Altered States


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...

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About the Author

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.