"A Case of Amyotrophic Lateral Sclerosis": A Reprise and Reply

A "A Case of Amyotrophic Lateral Sclerosis": A Reprise and Reply David Barnard . . . [EJvery . . . patient is thrown into a "tale," a real-life narrative or drama, whether he knows it, or likes it, or not. He is thrown into the problematic, and thrown into the dramatic—this being an essential horror, or privilege, of being sick. And the problematic and the dramatic are fused together, so he finds himself playing the central (and sole) role in a philosophical or symbolic drama. Case histories, while indispensable, do not move at this level; they go no further than the historical presentation of disease. They are wholly descriptive, not narrative or dramatic. They do not present "patienthood," but only "casehood." They do not show us the patient thrust into a role—nor the fateful character of sickness, which imposes on him roles. The idea of fate, hence of existential drama, is missing from case histories. It is only in a fully narrative form—a clinical tale— that the subject, his "fate," the drama of his existence, can be exhibited in all their fullness and force.1 These words are from an essay by Oliver Sacks in an earlier volume of this journal; the essay was printed immediately before my narrative case history "A Case of Amyotrophic Lateral Sclerosis."2 In 1979, when I began the research and writing of my case, I had not heard of Oliver Sacks. Nor did I have any carefully worked-out ideas about the "philosophical or symbolic drama" enacted by sick people or the implications of this conception of illness for the form of the case history. I did have my own concerns, however, about the limitations of medical case histories that I was familiar with at the time. While the object of Sacks's comments is the strictly technical case report that describes the course of a disease, my dissatisfaction was with case histories that actually did address social, psychological, and ethical Literature and Medicine 11, no. 1 (Spring 1992) 133-146 © 1992 by The Johns Hopkins University Press 134 A REPRISE AND REPLY aspects of illness. First, most of these so-called histories were not extended narratives at all; they were vignettes, usually containing a moral quandary or an emotional bind. At best, these vignettes were snapshots of a clinical situation at one moment in time. They could be useful for beginning a discussion, but they conveyed very little flavor of anyone's experience. Even these discussions would usually peter out quickly, or lapse into generalizations and abstractions for lack of sufficient detail about the people and their social contexts. Second, those case histories that were more fully developed tended to be one-sided. They were usually retrospective reconstructions from the single point of view of the doctor or the patient (or someone close to the patient). Yet I had come to believe that the patient's illness is often a meaningful event in the lives of both the physician and the patient; that both react to the illness, and to each other, in ways that reflect each person's values, past experiences, and manner of looking at the world. Both patient and physician have to come to terms with the patient's illness, each from his or her own often evolving perspective. Their relationship with each other is affected by their efforts to do this. In Sacks's terms—though with a reference to the physician that Sacks's statement does not include—both the patient and the physician have roles to play in an existential drama. A fully drawn narrative ought to reflect this.3 Finally, case histories tended to focus on high-profile, dramatic issues of critical care. There was very little effort to portray the mundane, everyday acts of doctoring in primary care, or the lifeworlds of patients who try to get on with their lives while dealing with chronic illness or disability. As a result, the cases ignored a number of roles that doctors and patients actually play in the course of an illness —especially a chronic illness for which many of the physician's technical roles are irrelevant, and in which the patient's perceptions and preferences are often decisive...