HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
I HAVE ONE OF THOSE Longtime Companion stories. I was 22 in 1981 and I remember being with a former lover, having a party in his backyard, when a bunch of friends from Los Angeles brought over the first Advocate that had an article about the "gay cancer" in it. We had a lengthy discussion about it. Then we smoked some pot and forgot about it. It's ominous: that man has since died, and his partner of 20 years has also died. I was freaked out when I found out he had died of AIDS-related complications. We had had very risky sex. He was the only person other than my present lover that I've had anal intercourse with.
I came down with a case of hepatitis B in 1983 and was convinced that it was HIV-related. I was doing street outreach work and was involved with some people's body fluids, so I may have gotten it that way. Also, I did have a very minor casual sexual encounter; I don't think I could have gotten hepatitis from that. Whatever the case, it was worrisome for me to get sick at that point. There was an early connection made to hepatitis B: people were saying AIDS seemed to be transmitted the same way. It was troublesome not knowing my HIV status. It's hard to say whether I believed I was infected. In some ways I believed I was infected. In other ways I was afraid of becoming infected.
I was suffering from acute anxiety attacks for about a year before I got tested. It was a fear of danger lurking around the next corner. Not a paranoia, just that I felt my life was constantly in danger. First, it manifested itself in fear of dropping dead of this disease. I didn't understand how long it took or what happened. I was convinced I would wake up one day and have purple spots all over my body or have pneumonia and then be dead in a few days.
The anxiety became almost debilitating as time went on. I would break out in sweats and not be able to sleep at night, or I would wake up very early and begin worrying about it all day. I was one of the "worried well," although I didn't know I was well. I was convinced I wasn't well.
The anxiety attacks were my immediate prompt to get tested. My lover, Ben, felt they were paralyzing me. He said, "Don't you think maybe we should be tested, just to put it to an end?" Also, I was beginning doctoral work, and I decided I didn't want to do the doctoral work if I tested positive. I didn't want to spend my time that way. That was the other piece.
My lover and I were tested together in the winter of 1987. We went on vacation to California for a couple of weeks to visit my sister and take our minds off things. The vacation was fine. Even though I didn't have the results yet, I felt a great sense of peace just having been tested, just having had the blood drawn. Taking control of the situation brought a certain amount of peace. Part of me thought, "Now somebody knows what my HIV status is. Even if I'm not ready for it, somebody knows." There was some kind of control over the virus in that.
When I was sitting waiting for the results I was a wreck. I didn't know whether I was actually going to be able to hear the results. I didn't know if I could take it. Ben and I went together. We went up to the room, and the counselor started going through the papers. She checked the numbers once, and checked the numbers twice, and checked the numbers a third time. I thought I was going to pass out. She said, "I'm happy to say that you're both negative. I want to be sure you understand what that means." After that, I just heard her talking at the mouth. She gave us a long talk about how we should be practicing safer sex, even as lovers, which we didn't really take to heart.
I remember both of us commenting that it was like an enormous weight taken off of us. I realized at that point how much pressure not knowing my HIV status had put on me. It was only after the test that I began to realize that. My perspective changed, the anxiety decreased, I was less depressed. I think I was easier to live with afterwards.
It was still in the early days of testing. Nobody knew what the window period was. We had heard talk about false negatives. I really believed that some day I might seroconvert. I thought, "I'm going to be in that small percentage of people who may not seroconvert for years and years." I worried about that. Or I worried that I would never develop antibodies and that my partner would develop antibodies, so we would be discordant. Even though we were both really positive, I might not test positive.
My anxiety started to creep up again, and I was tested a second time in the fall of 1990. Actually, what happened was that my lover had gone to the doctor, and the doctor suggested that he be tested again, so my lover went through the testing process without telling me until he got the results back. He tested negative again and told me afterwards. In fact, he told me right after we had had sex. I remember that distinctly.
I was furious about that, because it was something I felt we should have done together. If he had some kind of fear or anxiety or some reason to believe something wasn't right, then I should have been included in that process. He shouldn't have gone through it alone. His reason for not including me was that my anxiety was too high and he didn't want to add to that.
Ben and I have a generally monogamous relationship, although there is an occasional jack-off session with somebody outside the relationship. We have an agreement that we don't engage in any risky behavior -- what we've defined as risky behavior -- with anyone outside the relationship. We have unprotected sex with each other, based on that agreement and our testing history as well.
And yet, I would feel incredible anxiety after I jerked off with somebody else. Even that kind of contact, which I knew intellectually didn't pose any great risk to me, would cause great anxiety. Fear crept back, very closely related to guilt in my mind: if Ben got sick, I couldn't live with myself. I would be the guilty partner. This anxiety did not discourage me from having encounters outside the relationship; it just made me feel guilty.
I felt that Ben and I hadn't talked about our explicit understanding of the relationship regarding sexual fidelity. We had talked about it years before, but we hadn't revisited it. I was concerned that maybe I understood our agreement differently than he. Sometimes he would say things that would lead me to think, "Maybe he expects a different kind of fidelity than I am giving him." I felt he would judge me for having sex outside the relationship, even though he was okay about my jerking off with somebody.
As close as we are, and as deep companions as we are, Ben and I don't always talk about sex very easily with each other. It's not one of the things we are on the same wavelength about. That's something for us to deal with over the course of our relationship.
But we've come beyond that point. We're more comfortable with the agreement now. Ben and I agree that there's no oral sex outside of our relationship, meaning that I don't go down on anybody and nobody goes down on me, and the same with him. And there's certainly no anal sex, even protected. We also have agreed not to deep-kiss anyone else. We err on the side of safety. "We have each other's life in our hands" is how we put it.
The other night we were joking about the Boston Jacks events, the jack-off parties that go on around town. I've never been to one, but many people I know go. We were with some close friends and I said, "Well, Ben of course would never let me go to one of those things." And he said, "That's not true. You can go if you want." It was explicit license to go ahead if that's what I needed.
I met Ben in 1982. I basically grew up with him. It was a different era, in some ways. I don't know what it would be like to meet somebody since 1985 and have a long-term relationship. I would imagine -- this is a fantasy for me -- that I wouldn't have any trouble insisting on condom use with a new partner now, because I would have no background. I know I would need to protect myself, because there wouldn't be a foundation of trust built.
For me, it's unrealistic to imagine having protected sex with Ben. Ben and I have never had protected sex, never in our lives. It would have been a major change to start having protected sex. And to do that now would be a psychological shift for us, a symbolic one. It would symbolize a kind of distrust of each other, I think. I trust Ben completely. He's an incredibly trustworthy person. I decided at one point that I trusted him more than I loved my own life, if those two things can be weighed together.
Reactions from our peers have always been affirming. We've never been challenged. Ben and I are often viewed by our friends as pillars of monogamy and stability. To a degree, that's true. To a degree, we're very monogamous. And when an outside thing happens, it really is incredibly safe. There is no contact with any kind of body fluid, on my part. I have to say that part of my trust of Ben is built on my trust of myself in those situations.
Both of our families, I think, see our relationship as a marriage. I think they assume we are not having protected sex. They don't assume that marriage has any openness to it. If it does, it's a breach of that marriage contract. That's how they see it. In reality, many marriages breach that contract all the time.
Many couples I know of, my situation included, often ask, "Is part of the reason we're still together because of the epidemic? Was it safe for us to stay together?" We identified ourselves as an isolated couple, insular: nothing was going to get in. We could stay with each other and have a relationship that was emotionally and sexually fulfilling, but maybe not as exciting as having a new partner.
Ben and I hit our lowest at about the seven-year or eight-year mark, when it was very difficult to stay together. One of the reasons we both stayed with each other was because it was safe. I asked Ben point-blank once if that were the case. He said, "I couldn't imagine putting myself in a sexual situation with anyone else, because of AIDS." He just couldn't imagine it. He's very disease-phobic. When we talk about safer sex, he is incredibly conscious of disease and the potential of transmitting disease.
Ben was working in New Haven when I moved to Germany on a Fulbright scholarship and met a wonderful person. We had an affair, an emotional affair. I didn't have oral sex with the guy, nor anal sex, and there was no deep kissing, but there was a lot of physical contact. He had never been tested. He was in a circle of friends who were very hard-hit by the epidemic. I knew when I was getting into the whole thing that this was risky. At the same time I was very emotionally drawn to him. But I never crossed a certain line, even though at times I was tempted to. It was my relationship with Ben, perhaps, that kept me from that and -- this is interesting -- not my feelings about myself.
I felt the affair put me at enough risk to tell Ben this had happened before we came back together, to give him the opportunity to make a choice: "I realize you might want to use protection. Or you may not want to have sex with me." It was all very explicit.
In fact, Ben and I were abstinent until the time we got tested again, five or six months later. I was mandatorily tested in Germany and came back negative. The guy I had the affair with was tested last year and he also tested negative. It's interesting that that was a real relief. I hadn't even realized that was a pressure in the back of my mind. Even though I had tested negative, it was a relief to hear that he had tested negative as well.
That affair turned out to be important for Ben and me, emotionally. At that point we had been ten years into the relationship. We were at a real juncture. It became a cementing experience.
Now that I've been with my partner for so long, there's such a companionship that I couldn't imagine my life without him. Our sex life has changed significantly over the years. We still have sex together, but it's not nearly as frequent, nor as experimental, nor as exciting as it once was. And that's okay for me.
I believe I am HIV-negative, generally, although there are moments when I believe that I'm positive, in a way. I don't know if it's a question of empathy, or what, but there are sometimes moments when I think, "You know, I'm probably positive." I don't know where that comes from, but it's there.
I think we HIV-negative men often think of ourselves as positive. We identify, I think, as potentially positive. It's not because safer-sex education told us we should think of ourselves as positive, but because we heard and assimilated the messages that we got throughout the epidemic: that being gay equals AIDS. For those of us in our early thirties, much of our early twenties -- when we were coming to terms with dating and having sex -- we were absolutely surrounded by messages saying, "If you're gay, you have AIDS." I imagine it's worse for even younger people.
What the identity is, when I think of myself as an HIV-negative person, has changed over time. I used to think of myself as one of the "spared" people. Then there was a period when I thought, "I guess I'm kind of milquetoast. I haven't really been around." Then I thought I was lucky: having had risky behavior with a person who I believe was infected at the time, and somehow not getting infected. Now that I'm doing AIDS work full time, there's a kind of guilt that comes along with being negative which I haven't quite come to terms with. It's a question of credibility. When I'm with people who are HIV-infected and who are doing AIDS work, I somehow think their messages are more credible than mine. I'm somehow less authentic.
When I was a high-school sexuality educator, I would often start a class by saying, "If I stood here in front of you and told you I was HIV-infected, what would be the first questions that go through your mind?" I never disclosed whether I was infected or not. Playing that role, I would play it as an infected person. I used to feel identified as that positive person. And in that fantasy I would often feel a certain self-righteousness.
I have a friend who knows he's HIV-infected. He goes to public-sex areas and has unprotected intercourse with people. He's very learned in AIDS issues, very much an AIDS political activist. His feeling is that people need to take responsibility for themselves, and if they allow him to have unprotected anal intercourse with them, then that's their problem.
I decided I can't be a friend with someone like that. I simply can't. I can't condone that behavior. I can't make believe it doesn't bother me, because it does. I think sex is always mutual. Even if it's the most anonymous sex, it's a mutual thing. There's a certain level of taking responsibility for your partner in it.
Do I think my acquaintance should be held accountable? I don't think he should be put in jail for the rest of his life. But he heard from me how much I disagreed with him. And as a result, when I do HIV education, I always talk about the mutual responsibility of sex partners.
I understand some of the studies that are showing that older gay men are now becoming infected at an increased rate. They find themselves alone, most of their friends are gone, and it doesn't matter anymore. They'll have unprotected intercourse because they want to enjoy themselves, and because they want to give up. In some ways it's slightly suicidal, but also slightly life-positive. You just want to give in and live to the fullest whatever time you have left. Even though part of me knows the tragedy of that situation, there's another part of me that understands it. Even though anal sex hasn't been taken away from me -- and that's true, it hasn't been taken away -- there is something about freedom of choice that has been taken away.
Gay men take risks for a number of reasons. Something about growing up as a gay male in our society held me down and made me feel inferior for a very long time. I can imagine a response to that being "I'm going to be somebody who will take the lead. I can make my own decisions, and I can feel confident in that." Part of taking risks may be wanting to be identified as a leader, as a maverick.
When we talk about HIV in communities of color, it becomes clear that it is a question of relative risk: How do you talk about a disease that might kill people 5, 10, or 15 years from now, when they're worried about walking home from school and being shot? Likewise, we don't always understand the violence that gay people experience. If they have gone through life feeling violated for being gay, the risk of dying ten years from now doesn't seem so horrible. It's easier to think there will be a cure in ten years: "I can take risks, and I can start living a full life. Even if there's not a cure, I'll still have lived a full life."
I think the ACT-UP sign -- "The AIDS Crisis Is Not Over" -- is important. I think many of us believe it is over for gay people, that other populations are going to be hit. We feel we've gotten some control over the epidemic. That is not true.
Sometimes I do sense divisions between HIV-positive and HIV-negative people, especially in AIDS work and activism. Larry Kramer says that you have to be HIV-infected to scream loud and use really effective language, that HIV-negative people don't do that. They lack a sense of urgency, so they're all playing bureaucratic games. Sometimes people like him make me feel guilty. Here I am, working in a state agency, and things move slowly. They plod along. Maybe it is because there isn't so much at stake for me. I do question that.
I remember one day I was working on a project at the AIDS Action Committee with someone and he was completely stressed out by the project. I said, "You need to go home and relax. Just put it away for a couple of days." He said to me, "We're in the midst of an epidemic. We can't put this away." I assume he was HIV-infected. I remember feeling very guilty about that.
I think HIV-negative people bring longevity to the work against the epidemic. We provide continuity for the future. In my own work, I think of that all the time. I want to be able to see policies fully implemented 20 years from now, and to make sure that they are. It's a responsibility. It's part of the commitment that I personally -- and secretly -- have made to my HIV-infected friends.
When I think of this, I think of one dear friend. He was sexually molested as a child, then went through a severe drug problem, and found out he was HIV-infected right when he started getting a handle on his drug problem. Although he thought he was newly infected, it turns out he's actually in the later stages of the disease. He's so vulnerable, it's incredible. I think about him a lot when I think about the continuity I can provide to the future. He's worried about all kinds of things, including health-care policies that keep him from accessing care. And he's not going to live to see those policies change. I feel that I can.
I talk about the future with my HIV-infected friends, but it's usually about their future. It's very rarely about my future. They don't very often ask about my future, and their future is much more important right now. I'm willing to defer to that.
I get blown away thinking I will probably outlive all the people that I know are HIV-infected. I imagine, sometimes, a rather sad future: being an old person sitting and thinking back on the epidemic, remembering the people who have gone, who never had the opportunity to reach old age. That plays on something in me I haven't quite dealt with, something spiritual. I'm not a religious person, but it touches something I haven't quite come to terms with. It's not completely bleak. When I imagine sitting on my porch, it's usually in a nice rocking chair on a beautiful sunny day, reminiscing with someone. But certainly it will be a retrospective on an incredible tragedy.
When I saw the ending of Longtime Companion, where they all came back together on the beach, I thought it was too sappy. I think that when death happens, there's nothing after that. That's why the epidemic is such a tragedy. It wouldn't be such a tragedy if there was a great reunion. It's a tragedy because there's not.
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Conclusion · Appendix A B C · Notes · Contributors