, Trisha, 300
Nead, Lynda, 142 Otherness of selfhood, 291
Nebulous factors, not-k nowing and, “Our Family Secrets” (article), 109
216–219 Outlier, Black Swan as, 204
Neeld, John B., Jr., 180 Ovid, 62
Negative capability, 83 Oxford English Dictionary, 28
Newton, Isaac, 224 The Oxford Guide to Plain English, 71
The New Yorker, 129 The Oxford Illustrated Companion to
New York Times, 53, 77, 110, 178, 197, 262, Medicine, 77
271 Oxford Textbook of Spirituality in
Nocebo effect, 172 Healthcare, 245
Nociception, 168 Oxford University Press, 245
Nolen, Stephanie, 119–121, 122 OxyContin, 181
Normal accidents, 216 Ozone layer: healing in, 235; skin cancer
Normal catastrophe, 216 and depletion of, 233–234
Nosocomial infections, 12
Notes, prog ress, 103–104
Not-k nowing: altered state of, 295–296, Pain: acute vs. chronic, 167; conscious-
301; Black Swans and, 205, 210; eros ness’s power to modify and ameliorate,
and, 274–275; erotics of, 96–104; 172; death and, 167; emotions and,
Foucault and, 94–95; illness and, 9, 16, 170–173; as event of consciousness, 168,
46, 77–78, 80–81, 83–84, 102–103; 170; fear of, in d
ying, 130, 132, 133;
medical eros and, 215–216; medical error integrative model of, 169–173; language
and logic of, 206–208; myth of medical and, 165–168; narrative and individual
knowledge and, 81–85; nebulous factors experience of, 165; narrative ethics and,
and, 216–219; pleasures of, 99–102; truth 177–183; physical, 168; as probable
and, 277–278 event, 193; right amount of, 162–163;
Nouwen, Henri, 44–45 second-person observer of, 183–189;
Nox (Carson), 270–276 self-management of, 164–165, 167–168;
The Nude: A Study in Ideal Form (Clark), understanding and treatment of,
141 163–165; undertreatment of, 180–183;
Nude (Modigliani), 141–144 visual analogue scales, 166
Nude on a Blue Cushion (Modigliani), 159, Pain beliefs, 170, 171, 172
160 Paleolithic cave painting, theory of, 201
Nudes, in Western painting, 140–141. Palliative care, illness narratives about,
See also Modigliani’s nudes 127–134
Nudity, nakedness vs., 141–142 Les Paradis artificiels (Baudelaire), 155
Nutton, Vivian, 60 Paradise Lost (Milton), 89
INDEX 347
Paris, World War I and, 152–153 Presence, witnessing vs., 47

Passivity, waiting and, 45–46 Price, Reynolds, 33–35, 38, 69, 71, 250, 262
Patient / doctor dyad: caregiver and, 27, Prin, Alice (Kiki), 146, 156
28–32; health-care crisis and, 86–87; Probabilities: Bayesian, 199; bell-shaped
schism between in understanding curve and, 202–204; Big Data and, 199;
illness, 75–76 eros and, 195; medical emphasis on,
Patients: belief in superiority of medical 193–195; risk and, 194–195. See also
knowledge, 82–83; medical eros and Black Swans
self-transformation of, 33–36; voice of, Probable improbabilities, 216
91–96. See also Illness narratives Program in Narrative Medicine (Columbia
Pausanias, 64 University College of Physicians and
Pellegrino, Edmund, 185–186 Surgeons), 109
Pennebaker, James W., 109 Prog ress notes, 103–104
Performance-enhancing drugs, appearance Prostate cancer, 55–56
and, 253 Prozac Nation (Wurtzel), 195
Permanent errors, 38 Psyche, 35–36
Perrow, Charles, 216 Psyche brought back to life by Amor’s Kiss
Philoctetes (Sophocles), 101 (Canova), 37
Photomedicine, 231 Public-health narratives, 121
Photonics, 231 Purdue Pharma, 181
Phronesis, 82 Pyramus and Thisbe, 277–278
Physically i ntegrated dance, 259–261
Physical pain, 168
Picasso, Pablo: Modigliani and, 136, 137, Ra, 223
156, 160; nudes, 141, 145–146, 149; Race: biology of light and racial stereo
World War I and, 153 types, 229; undertreatment of pain and,
Picture of Health: Heroine (Spence), 182
256–257 De Rachitide (Glisson), 227
Pill (contraceptive), 85–86 Ramachandran, V. S., 211, 212
Placebo effect, 172 Ratliff, Ben, 271
Plato, 3, 9, 59, 64, 174, 268 Reading, erotics of, 274–276
Play, f ree, 100–101 Reason / rationality: desire and, 263–264;
Pleasure: Bauby’s erotic m ental journeys emotion vs., 87; limits of, in face of
and, 125–126, 127; classical, 174; eros illness, 293–297; medical preference for,
and, 74; narrative and, 96–104, 174–176; 22–23; Sontag and, 292–293, 295–297;
pain and, 173 Taleb and distrust of, 197
The Pleasure of the Text (Barthes), 174–175 Reclining Nude (Le G rand Nu) (Modi-
Poem-paintings, 300 gliani), 151–152
Politics of eros, 152–156 Reclining Nude (Modigliani), 136, 146, 147
Polley, Sarah, 249–250 Reclining Nude (Nu couché) (Modigliani),
Porter, Roy, 58 150
Positive Black Swan, 205 Recoveries, unexplained, 218
Postmodern pain, ethical response to, Reframing, of harmful stories, 171–172
177–178 Regarding the Pain of O thers (Sontag), 183
Posttraumatic growth, 109 Reinventing the Sacred (Kauffman), 245
Pound, Ezra, 243 Relieving Pain in America (report), 163
Poverty medicine, 255–256 Religion: light and, 220–221, 224–225;
Prairie voles, 80 spirituality vs., 245
Prayers, 288 Remen, Rachel Naomi, 64, 211, 247
348 INDEX
Remissions from cancer, 218 and, 99; illness narrative on, 118–119;
Renoir, Auguste, 159 Modigliani nudes’ acceptance of own,
Respect, patients and, 32–33 148–149
Respite, for caregivers, 38 Shakespeare, William, 74
Rickets, biology of light and, 227–229, 235 The Signal and the Noise (Silver), 213
Rieff, David, 26, 273, 292–298, 299 Signs, coincidences interpreted as, 214
Risk: preparing for unknown / unknow- Silver, Nate, 213
able, 217; probability and, 194–195 Simpson, Tawnni, 128
Rivera, Diego, 144 Skeptical empiricism, 196–197
Roden Crater Project, 243–245, 271 Skin cancer, 233–234, 235, 238
Romantic love, 34 Sleeping Venus (Giorgione), 145
Rose, Gillian, 288 Smith, Kirsten, 28–29
Rose, Nikolas, 85 Smithson, Robert, 243
Rosenblum, Barbara, 114–119, 126, 131, 132, Social reality, appearances as, 254–258
196 Social reintegration, addiction and,
Roth, Philip, 151 290–291
Socrates, 3, 52, 246, 275
Solar energy technologies, 240–241
Sacks, Oliver, 30, 100, 109, 133 Solar radiation, impact on human health,
Sackville-West, Vita, 74 233–234, 235, 238, 240–241
Sacredness of light, 223 Le sommeil et les rêves (Maury), 156
Sacred Tales (Aristides), 52 Sontag, Susan, 94; “How We Live Now,”
Sade, Marquis de, 5 29; on illness, 15, 26, 71, 287, 291–297;
Salmon, André, 145, 153 Illness as Metaphor, 26, 292–293, 297;
Salon d’Automne, 144 last words, 297–298; opposition to
Sand, George, 160 military metaphors applied to illness,
Sappho, 50, 81, 115, 298 69; Regarding the Pain of O thers, 183.
Sartre, Jean-Paul, 284 See also Rieff, David
Saunders, Cicely, 130 Sophocles, 101
Scandal of pleasure, 98 South Africa, HIV infection in, 122–123
Scarry, Elaine, 165, 166 Soutine, Chaim, 136, 154–155, 157
Schubert, Franz, 133 Spark of life, 250, 252, 276
Scott-Maxwell, Florida, 79–80 Speed, modern societ ies’ emphasis on,
Seasonal affective disorder, 230–231 273–274
Seboulisa, 68 Spence, Jo, 256–257
Secrest, Meryle, 156–157 The Spirit Catches You and You Fall Down
Séduction, Baudrillard’s theory of, 41, 42 (Fadiman), 245–246
Self: altered state and boundaries of, 286; Spirituality: light and, 242–248; religion
care of, 289, 291; illness and transforma- vs., 245
tion of, 33–36, 54, 56 Spontaneous Healing (Weill), 218
Selfhood, otherness of, 291 Squander It All (Orr), 300
Self-management of pain, 164–165, Staël, Madame de, 216
167–168 Stein, Gertrude, 137
Self-transcendence, desire for, 282 Steiner, Wendy, 98
Selzer, Richard, 76, 109, 246 Stevens, Wallace, 256
Seven Day Diary (Cage), 96 Still / Here ( Jones), 127–131, 134, 259
Sex addicts, 286 Story-editing, pain and, 171–172
Sexual activity / sexuality: Alzheimer’s Storytelling, in order to live, 295, 296
disease and, 40; eros and, 5–6; health Strandberg, Victor, 34
INDEX 349
“Strands” (Styron), 113, 114 Translational medicine, 23

Sturges, Preston, The G reat Moment and, Travel narrative, The Diving Bell and the
183, 184–187, 188–189 Butterfly as, 124–127
Styron, Alexandra, 113–114 Treatments, Asklepian dream-based, 51,
Styron, Rose, 112, 113, 114 59, 60, 62
Styron, William, on depression, 94, Triumph over Pain (Fülöp-Miller), 183
110–114, 215 Trump, Eric, 262
Substance abuse, 283–284 Truth: illness as ultimate closeness to,
Sudden infant death syndrome (SIDS), 72–73; not-k nowing and, 277–278
265–267 Tuberculosis: Keats and, 161; Modigliani
Sudden unexpected infant death (SUID), and, 156–158
265 Tucker, Ellen Louisa, 289
Suffering, pain and, 163 Turning point: Rosenblum and, 117;
Suicide, 110–111, 112, 166, 215 Styron and, 112–113
Supra-dyadic effects, 29–32 Turrell, James, 242–245
Survage, Léopold, 139 Tutu, Desmond, 120
Survival Workshops, 127, 128 28: Stories of AIDS in Africa (Nolen),
Survivor’s guilt, 293–294 119–121
Survivor’s hope, 301 Twins, coincidental events and identical,
Swimming in a Sea of Death (Rieff ), 212–213
293–296
Syllogisms, Black Swan and, 198–199
Symborska, Wislawa, 103–104 Ubuntu, AIDS in Africa and, 120–121
Symposium (Plato), 3, 9, 64 Ultraviolet light, 224, 234; XP and, 232,
233
Uncertainty: clinical practice and, 82,
Tait, Raymond C., 182 97–98, 102–103; medical logos and, 215
Taleb, Nassim Nicholas, 196–199, 269; U.S. Academy of Hospice Physicians,
bell-shaped curve and, 203–204; on 130
Black Swan logic, 204–205; market Upaya Zen Center (Santa Fe), 90
strategies of, 207–208; positive Black Updike, John, 2, 290
Swan and, 205 “The Use of Force” (Williams), 10–11, 13,
Tattoos, 252 98
Taylor, Jill Bolte, 173 Us / Them narratives, 181
Taylor, Mark, 245
The Tears of Eros (Bataille), 262
Tedeschi, Richard G., 109 Vanishment, disappearance vs., 270, 273
Teresa of Ávila, Saint, 100 Vanstone, W. H., 44–45
Tertullian, 51 Van Zee, Art, 181
Thanatos, eros and, 9 Vassilieff, Marie, 138
Theater of War, 101 Venus (god), 35–36
Thinking: Foucault on, 276; with stories, Venus d’Urbino (Titian), 143
175–176, 177, 186 Verführen, 264, 329n2
The 36-Hour Day (Mace), 31 Verghese, Abraham, 109
Thomas, Dylan, 131 Vesalius, 64
Thoreau, Henry David, 226 Veterans Health Administration, 15
Titian, 143 Victim art, 129
Tobacco, history of, 279–280 Violence: dual nature of, 262–263; eros
Transitive waiting, 43–44 and, 261–265
350 INDEX
Virilio, Paul, 273–274 Woolf, Virginia, 68, 71–75, 165–166, 175,

Virtue ethics, 291 287, 288
Vocabulary, enabling, 280–281 Work, eros and, 40
Voss, Johann, 212 World Health Organization, 8, 130, 241,
258
World War I, Modigliani and, 152–154
Waiting: intransitive, 44, 45–47; medical World Wildlife Fund, 235–236
eros and, 42–48; transitive, 43–44 The Wounded Storyteller (Frank), 109,
Waiting for Godot (Beckett), 42 294
Warhol, Andy, 87 Writing, loss of desire for, 251–252
War on drugs, 286–297 Wurtzel, Elizabeth, 195
Warren, John Collins, 184–185
Warton, Joseph, 221, 225, 244
“The Waste Land” (Eliot), 227 Xeroderma pigmentosum (XP), 232–234
Watson, Paul, 242
Weill, Andrew, 218
Weill, Berthe, 148 The Year of Magical Thinking (Didion),
What Doctors Feel (Ofri), 32 200–202
When Breath Becomes Air (Kalanithi),
84–85
Wholeness, holiness and, 246–247 Zane, Arnie, 130, 134
A Whole New Life (Price), 34 Zaroff, Larry, 118
Wickkiser, Bronwen L., 56–57 Zborowski, Léopold, 140, 146, 153, 154,
Williams, Terry Tempest, 221–222, 268 156, 159
Williams, William Carlos, 10–11, 13, 41, 98, Zero K (DeLillo), 83
262 Žižek, Slavjo, 80
Wilson, Timothy D., 171 Zoom model of pain, 169–173
Witnessing, presence vs., 47 Zuñi p
eople, sun as source of life,
Wonder, coincidence and, 212 247–248

Eros and Illness

Uploaded by

Copyright:

Available Formats

Eros and Illness

Uploaded by

Document Information

Copyright

Available Formats

Share this document

Share or Embed Document

Sharing Options

Did you find this document useful?

Is this content inappropriate?

Copyright:

Available Formats

Eros and Illness

Uploaded by

Copyright:

Available Formats

Eros and Illness

Louise Bourgeois. Cell: You Better Grow Up. 1993.

Library of Congress Cataloging-­in-­Publication Data

Names: Morris, David B., author.

PA RT T WO ​The Stories 105

PA RT T H R E E ​The Dilemmas 191

fertility, a power­ful figure depicted on a fifth-­century BCE Greek vase as

it in conflict with the widely shared belief (a founding princi­ple of natu­ral

Violence EROS Empathy

Figure 0.1. Log­os in (Doomed) Quest to Make Sense of Eros.

eros, “we might cite meta­phors of piercing, crushing, bridling, roasting,

as language or ideology. Too simply: we desire expensive cars not merely

world of biomedicine. Statistical studies are always open to debate, but it

Contraries, in contrast, do not exist within a closed, logical, artificial,

assisted-­living facilities, and faceless bureaucracies, while of course also

The Ambush: An Erotics of Illness

E verything changed with the blessing of the candles. Something

society belles (their charms tastefully on display) framed by a small

Eros, in short, far from irrelevant to medicine, regularly suffuses the

major change within the understanding of illness that holds impor­tant

Supra-­dyads: Eros at the Bedside

new health-­related pattern that they call “supra-­dyadic effects.” 11 Supra-­

• The United States has an estimated 36 to 38 million caregivers

The illnesses that caregivers contract or stand at much increased risk of

of charitable condescension. Empathy, re­spect, and even self-­re­spect all

Medical Eros and Patient-­side Transformations

mere sexual plea­sure. Recovery, as Price understands it, depends on erotic

that, unluckily, a drop of lamp oil falls on Cupid’s shoulder. He wakes,

I once confided my failures in an e-­mail to religious friends of high moral

error to be excused with a heartfelt mea culpa or with a Hamlet-­like nod

An Erotic Economy of Illness

Economics, which Thomas Carlyle famously described as the dismal

Standing-­By: Medical Eros and Waiting

an old-­fashioned distinction from grammar—­transitive and intransitive

local residential Alzheimer’s facilities. In bed one morning, I timidly

both respond to the devaluations that depict waiting as passivity and

“H e ruins mortals and c­ auses them ­every kind of disaster.” So

Hippocrates rightly deserves his title as the founder of rational medi-

firing up his psyche, which turned out to be inseparably linked to sexual

The Erasure of Asklepios

the Greco-­Roman world.”17 A savior-­deity who, unlike the remote, aristo-

Asklepios and Hippocrates: The Traces of Eros

Figure 2.1. Statuette of Asklepios. 100–200 CE. Marble. National Archaeological

Hygieia, the mythic ­daughter of Asklepios, stands beside a pyramid

The Resurgence of Medical Eros

doctors as seriously as it fails patients. The turning point in Campo’s

Admitting desire, however, differs from acting upon desire; a­ dmitting

racial and sexual dissidence that extends to a po­liti­cal outlook familiar

Healing, of course, differs from cure, and healing is crucial especially

reluctance to engage in personal confession. On Being Ill, for example,

out the body’s forbidden truths. It is the inexpressible presence of the

A New Philosophy of Medical Knowledge?

degrees during the extended, changing course of illness. Partnership as

E ros, in addition to his shape-­shifting powers, no doubt speaks

or explained as a phenomenon of bodies. Eros and illness at times share

Not-­K nowing and the Myth of Medical Knowledge

multiple gestures—­w inks, hugs, handshakes, scrub-downs—­where

consider the most knowledgeable. Doctors, meanwhile, have strong in-

Medical Log­os and the Molecular Gaze

Biomedicine certainly has e­ very right to uphold its chosen standards

Library of Congress Cataloging-in-Publication Data

PA RT T WO The Stories 105

PA RT T H R E E The Dilemmas 191

fertility, a powerful figure depicted on a fifth-century BCE Greek vase as

it in conflict with the widely shared belief (a founding principle of natural

Figure 0.1. Logos in (Doomed) Quest to Make Sense of Eros.

eros, “we might cite metaphors of piercing, crushing, bridling, roasting,

assisted-living facilities, and faceless bureaucracies, while of course also

major change within the understanding of illness that holds important

Supra-dyads: Eros at the Bedside

new health-related pattern that they call “supra-dyadic effects.” 11 Supra-

of charitable condescension. Empathy, respect, and even self-respect all

Medical Eros and Patient-side Transformations

mere sexual pleasure. Recovery, as Price understands it, depends on erotic

I once confided my failures in an e-mail to religious friends of high moral

error to be excused with a heartfelt mea culpa or with a Hamlet-like nod

Standing-By: Medical Eros and Waiting

an old-fashioned distinction from grammar—transitive and intransitive

“H e ruins mortals and c auses them every kind of disaster.” So

the Greco-Roman world.”17 A savior-deity who, unlike the remote, aristo-

Hygieia, the mythic daughter of Asklepios, stands beside a pyramid

Admitting desire, however, differs from acting upon desire; a dmitting

racial and sexual dissidence that extends to a political outlook familiar

E ros, in addition to his shape-shifting powers, no doubt speaks

Not-K nowing and the Myth of Medical Knowledge

multiple gestures—w inks, hugs, handshakes, scrub-downs—where

Medical Logos and the Molecular Gaze

Biomedicine certainly has e very right to uphold its chosen standards

experience of illness that medical logos almost automatically discounts

greater authority to the voices of actual patients, as opposed to the voices

“doctor” and “patient” that, u nder scrutiny, resemble semifictive con-

An Erotics of Not-K nowing: Narrative and Pleasure

Zen ways, and optimism—reconfigured as the biology of hope—makes a

Medical eros operates on the assumption that, no matter how much we

destroys the normal, self-contained character of the participators. Should

of laughter in distraction, but researchers have offered other, less well-

ence of its mostly invisible companion eros. Shouldn’t somebody—doctors,

a slide back toward not-k nowing. Not-k nowing, in effect, is what we do

Varieties of Erotic Experience:

E ros is the energy and the fifty miles an hour—desire as an ex-

Depression: Darkness Visible

Locked-In Syndrome: The Diving Bell and the Butterfly

Locked-in syndrome, while paralyzing almost every motor function

sures. Paralyzed, deformed, and reduced in his own unromantic account

Palliative Care: Still / Here

for-public-view displays. As the Montparnasse evenings passed deeper

equivocally gendered male. Modi recognized a time-honored gender

duced an entire near-pornographic suite in which Raphael paints while

only what we d on’t possess—a nd what perhaps is permanently out of

their stillness they also appear enveloped in a private state of pleasure.

contact with an authentic aliveness, as Francis Carco testified, with life as

poète maudit—Maldoror-Modigliani—but rather it represents the artist at

Tuberculosis: Art and the Limits of Medical Logos

deliberately, he created his own ‘legend,’ ” says a contemporary source.52

isolate, it could also—so the myth held—lend an elevating, ennobling air

and blood-red sputum. Their robust, fleshly well-being has nothing to do

The Infinite Faces of Pain:

computation—depend far less on finding the right medication than on under

that illness has been underdescribed in literature. Her description of