Altered states: what I've learned about death & disability.

More than a year after the death of Terri Schiavo, discussions about her case remain highly polarized. What principles should guide decisions about people who can no longer speak for themselves? Who should make those decisions, and what do various religious traditions say about such cases? The debates may be provocative, frustrating, or both, but they usually take place on the level of theory, principle, and ideology. As a result, they often neglect the lived experience of persons with disabilities and their caregivers. As someone who has cared for a severely disabled person for nearly seventeen years, I can testify that the reality is unromantic, unpleasant, and often unrewarding. Yet I am unwilling to give it up.

In June I marked my fiftieth wedding anniversary. It was not a celebration. For the past several years I have been living with a man who is not my husband. No disapproving frowns, please. This man and I don't share the same bedroom. He has his own room, complete with hospital bed and all the trappings of a mini-clinic. This man-who-is-not-my-husband and I do share many things: children, grandchildren, a past--although not much of a future. He is my husband, although I see only glimpses of the man I married a half-century ago. It is not by chance, I think, that marriage vows place "in sickness" before "in health," because illness can undermine even longstanding, happy relationships. I do not live with this man-who-is-and-is-not-my husband because of some words I said when I was twenty-one, or because the law says I am responsible for his care, or because my religion says it is my duty. I live with him because after all these years I do not know how to live without him.

What happened to him happened to me as well. We were both in a terrible automobile accident. I was not injured, but he suffered a near-fatal brain-stem injury. He was in a coma for four months, and had to undergo painful therapy for years. As a result of medical error, his right forearm had to be amputated. He is essentially quadriplegic. Without medication he is in a state of perpetual rage, and even with it, he sometimes becomes disoriented and unreachable. With each medical crisis, we adjust to the "new normal," which is invariably a decline.

In previous generations, people with disabilities were stigmatized, and often hidden away from the outside world. Thanks to advocates for the disabled, that has changed. Inclusion rather than exclusion is the goal. This is a good and just approach, but sometimes in our enthusiasm for accommodating people with disabilities, we can overlook the real challenges these conditions impose. The mantra among advocates for the disabled is "we are all dependent and only temporarily able-bodied." True enough, but how helpful is this notion if you are, say, dependent on a mechanical respirator, not just on the ties that bind a family or a neighborhood? Or, more prosaically, if you are kept waiting on a rainy street corner for a wheelchair-accessible van while the "temporarily able-bodied" jump in cabs?

Accommodations notwithstanding, major disabilities are inherently limiting, in different ways for different people. This is particularly true for people who suffer from cognitive disorders. In Rescuing Jeffrey, the story of his seventeen-year-old son's devastating spinal-cord injury, Richard Galli writes: "'Jeffrey,' I said, 'you are not your legs. Jeffrey is up here.' I tapped his head. 'Jeffrey is up here, and that means you are still here, all of you.'" Would he have been able to say that if Jeffrey had suffered a traumatic brain injury? If Jeffrey were in a coma? Or, like Terri Schiavo, in a persistent vegetative state?

Ethicists have suggested that victims of brain injuries must deal with a "drastically altered" sense of self. I cannot say with certainty how my husband perceives himself. As long as he is comfortable, pain-free, and taken care of, he seems to accept his limited life. He even enjoys some of it, like visits from his grandchildren, football on television, and frozen yogurt. But at some level he hates it. He screams and howls in his sleep, and sometimes when he is awake as well. This once sociable, outgoing man now has only a few people in his life--me, our children and grandchildren, the kind and patient home-care aides who take care of him while I work, and underemployed actors I pay to read to him every afternoon.

Yet my husband definitely has a "self," as drastically altered as it is. As I understand it, to have a "self," an "identity," one must be able to perceive one's existence as separate from other people, from sources of pleasure and pain, from the wind and the rain, from the universe. One must be conscious of one's body and mind, however impaired. When my husband was in a coma, he had no "self" in this sense, and afterwards, no memory of the accident, or any of its consequences. I helped him construct a new "self," gave him a narrative of the events that he could integrate into his new identity. But it was a selected narrative--my version of his story--that he now accepts as his own.

I can speak more confidently of my own "drastically altered self." Novelist and essayist Joan Didion calls the year after her husband John Gregory Dunne's sudden death "the year of magical thinking." While rationally she understood that Dunne was dead, at some level this was so unacceptable that she could not bring herself to get rid of his shoes because when he came back he would need them. If magical thinking is common after a loved one's death, how much more powerful it is when the person is not dead but in a coma or persistent vegetative state. How comforting it is to believe that the magic of a kiss, a favorite song, a new drug, a new procedure will restore this precious person to us.

For many years I believed that I could bring back the person I loved by sheer persistence and will. I tried various medical, psychological, and spiritual remedies. My husband was one of the first people in New York to be injected with Botox when it was an experimental drug, not to smooth his wrinkles but to try to release some of the tightness in his legs that was inhibiting physical therapy. A nurse performed "therapeutic touch"--a kind of waving of hands over his body that was supposed to release negative energy. Prayers--many prayers of different religions--were said for him.

Yet all that magical thinking failed, and now I live with the man-who-is-and-is-not-my-husband. The person-who-was-me rarely spoke in meetings, avoided confrontation, and trusted doctors. This person-who-is-now-me rages--politely of course--at a health-care system that saved her husband's life but then abandoned him, at politicians who give bouquets to caregivers and then cut services, and at people who express surprise that "she is still working" (don't they know that insurance doesn't cover "custodial" care?). To all these people I say: Come, be my drastically altered self for a week, including being the night nurse (who never has a full night's sleep), and then we'll talk.

But this person-who-is-now-me is also a better writer, a less fearful speaker, a more determined advocate for her husband, if not for herself. She knows how to reattach a motor under a hospital bed. She knows that the "charge nurse" is the go- to person in the ER. She is not afraid to die. She is sometimes, however, afraid to keep on living.

Kristi Kirschner, a rehabilitation physician, recently wrote an article about the dilemmas facing people who suffer debilitating injuries. She notes that while some people initially want to die, most patients ultimately adjust to their condition. She writes about Jeffrey Galli, the young man with a spinal-cord injury, and then allows Jeffrey to respond to her analysis. Now in his early twenties, Jeffrey has a pragmatic view of life. Kirschner writes: "There are other experiences that will be available to Jeffrey because of his injury. He will live life at a slower pace." To this Jeffrey replies: "This was forced on me, it did not become 'available.' I am unable to refuse it." Another benefit of his new condition, Kirschner says, is that "he will learn about interdependency." Jeffrey: "Not learn about, but again, forced to be dependent. And it's not very 'inter.'" Says Kirschner: "Jeffrey feels a strong sense of self-determination--when it comes to his life, he is the 'final authority.'" This Jeffrey does not dispute.

My husband also wants to be the final authority on his life, which includes his death. As confused as he is about some things, he has been very clear and consistent about his wishes about death. He has even planned his own funeral. Advance directives and health-care proxies may be flawed, but they are all we have to turn to in the face of the medical-care system that always seems to have one more test, one more procedure, all designed to delay the inevitable.

As for me, appropriately enough in his centenary year, I turn to Samuel Beckett who wrote in The Unnameable: "I can't go on. I'll go on."

Carol Levine, former editor of the Hastings Center Report, directs the Families and Health Care Project at the United Hospital Fund in New York City. This article is based on a presentation at "Reflections on the End of Life: Schiavo Plus One," sponsored by the Fordham Center on Religion and Culture last April.