By Toby Bellin
In 1985 I attended my first meeting as a supportive care volunteer at St. Vincent’s. The class of 24 was a very mixed group—a pre-med student, an actress, a writer, a lawyer, two nuns, a businesswoman, among others. The speaker at this first meeting was Marc, a classmate who had offered to tell the story of his partner who had died of AIDS. Mark described a dancer and stage manager in a children’s theater. Shaken, I recognized that Mark was talking about Robert whom I had known at that theater. This was my introduction to being a volunteer in the time of AIDS.
The class later attended a series of training meetings. We learned AIDS was a virus—in fact a group of viruses—for which there was no vaccine. Symptoms varied, as did treatments. There was no cure then. The diagnosis was a death sentence that had a stigma attached to it also. People were afraid of anyone known to be infected. Victims who were gay and diagnosed were afraid to tell families. Imagine saying “Mom and dad I’m gay and I have AIDs.” Women could get AIDS and children be born with it. Our volunteers learned about grief of patients (for loss of their health), grief of families and our own grief at the loss of a patient to whom we had become attached. Friendships formed among our class volunteers,some lasting several years beyond our hospital experience.
I was asked to meet Terry, described as a homeless man who could no longer live in a boarding house in Brooklyn. He had lived at the hospital for eight months when he died February 3, 1989. I knew him about 2 1/2 months. When we first met I said “I’m a volunteer from Supportive Care. He said he didn’t need a volunteer. I said I’d like to come back another time. What would you suggest? Offhandedly he said “In about two weeks.” I returned and somehow we broke the ice. He was very ill with constant fevers, lung congestion that made breathing difficult, spasms of coughing, and painful leg swelling that restricted walking. His appetite declined and even talking took much energy. Nevertheless we connected. Pulling up a chair close to his bed he took my hand. “What’s this?” I asked. “Friendship,” he said. We held hands whether we talked or not. He talked about having been mistreated from a young age and misunderstood. He was not a blamer nor a complainer. Though sometimes he expressed contempt for hospital staff. Any impatience with me quickly passed. I brought a little radio for him to listen to music, sometimes soup or an omelette from outside. Small things. On February 2, a doctor told him he was failing. He became incontinent, his hands puffy, generally weaker. His family in New England were notified of his condition. No one came. He knew he was dying. The last time I saw him he said was not afraid because he did not know what would happen. He said he could feel spirits creeping along the sides of his bed. When I left I showed my ID at the nurses station. I told them to notify me if his condition changed during the night. No one phoned. Sleepless at home, I read a book about helping a dying person with mental exercises, an exhortation to look for the light and so forth. I finished reading. Morning had come and I lay down to sleep a little. A supportive care nurse called to say Terry had died at 4 am. Was this a coincidence or a connection? As I was reading, was I helping him in friendship until the very end? I would like to believe that’s what it was.