Beyond Words: Illness and the Limits of Expression

Afterword

/ 153 / Afterword Since the first publication of Illness and the Limits of Expression in 2007 (University of Michigan Press), the number of people telling their personal stories about a vast array of illnesses and disabilities has continued to grow. Patients, relatives, caregivers, friends, and doctors are telling their stories in books and magazines, writing essays and poetry for journals and online publications, showing their photographs in exhibits. Illness stories are increasingly the subject of blogs and graphic memoirs and are performed by actors in plays and by spoken-word artists. At the same time more and more universities are offering humanities courses on illness narratives, and medical schools are developing narrative medicine programs, designed to help students better understand the experience of illness so they can empathize with patients and help them give voice to their experiences. The very existence of these programs reflects the universality of the desire to grapple with the realities of illness. Nonetheless, this continued and widespread interest in illness stories does not necessarily represent a coming to terms with the difficult reality of illness and death. In fact, the triumph narrative, with its insistence on positivity and a happy ending, is alive and well, particularly in mass-market magazines and online advertisements , as well as on media, advocacy, and drug company websites that solicit stories from patients. While the authors of these stories may acknowledge the devastation of illness and treatment, they still tend to emphasize restored health and lessons learned. They focus less on those aspects of the experience that feel beyond one’s control, even unbearable. As I have argued in this book, we Americans are especially likely to tell optimistic stories about illness, characterized by a belief that we can conquer anything if we only try hard enough. We want to tell a triumph story. It’s the American story, and it reflects a persistent and still widespread reluctance among Americans to face the reality of illness and death. I once met an editor who told me she was proud to have never published a cancer book. When the Affordable Care Act was first proposed there was a huge uproar over the provision that would cover the cost of a discussion between doctor and patient about the patient’s wishes for end-of-life care. This seeming reluctance to deal with death is mirrored by the fact that about one-third of our health care dollars goes to end-of-life care. As a culture we deem it appropriate to go to any length to prolong life, even when death is imminent. We won’t talk about death, and even when it is inevitable we refuse to accept it. So we tell stories that downplay the devastation and difficulties of illness and treatment. When I was writing this book I kept coming upon images in advertisements and the media depicting women with cancer who looked beautiful and showed no signs of illness or the side effects of treatment. Intended to sell cosmetics and medications or to attract customers to a particular hospital, these images have an insidious effect: they leave us with the alluring notion that you can be sick without its affecting your life. An even more unrealistic image is being offered to women with cancer today. Over the last decade the book covers and titles of a number of cancer narratives suggest this story: “I was diagnosed with cancer at a young age but still managed to be sexy, glamorous, and spunky.” The cartoonist Marisa Acocella Marchetto begins her book Cancer Vixen: A True Story (Pantheon Books, 2006) with this question: “What happens when a shoe-crazy, lipstick-obsessed, . . . single-forever, about-to-be-married big-city girl cartoonist with a fabulous life finds a lump in her breast?” Shoes, lipstick, single in the city, fabulous life—all code words for a Sex and the City kind of woman. On the cover is a drawing of a young woman with blond, 154 / Beyond Words flowing hair, sunglasses, and stiletto heels. Like a female superhero, she stands atop a large city. In a similar vein, Geralyn Lucas writes a memoir called Why I Wore Lipstick to My Mastectomy (St. Martin’s Press, 2005). On the cover of the paperback edition is a toned, perfectly made-up, darkhaired beauty. It is possible to purchase the DVD of the Lifetime Original Movie and the Amazon Instant Video whose cover features a...