Memoir of an AIDS Volunteer

Notes from the underground

Like any other single, working New Yorker, my appointment book is usually filled: business meetings, social dates and family obligations leave little white space in my filofax. Nevertheless, in the past two years, another kind of appointment has found its way on to the pages. “GMHC,” it will say. Or sometimes, “AIDS talk.” In the past two years, I’ve been devoting several hours a week to work as an AIDS volunteer: stuffing fund-raising pleas into envelopes for the Gay Men’s Health Crisis, answering calls from frightened People With AIDS (PWA’s) who want to become clients of the organization, and increasingly, speaking to community groups and students about AIDS and AIDS prevention. Also, as a professional writer, I’ve devoted thousands of words and scores of pages to articles on the subject. I wouldn’t say I’m obsessed, but I am committed.

Everybody who knows me knows about this work I do; sooner or later, everybody asks me why I do it. “No,” I tell my audiences of students who almost always look perplexed to see a woman representing a group called Gay Men’s Health Crisis, “I’m not gay.” “No,” I tell the ones who screw up their courage to ask, “I don’t have AIDS, at least as far as I know.” But still the questions persist; perhaps if I had a family member with AIDS, or maybe a gay brother, they could understand. But I don’t — and they don’t.

I can’t put a finger on exactly when I decided to become involved; I kept a newspaper article about GMHC on my desk for six months before I called to sign up. I can’t explain exactly why I signed up either, except to say that when I first heard of AIDS in the early ’80’s, I knew somehow that it would become an issue in my life. In those early days, AIDS was associated exclusively with gay men, and I’d always known a lot of them. I still have a sense-memory of the chill I felt when I saw some spray-painted graffiti in my West Village neighborhood – AIDS kills, it said — back in about 1982. Sooner or later, I had a feeling, it would kill somebody I knew.

I was right, unfortunately; I have lost several friends to AIDS, but that has happened since I began working with GMHC. “You don’t know anyone who’s been diagnosed?” Kevin Madden, then the director of volunteers at GMHC asked, incredulous, as he reviewed my application. “No,” I said, unaware that he himself would soon become a friend and two years later die of AIDS. That’s the cruel irony of this kind of work: to do it, you join a community. Then you watch, helpless, as that community disintegrates around you.

And being an active volunteer throws a different light on some pre-existing relationships. Hard as it was for me to believe, some people have some pretty offensive reactions. “What are you working on?” a casual friend asked me one day. “I’m doing a piece called ‘What to Do When a Friend has AIDS,'” I replied. “That’s easy” she answered, pretending to be kidding. “Run in the opposite direction.”

Once you become involved with a cause like this, you develop new criteria for judging people. There was, for example, the first date I had with a seemingly nice optometrist who let it slip, between the appetizer and the main course, that he had closed his practice to gay patients because, he said, they usually want to be fitted for contact lenses and he was afraid of catching AIDS from their tears. I was horrified on several counts: First, no medical evidence exists to link AIDS transmission with the “bodily fluid” tears (as opposed to the “bodily fluids” blood or semen), and second, that this man dismissed, out of hand, an entire group of people — gays — although none of his patients had been diagnosed with AIDS. Needless to say, I never saw him again.

Even people I counted to be on my side didn’t always understand. “It’s good that you’re using your social conscience,” said my mother, a liberal Jewish woman who has spent the last 30 years working on behalf of the UJA, Hadassah, the Red Cross and Planned Parenthood but also, in the end, the mother of an unmarried thirtyish daughter. “But maybe you should do something where you’ll meet people.” “These are people, Mom.” I replied. “Well’,’ she countered, “you know what I mean.”

In all fairness, most of the time my family was remarkably supportive of my involvement with AIDS. My parents even entertained my friend Kevin when he vacationed in the Florida town where they live. But they had their concerns and couldn’t help voicing them. “You mean you ate there?” My mother asked when I told her about a lunch at the bedside of a sick friend. “Are you sure that’s safe?”

Of course, when asked a question like that, I’d haul out all the medical facts I’d learned at GMHC — that the virus cannot be transmitted by kitchen utensils, that it’s not airborne, that you have nothing to fear by touching or hugging a person with AIDS — but I was never so sure, so strident as I’d try to appear. Because for all that I knew about the HIV virus, for all that I believed intellectually, I sometimes lost out to an emotional fear; I’d catch myself thinking it would be safer to drink my soda from the can instead of from a glass in the cupboard or that I could wait until I got home to use the bathroom. I’d have those thoughts despite my knowledge that AIDS cannot be transmitted by saliva or urine. When you’re face-to-face with a person with AIDS, you sometimes forget what you know. Still, I never gave in to the fears — I never stopped visiting or hugging or kissing friends on the cheek — and if I sometimes “compromised” by not eating off the plate of a person with AIDS, it was a silent choice that never compromised anyone’s dignity.

By far the most frequent question I’ve been asked is “Isn’t it terribly depressing to be around all this suffering and death?” I used to answer with a shrug and, perhaps, a speech about how rewarding it was to feel that I was helping other people. But, now, after the deaths of two close friends and several good acquaintances, that response feels a little hollow. I find, lately, that it’s harder and harder to read the obituary page in The New York Times, harder and harder to hear that a friend of a friend has succumbed. While I still conduct orientations for new volunteers and talk to community groups, the very act of walking into the GMHC offices makes me sad. There are so many ghosts there.

For me, the hard work begins now. For me, the hard work is grieving.

Sara Nelson is a freelance writer living in New York.

The following prayer is used by Congregation Beit Simchat Torah in New York City during their Friday night services, toward the end of the Amidah.

O Source of Mercy and Source of Health,
Out of our distress we call upon You.
Hear us and heal us, O God.
We pray that You send the gifts of Your goodness
To those who are suffering with the dread disease of AIDS.
Provide skill to the physicians who are treating and researching this disease.
Grant those who are suffering strength for today and hope for tomorrow.
Keep them far from bitterness; let not despair overcome them.
Give them patience when the hours are heavy;
give them courage when the hurt is great.
Kavei el Adonai; chazak ve-ya’ametz libecha ve-kavei el Adonai.
(Hope in God; be strong and let your heart take courage, and hope in God.)