HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
BEING IN THE CLOSET may have saved me. Because I had heard a little bit about AIDS in 1981, there was a baseline fear that I put into practice: I didn't engage in a lot of anal sex, but I swallowed semen. I had maybe two instances of unprotected anal intercourse, insertive and receptive. It was experimentation. I didn't have many sexual partners.
I wasn't very sexually active because I wasn't very comfortable with myself as a gay man. I was struggling with being gay and felt I had no support. I wasn't connected to the gay community. I was living in my hometown on the South Shore near Boston, where I grew up. I was 20.
The amount of emotional turmoil I was experiencing was significant. I could have gone the other way dealing with this turmoil. Had I been more comfortable with myself, I would have been much more sexually active than I was. Had I been more sexually active in 1982 and 1983, I might not be here today, because I would have let people fuck me without a condom.
In 1984, a friend I had had sex with in 1983 was diagnosed with AIDS. I told only one person about this. I told him because I trusted him and knew he wouldn't reject me. There was a lot of discrimination and rejection going on in the gay community. My fear was that if I told someone I had had sex with someone who had AIDS, I would not be a desirable partner. I would be marked: "Don't do anything with him because he's a potential carrier." I thought I was an okay guy, but other people -- just because I had done this -- would mark me.
I practiced safer sex. I did not fuck at all for several years, or get fucked, and when I gave or received oral sex, there was no exchange of semen. I usually did not use a condom for oral sex.
I got pneumonia once and that terrified me. I remember feeling, "This is it. Finally the end is here." I felt this is what I deserved. I would characterize it as a time of terror. I was terrified I was infected, and terrified of finding out the results. There wasn't a whole lot to be done in terms of treatment, so why find out some devastating information that could be harmful to me emotionally? Why dig any deeper emotionally if I didn't have to? I was in an incredible amount of denial. I didn't want to know.
I first tested in 1988, when the person I had been dating got diagnosed with AIDS. My partner, Michael, was 32 at the time, a lawyer. He was diagnosed on April eighth, and on the tenth he went into the hospital. I was at Northeastern University then, and I was at the hospital with him every night for two weeks. I hid this all from my roommate. That is the level to which I was isolated. I wasn't going to tell anyone I was going through this.
Suddenly I was very close to HIV again. That led me to the point of saying, "Okay, I've got to get tested. I have to find out." I was extremely anxious. I got an appointment at Boston City Hospital. I talked to the counselor explicitly about the sexual activity Michael and I had engaged in. I tried to narrow in on any potential risk of infection. We had always used condoms every time we had anal intercourse. During oral sex, he never came in my mouth, and I never came in his. I never sensed precum from him.
I didn't mind the wait, but I almost didn't show up to get my test results. I called the test site from a pay phone in the lobby of a university building and told the counselor, "I'm too scared to come in. I can't get my results." I wanted to get a sense, over the phone, of what the results were. Instead, the counselor talked to me about how I was feeling and presented a lot of options. I chose to go and get the results.
The test counselor said he was glad to see me. I was extremely nervous. I had my little yellow sheet with my number. He matched the numbers, I saw it was negative, and I was relieved. I felt saved. I felt lucky. I felt guilty. Saved: that we had used condoms. Lucky: that I could go on with my life. And guilty: that I could have been infected and was not. I was doing what everyone else was doing. Part of me felt I deserved to be infected.
I didn't tell Michael right away that I had tested negative. First of all, I wasn't sure my test was valid. We had had sex just a couple of weeks before I got tested. So I was cautious because of the uncertainty of the window period. Also, I felt I couldn't tell him because I had joy about testing negative, and he was going through a horrible time. I felt guilty about my joy. When I finally told Michael I was negative, he said he was relieved. Relieved that he didn't infect me and that he didn't have to wonder about that.
Michael and I broke up around this time, but it was not directly related to his diagnosis. In fact, we broke up a week before his diagnosis. Michael had been in a relationship with someone else for a few years prior to meeting me, and he had decided to reestablish that relationship. When he made that decision, I had to make a decision too, and what I did was to end the relationship and become friends. Even though there was a change in our relationship, we still maintained a fundamental bond, an intimate language. We continued to use the nicknames we had developed with each other as lovers. Going through my papers the other day, I found a note from him that reminded me of that.
Michael did end up reestablishing a relationship with his former lover. Their relationship was a deeply emotional one, but to my knowledge it was no longer a sexual one. The two of them lived together as roommates until Michael died, in March of 1992.
What terrifies me sometimes is that the first time I had sex with Michael, he was insisting on using a condom, and I almost wasn't, because I liked him. That could have been a time where I could have been infected, because I wasn't insisting. I thought he was handsome and I wanted to be his partner. By not asking that he use a condom I was showing him that I trusted him, that I liked him a lot, and that I wanted to be with him.
At that period of my life I was willing to sacrifice safety for a hunk. I wanted to let him know that because I really liked him I was going to let him do this, and he was the only one. I wasn't going to let anyone else fuck me without a condom, but with him I was. It was a mark of intimacy. That was the intention.
Finding out that Michael was positive was a pivotal point for me. I feel I came really close to death. Back then I didn't feel good about myself as a gay person. Now, five years later, I feel like a survivor, and I want to maintain my negative status. It's important to me. I think I have more wits about me now: more experience, more age, and more capacity to handle complexity in my life. I've had more opportunities to think about how to reduce a lot of my fears about HIV. AIDS has given me the opportunity to do that.
How do I feel now about unprotected sex? I'm tempted to say that now I would insist on a partner using a condom, regardless of my feelings. But that's not entirely true. The truth is that it's really hot to get fucked without a condom and have someone you like come up your ass. Who wouldn't want to get fucked? If you like anal intercourse, whether it's receptive or insertive, who wouldn't want to do that with someone they love or care about, without a condom? We don't talk about this in our community, because it's a taboo. We're not supposed to want to do that anymore. It's not being "responsible."
I think it's important to acknowledge that it is exciting, because that's the motivation behind a lot of risk taking. Once that's acknowledged, it gives people a little more freedom and openness to have a discussion about safer sex.
Someone has wanted to have unprotected sex with me very recently. He wanted me to fuck him and come, without a condom. He didn't seem to question it; he just wanted me to do it. I didn't consider it safe at all. I'll tell you what I did: I asked him to get a condom and some lube, and we went ahead. We talked about it afterwards.
He said he knew I was negative. We talked about that. I explained that my fucking him with a condom even though I was negative was to protect both of us, bottom line. I haven't had unsafe sex for a long time. I've trained myself to have safer sex. To have unprotected sex would be reversing all of that behavior modification, all of that change. I wasn't having sex with him because I wanted to model safe sex; I was having sex because we both wanted to. Yet I felt in a sense I was modeling for him: this was how I could show him how to take care of himself.
We talked about how he was feeling about things in his life. He revealed that he had been hurt by a past relationship, and he missed his lover. He missed getting fucked by his old boyfriend, and he longed for it.
I was really concerned about him, wondering if he had been wanting other people to fuck him and come without a condom. We didn't do it, so I don't know if he would have, but there was something about his actions and words that made me believe he really wanted me to. He was willing. It made me really sad. I'm sad talking about it now.
It's very sad to insist on using condoms. Sometimes the way someone could hear that is, "I don't trust you. I don't love you. I'll keep you at bay a little bit longer until I am sure about you." That can be unwelcome in a dating situation, or even in a tricking situation.
A year and a half ago, I did something I wouldn't have done had I known my partner was positive. This person knew his status was negative. I knew this person's status was negative. We were outside, at the Arnold Arboretum. I gave him oral sex and he came in my mouth. Boy, was that a trip! I had not done that in just about ten years.
I didn't know I was going to do it. He didn't know we were going to do it. Things were leading up to it, though. As I was blowing him, there was a moment when I decided to do it, and there was a moment when he decided to do it too. It was really one of the most exciting experiences I've ever had.
I wouldn't have done that with someone I didn't know or knew was positive. I just wouldn't. But I knew this person was negative, and I did. I took a risk. I guess I'm really across the board on this particular question. I have a certain set thing I'll do with people. I know what my bottom line is. But in this situation, I did much more than that. I'm smiling because you're the second person I've told. I don't tell people because I do AIDS-related work.
I felt some remorse afterwards: "I put myself at risk. How could I have done something like that?" I was telling myself what I have heard other people say: "You should have known better." And then I thought, "I based my decision on some information. Sure, you never know. But based on who he is and the information he told me, I trust him." He's still negative. He's been tested after we did what we did, and he disclosed that to me.
It taught me a lot. I learned that I'm vulnerable just like everybody else. And that I missed being able to do that with people I care about. And that I felt a lot of loss that we can't do that. That's a rule for me: I don't swallow cum. Have I done it since? No. Is it a temptation? Yes.
I would love to do that with someone in a relationship. I look forward to the day when I can swallow cum again. Someday I might fuck or be fucked without a condom, too, if there's information that my partner is negative over time. There would be lots of discussion and ground rules around this. If my partner did something outside the relationship, there would have to be some discussion. If he got fucked or was fucking someone without a condom, or if he swallowed someone else's cum, then we'd go back to using rubbers until he got retested. I'm confident that if I have a negative partner, we'll work something out. And if my partner is positive, we'll work something else out.
People have to be comfortable with all aspects of a relationship, and I think in the 1990s HIV status is an aspect of gay and bisexual male relationships. I don't think it should be the only factor in selecting a partner. I just think it is a factor for some people. This is really hard stuff to talk about.
Sometimes I don't like the thought of getting into a relationship and having my partner get sick and having to take care of him. I learned something from my relationship with Michael before he died. Even though we were no longer lovers, I was very connected with him. In some ways, I felt we were still in a relationship for a while. It was taxing. I didn't like seeing him change in the way that he changed. But feelings are feelings, and I cared about him.
What I mean is that if you feel something towards someone, and that person is positive, why deny yourself the beauty of getting to know that person in the time you have? But I had difficulty with that. I thought, "I'm too young for this." I saw what it took, and it was a lot. This sounds so insensitive. I don't like talking about it.
I find myself reluctant to talk about wanting a negative partner. I feel very private about it. When I'm dating, I think I operate from that principle, but I'm not honest about it. I want a negative partner, but I'm not going to tell anyone that. I'm just going to go about finding it. It's pretty easy to figure out other people's HIV status. If I don't ask, it usually comes out. Maybe other people are also secretly operating on the same principle. Maybe they want to find a negative partner too, even though they might not say it.
There are some positive men who only want to date positive men, and there are some negative men who only want to date negative men, and there are some men who don't care what their partner's status is. It's all okay. If somebody only wants to date negative men, that really is okay. It's being honest and telling the truth. Let's stop treating each other poorly and just go for what we feel we want.
The second time I got tested was to test the window period, in July of 1988. That was more anxiety-provoking than my first test. I had a lesbian counselor at Somerville Hospital. When I saw her come down the hall, I thought, "Oh, God, what does this lesbian know about gay men being infected with HIV?" But she was extraordinarily effective with me. She taught me to accept what my status was. I wanted it to be negative, and I didn't want anyone to tell me otherwise. I was terrified this was going to be the one that was going to show up positive.
We had discussions on the phone about getting the results. The counselor provided me with an opportunity to look at what the issue was for me. The issue was: If I was positive, who was going to want me? Until I was able to accept that I could be positive, I wasn't able to get my results. I didn't go back for the results until a year later. It took a year.
If I were to seroconvert to being HIV-positive now, I might feel I had betrayed myself, because I have made a commitment to stay uninfected. It would shake people up at work, because I work as an AIDS educator. I fear people saying, "How can an AIDS educator, who is supposed to be knowledgeable about safer sex, possibly seroconvert?"
I had a discussion with a straight friend last week about this very issue. He was shocked when he found out that a gay man he worked with had seroconverted. He was perplexed. How could that happen? We had an hour-long discussion about it. Basically the discussion was around being human.
Later I found myself resenting my friend's attitude. He is married and is probably not practicing safer sex with his wife. And yet he displayed a lack of understanding about why gay men might have unprotected sex. I found myself wanting to say, "Who are you to say that he should have known better? Is it just based on the fact that he is a member of a community highly affected by AIDS?" I resent that expectations are placed on the gay community that are not placed on the heterosexual mainstream. We are under heightened scrutiny. If we identify with the gay community, we are expected to have protected sex 100 percent of the time.
One of the most disturbing aspects of the AIDS epidemic has been the attempt to modify gay male sexuality. Noncompliance with traditional sexual mores -- such as sexual monogamy -- is singled out as the source of disease. Buzzwords like "sexual compulsion" and "sex addiction" have become vogue. The moral judgments placed upon our lives have all the attributes of a medieval inquisition. We're instructed through insensitive educational activities that the value we once placed on our sexuality must now change and we had better conform and learn to live "like everyone else." That implies we have not been living like everyone else and that there is some superior form of human relationship and sexual conduct of which we are not aware. Even our own community has sought to rehabilitate our sexual behavior through behavior modification in order to enforce new sexual norms.
Current AIDS prevention campaigns don't really give room for the reality of people's lives. The messages they deliver are absolutes like "Always use a condom, all the time, for everyone." Those messages do not take into account reality.
In my work as an AIDS educator, I experience a covert pressure to give a clear, concise message, and to damn well practice what I preach. If there's any discrepancy between what I say and what I do myself, I fear people will judge me as irresponsible or hypocritical. Putting myself to that standard is superhuman.
Remember my question: "Who wouldn't want to get fucked without a condom?" That has been something I don't want to say very much, because of the work I do. I have thoughts about saying that in a public forum and people thinking, "Oh my God, this guy's an HIV educator. What's he talking about?"
But until we're able to address the stuff we're not talking about, people are going to internalize it in a negative way. People are going to think they had better not say anything about their real-life difficulties with safer sex: "There's something wrong with me. I don't match up to the other men here." I worry about the kinds of risks people take based on that interpretation: "I must be stupid. Why should I bother taking precautions?"
We need a forum where people get a chance to tell the truth, to get rid of the heavy baggage people are carrying around, like I was. People need peer support and community support.
Sometimes I think we've forgotten to have fun. So much of our celebrations are focused on AIDS: the AIDS walk, the fund-raising dinners and dances. I need some diversity. I might want to celebrate some things that aren't about AIDS.
We have to learn again how to live. Doing gardening, restoring furniture, and some of the other domestic things I do are ways I've been able to reclaim simplicity, to reclaim growth. It's a way for me to see and revive life.
I'm tired of hearing about the transmission of HIV. I don't need that kind of information anymore. I know what to do to protect myself, what will and will not transmit the virus. That's not the issue. I need to address how I feel about myself: my work, my family, my significant relationships. I want to know how I can meet someone and be intimate with him, how I can enhance my life. Those are the things I need to talk about, because when those things are in balance, I am less likely to put myself at risk.
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Conclusion · Appendix A B C · Notes · Contributors