2016-06-30
This article was excerpted with permission from "At the Will of the Body: Reflections on Illness," published by Houghton Mifflin Company.

On the day the ultrasound tests showed lymphadenopathy, I made it home in pretty good control of myself. I was alone because my mother-in-law was beginning a new round of chemotherapy that day. Cathy and I had decided, perhaps in a moment of mutual denial of what was happening to me, that she should be with her mother. When I walked back into our house, she was still out, and what had happened crashed down on me. All I could see were faces I would never grow old with--my daughter from my first marriage, Cathie, my parents. I believed I was going to die, much sooner than later. The pain of my death was in losing my future with those others. My reasons for living have never been clearer.

Loss of the future is complemented by loss of the past. I felt this loss most keenly one night shortly before the surgery to remove the tumorous testicle. The coming operation did not distress me; I had had too much pain to feel any great attachment to that part of my body. I was told I would have no impairment of sexual functioning from the loss of one testicle. If I had been in my late teens, as some testicular cancer patients are, the operation would have had a different meaning. At my age I was more interested in being able to pull on a pair of pants without wincing.

I did not dread what I would become, but I needed to mourn the end of what I had been.

I did feel I was losing my body's continuity with its youth. That night I knew that after surgery I would never be the same. By then I was aware that chemotherapy could effectively shrink the tumors along my back. Even so, I would not be the same. Surgery and chemotherapy would irrevocably break my body's continuity with its past. I did not dread what I would become, but I needed to mourn the end of what I had been. It was like saying goodbye to a place I had lived in and loved. I had tried to take care of my body, and it had treated me well enough, but now treatments I did not yet understand would change it into something else.

When you say goodbye to your body, as I was doing that night, you say goodbye to how you have lived. An old aphorism says that after a certain age every man is responsible for his own face. Each person records the history of his life on his body. My history had its share of regrets, but I mourned its passing. After surgery and chemotherapy rearranged me, I would live differently. This difference is made up of gains as much as losses, but at that moment the gains were unknowable and the losses were before me in the mirror.

Other losses went beyond the body. Cathie and I had always hoped that if the worst happened, friends and relatives would respond with care and involvement. Then the worst did happen, and we no longer expected what others would do, we knew. Some came through; others disappeared. We now find it hard to resume relationships with those who could not acknowledge the illness that was happening, not just to me but to us. Those relationships were a loss.

Together Cathie and I lost an innocence about the normal expectations of life. At one time it seemed normal to expect to work and accomplish certain things, to have children and watch them grow, to share experiences with others, to grow old together. Now we realize that these events may or may not happen. Life is contingent. We are no longer sure what it is normal to expect. At a later time this loss of innocent expectation can be seen as a gain from illness, but at first it feels like a loss.

I want to emphasize mourning as affirmation. To mourn what has passed, either through illness or death, affirms the life that has been led.

These losses of future and past, of place and innocence, whether they are ours together or mine alone, must all be mourned. The ill person's losses vary according to one's life and illness. We should never question what a person chooses to mourn. One person's losses may seem eccentric to another, but the loss is real enough, and that reality deserves to be honored.

Medical staff, family, and friends all want the ill person or caregiver to accomodate to loss, whether it is caused by illness or by death, as quickly as possible. Society pressures us to return to the healthy mainstream, minimizing and forgetting our losses.

Professionals talk too much about adjustment. I want to emphasize mourning as affirmation. To mourn what has passed, either through illness or death, affirms the life that has been led. To adjust too rapidly is to treat the loss as simply an incident from which one can bounce back; it devalues whom or what has been lost. When an ill person loses the body in which she has lived, or when a caregiver suffers the death of the person he has cared for, the loss must be mourned fully and in its own time. Only through that mourning can we find life on the other side of loss.

Illness can teach that every part of life is worth experiencing, even the losses. To grieve well is to value what you have lost. When you value even the feeling of loss, you value life itself, and you begin to live again.

This excerpt from "At the Will of the Body." Copyright 1991 by Arthur W. Frank and Catherine E. Foote. Reprinted by permission of Houghton Mifflin Company. All rights reserved. Arthur Frank is also the author of "The Wounded Storyteller: Body, Illness, and Ethics" (1997).

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