Illness as Narrative

Chapter 1: Illness Narratives and the Challenge to Criticism

1 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 One} Illness Narratives and the Challenge to Criticism 2 Illness narratIves and the Challenge to CrItICIsm 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...