Healing the Damaged Self: Identity, Intimacy, and Meaning in the Lives of the Chronically Ill

HEALING THE DAMAGED SELF: IDENTITY, INTIMACY, AND MEANING IN THE LIVES OF THE CHRONICALLY ILL DAVID BARNARD* Why has it to be so very hard yet so very wonderful, he pondered.Christopher Nolan [1] It has become quite common for discussions of chronic illness to include observations such as the following: chronic illness requires an emphasis on "care rather than cure"; professionals must be "healers rather than technicians"; healing entails attention to the "psychosocial aspects" of chronic illness, notjust the biomedical aspects. But what do these generalities and catchphrases really mean? The answer to this question must emerge from the experiences of the chronically ill and disabled themselves. The personal experience of chronic illness is richer and more complex than typically emerges from scientific research. Yet it is only in response to this richness and complexity that we can meaningfully address the nature of healing. (The category of chronic illness covers a wide variety of conditions and degrees of impairment. For the purposes of this essay I will use the general definition of chronic illness adopted by a task force formed by the Hastings Center, according to which chronic illnesses are "organically based, severe chronic conditions that lead to significant loss of function or disability and generally have a slowly but progressively debilitating course" [2].) In this essay, I intend to suggest understandings of healing that are faithful to two recent personal accounts. One is Robert F. Murphy's The Body Silent, an account of his 10-year experience of progressive paralysis caused by an incurable but slowly growing spinal tumor [3]. Murphy, now quadriplegic, is an anthropologist. In addition to describing his own ?Department of Humanities, Milton S. Hershey Medical Center, Pennsylvania State University College of Medicine, P.O. Box 850, Hershey, Pennsylvania 17033.© 1990 by The University of Chicago. AU rights reserved. 003 1 -5982/90/3304-0697$0 1 .00 Perspectives in Biology and Medicine, 33, 4 ¦ Summer 1990 \ 535 experiences, he analyzes the effect of disability on people's place in society and in their intimate relationships. The other is Christopher Nolan's Under the Eye of the Clock, his fictionalized autobiography [I]. Born in 1965, Nolan has been profoundly affected since birth by cerebral palsy. Unable to speak or stand, and given up by many as hopelessly damaged and probably retarded, he taught himself to write with a typing stick attached to his forehead. With it he learned to pick out letters on a typewriter while his mother supported his head in her hands.1 A Theoretical Prelude: Healing and the Self To speak of healing is to enter the realm of inner experience: identity and self-esteem, love and loss, spirituality and the need for meaning. In addition to the biophysical disturbances we call "disease," whose elimination we call "cure," there is the influence of disease on the life experience of the patient. More than a biophysical event, "illness" (as opposed to disease) is a biographical event; it takes place in the context of an individual 's pursuit of a meaningful life [5,6]. Identity, intimacy, and meaning are significant aspects of this pursuit and important domains in which the vicissitudes of illness and healing unfold. These dimensions of healing correspond to stages of the life cycle characterized by Erik Erikson [7]. They recall the stages in Erikson's theory wherein the principal developmental tasks center around identity , intimacy, generativity, and ego integrity. Each of these is an area of potential growth and conflict that must be mastered in the course of individual maturation. (We are focusing here only on the last four ofthe eight stages in Erikson's complete theory. For a discussion of chronic illness that mentions Erikson's earlier stages, see [8].) Briefly, in Erikson's terms, identity is the felt sameness and continuity of the self. It is not a once-and-for-all achievement but reflects a continuous integration of one's own values and talents with affirmations or rejections from significant others and the possibilities and constraints of one's historical and cultural situation. Intimacy is the capacity for close and concrete relationships. It entails the courage to lower barriers around the self in friendship, comradeship, and love...