HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
I was 23 years old when I told my father I might not live another five years. We were seated in armchairs 15 feet apart in my parents' formal living room. I had just returned from a year traveling in Europe after graduating from college in 1985. My Grand Tour was supposed to have opened my eyes to the limitless horizons of a young man fresh out of college. Instead, as I discussed career plans with my father, I spoke of the difficulty of planning a future when the presence of AIDS left me uncertain how long I might live. I had not yet taken an HIV test.
Across the room my father sat baffled and fearful. Why was I afraid I wouldn't live another five years? Had I done something unsafe? Was I infected with the AIDS virus? I told him that I had little reason to think I was infected, but that since I did not know, I had to assume I might be. One consequence of this assumption was an inability to plan for the future. Years of pretending or assuming I might be infected had taken their toll. It became clear to us both at that moment how profoundly AIDS had affected me. A son in his early twenties was speaking like a man in his eighties.
Before HIV testing existed, the fear of already being infected kept many gay men like me occupied with the present rather than the future. Now that HIV testing exists, the HIV-negative are offered some solace in learning that they are uninfected, but the possibility of becoming infected in the future looms large and sometimes seems inevitable. Envisioning the future is something that should occupy HIV-negative men but often does not.
Contemplating a future in which many of our friends and lovers will be gone -- a "fewtopia" -- is a bleak prospect. David, 35, who in chapter 9 compared being HIV-negative to being in a spinning aircraft, used another image to express his despair when thinking about the future:
I want to use the analogy of being in the eye of a hurricane, walking towards it. I can see the violence of the storm, still increasing, and wonder what will be left of the fields out there, of the towns, of the friends. Will the hurricane leave any seeds in the fields after it tears out the plants? Will it leave pieces of wood that we can rebuild with? Will it leave any friends, or will even the places they are buried be hidden?
I cannot answer what being gay in those future times will be like, but I can answer what it is like to be gay today: it is to see the shadows of death color everything one loves, to take a last loving glance at the bars and the streets every time one is there, and toast to the friends and the neighborhoods, before the storm descends in earnest.
This kind of grim thinking is sometimes shared by the HIV-positive, who in perverse moments voice thanks that they will probably not live to see such a diminished future.In an essay about the psychological toll of AIDS on uninfected gay and bisexual men, Walt Odets quotes a 23-year-old HIV-positive gay man: "I'm sometimes glad to think that in ten years I'll be dead. By then the only gay people left will be those whose lives were ruined by watching the rest of us die."
Feeling that life is not worth living and that there is no future worth looking forward to is natural when one has been widowed. Such feelings pass with time, when mourning has done its work. What HIV-negative gay men face now, however, is a kind of continuous and unremitting grief. Not content with one sweep through us -- causing one great round of loss -- HIV seems intent on plaguing us without end, and its cussedness in foiling our attempts to fight it is daunting. We see people dying now and more people becoming infected. We call it the "second wave" or "third wave" of infection, but in the end all it points to is more loss and more grief.
I am not surprised that some men question whether remaining uninfected is important. Having lost much and facing future losses, who is to be so presumptuous as to say that "life is really worth living after all"? Indeed, there is something about the consistency of life in a plague that makes a future that is livable and desirable seem distant indeed.
Envisioning a future is particularly difficult for people living with partners who are HIV-infected. Cathy, 27, a social-work graduate student whose partner Louie has AIDS, told me that she focuses on living in the present:
Louie's in A.A., so he's got a mindset of "one day at a time," which I have found very difficult to adjust to. He used to ride a motorcycle across country saying, "We'll stop where we stop." He was always like that. In his mind there's a way to think about the future without planning. I'm learning a little. I still don't quite get it.
Louie will say things like, "I'm going to be there to see you graduate," which is at least three years away. I don't even think about my graduation. It's too far. I don't keep the appointment book that I used to. It's more important for me to stay home and watch TV with Louie at night than to go to a lecture on HIV vaccines, which a year ago I would have gone to. My priorities are different. I try not to plan things too far in advance.
Cathy thinks in terms of the rest of Louie's life as opposed to the rest of her life. "What am I going to do for the rest of my life?" she mused. "I have no concept. What am I going to do for the rest of his life? That's easier. I know what I'm going to do. I want to be with him."
Some men told me their difficulty in looking toward the future came from not wanting to celebrate life, as if doing so would somehow dishonor those who have died or offend the HIV-positive who are faced with life-threatening illness.
Randy, a 31-year-old social worker, talked with me about his decision to become a parent, something that had been a lifelong goal of his. After months of discussion with his partner and a woman interested in coparenting, Randy decided to become a father. He was expecting a child when I interviewed him:
I think the most interesting thing to say about parenting in the age of AIDS is that it's something I've wanted to be really quiet about. I feel social awkwardness about it, especially around HIV-positive people for whom becoming a biological parent is not an option.
It came up last night after I went to the movies. On the way out, I fell in stride with two people I know who are HIV-infected. Then behind us came a friend whose lover is positive. It was beginning to be overwhelming for me, at the end of a long day when I wanted a night away.
When we got to the end of the sidewalk where we were going to part, one of the three men said, "Oh, so congratulations on your baby!" One of the other two knew, but I had told him not to tell people. He said, "Oh, well, I guess the secret's out." I said, "Yeah." The third guy, who was pretty sick, had a real strong reaction to it. His explicit reaction was not about AIDS at all, but the tone was bitter: "Well, I hope you know the people really well." Would the reaction have been so strong were he not facing the end of his life right now?
If I were a straight man, I think his reaction might have been, "Big fucking deal. You're having a baby. That's so unconnected to my life." I've found talking about becoming a father much more difficult as a gay man, partly because it's predicated on "negative" sperm.
I feel also that it's about wanting to have a private celebration rather than a public one. I don't want to celebrate during the age of AIDS. That's what it's really about. That is the profound thing here. It's really a hard time to do that, for me.
One of the greatest challenges facing HIV-negative gay men these days is to find a way to celebrate their futures and build lives worth living, without feeling that by doing so they are abandoning the HIV-positive. To embrace life is not to dishonor those who have died or give affront to those who are ill.
A negative HIV test can be an opportunity to reframe one's attitudes toward the future. Edward, 39, described how his reluctance to plan for the future changed when he tested negative:
It took a fair amount of time for me to figure out that I had not been planning ahead, that I had taken my sights of the future and brought them close in, to within two or three years, and was not thinking about anything further than that.
All of a sudden the realization came down on me that I had a life to live. It was like a fog lifted: "You have to start thinking about getting old. That could possibly happen." Retirement issues used to be something that would just go right over my head, because who was thinking about retirement? I wasn't able to plan until I realized that there was this enormous possibility opening up.
Austin, 36, told me that he had gotten tested partly to learn whether he should go ahead with some of his lifelong plans. "If the test was negative," he said, "I was going to proceed with the things I had been dreaming of for a long time, liking buying some land. If I was positive, I wouldn't go through with that. I wouldn't be around long enough to get through all the hassles." When he tested negative, he found that he could fulfill some of his dreams, but at a cost to a friendship:
I experienced a transition in my relationship with a friend who was diagnosed with AIDS. The transition came when I realized that my life was going to go on and he was going to die. I was in the process of buying some land, and I brought it up in a conversation with him and his parents. We were talking in a restaurant about what I was going to do with this land in Maine, how I was going to build a cabin and all this stuff.
After that, when we were alone, I said to him, "I just need to know how you feel about that." He was very sick. He said, "I really can't talk about it." And I realized that there were some things that I couldn't talk about with him, because I was planning for a future and he was planning for how long he was going to live, and it wasn't going to be much longer.
Although Austin was sad that he could not share some of his dreams about the future with his friend, he has not abandoned dreaming. "I am still able to have my goals and my dreams, and talk about them with different people," he said. "Some people can talk about it and some people can't. It depends on their perspective. I have a friend who is very sick right now but is interested in what I'm doing with my house and wants to come visit."
Looking at the narrative chapters in this book, one reader responded by asking me, "Am I supposed to be proud of these people because they can talk about their problems?" He implied that many of them had not been very successful in resolving their anxieties and issues about being HIV-negative.
When I hear people call for "resolution" of difficult issues, I remember what I have learned by reading about trauma and chronic illness, and I switch the conversation to how people can "accommodate" their anxieties. Accommodation, not resolution, seems to me a more fruitful avenue. I don't expect anything more than that.
What does it mean to accommodate HIV? For me, accommodating the virus means accepting the epidemic as a lifelong event in my life. Accommodating the virus means not nurturing unrealistic hopes of medical advances. Accommodating the virus means acknowledging that seroconversion among gay men will continue and is a possibility in my own life. Accommodating the virus means recasting my concept of life expectancy, perhaps even redefining -- I am 32 now -- what it means to be "middle-aged."
When I think about the future of gay men, I am optimistic about our ability to face the challenge that AIDS poses. We can find ways to accommodate the virus without actually harboring it in our own bodies. We can find ways to incorporate our losses without letting them destroy us. We can allow ourselves to experience the despair that AIDS engenders in us without letting that despair rule us. And perhaps we can even take our uncertainty about the future and turn it to our advantage.
In 1986 Susan Sontag published a story in the New Yorker called "The Way We Live Now." In this fictional account, Sontag presents a near-complete alphabet of friends and lovers -- from Aileen to Zack -- who recount the ways in which they have been profoundly changed by the unnamed life-threatening illness of an unnamed central character. When I read the story, I imagined the emphasis in the title resting on the penultimate word -- "The Way We Live Now" -- because the story speaks to me about how our lives have been affected by AIDS, even when we are not ourselves infected with HIV.
Meditating on the uncertainty of the future has made me wonder if another reading of Sontag's title is possible, one which puts the emphasis on the last word: "The Way We Live Now." AIDS forces us to confront our mortality, to recognize the uncertainty of the future, and to live in the present. AIDS has changed the way we live the now.
"AIDS has challenged me to look at things I was taking for granted," said Todd, a 26-year-old pianist. "It has made me realize I'm not immortal. I may not have the rest of my life to accomplish the things I've set out to do. Indeed, what does 'the rest of my life' mean? AIDS has made me focus on the fact that all we really have is right now." This understanding has fueled Todd's creative output as a composer. "I used to be one of those people who said, 'When I learn enough counterpoint, I'll write an orchestral piece,'" he told me. "That's bullshit. I'm writing an orchestral piece now."
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Conclusion · Appendix A B C · Notes · Contributors