Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma

Temporal Assumptions: Aging with Cystic Fibrosis

Just as lived spatiality is characterized by an outward directedness, a purposiveness and intention, so time is experienced not as a static present but as a moving toward the future. —S. Kay Toombs, The Meaning of Illness (1992, 68) We went to the … orthodontist and he did a history and he said yeah, you definitely could do with braces. But why? You’ve got this, this CF, and I really think you are wasting your money. Why don’t you hold on to that precious fund for your parents. It’s like $3,000 and that would be better capital … for burial expenses than it would be for getting your … teeth straightened. —Lori, a thirty-six-year-old person living with cf, describing an event that occurred at about age eighteen. In his description of the ethical potential of illness narratives, Arthur Frank (1995, 55) suggests that “the conventional expectation of any narrative, held alike by listeners and storytellers, is for a past that leads into a present that sets in place a foreseeable future.” Among the many problems associated with chronic illnesses, then, and especially with life-threatening chronic illnesses, is that they threaten the ill person’s temporality and their future directedness. Until recently, this has resulted in the silencing of those who experience such illnesses. The emergence and increasing legitimacy of the illness narrative, however, has begun to rectify this problem . Illness narratives have gone a long way toward providing a way for the ill to articulate what it means to be alive after the onset of chronic and life-threatening illness. 265 j. daniel schubert Temporal Assumptions Aging with Cystic Fibrosis Narratives construct or reconstruct realities in particular ways (Bruner 2002; Lyotard 1984). Stories make worlds, and in doing so, they legitimate ways of storytelling and ways of being. However, any given story leaves out as much, perhaps, as it includes, and, in this essay, I will examine what the temporal structures of illness narratives leave out. I do so by asking a simple question: if a temporal dimension is implicit in all narrative, and if the self is a discursive category constituted through narrative, what does it mean to live one’s entire life—and not just the life that takes place after the onset of chronic illness—at the edge of life expectancy? What is life like for those who have never had a foreseeable future, or at least not the kind of future outlined by contemporary life-course studies that describe the transitions that exist between childhood, adolescence, adulthood, and old-age?1 There is a unique cohort of people alive today who can address this question: for the first time in history, there are significant numbers of adults living with cystic fibrosis (cf). Until very recently, cf has been a childhood disease. However, improvements in diagnosis and treatment over the last half century have increased life expectancy from less than two years to more than thirty-two years. What this means is that cf is no longer just a childhood disease. What it also means is that those adults living with cf have lived their entire lives near, at, or even a few years beyond their assumed life expectancy. This differs from the general population of industrialized nations, where it is the elderly who are living near life expectancy. For the most part, unless they are victims of accidents , suicides, or homicides, people in wealthy countries get old before they die (Nuland 1993), but those with cf are too young to be old. Those with the disease who die as adults die young in comparison to those without cf. Even with the dramatic improvements in the treatment of cf that have emerged in recent years, life expectancy is still less than half that of the general population. On the other hand, in the cf population until recently, just about everybody was young. Very few people with the disease lived to see adulthood, and most died while they were children or adolescents . Now, adults with cf are too old to die young.2 There is, of course, a vast literature of chronic illness that addresses endof -life issues. However, as already suggested, most writers in the field focus attention on those for whom chronic illness arrives relatively late in life. Chronic illness for these people is, as Kathy Charmaz and many others have suggested, an interruption in what is otherwise a relatively nonill life. Charmaz spends much of her book Good Days, Bad...