Writing Illness and Affirmation

My formula for greatness in a human being is amor fati: that one wants nothing to be different, not forward, not backward, not in all eternity. Not merely to bear what is necessary, still less conceal it—all idealism is mendaciousness in the face of what is necessary—but love it.

—Friedrich Nietzsche

In her widely circulated book On Death and Dying, Elisabeth Kübler-Ross, M.D., addresses herself to a changed historical context for work in medicine. In societies with increasingly effective medical care, she argues, doctors and nurses find themselves working with patients whose health problems range from imperceptible yet terminal sicknesses to psychosomatic ailments. Today, especially, it is easy to see the reality of her description of this situation: forms of terminal cancer can be detected earlier and earlier in a patient's life, rendering the disconcerting reality of a terminal illness with few or no symptoms. Equally strange for doctors and patients today are forms of environmental illness like chronic fatigue syndrome, a condition suffered by many but still disputed by doctors and researchers. To this situation of medical risk, personal suffering, and therapeutic care, Kübler-Ross prescribes a communicative engagement with the dying. This engagement, she argues, not only teaches doctors about death and dying, but it also provides respite for those who must experience these events.

The problem of communicating with the dying, the main focus of Kübler-Ross's book, is nevertheless eclipsed by the other, more notable aspect of On Death and Dying. For out of this book emerged the now very popular understanding of the stages of death, the normal sequence of an individual's emotional reconciliation to dying: the processes of denial and isolation, anger, bargaining, depression—the whole series of intrapsychic processes leading up to a final acceptance of death and dying. Now we live amongst a whole panoply of staged progresses towards the acceptance of trauma: trauma associated not only with death and dying but also with substance abuse, catastrophe, and forms of violence. It is perhaps worth recalling, however, that the most famous of these stage models, the five stages of death, emerged out of Kübler-Ross's attempt to learn what the dying can teach the living about communication.

In what follows, I assume that writing about illness is another, more popular form of Kübler-Ross's descriptive and communicative project. To write pathography, as Anne Hunsaker Hawkins calls narratives of illness and dying in her survey of these texts, Reconstructing Illness: Studies in Pathography, is to engage with what sickness and dying teach about life and writing. As might be guessed, most pathographies orbit familiar centers of gravity: agency for the dying, reconciliation for the living, the whole leaden project of acceptance. Even so, pathography is not always and everywhere engaged in such projects. Pathography, as Hawkins demonstrates, is a highly variable project. Literary pathography is quite different from popular pathography, and texts within these categories differ with respect to the purpose of their writing. Pathography is conceived as a communicative engagement with sickness and dying, with the sick and the dying, but is hardly unified in its aims or its functions. It is a form of writing that not just potentially but actually admits a diversity of purposes and produces a variety of effects.

It is my purpose here to propose a typology for pathographies. Although pathography as a genre of writing takes a bewildering variety of forms, these writings can be grouped according to their effects. I divide pathography into three types, according to the kind of response they offer to sickness and dying, to the sick and the dying. First, I treat pathography as a process of passive acceptance, the bearing of a burden proposed by the necessities of illness and death. Next, I characterize pathographies that approach the writing of illness or dying as a process of active acceptance. This type of pathography uses writing about illness and dying as a process for the...