"Arthur Frank's writings on illness and the body transcend the barriers of academic and professional disciplines, making them uniquely relevant to a wide variety of audiences: clinicians, ethicists, sociologists, scholars in the humanities and human sciences, those engaged in medical education, caregivers, and (always) the never-to-be-forgotten community of the ill."

"This is a bold and imaginative book which moves our thinking about narratives of illness in new directions."

The Wounded Storyteller

Body, Illness, and Ethics

THE UNIVERSITY OF CHICAGO PRESS

Contents

CHAPTER 1

One When BodiesNeed Voices

"The destination and map I had used to navigate before wereno longer useful." These words were in a letter describingchronic fatigue syndrome. Judith Zaruches wrote of how, afteran illness that is never really finished, she "needed ... to thinkdifferently and construct new perceptions of my relationship tothe world."

Serious illness is a loss of the "destination and map" that hadpreviously guided the ill person's life: ill people have to learn"to think differently." They learn by hearing themselves telltheir stories, absorbing others' reactions, and experiencingtheir stories being shared. Judith's story not only stated herneed for a new map and destination; her letter itself was anexperimental performance of the different thinking she calledfor. Through the story she was telling me, her new map wasalready taking shape.

Even though we did not know each other, Judith needed towrite to me—she had read my own story of cancer and seen avideo tape of a lecture I gave—for me to witness her story andher personal change. As she told me her story, she discovered"new perceptions of [her] relationship to the world." That myresponse would only come later, in another letter, perhapsmade it easier. Seeing herself write, like hearing herself speak,was the major threshold.

Judith's distinctiveness as a storyteller is her illness. Illnesswas not just the topic of her story; it was the condition of hertelling that story, Her story was not just about illness. The storywas told through a wounded body. The stories that ill peopletell come out of their bodies. The body sets in motion the needfor new stories when its disease disrupts the old stories. Thebody, whether still diseased or recovered, is simultaneouslycause, topic, and instrument of whatever new stories are told.These embodied stories have two sides, one personal and theother social.

The personal issue of telling stories about illness is to givevoice to the body, so that the changed body can become onceagain familiar in these stories. But as the language of the storyseeks to make the body familiar, the body eludes language. Toparaphrase Martin Buber, the body "does not use speech, yetbegets it." The ill body is certainly not mute—it speaks eloquentlyin pains and symptoms—but it is inarticulate. Wemust speak for the body, and such speech is quickly frustrated:speech presents itself as being about the body rather than of it.The body is often alienated, literally "made strange," as it istold in stories that are instigated by a need to make it familiar.

The alternative to this frustration is to reduce the body tobeing the mere topic of the story and thus to deny the story'sprimary condition: the teller has or has had a disease. That theteller's diseased body shapes the illness story should be self-evident.Only a caricature Cartesianism would imagine a head,compartmentalized away from the disease, talking about thesick body beneath it. The head is tied to that body throughpathways that science is only beginning to comprehend, butthe general principle is clear: the mind does not rest above thebody but is diffused throughout it.

But actually hearing traces of the body in the story is noteasy. Observing what stories say about the body is a familiarsort of listening; describing stories as told through the body requiresanother level of attention. This book attempts to evokethis other level of attention: How can we make sense of illnessstories as being told through the diseased body?

The ill body's articulation in stories is a personal task, but thestories told by the ill are also social. The obvious social aspectof stories is that they are told to someone, whether that otherperson is immediately present or not. Even messages in abottle imply a potential reader. The less evident social aspectof stories is that people do not make up their stories by themselves.The shape of the telling is molded by all the rhetoricalexpectations that the storyteller has been internalizing eversince he first heard some relative describe an illness, or she sawher first television commercial for a non-prescription remedy,or he was instructed to "tell the doctor what hurts" and had tofigure out what counted as the story that the doctor wanted tohear. From their families and friends, from the popular culturethat surrounds them, and from the stories of other ill people,storytellers have learned formal structures of narrative, conventionalmetaphors and imagery, and standards of what is andis not appropriate to tell. Whenever a new story is told, theserhetorical expectations are reinforced in some ways, changedin others, and passed on to affect others' stories.

A first topic of this book is the need of ill people to tell theirstories, in order to construct new maps and new perceptions oftheir relationships to the world. A second topic is the embodimentof these stories: huw they are told not just about the bodybut through it. A third topic is the times that stories are told in:how the social context affects which stories get told and howthey are told. The central issue of context is the distinction betweenillness as experienced in modern versus postmoderntimes.

The prefix "post" is not quite right; I do not propose any strictperiodization of the modern and the postmodern. I do believethat over a period of time, perhaps the last twenty years, howpeople think about themselves and their worlds has changedenough to deserve a label, and the most accepted label—increasinglydiffused in journalism and popular culture—ispostmodernism. Because of the number of intellectual agendaethat employ some version of this label, I prefer "post-moderntimes." The times that contemporary illness storiesare told in, which are also the times I am writing in, havechanged fairly recently.

Albert Borgmann's title Crossing the Postmodern Divideprovides a particularly useful metaphor. Journeys cross divides.Once on the other side, the traveler remains the same person,carrying the same baggage. But on the other side of certain divides,the traveler senses a new identity; that same baggage nowseems useful for new purposes. Fundamental assumptions thatgive life its particular meaning have changed. Postmodernity issuch a crossing, occurring when the same ideas and actions areoverlaid with different meanings. Sometimes these differencesof having crossed the divide are clear, but more often they aresubtle: things just feel different. Illness has come to feel differentduring the last twenty years, and today the sum of thosedifferences can be labeled postmodernism. I make no attemptto define postmodernism; the utility of that term lies only inthick descriptions of the feel of the differences.

A useful, if simplified, evocation of the shift from the premodernexperience of illness to modernity is provided by aNorth African woman quoted by Pierre Bourdieu in his anthropologicalresearch. That Bourdieu recorded this quotationfrom a living person is a reminder of the proximity and overlapof the premodern, modern, and postmodern. "In the old days,"the woman said, "folk didn't know what illness was. They wentto bed and they died. It's only nowadays that we've learnedwords like liver, lung, stomach, and I don't know what!"

Of course premodern people had rich descriptors for diseaseand its remedies; ethnomedicine was and is highly specific.But I interpret the speaker's closing exclamation asindicating being overwhelmed: she literally doesn't knowwhat. The specialized medical terms that the woman claimsher people have only recently learned overwhelm her experiencebecause they come from elsewhere. The shift to modernitycrosses a divide into a medical culture that is foreign to thiswoman's experience of illness.

The modern experience of illness begins when popular experienceis overtaken by technical expertise, including complexorganizations of treatment. Folk no longer go to bed anddie, cared for by family members and neighbors who have atalent for healing. Folk now go to paid professionals who reinterprettheir pains as symptoms, using a specialized languagethat is unfamiliar and overwhelming. As patients, these folk accumulateentries on medical charts which in most instancesthey are neither able nor allowed to read; the chart becomesthe official story of the illness. Other stories proliferate. I11people tell family and friends versions of what the doctor said,and these others reply by telling experiences that seem to besimilar: both experiences they have had themselves and onesheard from others. Illness becomes a circulation of stories,professional and lay, but not all stories are equal.

The story of illness that trumps all others in the modern periodis the medical narrative. The story told by the physicianbecomes the one against which others are ultimately judgedtrue or false, useful or not. I will discuss Talcott Parsons's theoryof the "sick role" in later chapters. What is relevant here isParsons's observation, made about 1950, that a core social expectationof being sick is surrendering oneself to the care of aphysician. I understand this obligation of seeking medical careas a narrative surrender and mark it as the central moment inmodernist illness experience. The ill person not only agrees tofollw physical regimens that are prescribed; she also agrees,tacitly but with no less implication, to tell her story in medicalterms. "Hw are you?" now requires that personal feeling becontextualized within a secondhand medical report. The physicianbecomes the spokesperson for the disease, and the illperson's stories come to depend heavily on repetition of whatthe physician has said.

Times have come full circle from Bourdieu's North Africaninformant when we read of a patient whose running joke withhis surgeon involves reporting his symptoms in an overdoneversion of medical obscurity, For example, "If you will diligentlyinvestigate the pilar projections rising sparsely from thevertext of my cranial ossification, you will detect a macular callositywhich may have malignant potential." If modern medicinebegan when physicians asserted their authority asscientists by imposing specialized language on their patients'experiences, the postmodern divide is crossed when patientssuch as this one can mimic this language in a send-up of medicinethat is shared with the physician. But lay familiarity withmedical terms and techniques, even to the point of parody, isonly one potential of the postmodern experience of illness.

The postmodern experience of illness begins when ill peoplerecognize that more is involved in their experiences than themedical story can tell. The loss of a life's map and destinationare not medical symptoms, at least until some psychiatricthreshold is reached. The scope of modernist medicine—definedin practices ranging from medical school curricula tobilling categories—does not include helping patients learn tothink differently about their post-illness worlds and constructnew relationships to those worlds. Yet people like JudithZaruches express a self-conscious need to think differently.

Both the divide that was crossed from the premodern to themodern and that from modern to postmodern involve issues ofvoice. The woman reported by Bourdieu seems to perceivethat medicine has taken away her voice: medicine assails herwith words she does not want to know and leaves her not knowingwhat. But this woman does not perceive a need for whatwould now be called her own voice, a personal voice tellingwhat illness has imposed on her and seeking to define for herselfa new place in the world. What is distinct in postmoderntimes is people feeling a need for a voice they can recognize astheir own.

This sense of need for a personal voice depends on the availabilityof the means-the rhetorical tools and culturallegitimacy-for expressing this voice. Postmodern times arewhen the capacity for telling one's own story is reclaimed.Modernist medicine hardly goes away: the postmodern claimto one's own voice is halting, self-doubting, and often inarticulate,but such claims have enough currency for illness to takeon a different feel.

Voices tell stories. Stories are premodern; Bourdieu's informantsuggests that the coming of modern medicine took awaya capacity for experiencing illness in her folk's traditional stories.In the modern period the medical story has pride of place.Other stories become, as non-medical healers are called, "alternative,"meaning secondary. The postmodern divide iscrossed when people's own stories are no longer told as secondarybut have their own primary importance. Illness elicitsmore than fitting the body into traditional community expectationsor surrendering the body to professional medicine,though both community traditions and professional medicineremain. Postmodern illness is an experience, a reflection onbody, self, and the destination that life's map leads to.

The Remission Society

The possibility, even the necessity of ill people telling theirown stories has been set in place by the same modernist medicinethat cannot contain these stories. At the end of the storythat I wrote about my own experience of having cancer, I usedthe term "remission society" to describe all those people who,like me, were effectively well but could never be consideredcured. These people are all around, though often invisible. Aman standing behind me in an airport security check announcesthat he has a pacemaker; suddenly his invisible "condition"becomes an issue. Once past the metal detector, his"remission" status disappears into the background.

Members of the remission society include those who havehad almost any cancer, those living in cardiac recovery programs,diabetics, those whose allergies and environmentalsensitivities require dietary and other self-monitoring, thosewith prostheses and mechanical body regulators, the chronicallyill, the disabled, those "recovering from abuses and addictions,and for all these people, the families that share theworries and daily triumph of staying well.

Cathy Pearse writes in middle-age about having a bleedingcerebral aneurysm—a stroke—when she was twenty. Duringthe operation, a cranial nerve was damaged. She still suffersfrom double vision, which she reports is "an ever present reminder"of her near-death experience. Her body is now beginningto feel the long-term effects of muscle asymmetry andfavoring her "good side." But her illness history would be invisibleto most people she meets, and she is long since considered"cured" by medicine. Cathy is a member of the remission society.Years after her hospitalization and treatment, she can stilldescribe what happened in exquisite detail; she recalls thehurt caused by a nurse's casual comment as if it had been spokenyesterday She refers to being a "recovered stroke patient"as one aspect of her "ethnicity," a word suggesting an irrevocableidentity.

The physical existence of the remission society is modern:the technical achievements of modernist medicine make theselives possible. But people's self-consciousness of what it meansto live in the wake of illness is postmodern. In modernistthought people are well or sick. Sickness and wellness shift definitivelyas to which is foreground and which is background atany given moment. In the remission society the foregroundand background of sickness and health constantly shade intoeach other. Instead of a static picture on the page where light isseparated from dark, the image is like a computer graphicwhere one shape is constantly in process of becoming theother.

Parsons's modernist "sick role" carries the expectation thatill people get well, cease to be patients, and return to their normalobligations. In the remission society people return, butobligations are never again what used to be normal. Susan Sontag'smetaphor of illness as travel is more subtle than Parsons'ssick role. We are each citizens of two kingdoms, Sontag writes,the kingdom of the well and that of the sick. "Although we allprefer to use only the good passport, sooner or later each of usis obliged, at least for a spell, to identify ourselves as citizens ofthat other place." Sontag's notion of dual citizenship suggestsa separation of these two kingdoms. The remission society isleft to be either a demilitarized zone in between them, or elseit is a secret society within the realm of the healthy.

To adapt Sontag's metaphor, members of the remission societydo not use one passport or the other. Instead they are onpermanent visa status, that visa requiring periodic renewal.The triumph of modernist medicine is to allow increasingnumbers of people who would have been dead to enjoy thisvisa status, living in the world of the healthy even if always subjectto expulsion. The problem for these people is that modernistmedicine lacked a story appropriate to the experience itwas setting in place. People like Judith Zaruches were leftneeding a new map for their lives.
(Continues...)Excerpted from The Wounded Storyteller by Arthur W. Frank. Copyright © 2013 The University of Chicago. Excerpted by permission of THE UNIVERSITY OF CHICAGO PRESS.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.