HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
MY MOTHER WAS ILL with cancer for a few years and I was her primary caretaker. I didn't want to deal with the knowledge of being HIV-positive while she was sick, nor would I have wanted her to know about it, because of the worry it would have caused her. I might not have been able to keep it a secret, so I waited until after she died before I got tested for HIV.
I wasn't sure if I'd be negative or positive. I was always alert to what might be AIDS symptoms: excessive fatigue, weight loss. I'd look at my skin and examine it more than I ever had. I found things that had always been there and are harmless. I felt a swelling under my arm and was afraid it was a swollen gland. My doctor said it didn't seem out of the ordinary. I was not ready to deal with a positive test result, so I decided not to get tested.
I worked up to it. It took me a lot of thinking over two or three years before I finally decided to do it. For a while, I believed the anxiety of knowing I was positive would exacerbate my condition, increase the likelihood that I'd get sick. I thought I'd stay well longer if I didn't know. One of the things that pushed me to get tested was encouragement in some gay publications that it was better to know than not know, because you could do things to improve your likelihood of staying healthy: prophylactic drug treatments, AZT, and other things. I had to work up to it over months. I kept telling myself, "I'm almost ready."
Another factor that led me to get tested was that I was anticipating quitting work and going to graduate school full time. A friend of mine in San Francisco had made a major financial commitment only after getting tested. That stuck with me. Before he made the commitment, he wanted to know his status, and it encouraged him to know he was negative. Before I quit my job to go to graduate school full time, I wanted to know I was healthy and that I would be able to carry out my plans.
I had a dramatic meeting with this person later. I was visiting him in California, having dinner with him, and I said, "I have something important to tell you, some good news, and it has to do with you. I recently got tested and I was negative. I remembered that you got tested before making a big commitment of money and energy, and that's why I did it." Then, sadly, he told me that he had recently tested positive. That threw me for a loop. My story evaporated and I listened to his story: he had tested negative several times; it surprised him when he found out he was positive; his lover of several years also was positive. I don't know if they're sure how it all happened. I gave him a long hug. The hug expressed more than words could have.
I don't know how I'm so lucky. I had unprotected anal sex in the early eighties. I got fucked numerous times by strangers. I tried once to count how many times and by whom. I came up with maybe 20 people from 1980 through 1985, before people used condoms. With that activity, I could easily have become infected. I'm glad it was in Boston. I lived in San Francisco until 1979. Had I done that in San Francisco, think of the risk. I'm here by great luck. It could be me in the hospice and not the people I see there when I volunteer.
I feel I've been delivered, given a second chance that other people weren't given, people who had exactly the same behavior as I did and who got sick. I've got a chance to be safe and not get AIDS, just through choosing my behavior. For other people there is no second chance.
I'm not a rabid religionist, but I have a feeling for what God means to me and I feel deeply grateful that I am HIV-negative, deserving or not. I feel grateful to God. I don't feel grateful to myself. I don't particularly deserve to not have AIDS.
So I feel a moral obligation -- almost truly religious -- to stay HIV-negative. If you have a relationship with God and feel God is instrumental in your health, and you know what sexual practices are safe and unsafe, there is a moral obligation to yourself and your values and your God to treat yourself lovingly. To respect the gifts you are given. When I don't take care of myself, I feel I've wronged myself and done something immoral in a way, by not protecting my health. I feel guilty about it.
Last summer my friend from San Francisco came to visit me. I knew he was HIV-positive. When I was visiting him in San Francisco, we slept together regardless of his status and had safe sex. I don't recall exactly what we did, but I felt comfortable with it, knowing he was HIV-positive. He's in the health-care field; I felt he'd be scrupulous and careful.
In August 1991, he came for a week in Boston and spent it with me. We went down to Provincetown and stayed in a fancy guest house. During that time, we had what I consider an unsafe sexual episode. We were having sex: mutual masturbation and some kissing. When he came, he was positioned over me. I didn't realize it right away -- being involved in my own self-amusement -- but he came in my crotch and the semen ran down near my anus. After I realized I was wet down there, I was upset that his HIV-positive semen was touching my anus. I thought, "Jesus Christ, of all the stupid things, the things you want to be careful about!" I didn't get angry with him; I didn't want to hurt his feelings. But I did let him know I was concerned about it.
I realized after he went home that I was angry and worried. I wrote him a strong letter, saying, "How could you possibly not have been more careful? I trusted in you as a health-care professional, as a friend who would look out for me." My feelings toward him won't ever be the same. I'll always wonder if he was knowingly careless, knowing that he was positive and I was negative. I don't think he aimed at my anus; he came on top of me. The way he expressed it to me in a letter and phone call later was that he didn't think it was particularly dangerous.
The problem was that I assumed a person who is my friend, who is intelligent, who is a health-care professional, and who is HIV-positive will come in the right way when he comes -- on unbroken skin, or not on me at all -- just out of caution. The reason I didn't discuss this with him beforehand was I didn't want to insult his intelligence. I thought it would be insulting to even suggest that he wouldn't be careful. Afterwards I regretted it deeply.
So now, I would certainly ask somebody if they're infected. I'd say, "Do you know your status?" That's a little more euphemistic. I treat everybody's ejaculate the same way, really. It's just that what happened with him was much more anxiety-producing and traumatic. Since that time, I haven't knowingly had sex with anybody positive.
If I ever had sex with somebody I knew was HIV-positive, I would say, "If and when you come, we have to do it this way: on my stomach, or my chest, or my leg. Preferably you just come on yourself." I feel like saying, "Be careful with your cum if you're positive, especially if I'm negative." I'm not afraid of saliva, some moist kissing if I don't have any cuts in my mouth. I would kiss somebody who is HIV-positive. I'm willing to take that risk. I am concerned about semen. Certainly somebody who is HIV-positive isn't going to fuck me, with or without a rubber.
I called the AIDS Action Committee hot line two times after that episode in Provincetown. Both counselors felt there was little likelihood of transmission. That reassured me to a degree, but not entirely. I told my doctor eventually. He didn't think it sounded too dangerous. I waited six months and got tested. Although I had tested two times before that, routinely, this was the first time it was worth having a test.
After that scary sexual experience, I was much more anxious when I went to get my results. It wasn't difficult to keep the appointment, but I was scared. I went to the same place I had gotten tested the other times and had the same counselor. I felt so relieved when I learned I was negative, I can't tell you. When I left, I resolved to volunteer, either as an AIDS buddy or at the hospice.
Although I've tested negative, I've never felt secure that I'm negative, never absolutely. I'm still nervous about false negatives, just thinking about it. Something like 96 percent of positives will show up after six months. I'm still scared I could be in the other 4 percent, so I'll be nervous the next time I get tested.
If I continue to be active sexually, I'll probably get tested every year, because I don't feel what I'm doing is 100 percent safe. And suppose I didn't have any more sex: I guess there's still a little anxiety about the past.
I feel a tremendous pressure -- an obligation -- to keep myself negative. I'm responsible from now on for not becoming infected. I can't take credit for being HIV-negative. But I can take credit for staying HIV-negative.
Suppose I lose willpower, engage in unsafe sex, and get the virus. I'll probably go through a period of terrible emotions, including guilt. I'd feel stupid, really dumb. I like to think I'd be easier on myself. I hope I would forgive myself and other people, make peace with it, and not condemn myself. I've seen people with that serenity at the hospice where I volunteer.
I think I'm more motivated to stay negative, having found out the lucky result. I feel I got something tremendously valuable by getting a negative test result. I want to protect that wonderful gift. I worry about career, money, having a lover, and other things, but I can't think of anything more precious than having an HIV-negative test result. Maybe somebody who is positive would feel offended by that. I feel a little troubled saying it.
There are some cruisy areas in the Blue Hills, south of Boston. There are miles of marked hiking trails. Both on the marked trails and off, beaten paths have been created in certain areas by horny gay men. People cruise each other, talk, meet, take walks, play there. Sometimes they go other places to have privacy. Sometimes you see condom packages and condoms, a pair of underwear, or a porn magazine. Condoms indicate that maybe people are fucking in the woods. I've seen plenty of blow jobs. That's common. It's not unlike any outdoor cruising area anywhere.
Bars used to be my prime place to meet new sexual partners. An ear condition I have makes it uncomfortable for me to go to loud bars, so my carousing has decreased. I'm not entirely displeased with not going out to bars as much. When I have a couple of drinks and it's late and I'm tired, my judgment is lessened, my willpower is lessened. Instead, I meet people in the Blue Hills. I like hiking, getting exercise, not just visiting the cruising areas. I might meet somebody and go home with him, if I want to. Safe sex is a big issue, still, but at least I'm not having any drinks there, so my judgment is strong.
I might jerk off with somebody in the Blue Hills. I don't feel it matters what their status is if I jerk off with them. I met one guy there who didn't look terribly well and I wondered if he had AIDS. And yet we played around. He went down on me.
It's easy to be safe if you're just masturbating. But some people want to suck dick. Suddenly they drop to their knees and they're sucking your dick. They've chosen to not care about the risk they might get from me. I assume I'm negative because I've tested negative. But what am I exposing myself to in the other direction? I believe there's no proven transmission of HIV that way, but certainly there's opportunity for other sexually transmitted diseases. I feel a little uncomfortable. Suppose somebody is carrying the virus. Can he transmit it from his mouth to my penis? I think probably not. But it goes through my mind.
Once in a while I'll take a guy's penis into my mouth. I don't do that very much, but once in a while I do. There's risk in that. I don't know how much. Very small, I think. I'd prefer to avoid having cum or precum in my mouth. I've lost much desire to go down on strangers. I used to like that years ago. That was a hot thing. With somebody I was getting closer to, dating, I'd probably want to do that among other things.
Occasionally I'll engage in aggressive kissing with somebody, with a lot of saliva. I don't know if I have any microscopic cuts from eating pizza with a sharp crust earlier in the day. I get canker sores every now and then. Who knows? Maybe in their saliva there is a little HIV "virus-ette" and it lands right on a canker sore. I know it's really a minuscule chance, but still it feels very good to get tested and find out you're negative.
Some people have come home with me from the Blue Hills. I like it when people mention safety, or if they agree when I mention it. I don't go over the menu or the specifics, necessarily. When you're going to have sex with somebody -- this may be more true with a trick, where you hardly know each other -- you don't want to destroy the mood. If we refer to safe sex when we've met, that means that when we get in bed, it's going to be easy to bring it up, because we've already said it and we both know we agreed to it, at least nominally. I feel comfortable saying, "I don't feel safe about this." I do not mind being specific about what I consider safe. I can easily have that conversation with people, and I have.
I've discovered the phone-sex lines in the past six months. I've had phone sex a number of times. There's a routine way people exchange information: What town are you from, what's your name, what are you into? People sometimes say, "Anything safe," or a few specific things they like to do. It's interesting that people mention safety even if you're not getting together. They're expressing themselves and their personality, even though there is no risk in having sex over a telephone.
The recording on the line says you should not give out your home phone number or address. But the computer cuts conversations at certain points; you're only allowed to be on half an hour. You can lose track of time and be in the last moments when you're cut off. So people give each other their real numbers. I have met three or four people that way.
People have a variety of attitudes towards safety, especially people in their early twenties. They seem to be more cautious. They grew up in the age of AIDS. Some of them have never entertained the thought of fucking. When I was in my early twenties in San Francisco, you either had tried it or were going to try it. Nobody didn't do it because of safety reasons; you only didn't do it because you didn't like it.
My first reaction when I heard about the HIV-Negative Support Group in Boston was that it was a silly, superficial thing. Maybe a snotty thing for HIV-negative men so they could meet each other and shed tears for people who are HIV-positive. It sounded a little elitist: "Hey, we're all negative. We're all clean. We're all pure." Most of it is not that. I realized, "My God, I found out I'm HIV-negative and yet I'm still anxious about it. The group must be for me." There are no other groups specifically having to do with being HIV-negative and where you go from there.
I wanted to go to the HIV-Negative Support Group before my HIV-positive friend arrived last summer. For some reason it didn't work out; I can't recall why. The first time I went to the group was after the traumatic incident where my friend came on me and for me it represented unsafe sex. I regretted that I had not been to the group earlier, because I might have asked for some ideas from the group. Somebody might have said to lay out the ground rules before we had sex. I might have done that. It might have been very useful for me. But the timing was wrong.
I told you how much I value being HIV-negative and how grateful I am and how I'd like to protect that. Just hearing somebody else say that would reinforce it in me and make me feel that other people feel that way. I want to hear negative men stating what they do to stay negative, their fears, and their desires -- gut-level stuff.
What it all boils down to is this: What does sex mean to people? What does not having sex mean when you have to give it up? Why are we driven to have sex? Is it purely hormonal sexual drive? Or in gay men does it meet multiple needs? In some respects, sex is an answer to loneliness. It fulfills a need for intimacy, closeness, and love. Promiscuous sex can be a temporary filling of an emotional need.
What do I get out of sex? Is there love missing from my life? Companionship? Is there an aching loneliness that sex in the woods seeks to fulfill just for a short while? Does it meet deep emotional needs, even if it's through ultimately unsatisfying transitory encounters?
Sometimes I get into a pattern of seeking sex and stop thinking about why I'm doing it. It's hard to figure out what sex is answering in my life, but if I gain some insight into that, I might be able to say, "Maybe I don't have to have sex in that way. Maybe I can get my needs met in some other ways." It's an idea I'm curious about exploring.
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