HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
I CAME OUT IN GAY BARS. Alcohol took the inhibitions away, gave me that little glow, made me more apt to talk to people, took the edge off stress at work -- all the things that alcohol is supposed to do. With the alcohol would come cocaine, and with the cocaine would come sex.
When I was using -- drinking or drugging -- I would have unsafe sex, that is, going to a peep show and having someone suck me off. I've contracted gonorrhea that way. Going to the Fens, an outdoor cruising area. I never did that until I started drinking. Having unsafe anal sex, where I've penetrated someone else without a condom. Why would I take the risk? Why would they let me unless they were positive? I never thought about that until after I stopped drinking.
I moved to New York City in 1985. I did the Fire Island scene, partied a lot, did a lot of drugs. I was smoking two packs of cigarettes a day. In 1986 I was experiencing night sweats, loss of weight, diarrhea, shortness of breath, all those things. I thought I was infected. I had friends in the design industry who were getting sick and dying. After a relationship broke up, I moved back here to Boston in 1988 and wanted a fresh start. I got tested and it came back negative.
I was going out every night after work. I'd end up tricking every night. It was, to my understanding, safe. Sure, I had anal penetration without a condom, but that was all right if the person was a married man. My awareness just wasn't there as it is today. If I was penetrating, I wasn't using condoms. If I was being penetrated I would, which wasn't that often, maybe four or five men. From an oral sex standpoint, I only swallowed four men in my life. However, I would let anyone and his brother suck me off.
My sexual patterns also changed as I went to different places. I commuted to Amsterdam for a while. In Amsterdam, the bars still have back rooms. If I was fucked up, I had unsafe insertive anal sex in back rooms of bars there. On the flip side, if I met someone and I was in his bed, it would be safe. Very strange.
I knew I was drinking too much. At the end of my drinking, I saw nothing in the mirror. There wasn't anything to hate; there wasn't anything to love; there was just nothing there. That body drank, drugged, abused his body -- and other people's bodies -- having unsafe sex. The day I stopped drinking, I buried someone. I buried an evil, nonfeeling, abusive person who had died. It's a cliché: I was sick and tired of feeling sick and tired.
If you're not in recovery, you really can't relate to what I am going to say: on a Tuesday I went to my first meeting, Thursday saw my first shrink, and the following Wednesday got tested for HIV, because I was going to fix everything and be fine in two weeks. I realized it wasn't going to happen that way later on down the road.
When I got tested in June of 1992, I was a week sober without a drug or anything in my system. That two-week waiting period was the hardest two weeks of my life. I hoped I would be positive, so it would give me an excuse to go back out and drink and drug. I was scared to get a negative result because it would force me to get sober. I hoped it would be positive, so I wouldn't have to deal with the other disease. But the test came back negative.
I went back in January to be retested, just to be sure. At that point I was hoping it was negative. Because I was in a recovery group and because I was seeing a therapist at the time, I had my support network set up. When I went in for my test results, the counselor asked if I had brought someone with me. My immediate response was, "Why? Should I have?" And she said, "Oh, no. I should have told you: it's good to have someone with you." It is good to have someone with you for support, whatever the result may be.
Recovering from my addictions, I started meeting people who were HIV-positive who were in recovery. I started seeing people in advanced stages of AIDS who were in recovery. I isolated myself to get away from them. If I found out they were HIV-positive, I would be more distant to them, because I didn't want to develop a friendship and then suffer the loss. In my recovery I was just starting to learn how to be myself and how to be with people who were doing the same thing. I wasn't ready to suffer that kind of loss.
When I got sober and started meeting people who were HIV-positive, I started having feelings like, "Oh, my God, why am I negative? What did he do that I didn't do? What did I do that he didn't do? I can't count how many men I've slept with. Why am I negative?"
A lot of people assume that I'm positive. Someone I befriended had seen me at the Fenway Community Health Center. I was there for counseling rather than HIV-related treatment. At a recovery meeting, he came up to me and said, "Matthew, my name is David. You know, they have recovery groups for people who have just found out they are HIV-positive." I had to look at him and say, "I'm negative." That was hard. I almost wanted to say, "Oh, thanks a lot. I'm glad you told me," and pretend I was positive, so I wouldn't have to see the look on his face. Part of me wanted to cry, and part of me just wanted to walk away. David died in January.
I have a friend in New Hampshire I hadn't seen in a few years. A lot of our friends have died. I was at his restaurant and he said, "Matthew, how many do you have left? I have four."
He was referring to his T-cell count.
I had to look at him and tell him, "Over a thousand, I guess. I'm still negative." That was the hardest thing for me, to look at him and say, "I'm still negative."
I told a friend I was going to an HIV-negative support group. He said, "Why the hell do you need that? I'd be jumping for joy." I don't think he's been tested. He was convinced there wasn't a need to know. And when the time came that he needed to know, then he'd go and get tested. Well, I am glad I'm negative, but there's still the "Why me?" question. I went to the group to explore the core issues facing HIV-negative men. To say, "I have these feelings too. I'm scared of getting infected," or, "I'm afraid to develop a close relationship because I don't want to lose people." And I have. In my first year of recovery, I have seen nine people I have met die.
Then I started to date Frank, and that's where things changed. We had dated twice, slept together once, without the question of HIV status coming up. The second time we had sex, we were lying in bed after sex, and I just asked him, "Is there a plus or minus sign next to your name?" And he said, "I'm positive. I take it you're negative."
It didn't make things any easier, but it laid everything out on the line. The next day he was going away on vacation with his family. Walking back to my apartment, he said, "You know, Matthew, I want you to think real hard while I'm gone. And if you don't want to continue this, if you want to walk away, I won't think you're a jerk. I'll understand."
The last relationship Frank was in, he hadn't disclosed his status right up front. They were together a couple of months before that came up. His partner was negative and shut the door, slammed it in his face, humiliated him: "How dare you. How dare you risk infecting me. You knew all along and you never told me." I don't think Frank could have gone through that again.
My sister, a physician, made me say to her that I'm aware of the risk in entering a relationship with someone who I know has a terminal, infectious disease: "Why are you entering into a relationship with someone that you know will eventually become ill, who will die over a long period of time?"
I told my mother I was going to be interviewed for this book. I told her I was negative but my partner wasn't. The first thing she said was, "Oh, you're being safe?" And then she said, "Isn't it going to be hard?" I said, "Well, he's fine today. I don't know when he's going to get sick." She was supportive: "If you need me, call on me. If something happens and you need us, we'll come right down." My mother is a very loving, open, accepting parent of a gay child. I think there's a lot of caring in my family.
Currently I will deep-kiss my HIV-positive partner. My definition of unsafe sex is unprotected anal sex and the exchange of semen or blood. There was one incident early on in our dating. Frank had a cold sore that had scabbed on his lip. I scratched it with my beard -- my shadow -- and it started bleeding. I didn't realize he was bleeding. We were kissing when I did it. I got blood in my mouth, and Frank tasted it himself. "Honey," he said, "I'm bleeding. Go to the bathroom." So I rinsed my mouth out with hydrogen peroxide. Hope that did it. And Frank broke down crying, because the disease reared its ugly head and was right there.
Recently we've experienced night sweats -- where he has soaked the bed -- and I'll lie there and try to comfort him. This week, he sweated one night and got up and changed the sheet, and I stayed in bed. Last night, he asked me if I wanted to stay over, and I did. He started sweating really bad and changed the bed once. Then he asked me, "Honey, should you sleep on the couch?" He gave me the option. I didn't, because I didn't want to. This morning, I wondered, "Maybe I should have, because I have a scratch on my hand." That never seemed risky to me before. If he's crying, to wipe a tear away from him doesn't bother me.
What I perceive as risky behavior is an exchange of semen. I will not take his ejaculate in my mouth. He is very dry up to orgasm, so I have not tasted any precum or seen any precum, so I feel comfortable with that. He will pull me away if he thinks he's precumming. His orgasms are violent; they are not something that would happen without you knowing about it. My lover will eat my ejaculate because he likes the taste. I come near his mouth, jacking off in his face. He feels, "I have nothing to lose, and you're negative."
I have to accept the risk that I took by entering this relationship, knowing there is a chance for me to convert. I can't change that without abstinence. Abstinence just isn't me. I can't be abstinent. Part of me says, "Oh, it won't happen to you. Everything's fine. You're safe. It can't happen." Which is very stupid, because I know it can. I think there's an element of denial, that it won't happen as long as I'm consciously aware and know what's going on.
I know the risk is there. I know there is a transmittable virus in the partner I am having sex with. I'm more aware of my bodily functions and my partner's, by knowing. I know that if I have a cut on my hand, I'm not going to jack him off. Or if I've nicked my chest shaving, I'm not going to lay in his ejaculate when it's on his stomach or his chest. I just won't do that.
There's a more intimate bond, because there are no secrets. I don't think it would be as intimate, not knowing his status. It would be just mutual masturbation and that's about it. In terms of risk, there's more risk not knowing, in my eyes. There's no hidden knowledge, and there's no guessing: "Is he? Or isn't he? How can I really make love to this person, be close to him, if I don't even know if he's positive or negative?" If somebody said he was negative, I don't know if I would trust whether he was telling the truth or not. But I would trust somebody if he told me he was positive. Oh, God, that doesn't make any sense at all, does it?
My sex with other men prior to Frank was strictly the act of sex. The sex I'm having with Frank is making love. It hasn't just been "Slam, bam, thank you ma'am." It's intimate. There is talking, there is communication, there is foreplay. There are other arenas that I have not explored with anyone else, and I think partly because of his status. There's more of him with me than just his body. I've gotten to know him, what he's talked about, his emotions about the disease and the whole process.
As I develop a relationship, I tend to get more comfortable with my partner's body: knowing when my partner is going to come, sensing when he is going to come. There is a chance that I may, because I am so comfortable with it, subconsciously or consciously, take his cum in a fit of mad passion. I see myself getting more comfortable.
Would it be easier if I was infected, in the long run? That's a question I'm asking myself. It would mean a common bond that's not there now: "Will you take care of me or will I take care of you?" Now, the question is: Do you want me to take care of you? Which is a very different question. And will you let me take care of you? Is my partner going to give me the opportunity to? Or is he going to shut me out: "Get away. I don't want you to see me like this"? Is he going to take his life? Is he going to be fine on Monday, when I go to work, and then decide, "Now it's time, because I don't want to get sick," and I'll come home and find he's dead?
Today, I know I'm negative. I'll get retested in June. And although I said my test in getting sober was the hardest because I wanted it to be positive so I could go back and drink and drug, this June I don't know how I'll feel about the test. If I have converted from negative to positive, I don't know if I'll tell Frank, because of the guilt in that seroconversion. I would want to protect him from knowing I had converted in the relationship. That might last a month. I wouldn't be able to not tell him; he would know. He'll feel that he infected me: "I told you this would happen. It wasn't a good idea. Now I've killed you." I can hear him saying that. And I don't know how I would feel.
Maybe I'll ask him to come with me. I think for me to be retested with him, I will need to ask him to get involved in a discordant-couple group, or to see a therapist prior to my testing and at the time the results are given. I've asked him to start going to a group-therapy session with me.
I've got to talk about the positive part of this relationship, and that's the day-to-day. Frank's not sick today. He's asymptomatic. He's living healthy with HIV. We work out. We live like a normal couple would live. So if I have a year of that, if I have three years of that, or if I have ten years, for me it's better to have the quality of time with Frank than never to have had it at all. That's what I have to look at. And that's how I have to live, every day.
I have a disease that will kill me if I don't control it: alcoholism. I have the luxury of keeping my disease in remission by not drinking or drugging. Frank has a terminal illness that he had no choice in getting. He got it. I did not choose to become an alcoholic, but I am one. We have very different diseases, but the outcome will be the same if I pick up. The difference is he doesn't have a choice. Eventually he will die.
What I've learned with him is that he makes the best of every day because he doesn't know if tomorrow is going to be as good as today. I live every day just for one day because I'm only sober for one day. I need to keep that common bond: the way that I perceive life on a daily basis. And that's why I think we are a very good couple. We get support from each other.
Two people meet; they fall in love; they're going to build a house and live happily ever after. Entering into a relationship with someone who is HIV-positive -- when you are negative -- kind of puts a damper on that. It's hard to plan. You know that eventually something is going to change. That's the negative side.
On the good side of this relationship? I smell flowers with him. I see things that I've never seen. I take the time to see the beauty in people and the beauty in things. I take the time, even in snowstorms. We held hands and walked down Berkeley Street recently, tasting the snow as it was coming down. When I was drinking, I would be bitching, "Oh, this goddamn slush." It was really beautiful. I see a lot of things through him. On the blue days, I see blue real blue.
The disease isn't there 80 percent of the time. It's there when it has to be. And when it comes up unexpectedly, it's not as big a deal. It's manageable. Last night, we reupholstered a chair, which I had never done in my life, and neither had Frank. So the two of us sat there and experimented and reupholstered this chair. It took seven hours, and it came out beautifully. It was a project we did together, something that a normal couple would do. The disease wasn't there when it was being done -- until I stepped on a tack and he stepped on a tack. Then Frank said, "Matthew, put your shoes on." And I said, "No, why don't you?"
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Conclusion · Appendix A B C · Notes · Contributors