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One When Bodies Need Voices
"The destination and map I had used to navigate before were no longer useful." These words were in a letter describing chronic fatigue syndrome. Judith Zaruches wrote of how, after an illness that is never really finished, she "needed ... to think differently and construct new perceptions of my relationship to the world."
Serious illness is a loss of the "destination and map" that had previously guided the ill person's life: ill people have to learn "to think differently." They learn by hearing themselves tell their stories, absorbing others' reactions, and experiencing their stories being shared. Judith's story not only stated her need for a new map and destination; her letter itself was an experimental performance of the different thinking she called for. Through the story she was telling me, her new map was already taking shape.
Even though we did not know each other, Judith needed to write to me—she had read my own story of cancer and seen a video tape of a lecture I gave—for me to witness her story and her personal change. As she told me her story, she discovered "new perceptions of [her] relationship to the world." That my response would only come later, in another letter, perhaps made it easier. Seeing herself write, like hearing herself speak, was the major threshold.
Judith's distinctiveness as a storyteller is her illness. Illness was not just the topic of her story; it was the condition of her telling that story, Her story was not just about illness. The story was told through a wounded body. The stories that ill people tell come out of their bodies. The body sets in motion the need for new stories when its disease disrupts the old stories. The body, whether still diseased or recovered, is simultaneously cause, topic, and instrument of whatever new stories are told. These embodied stories have two sides, one personal and the other social.
The personal issue of telling stories about illness is to give voice to the body, so that the changed body can become once again familiar in these stories. But as the language of the story seeks to make the body familiar, the body eludes language. To paraphrase Martin Buber, the body "does not use speech, yet begets it." The ill body is certainly not mute—it speaks eloquently in pains and symptoms—but it is inarticulate. We must 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 is told in stories that are instigated by a need to make it familiar.
The alternative to this frustration is to reduce the body to being the mere topic of the story and thus to deny the story's primary condition: the teller has or has had a disease. That the teller'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 the sick body beneath it. The head is tied to that body through pathways that science is only beginning to comprehend, but the general principle is clear: the mind does not rest above the body but is diffused throughout it.
But actually hearing traces of the body in the story is not easy. Observing what stories say about the body is a familiar sort of listening; describing stories as told through the body requires another level of attention. This book attempts to evoke this other level of attention: How can we make sense of illness stories as being told through the diseased body?
The ill body's articulation in stories is a personal task, but the stories told by the ill are also social. The obvious social aspect of stories is that they are told to someone, whether that other person is immediately present or not. Even messages in a bottle imply a potential reader. The less evident social aspect of stories is that people do not make up their stories by themselves. The shape of the telling is molded by all the rhetorical expectations that the storyteller has been internalizing ever since he first heard some relative describe an illness, or she saw her first television commercial for a non-prescription remedy, or he was instructed to "tell the doctor what hurts" and had to figure out what counted as the story that the doctor wanted to hear. From their families and friends, from the popular culture that surrounds them, and from the stories of other ill people, storytellers have learned formal structures of narrative, conventional metaphors and imagery, and standards of what is and is not appropriate to tell. Whenever a new story is told, these rhetorical expectations are reinforced in some ways, changed in others, and passed on to affect others' stories.
A first topic of this book is the need of ill people to tell their stories, in order to construct new maps and new perceptions of their relationships to the world. A second topic is the embodiment of these stories: huw they are told not just about the body but through it. A third topic is the times that stories are told in: how the social context affects which stories get told and how they are told. The central issue of context is the distinction between illness as experienced in modern versus postmodern times.
The prefix "post" is not quite right; I do not propose any strict periodization of the modern and the postmodern. I do believe that over a period of time, perhaps the last twenty years, how people think about themselves and their worlds has changed enough to deserve a label, and the most accepted label—increasingly diffused in journalism and popular culture—is postmodernism. Because of the number of intellectual agendae that employ some version of this label, I prefer "post-modern times." The times that contemporary illness stories are told in, which are also the times I am writing in, have changed fairly recently.
Albert Borgmann's title Crossing the Postmodern Divide provides 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 now seems useful for new purposes. Fundamental assumptions that give life its particular meaning have changed. Postmodernity is such a crossing, occurring when the same ideas and actions are overlaid with different meanings. Sometimes these differences of having crossed the divide are clear, but more often they are subtle: things just feel different. Illness has come to feel different during the last twenty years, and today the sum of those differences can be labeled postmodernism. I make no attempt to define postmodernism; the utility of that term lies only in thick descriptions of the feel of the differences.
A useful, if simplified, evocation of the shift from the premodern experience of illness to modernity is provided by a North African woman quoted by Pierre Bourdieu in his anthropological research. That Bourdieu recorded this quotation from a living person is a reminder of the proximity and overlap of the premodern, modern, and postmodern. "In the old days," the woman said, "folk didn't know what illness was. They went to bed and they died. It's only nowadays that we've learned words like liver, lung, stomach, and I don't know what!"
Of course premodern people had rich descriptors for disease and its remedies; ethnomedicine was and is highly specific. But I interpret the speaker's closing exclamation as indicating being overwhelmed: she literally doesn't know what. The specialized medical terms that the woman claims her people have only recently learned overwhelm her experience because they come from elsewhere. The shift to modernity crosses a divide into a medical culture that is foreign to this woman's experience of illness.
The modern experience of illness begins when popular experience is overtaken by technical expertise, including complex organizations of treatment. Folk no longer go to bed and die, cared for by family members and neighbors who have a talent for healing. Folk now go to paid professionals who reinterpret their pains as symptoms, using a specialized language that is unfamiliar and overwhelming. As patients, these folk accumulate entries on medical charts which in most instances they are neither able nor allowed to read; the chart becomes the official story of the illness. Other stories proliferate. I11 people tell family and friends versions of what the doctor said, and these others reply by telling experiences that seem to be similar: both experiences they have had themselves and ones heard 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 period is the medical narrative. The story told by the physician becomes the one against which others are ultimately judged true or false, useful or not. I will discuss Talcott Parsons's theory of the "sick role" in later chapters. What is relevant here is Parsons's observation, made about 1950, that a core social expectation of being sick is surrendering oneself to the care of a physician. I understand this obligation of seeking medical care as a narrative surrender and mark it as the central moment in modernist illness experience. The ill person not only agrees to follw physical regimens that are prescribed; she also agrees, tacitly but with no less implication, to tell her story in medical terms. "Hw are you?" now requires that personal feeling be contextualized within a secondhand medical report. The physician becomes the spokesperson for the disease, and the ill person's stories come to depend heavily on repetition of what the physician has said.
Times have come full circle from Bourdieu's North African informant when we read of a patient whose running joke with his surgeon involves reporting his symptoms in an overdone version of medical obscurity, For example, "If you will diligently investigate the pilar projections rising sparsely from the vertext of my cranial ossification, you will detect a macular callosity which may have malignant potential." If modern medicine began when physicians asserted their authority as scientists by imposing specialized language on their patients' experiences, the postmodern divide is crossed when patients such as this one can mimic this language in a send-up of medicine that is shared with the physician. But lay familiarity with medical terms and techniques, even to the point of parody, is only one potential of the postmodern experience of illness.
The postmodern experience of illness begins when ill people recognize that more is involved in their experiences than the medical story can tell. The loss of a life's map and destination are not medical symptoms, at least until some psychiatric threshold is reached. The scope of modernist medicine—defined in practices ranging from medical school curricula to billing categories—does not include helping patients learn to think differently about their post-illness worlds and construct new relationships to those worlds. Yet people like Judith Zaruches express a self-conscious need to think differently.
Both the divide that was crossed from the premodern to the modern and that from modern to postmodern involve issues of voice. The woman reported by Bourdieu seems to perceive that medicine has taken away her voice: medicine assails her with words she does not want to know and leaves her not knowing what. But this woman does not perceive a need for what would now be called her own voice, a personal voice telling what illness has imposed on her and seeking to define for herself a new place in the world. What is distinct in postmodern times is people feeling a need for a voice they can recognize as their own.
This sense of need for a personal voice depends on the availability of the means-the rhetorical tools and cultural legitimacy-for expressing this voice. Postmodern times are when the capacity for telling one's own story is reclaimed. Modernist medicine hardly goes away: the postmodern claim to one's own voice is halting, self-doubting, and often inarticulate, but such claims have enough currency for illness to take on a different feel.
Voices tell stories. Stories are premodern; Bourdieu's informant suggests that the coming of modern medicine took away a 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 is crossed when people's own stories are no longer told as secondary but have their own primary importance. Illness elicits more than fitting the body into traditional community expectations or surrendering the body to professional medicine, though both community traditions and professional medicine remain. Postmodern illness is an experience, a reflection on body, self, and the destination that life's map leads to.
The Remission Society
The possibility, even the necessity of ill people telling their own stories has been set in place by the same modernist medicine that cannot contain these stories. At the end of the story that I wrote about my own experience of having cancer, I used the term "remission society" to describe all those people who, like me, were effectively well but could never be considered cured. These people are all around, though often invisible. A man standing behind me in an airport security check announces that 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 have had almost any cancer, those living in cardiac recovery programs, diabetics, those whose allergies and environmental sensitivities require dietary and other self-monitoring, those with prostheses and mechanical body regulators, the chronically ill, the disabled, those "recovering from abuses and addictions, and for all these people, the families that share the worries and daily triumph of staying well.
Cathy Pearse writes in middle-age about having a bleeding cerebral aneurysm—a stroke—when she was twenty. During the operation, a cranial nerve was damaged. She still suffers from double vision, which she reports is "an ever present reminder" of her near-death experience. Her body is now beginning to feel the long-term effects of muscle asymmetry and favoring her "good side." But her illness history would be invisible to 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 still describe what happened in exquisite detail; she recalls the hurt caused by a nurse's casual comment as if it had been spoken yesterday She refers to being a "recovered stroke patient" as one aspect of her "ethnicity," a word suggesting an irrevocable identity.
The physical existence of the remission society is modern: the technical achievements of modernist medicine make these lives possible. But people's self-consciousness of what it means to live in the wake of illness is postmodern. In modernist thought people are well or sick. Sickness and wellness shift definitively as to which is foreground and which is background at any given moment. In the remission society the foreground and background of sickness and health constantly shade into each other. Instead of a static picture on the page where light is separated from dark, the image is like a computer graphic where one shape is constantly in process of becoming the other.
Parsons's modernist "sick role" carries the expectation that ill people get well, cease to be patients, and return to their normal obligations. In the remission society people return, but obligations are never again what used to be normal. Susan Sontag's metaphor of illness as travel is more subtle than Parsons's sick role. We are each citizens of two kingdoms, Sontag writes, the kingdom of the well and that of the sick. "Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." Sontag's notion of dual citizenship suggests a separation of these two kingdoms. The remission society is left to be either a demilitarized zone in between them, or else it is a secret society within the realm of the healthy.
To adapt Sontag's metaphor, members of the remission society do not use one passport or the other. Instead they are on permanent visa status, that visa requiring periodic renewal. The triumph of modernist medicine is to allow increasing numbers of people who would have been dead to enjoy this visa status, living in the world of the healthy even if always subject to expulsion. The problem for these people is that modernist medicine lacked a story appropriate to the experience it was setting in place. People like Judith Zaruches were left needing a new map for their lives.
Excerpted from The Wounded Storyteller by Arthur W. Frank. Copyright © 2013 The University of Chicago. Excerpted by permission of THE UNIVERSITY OF CHICAGO PRESS.
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