HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
IN THE EARLY EIGHTIES, when there wasn't a test, you didn't know whether you had done something that could have infected you or not. There were horror stories of people waking up, having some bizarre symptom, and within 90 hours they were dead. For me, it created a sense of urgency. I felt I had to try to achieve as many of my long-term life goals as quickly as I possibly could.
It influenced my decisions about what to do career-wise. I had always had a pipe dream of owning my own business. So just two years out of college, I decided, "I'd better do this, because I may not have the opportunity to. I don't know what is going on in my body." I opened a little store, but it was grossly undercapitalized. I was very young and there was no money to back it, but I did have my new VISA and MasterCard. So I kept a full-time job and at the same time put this business together. My hope was that it would snowball, which it did during points in its history, but it eventually folded.
In my junior year of college, I had met somebody and had had a monogamous relationship with him for about four years. That relationship ended about that time. I felt angry and somewhat deprived: I felt as though I couldn't explore my sexuality the way I should have been able to, because of the epidemic.
In the late seventies, the ideal was to be as promiscuous as you could. That was a sign of masculinity, virility, and gay identity. You were comfortable with your sexuality and you were genuinely a gay man if you fucked your brains out 24 hours a day, anywhere, anytime.
I was angry because I couldn't experience a lot of these different things. I felt that if I could be a real slut and do all kinds of incredibly nasty things, it would somehow be freeing for me. I'm older now. I understand that no sexual escapade is going to give you that kind of freedom. Sex is not going to do it. But I used to think that way.
I wanted to kick up my heels and have a good time, but I really couldn't do that without fear. In retrospect, I see that a lot of my sexual appetite and behaviors were repressed. I had inhibitions as far as anal interaction was concerned. I was more of a top. Being a bottom was something that I considered too painful and didn't pursue. I was always relaxed as far as oral sex was concerned, thinking that's less of a risk. If my desires had been different, I think I would have been much more at risk. Looking back on it in a parochial way, I think that was my safeguard, a little bit of a guardian angel.
In 1985 I began a relationship, the most powerful, committed relationship I've ever been in. The love of my life. We put together as close to what would be considered a traditional marriage as you could. We exchanged rings and vows and tried as best we could to honor our commitment. We were wrapped up in being in a relationship. There was a feeling like, "Oh, boy, we've found each other. And because we've found each other we won't have to worry about AIDS anymore. We've probably escaped." That was in 1985 and 1986.
My partner, Brad, was about seven years older than I was and had lived through the heyday of the seventies in New Orleans and Provincetown. He had had multiple partners. He had gone through his thing with being anal-receptive. From what I understand, if you were right in the thick of it, you had to adapt to being anal-receptive or you weren't really gay. You weren't really part of the whole thing unless you could do that as well. In San Francisco there was a course on getting fucked that men would take. There was that much of a value placed on it.
Brad was really caught up in living the eighties kind of life, having to do it all, and do it all quick. He was a psychotherapist, which provided a healthy income, but in addition he liked to dabble around with real estate. That was the peak of the real estate boom. He would leverage one thing against another and have all sorts of credit available. He bought himself -- and me -- wonderful toys and gifts. It was a lavish period. He felt justified indulging himself, because of the AIDS thing. But also, that was what was going on in our society.
Testing was an issue that we discussed but tried to skirt around as much as possible. In 1987 we had dinner with a doctor and he talked about the test. I hadn't really heard much about the test. I didn't quite understand that you really could find out whether you were infected or not. I got turned on to this idea and decided that I wanted to do it. I wanted the two of us to do it together. We came to a conflict at that point in our relationship. It was a real turning point, because Brad didn't want to.
At that time they were saying that if you did test positive there wasn't really much you could do. That was his program. I, on the other hand, felt that regardless of what is going on in your body, the more you know about it, the more you know about ways to deal with it. So my feeling was, "Test, test, test." His was, "Not, not, not." Ultimately, the way we resolved the conflict was to do what was appropriate for ourselves independently. We weren't going to do this together as a team. This was one thing we were not going to "couple" on.
In late October of 1987, I had just turned 30, and I decided this was something I wanted to do. I didn't tell Brad. I didn't tell any of my friends. I didn't tell anybody. I just went to an anonymous testing site and took the test. I guess I'm a bit of a daredevil: I went into it blind. Maybe that's the only way I could do it. If I had known a lot of the stuff I know now about the epidemic, the prospect of testing would have been incredibly scary for me. The results came back favorably. I tested negative. I was very happy.
Then I went home and shared the information with Brad. He was a bit taken aback that I had done it. He was happy for me, but he was tense, because it clearly put the emphasis on him: "What are you going to do?" A couple of weeks went by and he decided he wanted to do it as well. He had a lot of fear about his past, but we had been together for over two years, and we had been monogamous, and he was feeling quite confident that since my test had come back negative, his would also come back negative.
So he made an appointment and he went. Because he was a gay-identified therapist in town, he didn't want to go to any of the local testing sites, for fear that if he were identified as HIV-positive or having AIDS, it would affect his practice. People would not want to come to see an infected therapist. So he went out to a middle-class suburb and got tested through the American Red Cross.
His test results were coming back the morning he was supposed to go home for Christmas, and he didn't want to spend his two weeks away in a state of anxiety. He set up an arrangement with his counselor to get the result over the phone. We had synchronized that I would be at his office between clients so we could be together when he called.
What compounded matters was that my grandfather had died the week before. I was driving back from Connecticut on that morning -- I had just buried my grandfather -- and there was a snowstorm and I was delayed. So I stopped at a pay phone to explain what had happened. He answered the phone and was hysterical. He was a mess because he had just called. He could not wait for me. The counselor had told him, "We think it would be good if you came back for another test." That was a code to say that the preliminary ELISA test had come back positive. I drove the rest of the way back here to Boston. I have never heard sounds come out of my body like they did that day. It was the beginning of what I would consider the worst period of my life.
It was a situation that neither one of us was prepared for, and there was no place to go with it. There was very little counseling or support for people at that time. Brad didn't want to tell his friends. He didn't want me to tell my friends. I told my closest friend about my test result. But other than that I did not go around telling other people. My test result was overshadowed by his test result. We knew the natural question would be, "Well, what about Brad?" People were going to want to know that.
Brad went through a phase where he wasn't going to go for the final result of a confirmatory Western-Blot test. He decided it would be best for him not to find out, that it would be better to go through life functioning on the pretense that it was a false positive.
I should have abided by his decisions and judgments, but I didn't. I couldn't. There was a voice inside of me that was telling me to push, and I did. I felt it would be better for him to know. He understood intellectually, but in his heart he was full of fear. I think he resented me for pushing him. Subconsciously he resented my negative status, and that played itself out over the course of the next couple of years.
So I pushed. We waited six weeks. We went back and he got the final result and it was positive. During that six weeks, we read as much as we could, we talked to different people, we read about how AZT was being helpful, and other treatments. That presented a whole host of questions that needed to be addressed, with very few answers. We had all this information: the Chinese herb specialist, the acupuncturist, the chiropractor, AZT, pentamidine, holistic therapies, all of these things. What do you do?
Four months after getting the test result came the decision of whether to get T-cell counts. He didn't want to do that. He wasn't going to pursue any kind of treatment. I had to nudge. I became a nagging housewife. He went and got the T-cell count and he only had 187 T-cells, which was not good.
T-cells became the next huge thing. You had to protect T-cells. There was an enormous amount of stress surrounding all of this. But by the same token, you weren't supposed to have stress, because stress could destroy your T-cells. If you destroy your T-cells, then you could go from being HIV-positive to being sick. So you had to try to smile living in a pressure cooker.
I came up with something we used in our house right away. If you've got a negative situation in life, you think of something positive about it. So I took the symbols "H.I.V." and instead of "Human Immunodeficiency Virus," I gave them a different meaning: "Hope Is Victory." We started a major campaign for hope, and we lived our lives around it. When his T-cell counts came back and they were escalating, we would make big poster-sized numbers and put them up in the bathroom as a visualization tool.
This changed both of our lives. He then was very good about treating his HIV. He went so heavily into creative visualization that he set for himself a real shoot-for-the-moon goal: he was going to seroconvert back to being HIV-negative. He had read somewhere that there had been maybe seven documented cases where men had done that. He decided that that is what was going to happen to him: he could control the HIV and change his health back to being HIV-negative.
So he put on his blinders and that is what he went for. That became his end-all and be-all in life. And that was a big adjustment for me, because in the beginning of our relationship, I was the end-all and be-all of his life. Nobody ever made me feel as good as he did. It was a big loss for me. I hadn't lost him to AIDS, but I had lost him.
I can remember what a horrible feeling it was to realize that it was never going to go away. That was a catharsis for me as far as accepting limitations in life. I always thought pretty much anything was surmountable. Given a challenge, I can overcome just about anything. But this was like a big monster that came in and took everything out of our cupboards and just threw it all around and said, "Fuck you. I'm here to stay. Learn to live around it."
A year after we did the testing, things like discordant-couples groups started to crop up. We enrolled in a study program for discordant couples at the Fenway Community Health Center. A new group for HIV-negative partners of positive men was just starting at the Fenway. I guess we were pioneers back then. There was an unspoken presumption: "Oh, well, he's negative, so he's fine. What does he have to worry about?" That was probably something I said to myself a lot too: "Any feelings that you might have pale in comparison to what your loved one is going through, so don't even think about it." This feeling was prevalent in the community and I think it still largely exists for negative men.
It sounds kind of weird, but in a way it was worse having Brad test positive than if I had tested positive. A lot of my feeling was wrapped up more in him than in myself. I didn't have a good source of support in my life at that time. I internalized a lot. I started to abuse drugs and alcohol and created my own little monster with that. I took most anything that would numb me. My doctor had given me an open prescription for Valium. Nyquil was another thing I liked to rely on. I was drinking too much alcohol as well. I felt this was what I needed to do in order to be supportive: to put down whatever I might be experiencing.
When I realized that, it was two years after he had gotten his result. He had been successfully taking AZT for about a year. His pentamidine treatments were working. As a result of doing a lot of creative visualization and our being very positive about his situation, his T-cells went from 187 to about 380 and they were climbing. So things were going good. They were saying, "You don't have to come for the pentamidine every ten days. You can come every three weeks or every month." His condition appeared to have stabilized. We were feeling really great about that.
I decided that I could take some time and address my issues. So on Memorial Day weekend four years ago, I decided that I was going to try to live for one year chemically free, meaning no alco-hol, no marijuana, no Valium, and no Nyquil. Not knowing much about addiction and what happens when somebody puts down substances that he has become dependent on, I just put down everything completely.
I did not believe I was alcoholic. I did not believe I needed Alcoholics Anonymous. This was just something that had happened to me as a result of the situations in my life. I lived excessively to run from my pain. My solution was just to eliminate those substances. And so I did that. It put me on a path I really wasn't prepared for. Looking back on it, I think my expectations of Brad were unrealistic and my neediness was overwhelming for him. It was too much stress for the relationship to withstand.
We decided that summer to do a trial separation. I wanted space from him. I was experiencing tremendous amounts of rage and anger, and I didn't know what it was about. I attributed it to the loss of alcohol. I couldn't live with the fear of what my emotions were going to do to his now-healthy T-cell count. I felt that if we had a separation for a couple of months, it would give me time to get this out of my system. I wouldn't have to feel guilty about potentially destroying a couple of his T-cells as a result of an emotional outburst. It seemed like the sensible thing to do.
Brad agreed, but he prefaced that most of the time separations don't work, that people end up breaking up. I remember looking him square in the eye and saying, "We won't do this if you really believe that." And he said, "No. I think you're right. We should try it." Well, he didn't really hold up his end of the bargain. Once I was not in the apartment, he became more distant. My plan backfired on me.
In the fall, we talked about a reconciliation and made a plan that I would move back in. Then he changed his mind. I didn't know until four months later that he had met somebody else. He did with me what he had done with his lover before me, which was to drop me like a hot potato, like I didn't exist any more. It was overwhelming. We had done everything we could to create the symbols of a marriage. We had given each other legal power of attorney. That's why I felt confident with a temporary separation: there was a deep structure in place to work from. But I also knew him: he did have a fickle component in his personality.
The dissolution was very tense, because he had this other person in the wings and wanted to get on with his new life. And my expectations had been so totally different. He was unreasonable about trying to negotiate finances, living situations. We owned a three-family house together, and he wanted to stay in the unit that we had remodeled and was our home. I proposed that I take the first floor but he wouldn't hear of it. He was very all-or-nothing in that regard.
I felt cornered like a rat, incredibly angry, and betrayed. It created a very messy, ugly divorce. Very painful. We both really cut each other up. Not the type of thing that somebody should be going through during the first year of sobriety. It was a very passionate beginning and a very passionate ending. Sometimes I think that's what we both needed to do to destroy the feeling that was there. That was in 1990 and 1991.
That relationship, from beginning to end, was only five years long but it felt a lot longer and it took a lot out of me. I'm not as willing to gamble and take that risk. And it is a risk, when you let down your guard for somebody else. I don't rule it out as a possibility, getting involved with somebody. But it's not top on my list of priorities.
A couple of years after Brad and I broke up, those few people I did date, I would somehow manage to find out their HIV status, and it would influence my decision about whether I spent time with them. I did date somebody for about six months and he didn't want to test. Then he did test, because I said, "I really don't want to go any further with this, because I don't want to end up in the same situation that I've been in before. I couldn't live through it again."
I haven't had the experience of finding out that somebody I had a crush on was positive and then had to make a decision about whether to date him or not. I haven't been in that position, so I don't know how I'd respond. I'm always relieved when I hear that people are negative. It's easier.
But then this past spring I had a crush on a guy, and I didn't know his status, and I went along dating him for about a month without knowing his status. I liked him a lot, and I consciously didn't inquire about his status, because I didn't want that to influence my decision. I am a different person now. I probably could be involved again with somebody who is HIV-positive. I wouldn't put it real high on my list of priorities.
Although I was unhappy with the changes in my life, they did force me to confront demons that had been a part of my soul since childhood. Maybe something else would have happened that would have forced me to do that, but it was this HIV crisis that did. The imbalance and uncertainty that the testing process can create in your life, no amount of counseling and preparation is going to do anything with that. No matter how much understanding you have, the bottom line is that it's going to be a catalyst for change in your life. It forced me to look at some extremely scary territory and come to grips with it. That's what I consider my miracle from it. Early medical intervention I believe saved Brad's life and has put him in line to receive the miracle drug when it comes. I think that's a miracle and that's a happy story.
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23
Conclusion · Appendix A B C · Notes · Contributors