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  • Gifts and Obligations: The Living Donor as Storyteller
  • Paul Root Wolpe

The Illness Narrative

Each of us lives with an inner biographical narrative, the story we tell ourselves about ourselves, the story that becomes our account of who we are. It is the story we have constructed about our life and its meaning, built from memories of our past—our childhood, our parents, our friends, our experiences. We construct that story through our subjective experience and memories of our past, bringing together the disparate parts of our lives and weaving them into a coherent whole by which we make sense of ourselves.

Under the pressures of the advent of sudden illness, or in the face of chronic illness that becomes a dominant status, “individuals often feel a pressing need to re-examine and re–fashion their personal narratives in an attempt to maintain a sense of identity” (Bury, 2001, p.264). Illness forces us to re–imagine our life in the face of often sudden new circumstances. Illness narratives about chronic or lifelong illness are not necessarily about suddenly needing to recast one’s life due to new circumstances, but about the need to understand the way chronic illness positions and defines us in the web of social and institutional relationships.

The narratives in this collection might be thought of as a peculiar type of illness narrative. The people who populate these stories are not themselves sick (or at least were not when their stories began); yet they are bound up in the medical world, have had their bodies cut open and pieces removed, have had, at times, problematic recoveries and lasting physical and mental challenges. For that reason, the stories of living donors are particularly interesting in the illness narrative literature, and they raise a unique set of questions. Living donors have not discovered a sudden illness that requires re–imagining their lives, nor are they coping with a long illness that has become a thematic frame for how they conceptualize their world. The key aspect that differentiates the living donors’ narratives from the usual illness narratives is volition; the donors have chosen to enter the world of the infirm, have chosen to subject themselves to surgery and medical management, and have chosen to join their stories to someone else’s—and in so doing to become allied to, and yet never fully a part of, the illness narratives of the recipients.

Gifting and Ownership

If it is true that we tell our stories informed by the other stories of our culture, that we must fit our own stories into the narrative resources available in our particular society, then the living donors need to find a cultural frame to make sense of this strange position they find themselves in: joining the world of the sick and infirm not because of intrinsic illness but, to the contrary, because of their relative health. Almost thirty years ago, Renée Fox and Judith Swazey began their ground-breaking work The Courage to Fail (1974) with a clear [End Page 39] statement of the way in which the donor’s role is understood:

The donor who offers a part of his body for transplantation is making an inestimably precious gift. The acutely ill patient who receives the organ accepts a priceless gift. The giving and receiving of a gift of enormous value, we believe, is the most significant meaning of human organ transplantation. The extraordinary gift exchange, moreover, is not a private transaction between the donor and the recipient. Rather, it takes place within the complex network of personal relationships that extends to the families, the physicians, and all the members of the medical team who are involved in the operation. Within the network of these relations, a complex exchange occurs through which considerably more than the organ itself is transferred

(p. 5).

It is the sociological and psychological power of the idea of the gift that makes transplantation an especially evocative case. Eighteen years later, in their second book about organ transplantation, Spare Parts (1992), Fox and Swazey cite their own quote above and comment about it that “Despite all the biomedical and social changes that have ensued within and around the...