Illness as Narrative

Ann Jurecic

• Publisher: University of Pittsburgh Press
• Year: 2012
• ISBN:
  9780822977865
• Topic: Literature
• Subtopic: Literary Criticism
• Index: Literature

For most of literary history, personal confessions about illness were considered too intimate to share publicly. By the mid-twentieth century, however, a series of events set the stage for the emergence of the illness narrative. The increase of chronic disease, the transformation of medicine into big business, the women's health movement, the AIDS/HIV pandemic, the advent of inexpensive paperbacks, and the rise of self-publishing all contributed to the proliferation of narratives about encounters with medicine and mortality.
While the illness narrative is now a staple of the publishing industry, the genre itself has posed a problem for literary studies. What is the role of criticism in relation to personal accounts of suffering? Can these narratives be judged on aesthetic grounds? Are they a collective expression of the lost intimacy of the patient-doctor relationship? Is their function thus instrumental—to elicit the reader's empathy?
To answer these questions, Ann Jurecic turns to major works on pain and suffering by Susan Sontag, Elaine Scarry, and Eve Sedgwick and reads these alongside illness narratives by Jean-Dominique Bauby, Reynolds Price, and Anne Fadiman, among others. In the process, she defines the subgenres of risk and pain narratives and explores a range of critical responses guided, alternately, by narrative empathy, the hermeneutics of suspicion, and the practice of reparative reading.
Illness as Narrative seeks to draw wider attention to this form of life writing and to argue for new approaches to both literary criticism and teaching narrative. Jurecic calls for a practice that's both compassionate and critical. She asks that we consider why writers compose stories of illness, how readers receive them, and how both use these narratives to make meaning of human fragility and mortality.

One

Illness Narratives and the Challenge to Criticism

FROM THE WINTER OF 1918 until the spring of 1919, an influenza outbreak swept the globe, killing fifty to a hundred million people, as much as 5 percent of the world's population (Barry 397). Despite the flu's ferocity, for much of the twentieth century this pandemic nearly vanished from popular consciousness. Although more United States soldiers died from the flu than from combat during World War I, it has rarely been given a significant place in American histories of the war.¹ Even though, according to historian John M. Barry, it “killed more people in a year than the Black Death of the Middle Ages killed in a century” (5), the pandemic is virtually absent from American and British literature of its era. Mary McCarthy, whose parents both died of the virus when she was six years old, briefly mentions the flu at the beginning of Memories of a Catholic Girlhood. In the novel Look Homeward, Angel, Thomas Wolfe devotes one chapter to the death of the main character's brother, clearly a double for his own brother Benjamin, who died of the flu when Wolfe was in college. Influenza appears in the background of Willa Cather's war novel One of Ours and Wallace Stegner's The Big Rock Candy Mountain. Only one canonical work of fiction written in English places the epidemic at the center of the plot: Katherine Anne Porter's “Pale Horse, Pale Rider,” a novella narrated in a feverish, dreamlike manner by a young woman who falls ill, almost dies, and revives just in time to hear the discordant noise of Armistice celebrations.² How to bring the pandemic and the narrative form together? It is as if the project were unimaginable in the early twentieth century.

In stark contrast to the near silence that followed the 1918 pandemic, seventy years later a flood of texts appeared in response to the emergence of HIV/AIDS. In the United States, people with AIDS published a wide range of writing about their experiences of the disease, as did their doctors and caregivers. Journalists, playwrights, novelists, poets, memoirists, and diarists joined artists from other media in an effort to document the pandemic, create memorial art, and make meaning of suffering and loss on scales ranging from the individual to the global.³ A good portion of the published texts, from articles to book-length autobiographies, fall into the category the medical humanities defines as “illness narratives”—autobiographical accounts of illness spoken or written by patients. For the purposes of this study, in which I am concerned with how contemporary writers compose illness and how readers receive the accounts, I expand the works covered by the term to include fiction and blogs, as well as academic and popular commentary, and I broaden the range of authors to include family members, physicians, caregivers—even novelists. This broadened category makes ever more apparent the thunderous cacophony of voices about HIV/AIDS, and the volume of their stories about loss, sorrow, struggle, rage, and redemption or its absence.

What can account for all this writing? Why, in the 1980s and 1990s, did the quantity of writing about HIV/AIDS exceed that of any previous disease—not just flu, but tuberculosis, polio, cancer, and more?⁴ Much of the scholarship about these late-twentieth-century narratives tends to consider writing about HIV/AIDS in relative isolation, as if it were a product of a particular historical period when the virus threatened to decimate a generation of gay men.⁵ No doubt, AIDS required and continues to require a powerful literary response because it forms such a complex knot of personal, scientific, cultural, social, and political issues and because in the United States it has so deeply scarred the artistic community.⁶ But literature about HIV/AIDS did not develop in isolation, as I will explain in detail. It was preceded and accompanied by the emergence of a narrative form not available during the 1918 flu pandemic that has at its center personal accounts of illness and dying. As literary production about AIDS waned, however, the volume of autobiographical writing about illness and disability continued to grow, surpassing the rate of production of AIDS memoirs. Indeed, by the late twentieth century, illness and disability narratives were established as literary genres.

Since their ascendance, these narratives have shifted the boundaries of literary study. In the academy, for instance, accounts of illness have become central to the literary branch of medical humanism. Medical humanists who teach literature in medical schools and centers have drawn attention to how narratives about suffering sustain individuals and communities. They observe how autobiographical illness narratives reclaim patients' voices from the biomedical narratives imposed upon them by modern medicine.⁷ They study, as well, how literary, popular, and medical narratives report and construct the experience of illness, from the personal level to the national.⁸ And they encourage medical practitioners to respond to the stories of suffering people with attention, respect, and understanding.

Such an approach to personal narrative is, however, out of step with mainstream literary criticism, which has not, by and large, recognized the significance of the work performed by such texts. The gap between the pragmatic work done by medical humanists in professional schools and the theoretical projects of scholars in the academy has long been evident but has not been examined and explained. Illness as Narrative makes the argument that one cannot fully understand writing about illness without also recognizing the split in critical attitudes toward these works. I contend, in fact, that literature about illness poses a special challenge to those current critical practices that are based in what Paul Ricoeur called the hermeneutics of suspicion. In Freud and Philosophy, Ricoeur writes that dual motives underlie literary interpretation: “[the] willingness to suspect, [and the] willingness to listen” (27). He sees suspicion and phenomenology as ideally counterbalancing each other in critical practice. In more recent decades, however, critics such as Eve Kosofsky Sedgwick, Bruno Latour, and Rita Felski have noted that the hermeneutics of suspicion has displaced what Ricoeur called listening and become “nearly synonymous with criticism itself” (Sedgwick, Touching Feeling, 124). Distrust of texts' errors, lies, and manipulations has become prescriptive, and the project of much contemporary criticism has become to anticipate and contain textual and theoretical problems in advance (Sedgwick, Touching Feeling, 130). For scholars trained in such habits of reading, the idea of trusting a narrative to provide access to the experience of another person indicates a naïve understanding of how such texts function. Before a contemporary critic begins to read an autobiography about cancer or pain, she knows that it has been constructed by medical discourse and political, economic, and cultural forces. She also knows that common readers are likely to misread it because they will assume they can try on the experience of the author and that they will therefore succumb to the myriad powers of dominant discourse. She is also likely to assume that the narrative itself is not as sophisticated or knowing as the theory she uses to interpret it. Such a suspicious critical position is not necessarily wrong, but it is incomplete. Literary critics' disdain for or disinterest in illness memoirs suggests, above all, that contemporary critics have become alienated from ordinary motives for reading and writing.

How might literary critics in the academy reclaim the “willingness to listen” that would enable them to attend more fully to the cultural work of writing about illness (Ricoeur 27)? Providing an answer, or rather answers, to this question is the goal of Illness as Narrative. This book will explore how writers and readers use narratives of illness to make meaning of the experiences of living at risk, in prognosis, and in pain. It will also consider how narratives of illness invite reflection about the purpose and future of literature, the arts, and literary criticism. The academy has long rewarded readings that dismantle literature's illusions but, with regard to literary and amateur illness memoirs, it is also evident that critics need other options, interpretive approaches that enable them to assemble meaning in the face of life's fragility. This chapter begins the larger exploration of Illness as Narrative by charting the rise of illness narratives and considering how this history brings to the surface difficult questions about the evolution of contemporary criticism—what it has made possible, and what it has excluded.

The Emergence of Illness Narratives in the Twentieth Century

Having observed the remarkable cultural shift from the silence about the 1918 flu and the quantities of writing that appeared with the pandemic of HIV/AIDS, how do we account for the proliferation of illness memoirs in the late twentieth century? What changes occurred historically, culturally, politically, and medically to bring about this transformation in literacy and literature? A patchwork of answers is available in medical, scholarly, and popular writing on health and illness. In the early twentieth century, the flu evaded expression, in part because it spread so quickly and affected so many that it overwhelmed feeble governmental and medical, as well as narrative, responses. As terrifying as the plague was, it generally remained off the front pages of newspapers, where the war remained the primary concern. In an apparent effort to allay anxiety during the peak of the pandemic, journalists throughout the United States and much of Europe downplayed the severity of the virus (Kolata 51–54; Barry 335). In the New York Times, for instance, only four front-page articles appeared between August and December 1918, during the height of the outbreak. The strategy of journalistic understatement during the height of the pandemic may ultimately have triggered more alarm among the general public because “what officials and the press said bore no relationship to what people saw and touched and smelled and endured” (Barry 335; see also Kolata). At stake is more than the stories that journalists and editors consider appropriate to publish. The silence extended to other genres of writing.⁹ Catherine Belling writes in a study of fiction about the epidemic, “in 1918…, the story of the self was seldom told in public—or at all, especially if it involved private bodily suffering” (57).

In the aftermath of the outbreak, modernists such as Virginia Woolf, working against a different assumption—that illness is too ordinary to merit representation—began to make everyday life the subject of their art. Seven years after the end of the pandemic, Woolf argued in her essay On Being Ill, that the commonness of illness had prevented it from “tak[ing] its place with love and battle and jealousy among the prime themes of literature” (3–4). She titled one version of this essay “Illness: An Unexploited Mine”—a turn of phrase that in 1926 would have suggested unexploded mines—that is, land mines—from the recent war. With the war over, Woolf encouraged writers to turn their attention to the hidden drama of the sickroom, which she believed held more literary promise than the military detritus of war. “One would have thought,” Woolf wrote, that “novels…would have been devoted to influenza; epic poems to typhoid; odes to pneumonia, lyrics to toothache. But no” (4). The story of the body, it seems, “lack[s] plot” (6). Such a claim ignores the presence of illness in the works of Chaucer, the Brontës, Dostoyevsky, and more.¹⁰ It also disregards the ubiquitous Romantic association of tuberculosis and madness with creativity by suggesting that literature ignores the body, as if it were “a sheet of plain glass through which the soul looks straight and clear” (4). According to Woolf, “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache” (6). In fact, however, she sees the problem as both the absence of words for embodied suffering and the inability of language more generally to communicate personal experience. Such failures render true comprehension of another's illness impossible. In the infirmary, naïve illusions about the possibility for sympathy, companionship, and the understanding of others dissipate, and one recognizes not only the profound indifference of the world, but also one's own insignificance.

There is no evidence that Woolf's argument about language, plot, and illness influenced the writers of her era. Certainly, no rush of novels, epics, or lyrics about influenza suddenly materialized. In the first half of the twentieth century, however, several types of narratives about illness began to appear regularly in professional medical journals and occasionally in the popular press, including biographical case studies by psychologists and psychiatrists, brief snippets of professional memoirs by nurses, and doctors' heroic narratives of discovery.¹¹ These were precursors to the patients' own illness narratives. By the 1920s and 1930s, tuberculosis patients composed and published what historian Sheila Rothman calls “sanatorium narratives” (226). Unlike nineteenth-century autobiographies that might integrate discussions of illness into a larger life story, sanatorium narratives more narrowly depicted “an encounter with disease, with staff, and with other patients” in large, impersonal medical facilities where routines were rigid and physicians aloof (Rothman 227). Anne Hunsaker Hawkins observes in Reconstructing Illness, a study of book-length illness narratives (which she calls “pathographies”), that few such narratives, other than those set in the sanatorium, emerged until the 1950s (xiv). By the mid-twentieth century, however, patients with polio—many of whom were also isolated in institutions—began to publish their stories.¹² At the same time, medical journals printed dozens of articles about the “last illnesses” of famous people, from Katherine Mansfield to Charles, Duke of Albany, and from Mozart to Major Walter Reed.¹³ In addition, the “paperback revolution”—which began in the United States with Pocket Books in 1939—made books more affordable to mass audiences and allowed different genres to become popular and profitable, including the therapeutic narratives of self-help and popular psychology, cousins of today's narratives of medical triumph (Illouz 162).

After 1950, profound changes in the patient-doctor relationship were brought about by the increasing professionalization and specialization of medicine. Modern medicine forced trade-offs for both patients and their physicians. Disease became isolated from everyday life because patients now traveled to physicians' offices and hospitals for diagnosis and care (A. H. Hawkins 11). The ill exchanged intimate relationships with local doctors for improved medical efficacy, even as both patients and physicians recognized that inattention to the patient's subjective experience was a detriment to treatment. Evidence that physicians were not blind to this loss can be found in When Doctors Are Patients, a collection of thirty-three case histories by physicians about their own illnesses, published in 1952. In the introduction, the physician-editors, Max Pinner and Benjamin F. Miller, state that their goal is to remind doctors that every disease “affects both body and soul” (xiv). “The patient-physician relation is complex and difficult at best,” writes Pinner about his own experience seeking treatment for chronic heart disease. As a patient, he was able to find physicians who were “highly competent and able” and “showed genuine professional and human interest” and yet, he says: “with one or two exceptions, they did not understand the full extent of the help they could have given nor the type of help I had expected. The patient needs more than treatment and reassurance; he wants his physician to take the responsibility upon himself” (24). What Pinner needed most was not a list of rules and restrictions—not the mere exercise of technical knowledge—but rather to be shown “the possibilities for enjoyable and fertile living within new limitations” (25).

The loss of intimacy between patients and their physicians accelerated as medical research radically transformed the profession. The discovery of sulfa drugs in the mid-1930s enabled physicians to fight bacterial infections for the first time. Antibiotics, such as streptomycin and penicillin, were developed in the 1940s and did an even better job. Vaccines helped to control diphtheria, tetanus, and yellow fever, and later measles, mumps, rubella, and polio. By midcentury in the United States and much of Western Europe, the age of acute disease had come to an end (R. Porter 685). What followed, however, was not an age of health and medical triumph, as was expected. Instead, the industrialized world entered the “age of chronic disease” (R. Porter 685). With medicine's ability to cure infectious diseases, people lived long enough to develop ailments of age and prosperity such as heart disease, diabetes, cancer, and arthritis, and they also lived long enough to reflect on and write about their experiences. Although people were doing better after midcentury, they were feeling worse.¹⁴ Scholars and other cultural critics therefore began publishing critiques of the medical profession that demonstrated that this matter of “feeling worse” did not represent isolated personal discontent, but rather a general cultural problem. In 1951, Talcott Parsons published The Social System, one of the first sociological studies of the modern medical institution, setting the stage for more analyses that focused on the experience of the patient and the weaknesses of the medical enterprise. In The Social System, Parsons defined the “sick role”—the theory that the treatment of illness within medical institutions transforms people into patients and inscribes them into a particular social script. The appeal of the sick role to the patient, according to Parsons, is that he or she is released from ordinary social roles and obligations; the danger is that he or she is thus compelled to behave according to the institutional norms of medicine. By the 1960s, patients began voicing Parsons's analysis on their own. Members of the antipsychiatry and women's health movements, as well as supporters of new community health centers and pain clinics, denounced their alienation from practitioners and expressed suspicion that medicine had overreached its authority and “medicalized” life by imposing its expertise and control on intimate experiences, from birth to death (R. Porter 691–93). It is also the case, however, that even as complaints about bureaucratic, institutionalized, and increasingly technological medicine grew more widespread, patients became ever more active medical consumers, eventually seeking out medical treatment for everything from attention deficits to weight loss, issues that were not seen as medical before the mid-twentieth century.

As frustrations with the medical system increased, critical commentaries about contemporary medicine began to reach wider, popular audiences. Among the most enduring and influential of these texts is Elizabeth Kübler-Ross's On Death and Dying, which appeared in 1969 and made the case for rehumanizing the processes of dying and grieving. This work, in which Kübler-Ross described what she saw as the five stages of grief—denial, anger, bargaining, depression, and acceptance—contributed to the growth of the hospice movement. On Death and Dying was quickly followed in 1970 by the first edition of Our Bodies, Ourselves (under the original title Women and Their Bodies), which became the bible of the emerging women's health moment.¹⁵ That same year, the founding document of the field of bioethics appeared, Paul Ramsay's The Patient as Person: Explorations in Medical Ethics. Three additional texts from the late 1970s would further prepare the ground for the proliferation of illness narratives. Intellectual gadfly Ivan Illich published Medical Nemesis: The Expropriation of Health in 1976, in which he attacked doctors, hospitals, and medical institutions for harming more than healing. Two years later, Susan Sontag's Illness as Metaphor came out, which docum...