HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
PEOPLE WANT DESPERATELY to be a part of the gay community, and the gay community is so intertwined with HIV infection that they want to either be HIV-positive or believe themselves to be at risk for it. It's hard to say, "I am uninfected and I'm going live my life." You can't possibly do that, because HIV is so overwhelmingly a part of our culture. How many people do we know who walk around with a sense of pride that they're HIV-negative? That's very rare. Nobody wants to be seen that way. That has a swaggering quality that's anathema to many gay men.
Look at all the people who feel, even today, that they should have been positive because they saw their friends and lovers get sick and die. I think it's difficult to be apart from a culture, apart in many cases from a longtime lover. It's hard to grasp that a lover is now able to sit in community with friends at a coffee klatch and talk about who's on AZT and DDI, and who has a lesion and who doesn't. The HIV-negative man is totally beyond the pale of this discussion. Because he's HIV-negative, he's out of the loop. There is no Boston Living Center for HIV-negative men.
I do HIV-test counseling as part of my work. Last night I gave a young man his HIV-test results. He was negative, and he suddenly felt labeled. He felt there was a neon sign hanging in front of him flashing, "HIV-negative. HIV-negative." And he didn't like it. I didn't want to just let him out the door with an HIV-negative result, pat him on the back, and say, "Go have an ice cream cone, pal." I said, "What is this all about? What is behind this for you? You're 19 years old. You feel like you're wearing a scarlet letter that says HIV-negative." And he said, "It's so weird. I've always felt I was going to get this. I've always felt I was going to be HIV-positive, just by virtue of who I was. Now that I have this label, I don't know if I want to tell anybody."
There's an etiquette to not talking about HIV status, because then you're all on the same level. Even if you know you're negative, you might not want to come out and say you're negative because then you can no longer say, "We're all equally at risk. We're all equally infectious. And let's all play safe." That's a great strategy for safer sex, but the downside for the man who knows he's HIV-negative is that he cannot grasp and deeply incorporate that identity and move on.
There are HIV-negative men who believe themselves to be negative in their deepest gut but put out a public persona that implies, "I might be positive, or I'm at risk for being positive." That's not necessarily so, but they want to believe they are at risk because that puts them in brotherhood with other people. They don't want to be seen as not vulnerable because that would put them above it all, and they don't want to do that. They don't want to be distanced from their gay male friends.
In most discordant couples, the negative one wants to stay negative and the positive one wants the negative one to stay negative. They don't express any deep-seated need for the negative one to become like the positive one. Where I've experienced that in my counseling work, there are other unhealthy things going on.
For example, there was a couple I saw in which one person was negative, the other one positive. Their entire relationship was based on incredibly unsafe sex. The negative one was always getting fucked by the positive one. No condoms. Always with ejaculation. Sometimes even with rectal bleeding. The negative one had alcohol abuse issues going on and did not want to change his behavior. I would say, "You need to look at this. You need to deal with this, and you need to be in communication with each other about this." But they would come back and report continued unsafe sex, time after time. Eventually, in this particular scenario, the negative man did become positive.
The man had a beatific glow on his face when he found out he was positive. He had been expecting this for so long, and finally the desired outcome was achieved. What was going on for him was that he desperately wanted to keep this relationship alive, and the positive one wanted to dump him. The negative one desperately wanted to keep it alive, so he desperately wanted to continue the sexual behaviors. I think he wanted to show the positive one the extent to which he was willing to go to prove his love.
That glow on his face was something I will never forget. He really felt triumphant that he had become HIV-positive. It's frightening to sit with people who are that clear about it. It's like sitting with someone who wants to commit suicide, in many ways.
No sooner had he seroconverted than the couple continued their sexual behavior, but they continued it with condoms. They instituted condom use immediately following the seroconversion. I don't know what that means. All I can tell you is that's what happened.
There are people who think it's important to keep sex alive in the way that we knew it. It's a cultural phenomenon: the way we have sex has cultural meaning to us, and people want to keep that alive. I have known people who wanted to continue unsafe sex, not so much because they wanted to become infected, but because it was imperative to them as standard-bearers of gay culture to continue to do things they felt were integrally a part of gay culture.
One recent example comes to mind. This man went to a bathhouse, lay down on a cot with some lube, spread his legs, and four people came in and fucked him. He didn't know them, he didn't know their antibody status, and he was clear as a bell about the fact that he wasn't drinking, he wasn't on drugs. What he wanted was the experience -- the gay cultural experience -- of being in that setting and doing those things. He deeply missed that, not as somebody who had previously experienced it, but as somebody coming into a culture which that had once been a part of. He wanted not to reexperience it, but to experience it for the first time. The man was 23. He was born in 1970.
And what happened to this young man? He became HIV-infected. When he came in for HIV testing, he made an appointment to get his results with his lover, who was HIV-positive. They had a monogamous relationship which was very safe. They were set up for their appointment on a Tuesday. He called on Monday and said, "Can I come in today and get my results and then come back tomorrow and pretend I'm getting them for the first time?" I didn't have any reason to refuse him, so I said yes. He came in and found out he was positive and then had to figure out how he was going to tell his lover. Because of the safe structure of their relationship, his lover knew that he was not the one who had infected him. An incredibly complex scenario.
More often than not, people I know who have seroconverted were having unprotected receptive anal sex. Alcohol or recreational drug use was often, but not always, a part of it. It really stemmed from other things going on in their lives: being tired of safer sex, being nostalgic for unsafe sex, being angry and depressed, feeling overwhelmed by the epidemic and engaging in unsafe sex as a stress reliever. There's an irony there.
One man who I counseled had been in a relationship with a known HIV-positive partner for a long time and they had very safe sex. The negative one was younger, kind of footloose-and-fancy-free. The negative one really liked to get fucked. But the positive one was 40, established, determined to protect his lover, determined to always use condoms. And so they always did. The younger one, when he was removed from this structured relationship, fell into -- tumbled into -- unsafe sex with multiple partners. This is a man who would drink 20 cocktails in an evening. He was fucked in a nine-month period by dozens of different men. He decided to get tested, and when I gave him his results, they were positive. He sat down and said to me, "I knew it. I knew it. I knew I was going to be positive."
Another man was in a similar scenario: a structured relationship with a known HIV-positive partner. That wasn't the unsafe thing. There wasn't anything unsafe about that. Safe sex was the norm for that couple. When that relationship broke up, the negative one was a free bird, able to have sex again in the way he may have desired and long wished for and hoped to do again. He went out and did it with people of unknown status and became positive. Can you imagine? Staying safe and being committed to safe sex with an HIV-positive man for so many years, and then being removed from that situation and being at risk.
Gay men are growing older, just like everybody else, and some gay men are going to die of things like heart attacks, liver cancer, and automobile accidents. The surviving partner is at risk in the same ways, I believe, as these other men.
I personally know of one couple, for example, both of whom were in their fifties and HIV-negative. They were going to go off to California and have a wonderful retirement together when -- boom -- one of them died of a heart attack. It was a total surprise, like a doorknob coming off in your hand. The next time I saw the survivor, he crumbled in my arms, sobbing. The feelings he expressed of loss, rage, and grief were very similar to the feelings that I've heard from those who have lost partners to AIDS.
I think this man is at extraordinary risk for HIV acquisition, but I have no idea where he is right now. His phone number is disconnected. I can't find him through the mail. This is a man who had been committed to safer sex, who had seen tons of his friends and lovers die of HIV infection, and who was planning to be in this negative-negative relationship for the rest of his life. This man is out there alone in the world and I believe at very great risk. He may be dead now. I have no idea.
A young man I know whose substantially older lover died of liver cancer is adrift in a fog. It was a deeply profound father-son relationship for the two of them, and he is continuing to seek that out. He has multiple sex partners now, looking for the daddy that he lost. And he is continuing to seek that out with older men, who are probably more likely to be HIV-infected. They are not necessarily going to infect him on purpose. How do they know if they are HIV-infected? There are still people who don't get tested. They might infect him because they want to believe they are not HIV-positive.
I've seen sadness and depression and anger and frustration, coupled with nostalgia and an overwhelming sense of "I'm so exhausted by the HIV epidemic, my God, I think I'll just have unsafe sex." And that's what happens.
In 1987, somebody who I had counseled several times showed up for his HIV-test results four months late, and he had seroconverted. Every time since then when somebody is late, it's a red flag to me that they might have done something they are afraid to come in and find out about -- for two reasons, at the very least: because they don't want to find out they are positive, and because they don't want me to know. A rapport develops between me and the clients I see over time so that the way I feel about them -- the way they perceive that I feel about them -- is important to them. It makes them feel that they have let me down, that they have betrayed our work together, if they seroconvert.
One such client was a man whose very reasonable safety net was that when he went out, he went out with his friends, his cousins, and his brother. It was a gay network of friends that supported each other in not drinking too much, not going out with somebody who looked like a suspicious, shady character, however they construed that.
Well, one time he went out and he didn't have those people with him. I can't tell you how much not being with that peer group was his risk factor, more than anything else. I don't know that to be true, but when he inserted that into his tale, it rang for me as being his risk factor.
He drank a lot, probably about ten beers. It was close to Christmas, it was snowy, it was romantic. He was lonely, he met a guy, they went home. The way he tells it, the guy apparently was hung like a horse. The condom didn't fit. The condom busted. They said, "Well, let's do it without it." He had rectal bleeding. The guy came inside him and was gone the next morning. He never saw him again.
This man didn't tell me this story until 18 months after it happened. I saw him in December. He was sick not long after that, what I now believe was acute HIV infection. In April he seroconverted. He told me it must have been oral sex. He stuck to that story for more than a year. Then this story I've just told you started to spill out. Not as a new story. He just sort of reviewed it, as though he had told me many times and was just telling the tale again. I was hearing it all for the very first time.
This is a man who was deeply, deeply invested in staying HIV-negative, for his own sake, and for the sake of his mother, because his mother had already lost children to HIV infection. She knew he was HIV-negative. She supported his continued HIV negativity. They never talked about it, but she always knew when he was going for an HIV test. And when he came home after getting his results, she always asked him if he was okay. That was her code word for "Are you still HIV-negative?" And he would always say, "Yeah, Ma. Yeah, Ma, I'm okay." After he seroconverted, he went home that day, and his mother said, "Are you okay?" And he said, "Yeah, Ma, I am." And he has continued to say that to this day because he cannot bring himself to tell her.
These people are not crazy, not in the least. We are talking about nurses and priests and AIDS educators and respectable college librarians: people who have their feet on the ground and know a lot about HIV. These people are a microscopic reflection of the gay community at large. These kinds of things must be happening out there in the world to people who are not seeking HIV testing or counseling.
We have patted ourselves on the back for the incredibly decreased rates of unprotected receptive anal sex. Look at how gonorrhea has gone way down. And yet, to be completely frank with you, the pats on the back are a little too premature, when people seroconvert at their fifteenth HIV test, after not only being educated 14 times, but getting HIV-negative test results 14 times. There aren't too many people walking around with 14 HIV-negative tests under their belt. To be positive on the fifteenth means that information doesn't do enough.
I have tried to embrace people in exactly the same way in their new HIV-positive identity as I had always done in their HIV-negative identity. I have to respect people and not treat them any differently. To support them taking care of themselves and doing what they need to do to be as healthy as possible, and to not contribute to any bad feelings they have about what happened.
A recent seroconverter has pretty much come to terms with it. This is somebody who had been determined to stay HIV-negative for the rest of his life. Who knew that this man, of all the men I've worked with, would become HIV-positive? But he did. He has imbued our conversations with the same passion about life as he always did. He used to say he was always going to be HIV-negative; now he says he's going to be the longest-living HIV-positive person ever. I'm delighted that his character is unchanged.
But he does admit that down the road he might need medical care. If somebody -- a doctor, a nurse, a counselor -- asks him, "Do you know when you became HIV-infected?" and he says, "Well, I know it was in the summer of 1991," he is petrified that the response is going to be, "Well, you should have known better, pal." He is petrified that he is not going to get the same supportive, loving care that people have gotten who went before him, because they "didn't know any better." This epidemic came out of nowhere, and there were all of these "innocent victims."
I have never said to anybody, "You should have known better." I don't believe I even think that in my private moments. I hear from people the incredible weight they're carrying around, whether it's seronegative guilt, exhaustion with the epidemic, or wanting to align themselves with their seropositive friends and people who have died. I know they are carrying that weight around and possibly don't have places to go with it. This is very heavy.
When people seroconvert, I feel, "That could have happened to anybody. That could have happened to me." I could have a fight with my lover and go out and have unsafe sex with somebody else, I suppose, if I had a couple of cocktails. I don't think I would do that, but I don't see myself being so far beyond that. For these guys who seroconverted, things were going on in their lives that just melded together to make it possible for this to happen -- even the guy who lay down on the cot in the bathhouse. I can't point a finger at this person, even in my own private moments, and say, "You shouldn't have done what you did." I may express sorrow, but not condemnation.
I think my parents view me as somebody who will not get AIDS. I think they believe that because I do AIDS-related work, I won't get it, unless I stick myself with a needle, or something like that. They think that by being a health-care worker and a counselor, I effectively separate myself from the great wide world of people at risk for HIV infection.
My worry is this: For what portion of my work have I done that myself? Did I effectively remove myself from the world because the world was a dangerous place? By being on the front lines and witness to so much cumulative tragedy, was I in fact separating myself from it? Was I so separate from it that I believed it would not personally affect the integrity of my body?
If I felt that way on some level about myself and my own work, it was clearly knocked to bits by the fact that some of the recent seroconverters have been AIDS workers, people who ministered around AIDS issues as educators or priests or nurses. Those people, perhaps even more than all of the other people, were "just like me." If I were to become seropositive now, not only would it be a blow to me, my family, and my friends, but -- right or wrong -- it would be a big let-down for all of the people I have counseled over the years. I don't think this is right, but people hold me in a certain kind of esteem. People put me on a pedestal. People think, "This is somebody who is going to be the standard-bearer."
I want to stay negative anyway. I have absolutely no interest in becoming HIV-positive. I have a lover who is HIV-negative. We had a commitment ceremony in June of 1991. We have always viewed our relationship as a committed relationship that is exclusive of sex outside the relationship. If either of us ever wanted to have sex outside, it would be something we would need to talk with one another about beforehand. It's never come up. I'm not saying it won't, but it hasn't. He says he hasn't had sex with anybody outside of our relationship, and I believe him. I haven't had sex with anybody outside of our relationship, and he believes me. Is it always going to be this way? I don't know.
I have faith in the monogamy of gay men. Not of every gay man, but of some gay men in couples. I have seen that happen. The HIV-negative man, even one in a couple with another HIV-negative man, is not permitted to rise above the much-fabled promiscuity of gay male culture. That much-fabled promiscuity is culturally valuable: a lot of people still talk about it, a lot of people miss it, a lot of people hold nostalgia for it. What we're doing is stereotyping. We're saying that gay men are promiscuous. A gay man in a couple will of course be promiscuous or his lover will of course be promiscuous. Somebody will step out on the relationship, and because of that you must always use latex when you are having sex with each other.
I think it's homophobic to presume that gay men are going to step out of their relationships. That is unfair to gay men. To assume that a heterosexual married couple -- where both people test negative -- should not have to use condoms if the woman has some other sort of birth control, and not assume that two gay men could do the exact same thing, is homophobic. There are no other ways to put it. The assumption is that heterosexuals are going to be more monogamous than we are.
Two HIV-negative gay men who continue to use condoms for anal sex or oral sex are continuing to align themselves with a beleaguered community: "If the gay community has to do this, then I have to do this too." That may have merit in certain ways. People who have gone beyond that have a type of private strength to rise up and say, "I see what's necessary in other people's situations. But it's not necessary in mine." It may sound like denial, but it's completely different. That private strength only wells up when somebody has looked very carefully at his situation and said, "You. Me. This is what we're going to do. This is the commitment that we make." It comes from communication with one another, and it's based on trust.
When two people are negative and they ask whether they should continue to use condoms, all I can do is tell them that you can never know for sure if somebody is going to have sex outside the relationship: "That's where communication is a lot more important than latex. You need to decide for yourselves." Privately I want to say, "Go for it." I can't do that in my position at the agency I work for, and I don't. I've tried to insert this topic into the agenda when the agency talks about safer sex. I've tried to ask, "What if two people are negative?" There's always somebody who will say, "Yeah, well, you can never tell." My coworkers rise up against me and say, "We're not going to discuss that." People don't want to defy the standard line.
I want to see the agency, and safe sex education in general, grow to a point where we can accept that there are HIV-negative men in our midst who are not at risk for HIV infection. That's just the way it is.
I think we are all survivors. We're survivors of friends and lovers. We're survivors of what might have been. We're survivors of a kind of holocaust, although I don't really want to use that word because I respect the Holocaust as an incredibly violent and horrifying span of events.
Working as an HIV counselor, I have been privy to the deaths of nearly a hundred people. Every one of those people was special in his own way. Every one of them was delightful, even the pistols. I'm fortunate to have been witness to their stories. They have brought profound things to the table, and I consider myself lucky to have witnessed that. I remember all of those people, and I don't want to forget them.
Do we have a responsibility to tell the story? Do we have a responsibility to keep in our hearts the stories of people who have died? Do we have a responsibility to teach the world what we've witnessed? I don't know if we have a responsibility. That's what I'm going to do, for the rest of my life. I want to be a historian of, a documentor of, a tale-teller of this whole process. To continue to put in people's consciousness that this is something that happened. I want them to know what this was like. Because a whole helluva lot of people who I think were pretty damn eloquent about the experience of this epidemic are dead now. And if they can't talk about it anymore, and if they can't teach, then I want to. I want to keep their hard work and goodwill alive to the extent that I am able. I don't think it's the responsibility of every HIV-negative gay man.
I think there may be an unfortunate assumption that the gay male HIV-negative survivor is shut up in a cell somewhere, wrapped in Saran Wrap, friendless and alone, or covered with warts like a toad and nobody wanted to date him anyway. There's not a lot of sexy glamour to being HIV-negative. I think the world looks at us as "you little librarians, under mushrooms there." I want gay life to be more than that.
I want people to stay safe so they can be alive and healthy, and so they can further the very special contributions of gay men on the planet, particularly since we've lost so much. I hope that a lot of HIV-negative gay men will want to, so gay male culture will be more than just cumulative tragedy, so we will be able to thrive in ways that teach the world that we are made up of more stuff than just surviving HIV.
It hasn't just been ordinary gay men who have died, although it has been ordinary gay men. It has been many extraordinary gay men who have died as well. We have lost a great deal: a lot of momentum, a lot of art, and music, and brilliant thought, and wittiness. And those of us who remember what has faded, those of us who remember that brilliance -- oh, I will say it: We do have a responsibility to keep it alive. I hope a lot of other people feel that way.
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Conclusion · Appendix A B C · Notes · Contributors