HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
THERE WAS A TIME when I secretly wished to be HIV-positive. I sensed within the community a caring I hadn't seen before. It took the form of the AIDS Action Committee in Boston. I started as a volunteer there in 1983 or 1984. I witnessed so much loving and caring between caregivers and people who were infected that I was envious. I've always been looking for a community that is nurturing, caring, and inclusive. But I wasn't infected. I didn't think I was. I didn't know.
I used to think I needed to get love and affection by being sick. I don't believe that anymore. I've come to realize that a lot of the people I thought were giving love to the infected early on were in many ways fulfilling their own needs rather than taking care of others. It was creepy in a way. There was a time when my relationship with people who were ill was creepy too. I really wanted to save them.
When I think back to two men that had AIDS very early on, I remember being at one person's bedside at the hospital, to give him foot massages, clear his throat, and so forth. He wasn't a close friend; I was helping him because his family more-or-less orphaned him. Early on, I wanted to be what I thought others were to people who are sick. There were models I wanted to emulate.
The other person I was involved with was in the later stages of his illness. He and I slept together. We didn't have genital sex, but we kissed. I remember I stuck my tongue in his mouth. I wasn't thinking I might give him anything. I just wanted to probe, to kiss deeply. He said to me, "No. It's both for my good and your good." I wanted to care for him in a special way. But my caregiving was patterned on the caregiving I was most familiar with from my own family, which was not caregiving in the best sense. It was conditional and self-serving.
That's changed a whole lot. I am trying to figure out what the true way is for me to be caring. I have a friend now in the later stages of AIDS. He has had everything: pneumocystis pneumonia, cytomegalovirus, Kaposi's sarcoma. My relationship with him has been very different. I think the work I've done for myself to get at the core of my issues has helped me. I haven't been a doormat. I have had boundaries. The kind of caring I have for him is not so much to take care of him as to be there for him.
The only way I can be there for him is by being wholly with myself. That's a challenge in itself, to be present with myself and my emotions, whatever they are, whether anger, confusion, jealousy, rage, or sadness. In the past I have been reactive to my feelings. I've judged myself on the basis of what I'm feeling: "It's not right for me to be angry." I'm owning my feelings as best I can, and it feels good. I'm learning, little by little, how to take care of myself.
It's been a process for me to come out fully as a gay man who is free to do what he wants, free from the shame and guilt associated with gay sexuality by culture or religion. I had a lot of shame -- deep, deep shame -- around wanting to give blow jobs, swallow semen, or get fucked.
Before AIDS, I would sometimes have a dry period for a long time, and then I would have anonymous sex with multiple partners in the course of a week. Invariably after those experiences, I would develop symptoms, and I would go for a test for sexually transmitted disease. The cultures and blood tests were always negative. That happened repeatedly for many, many years. My fear of sexually transmitted diseases is something it may take a lifetime to get rid of.
Part of me felt it was wonderful to have sex with as many men as possible, to pleasure other men and have my needs taken care of as well. A lot of the settings for anonymous sex were outdoors. Part of me felt, "It's beautiful, it's dark, the moon is out. There's a lovely breeze. There's an energy." Then on the other hand, "There are rats around here. Why do we have to do this in the dark? Why can't we be 'out'?" That conflict really points to our culture: we are not free to be who we are, so we need to hide.
Another part of me felt I was looking for a deeper connection, and it never happened with anonymous sex. I imagined that in a monogamous relationship my needs would be fulfilled. I'd be more involved with the person on an emotional level, and he'd be more involved with me. In a monogamous relationship, there is an opportunity to create a comfort level between two people: I can comfort him and he can comfort me. I value that. It didn't seem as though I was able to feel that kind of comfort in an anonymous setting. In my mind, there was little value in anonymous encounters.
So anonymous sex was a failure for me. It was a way for me to perpetuate the idea that I was a failure. I think it had a lot to do with my poor self-image. I felt defective anyway. This was a way to keep it going. I feel differently about that now. I don't hold the same value judgment against anonymous sex as I did before. It's probably a combination of material I've read and people I've met whom I respect and admire. And also just trusting myself.
It's not smooth sailing, by any means. I have times when the old stuff comes back. I may have an encounter and develop symptoms the next day -- a sore throat, say -- go to the doctor again, have a culture done, and it's negative. But there have been other times when I've had anonymous sex and felt it was just fine. It's a process.
When the AIDS epidemic started, I was petrified. I wanted to continue to be sexually active, but it was a confusing time, full of fear. Falling into the pattern of my fear of sexually transmitted diseases, I would get tested for HIV after an anonymous sexual encounter with exchange of body fluid. I've been tested four times.
I remember feeling quite horribly about not knowing whether somebody was positive or negative. You had to assume people were positive. Trust has always been a big issue for me: trusting myself or trusting others. What happened was it stirred up in me a lot of feelings about mistrust. Sex became more clandestine. If it was already repressed and we had to go to dark corners to have sex, it was getting even worse.
For a long time I assumed I was negative, that AIDS could not happen to me. I didn't feel I was part of the mainstream. I wasn't doing drugs and didn't think I was having as much sex as other people were. There was an underlying belief that I was negative and that I wouldn't contract it.
In a strange way it didn't matter whether I became infected or not. What mattered was if I infected somebody else. I was always afraid somebody else would become infected. If a person wanted to have anal sex and I was the top, I would insist on putting on a rubber. If there was no negotiation and the person just wanted to fuck me without a condom, I'd let him. If I wanted to suck a man off, I would, because I enjoy it so much, and it wouldn't matter to me that I would swallow the cum. It just wouldn't matter. But I feared that if I was infected and somebody blew me and swallowed, he might get infected. I would feel bad when that happened.
For the most part I was a bottom. A lot of the anonymous sex took the form of my servicing others, who would then walk away. Because of the form a lot of my sexual activity took -- being receptive, passive, the bottom -- I felt I could be at risk.
I struggle with low self-esteem and a tremendous amount of self-hatred. I have been very drawn to people who look rough, like horny heterosexual construction workers or homophobic athletes who want a blow job. There's a thrill in that. I think it's about abuse, about being bonded to one's abuser. In a strange way, I feel a person finds me attractive if he abuses me.
In my family, there was always a need for me to please others, because if I didn't, I would get punished. I got punished anyway, but I thought I needed to please. Because my parents' marriage was arranged, and because of conflicts between my mother and father, and because I was the only male child, I was placed in the position of surrogate husband to my mother. My part as a child who wanted to please was to be her caretaker from a very young age. There was what I consider sexual abuse: I remember sleeping with my mother, us being naked, and there being genital contact.
The shame I have today that I'm still working through is that I don't know whether I wanted it, whether I wanted to go back into the womb. But I have the feeling that I was being manipulated, that I was being used to take care of my mother in some way. I was estranged from my father and heard terrible things about him when I was young. I believed them, because very often he was drunk. He had alcohol for breakfast, lunch, and dinner. All I remember is his anger. And being a little fairy, and hearing him express that.
As a little boy, my sisters used to play with me like a little toy. They would paint my fingernails and put me in their hoop skirts. I loved the petticoats. I got off on it. It was okay for them to dress me up and paint my fingernails, but when it became clear I was getting into it, then I was called a fairy.
The other form of abuse that took place was with a sister who seemed to hate me from a very early age. There is a photograph of my family when I was two years old, and in it this sister is gripping my hand. I have a grimace on my face. I remember being physically abused by her, being beaten. She had one wonderful tactic: to stick her fingernails into my wrist until it started to bleed. The brunt of the abuse I experienced took the form of verbal abuse and criticism. I could not disagree with her. No one, in fact, could disagree with her. It was quite remarkable. I was literally her slave for years. I had to do everything she asked. There were no boundaries. She wanted to physically dominate me and keep me pinned down. She is a controlling person to this day.
Does this influence the way I express my sexuality? It must. I don't know whether I am in control by being passive, or if the other person is in control. I really don't know. That is a difficult question for me to answer.
There was a time in 1984 and 1985 when I was abstinent, for a while anyway. The form my sex took was in fantasy. I remember telling other people to use condoms. I was invited to a red and black Valentine's Day ball and I wore a tuxedo with a red tie and carried a chocolate box. When I revealed its contents, it had condoms instead of chocolates. That was in 1984, and I felt hip.
I remember visiting a friend in New York City. I had an idea we might have sex. I told him I wouldn't swallow and I wouldn't take it up the ass without a condom. I did both of those things with him within an hour: I did swallow, and he did fuck me without a condom. It just happened. I felt some guilt and shame around that, because I was a mouthpiece saying, "Safe sex is important," and not doing it myself. For the most part I wasn't getting fucked at all. It was oral sex most of the time.
Along with talking a good talk, I did bring condoms with me. I wouldn't always use them, but I would bring them with me. If I was going to suck somebody off, I would say to myself, "You have a condom in your pocket," but I would never use it. I don't know if I have a strong connection between cause and effect, between my thinking and my actions. It seems as though there's a missing link. I don't always behave the way I think I ought to.
Part of my nature is to not trust myself, to defer decisions to others. The people who were the most outspoken about not being tested were people I admired and respected, people at the forefront of the AIDS Action Committee, for example. They were strongly opposed to it. So for a while I was saying, "They must be right."
There were political implications: I didn't like the lack of confidentiality, and the idea of a government agency having a list of people's names. Most of the opinions strongly in favor of taking the test seemed to be coming from reactionary people, conservatives. There was talk about quarantine, isolating gay men and keeping them on an island somewhere. Putting a tattoo on your wrist, like in Nazi times. I remember agreeing it was not in my best interest to be tested.
Then I remember that opinion changing. Attitudes changed. People were saying it was better to know your status as early as possible, because either your sexual behavior would change or you would be able to have treatment early. I've forgotten which came first. It was important to know your status, or to know the status of another person, so you wouldn't infect another person or become infected. That was the value of testing at first. But I think soon after that they were offering AZT or pentamidine.
I don't know if I was really persuaded, but I took the test upon the suggestions of people I trusted. Many friends I had had sex with were dying: over 15 people I've had sex with are dead. I guess I wanted to see whether I was among the dying or among the living.
The first time I got a negative test result I was in disbelief. And also regret: I still wanted to be positive. I wanted to die more than I wanted to live. I am aware of my self-destructive tendencies. To be very honest, I have felt my life is such a mess that it would be better if I were dead than alive, because of the struggle. I've experienced a lot of despair in my life and a lot of hopelessness. Being HIV-negative means to me that I'm going to be alive for a while, especially if I have safer sex.
One part of my love of sex is swallowing cum. I feel as though the person -- their seed -- is inside of me, even though I'm not going to have a baby. It's valuable. I don't know if it's tribal, ancient, or what, but I think it's important to be able to drink another man and have him drink you. My very first lover fucked me, and as he was coming, he said, "My seed is in you for eternity." I felt a warmth of love when he said that, and when I fucked him, I said the same thing.
There are times when I want cum so badly that I fantasize going to a straight man who is uninfected or a gay man who is uninfected and asking him for his cum. Like going to a sperm bank and asking, "Can I borrow some?" I have fantasies about getting cum from a 16-year-old kid who has never had sex. I hate to make it sound like I'm addicted to a substance.
I know there are plenty of guys who don't like it. I had an experience with two men in an anonymous setting. We had been talking. We had established a kind of rapport. I wanted to blow both of these guys. One guy was an old pro. The other guy was new to the scene. He had voiced his concern about safe sex, and all he wanted to do was jerk off. When I introduced the idea of giving him a blow job, he seemed receptive to it. But it didn't happen. He said, "To tell you the truth, I really don't like oral sex." You know, I just don't believe that. Granted, I didn't know him well. I hadn't known him for a long time, but part of me intuits that he was trying to say, "No, I don't want it," and the best way he could do it was by saying, "I don't like oral sex." I know of very few men that don't like to get blown. I wonder if that's what our community is doing to itself.
A lot of my personal struggle has been learning to perceive myself as an empowered person with options and choices. When I was a kid, all I heard was, "You have no choice in anything."
I believe that having unprotected oral sex and swallowing cum is something I want, and I'm willing to take the risk. I've fucked somebody without a condom who was HIV-positive. I know they say that getting fucked without a condom is definitely the riskiest behavior. I don't think I would get fucked without a condom. I don't want to become infected. Fucking someone who is positive is less risky in my mind. I have taken that risk. There are times when I think I'm making a mistake. It's still unsettled.
Being able to make choices has been a struggle for me all my life. I have believed that I cannot make choices. So this is a big coup for me, a real victory. I'm taking a stand, definitely. And in a strange way I think I'm dealing more realistically with my own mortality. I'm not inviting death. But I'm saying, "It might happen." I may choose not to be fucked without a condom, but I may continue to have oral sex and swallow semen and run the risk of having exposure.
On a metaphysical level, it doesn't matter whether I'm positive or negative, because I'm going to die some day. And that's not being fatalistic. I don't think so. It really is a matter of deep strength or faith or courage or something like that.
A lot of people -- whether they are gay or straight -- have a fear of being infected. People are afraid of death. There are people who are negative who stay away from people who are positive because they don't want to catch it. They don't want to be safe for the first six months of an ongoing relationship and then slowly slip and do things that are less safe.
As recently as January, I was involved with somebody who was positive. This guy was very handsome. I was very attracted to him physically and emotionally. I met him at a New Year's Eve party. He and I had a wonderful interaction; we were very present with one another. We sought one another out throughout the evening. He was drawn to me and I was drawn to him. Then we talked on the phone.
As I got to know him, I really wanted to suck his dick without a condom, and I did it. At that point, it did matter to me whether I got infected, but I still wanted to do it. We deep-throated like crazy. There was precum, but he wouldn't come in my mouth. That was his boundary. He was concerned that he was going to infect me. Part of me feels bummed out because of my inability to follow through. And I had unprotected anal sex with him. I was the top. I just really wanted to fuck him without a condom. I was having trouble keeping myself hard with a condom. Put a condom on me and I get soft.
Other dynamics caused us to drift apart. What happened is something that happens to me often. I do work on myself emotionally through therapy, and I get in shape physically through exercise. I feel attractive enough to give it a try, but low self-esteem undermines that confidence. That little bit of confidence is like a bud. Before it can flower, I nip it. I start believing I'm not good enough, or the other person doesn't really like me. I start doing things to sabotage the relationship. I overeat. I stop doing exercises. If the person doesn't like smoking, I've picked up smoking. It's one of the deeply rooted core patterns I have.
There was also a lot of fear on my part of becoming positive if I became willful -- let me use that word -- and decided I wanted to. Let me put it this way: A lot of the sex we had involved tying him up. If he's tied up, I can do whatever I want. I can blow him and have him come in my mouth even if he doesn't want to. Even if his boundary is clear, and he doesn't want to exchange body fluids, and he wants me to wear a condom while I'm fucking him. If that's what I want, to be in control and be willful, then there's a chance. If we're in a relationship, I think there's always going to be a chance.
I've heard people whose opinions are very judgmental. There are gay men who condemn others: "He fucked around. That's why he got AIDS. He liked to get fucked every day. Look what happened to him." I've heard that a lot.
One of my sisters wrote me a letter and the tone was condescending: "AIDS is what happens to people who are not innocent. By the sheer fact that they are doing what they want to do, they are guilty. They are not innocent, and that's why they have AIDS. If you get AIDS now, it's your fault. You made a mistake. You should know better."
She doesn't know who I am. I tried to tell her by telling her I was gay, by coming out to her. In her mind, perhaps, a lot of what being gay is about is sex, so that's why the focus of the letter was about that. I think she probably would blame me if I became infected. I think she would be as caring as she could be, and sad to see me go, but I think on some level she would feel I did it to myself.
My mother is 80 years old. She certainly loves me, and knows I'm gay, but has a very hard time with it. She is deeply distressed. She doesn't understand my sexuality. She thinks a man and a woman are supposed to be attracted to one another in order to be human. There's a dick and there's a cunt, and one fits in the other. It doesn't work any other way. She's not a source of support. She's a source of anxiety.
I have told people that I've fucked somebody positive without a condom, and I've gotten reactions of horror, disbelief, and anger toward me. I believe their fear for themselves is behind that. A lesbian friend of mine, on the other hand, has compassionately voiced concern. I don't read it as disapproval. I read it as her saying, "Take precautions as much as you can."
Twelve-step work has been crucial to my process. The 12-step work includes Survivors of Incest Anonymous, Adult Children of Alcoholics, Sex and Love Addicts Anonymous, Overeaters Anonymous, and once in a while, Co-Dependents Anonymous. I probably am an alcoholic, but I don't go to Alcoholics Anonymous. Alcohol is not my substance of choice, but if there was a bottle of wine here, I'd probably finish it off. If there was a birthday cake, I'd eat the whole thing. I could abuse almost anything.
The issue is not the cake. It's not the wine. The issue is self-hatred. If I can soften my judgment of myself, then I'm better off. I've had a bottle of wine at dinner with a friend and had a rich encounter and didn't feel it was not sober. I've had food I'm not supposed to eat and it felt okay. I've had anonymous sex with people and felt okay about it. A dignity of self that I never had before is being restored to me. I can have my cake and eat it too.
The 12-step work allows me to see that I can manage my life if I do certain things. My goal is to be in conscious contact with a higher power, even though that higher power may be inside me. It's almost as if in my head there's one identity and self-image, and in my heart there's a different one. When there is more of a balance of heart and mind, that's the truer me.
The HIV-Negative Support Group that meets once a month in Boston has been remarkable. It's like I'm ripe: it's time for me to start talking about things that really matter to me, and that's where I talk. I don't always feel I'm understood. People sometimes try to give advice when it's not asked for. There's "cross talk," as we say in 12-step programs.
I learned a lot from the 12-step stuff about giving and receiving. There's a trust that develops in a group of people who come consistently. They begin to see that they can rely on the other people there. The people I rely on are the people who show up regularly. That's a form of service. Not only am I giving, but I am also receiving.
If I seroconverted, would that mean I couldn't come back to the HIV-Negative Support Group? That has been a real fear of mine, because I haven't been tested since my risky activity in January and February. If I were positive, I would have to be identified with a different group. There are support groups for positive people, but I would miss the people in our group.
I don't know what it means to be a survivor. It's a mystery to me why I'm still here. I don't know what the hell this is all about, to begin with. I want to learn more about the spiritual transformation or awareness that has been a part of the AIDS epidemic.
A lot of times in the gay community there is a cult of beauty and youth that looks only at the outside. That's okay for some people, and it's okay for me sometimes. I don't deny that I am attracted to young men with great bodies -- or older men with great bodies, even. But I'm also seeing other things. That inside stuff is what I feel is a lot more valuable. I place a value on it.
I have a friend who has AIDS right now and his body is covered with giant Kaposi's sarcoma lesions. He's had chemotherapy treatments and is very thin right now. If he said, "Let's make love. I want to be held. I want to be caressed," and he told me what he wanted and what he didn't want, I would definitely do it. It's not because he has great bulging muscles. It's because of who he is. The epidemic has changed that for me.
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Conclusion · Appendix A B C · Notes · Contributors