Beyond Words: Illness and the Limits of Expression

Introduction

Introduction My interest in illness narratives began in 1993 while I was receiving chemotherapy for breast cancer. Feeling devastated by the experience and unhelped by the many stories offered me as inspiration— the eighty-year-old woman who looked gorgeous after three cancers, the thirty-‹ve-year-old who jogged ‹ve miles a day during chemo— I searched for stories written by people like me whose emotional resources were strained to the limit and who were trying with everything they had just to cope. I felt that if there were writers who spoke plainly about what serious illness is really like, then I could learn something from them about how to endure suffering. I found a plethora of books about illness and disability in which their authors attempt to describe and make sense of a range of devastating bodily experiences. Yet most of these books left me unsatis‹ed. They fall into the category of what are described as narratives of triumph . In them, the author, after the initial shock and devastation of receiving a serious diagnosis or suffering an accident, and sometimes after a false start or two, ‹nds a comfortable way to cope, and eventually is restored to health or achieves some kind of emotional resolution . These narratives are predictable in plot and moral. The writers of the triumph narrative tend to re›ect on their experience relatively little as they go along, reserving re›ection for the end. From a position of authority outside the actual experience, they look back and offer this conclusion: if one battles hard and maintains a positive attitude, everything will work out. They often express grati- tude for illness as an opportunity for personal growth and offer their advice to the reader: live every day as fully as possible. These books, while often of interest because of the dramatic nature of their story and the soothing nature of their message, ultimately disappoint. By offering platitudes, they leave the reader with little insight into some of life’s most challenging experiences. They decline to struggle over the many questions for which there seem to be few answers. In essence they shrink from the complexity of their experience and focus on one slice of it—the ‹nal resolution—which they portray as a triumph that results from determination and a positive attitude. By adhering to the culturally preferred narrative of triumph , authors typically downplay or deny other dimensions of their own experience, particularly the more painful and unmanageable ones. Without a greater acknowledgment of these dif‹cult aspects of illness and disability their triumph seems super‹cial. I and many who are ill and disabled have longed for a story that takes us into the darker and less familiar corners of the territory of illness , what Reynolds Price calls “the far side of catastrophe, the dim other side of that high wall that effectively shuts disaster off from the unfazed world.”1 It is a world unto itself, and we who ‹nd ourselves there discover that the usual resources for coping are sorely tried. We long to hear from someone who speaks from within personal experience and describes what it is really like to have cancer, to lose a leg, to become blind, or to feel the mind spinning out of control. We long to hear from someone who admits that even enormous love from others does not erase the essential loneliness of illness. We want to hear not clichés but an acknowledgment that illness is not simply an opportunity for personal growth but a soul-wrenching encounter with loss, limitation, and the reality of death. We want to hear from someone who does not go gently into that dark night. I wrote and published my own memoir2 in an attempt to describe my experience on the far side of breast cancer. Later, I did discover a group of books—few of them to be found on the shelves of my local bookstore—whose authors had attempted to describe serious illness or injury and explored more fully those questions about life that resist easy answers. These writers, by re›ecting throughout their narratives on the ways illness or accident shattered their selves and 2 / Beyond Words altered their lives, push the boundaries of what we can understand about these devastating experiences. Through the lens of their individual struggles they tell us something new. Their accomplishment —itself a kind of triumph—lies...