HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
AT A CERTAIN POINT I felt there were only two responses to make to AIDS in New York City: move or die. It was that big a phenomenon for us. The sad thing is that a lot of the guys who left New York at about the time I did are now dealing with AIDS in Los Angeles, San Francisco, the Midwest, and Washington, D.C.
I thought I was pretty definitely infected, because I lived in New York City from 1969 until 1981. As I was leaving, the acronym for AIDS was GRID: gay-related immunodeficiency. Having been sexually active in New York during the seventies -- really joining the general sexual freedom going on that decade -- I thought, "Why not? Why wouldn't it be something I have?" Especially around 1985 or 1986, when I started to get reports of HIV-positive test results from friends who had been in New York, and when I started to experience the first illnesses among friends, and shortly thereafter the first deaths.
There was a period when people in the medical profession were not recommending the test. I was stunned. Why would a doctor tell you not to get tested? At that time, doctors did not know what to do with that information. This is before treatments actually existed. It sounds like a light-year away, but that's what it was like in the mid-eighties, before AZT and any other drugs had been developed.
I decided to get tested because of a combination of things. We were starting to hear about treatments, so testing became much more encouraged from the medical profession. Anonymous test sites were available; that certainly was an encouraging sign. Friends were getting sick; that became a clear example of the fact that this disease was out there. It wasn't just people I didn't know. It was people I knew. A few friends tested and found out they were negative; I suppose that was encouraging. The more that people in my friendship group got tested, the more comfortable I felt to do it. In 1988, a support group for people affected by HIV started at my university workplace. There was some encouragement in the group to find out what your status was, without requiring you to do it.
I shared that I was getting tested with close friends. I shared it with people I knew who had been tested. I was probably trying to find out from their experiences what it might be like. I was trying to change something unknown and scary into something I might know about, so I would be prepared for the ways I might react to it. The people I shared the news about testing with were people I could trust, people who would accept either result: they would be happy if I tested negative, and supportive in a broad range of ways if they found out I was positive.
In fact, I took someone with me to the first testing. For first-time testing, it's helpful to have someone there you can share the news with in a very immediate sense. Ironically and sadly, the person who came with me to my first testing was someone who had tested negative and since that time has converted. He has just had his first symptomatic diagnosis -- a two-week hospitalization with pneumonia -- and is now out of work on disability. His life has dramatically changed in the past three months.
Beyond the sadness I feel, he was a real example to me of the possibility that you can test negative and then -- after time, with additional sexual behavior -- you can find the result going the other way. You would think I would know that without needing a personal example. That has had a reverberating effect on me in my second and third testings.
My sexual behavior has changed gradually over the last four or five years. Before testing, there was the awareness that something was out there, the beginning of discussion of safe-sex standards, and then a kind of denial: there were "those people" over there who were getting sick with their sexual behavior, and I was over here being well with my sexual behavior.
I think back on it now and wonder why I'm not positive. I don't know what I was doing differently than other people. There are maybe two or three things I can say. One is that I had no heavy drug use. A second thing would be that although I had an open sexual life, I did not have multiple partners to the extent that you hear among some men. And a third thing would be that in terms of anal sex, you could call me a top, the insertive partner. That's just a preference of mine. That might have been somewhat related to a reduction in risk.
There was a time before condom use became generally accepted and required, where -- after great anal sex with someone where I was the active person and also the receptive person -- I realized something that beautiful could in fact cause transmission of HIV. That wasn't a great feeling at all.
The use of condoms for anal sex certainly became a much more accepted standard of behavior. I'm sure it had a lot to do with the first free handouts. That was very impressive in the gay community: in bars and other places you literally had condoms given to you, with the encouragement to use them. They became a physical presence in my car, on my person, in my house, in the bathroom, by the bed. I wouldn't say I used them 100 percent of the time, but I started to be a more conscious user of condoms for insertive anal sex.
But there were parts of my behavior that didn't change at that time. Oral sex without a condom, all the way up to receiving cum in the mouth, did not change. Rimming prior to anal sex did not change.
During the last two years, I've certainly stopped receiving cum in any oral sex situation. Cum became something that was best kept out of my body. Anal sex without a condom is unthinkable. And rimming is something that people have generally moved away from. I have too. Have I given up oral sex prior to coming? That's a good question. I'm certainly moving in that direction, just to feel comfortable. Have I given it up totally? That's a question I have to answer for myself right now. It's a process.
My sexual activity is way, way reduced. My libido is not as driven and my looks are not as compelling as they were when I was younger. I have no control over that. I jokingly tell my friends that aging is one of the better safer-sex devices in my life.
I have a friend who told me, "If all I have to look forward to is vanilla sex for the rest of my life, I think I'm just going to give up sex." He was speaking humorously, but I know for a fact that he has gone through periods of three, six, maybe nine months where no man has slept in his bed. I can see how he feels. If sexuality goes back to the stuff we did as teenagers, hugging and kissing, mutual masturbation, I don't know how I'll feel. The giving up of the last few things is probably not as big a barrier as I thought it was earlier.
It comes with great sadness, I have to tell you. I don't know that the gay community is willing to admit what the loss of free and comfortable sexuality in our lives means, individually and collectively.
In an area in life where one of the purposes is to be uninhibited, we have had to bring inhibition. It's compounded by the fact that gay people have had to deal with conflicted feelings about sexuality from the get-go. From the moment you knew you were gay, you knew it was not a generally accepted norm of sexual behavior. Now you might be comfortable with your sexuality, but what you can do in bed has to be restricted.
To find a negative man you can fall in love with and not have to practice safer sex with sounds like a wishful, hopeful, dreamy kind of scenario. You have to have great faith in the person telling you truthfully what his HIV status is. And I'd have to have great faith in the test being absolutely perfect. I'm too cynical to believe either one of those right now. I'm sure it can happen. For the people that can find that, go for it. Do I think it will happen to me? I don't know. I don't think in those terms.
I don't ask anyone's HIV status. I've come to the point in the last few years where I think that everyone that I sleep with is potentially HIV-positive, whether they know it or not. It certainly cramps your sexual style, doesn't it?
Why do people who are negative have unsafe sex? Because it feels good. There's just something about flesh on flesh. There's something primordial in human beings' need to have genital contact. I haven't read any anthropological reports on this, but I'm willing to bet that there's something so primal in our nature as to make that a requirement almost. The pain that the gay community is feeling right now, and anyone who is practicing safer sex, is the barrier between the genitals and the mouth or anus. We have to accept in our sexual lives a barrier to tactile sensations. That is very, very, very difficult. That's one reason why people who are negative practice unsafe sex.
The second reason for older guys could just be habit. We've had a number of years of unprotected sex. How do you go about changing that kind of behavior? It's like telling people, "There's something very dangerous about eating, so when you eat you have to do a certain amount through this kind of barrier, and a little bit more through that kind of barrier. And solid foods aren't good for you any longer, so everything is going to have to go through a blender." Eating and sexuality are among the three or four primary urges we have. And now we have health reasons to take one of those primary natural urges and say it has to be performed with a barrier against fluids that could carry disease. That was profoundly difficult for me to do, and it continues to be. I don't think I'm the only person who feels that way.
Third, some of my friends feel -- and maybe I do to some extent -- that if you practice certain kinds of sexual behavior and you test negative, then that becomes a validation for your behavior. I'm moving away from that kind of thought: "What I'm doing must be okay, because I keep testing negative." I don't want to use the test to validate my behavior.
How can it be that -- at my age and with my education -- I could not just immediately change my behavior? I think the answer is that I could understand the concepts behind safe sex in an intellectual fashion, I could hear the messages and rationally understand them, but I could not turn them into behavior in a very short period of time. When I ask that question, I'm not beating myself up so much as I'm trying to figure out, "Why is that? Why did it take that period of time between when I knew this intellectually and rationally, and when I could incorporate it into my behavior comfortably and consistently?"
There have to be some lessons that we draw out of the epidemic, or we'd all be a little crazier than we are. In my friendships now, I try to be more of a passionate hugger, or hand-holder, or kisser. Genital sexuality is not the only way to be expressive about how you feel about someone else. If you have to put rubbers on part of your anatomy, then there are other parts of your anatomy that you don't have to cover up. I'm finding ways to express love that aren't genital. That may have something to do with age, too.
Other positive things are that you think more clearly about what it means to be involved in a sexual act. The seventies in New York were an incredible high of instantaneous meetings of people and situations that could become sexual. Some of them were wonderfully beautiful. Ten or fifteen years later, those kinds of spontaneous sexual meetings now have to be prefaced by some knowledge. That could be positive. That's not to say that those other experiences were negative. I would never want to take away from the kind of fun that sex was during that period. We have had to stop and think. And those who have been very affected have become more caring people. We've had to.
The HIV support group at my workplace started more than four years ago. It meets once a week during lunch hour. It's facilitated by a social worker, Nan, who does not call it a therapy group because she doesn't think of it as ongoing therapy. She thinks of it as a safe and confidential place where anyone who is infected or affected by HIV can talk about it. Over the years, anywhere from eight to a dozen people will show up on a given Wednesday for the lunch hour. Half of them might be dealing with the infection. The other half might be friends of, mothers of, brothers of, daughters of, wives of the infected. Those are the kinds of people there who are HIV-negative.
We've talked about how we feel about each other's status. For example, when someone comes back to the group with an HIV-negative test, we usually say that to the group. And Nan, the facilitator, will say, "I'm glad to hear that. Could we talk about how people in the group feel about that?" Because we meet regularly, we have become pretty close friends. The guys who are positive will say, "I'm happy for you. I'm glad somebody is going to get out of this alive. But I'm also a little sad, I'm a little angry, I'm a little jealous. I can't make a big deal out of your HIV-negative status. I'm sorry. I've got too much to deal with here on my own."
HIV-negative people have said on occasions that they feel reticent about bringing their issues to the table until all of the positive people have had a chance to say something. A kind of hierarchy seems to overcome us. Why is that? I think it's because we have this human belief that the people with the greatest need merit the greatest attention. In an HIV support group, there are almost always those who are dealing with the infection and its ramifications: they are hospitalized that week; they've just gotten out of the hospital; they're trying a new medication; they've had a bad week; they've had a good week; they've had to talk to family or friends about this. All of those issues seem to have an urgency beyond what a negative person brings to the table.
We've talked quite openly in the group about how everyone's concerns have a legitimacy that doesn't have to be hierarchical or prioritized. We know that. We're all intelligent enough. But even knowing that intellectually doesn't help you avoid thinking, "This is the person with the greater need."
When the first meeting of the HIV-negative group took place two years ago in Boston, the title was "It Can Be Hard to Be HIV-Negative." That caused a row at the group: "You think you have it hard? Try the other side." When I came to the first negative group, I remember somebody asked that we talk about it in a more neutral kind of way: "Why not just say it's a support group for people who have tested HIV-negative?" And that's the way it has gone.
Nan's point in trying to keep the group a mixed group that includes HIV-positive, HIV-negative, and untested people is this: "Doesn't it reflect the reality of life? Aren't we all in a social context that has some of this, some of that, some of these, some of those?" She's trying hard to hang on to that, and she has succeeded.
At some point, we just want someone who will listen to us. The group at my workplace comes back to that quite often. There are many days when we can't do anything for the person who brings bad news to the meeting. We can't do anything to make someone feel better. But sometimes people leave feeling better, just because they've come in and said, "Look at me today. Look at how I am. Look at how I feel." People come in wheelchairs sometimes. Sometimes they come from the hospital with oxygen, saying, "This is where I am today." We're just good listeners.
There are legitimate concerns that we have as HIV-negative people. They can't be put in the same realm as HIV-positive concerns, which are life-threatening, of course. We know they are. Ours are legitimate concerns, though. You just have to find the place to express them and not make them part of a competitive, hierarchical triage. You have to find a safe place to take your HIV news about yourself and share it where it won't be judged against some other piece of HIV news.
I have a very good friend -- a straight woman -- who is a great listener. She has gay male friends who are infected with the virus. She is not so passionately caught up in it. That's a good thing to find. Try to find somebody who is not personally battling it right now, who can listen to your concerns. It can be someone else who is HIV-negative, or a family member, or a friend for whom HIV is not a primary concern. It has to be somebody who is not going to judge how you feel.
I think the first responsibility I acknowledge is a responsibility to myself. You have to truly believe that you deserve to survive this incredible scourge, that there is something personally valuable in yourself. That takes some doing for a lot of gay men. It takes some doing for myself. If you don't value yourself at that level, then you can say things to yourself like, "It doesn't really matter if I slip this time," or, "This guy is so cool. The fact that we don't have a condom around is immaterial. We'll probably get away with it this time." Those kinds of things become unacceptable if you accept responsibility for yourself at its highest and fullest level. Why did it take me years to figure that out? I don't know. You have to ask all sorts of questions about gay men and their valuing themselves. I've asked myself some of those questions.
I think I feel a keen responsibility for helping out people who are infected. There's a tremendous amount of volunteer time that a lot of us are giving. That certainly has permeated my life in the last four or five years. There are over a dozen people in Boston whom I have helped and continue to help.
As I get older and have no children of my own, I have started to feel the possibility of being a Big Brother. God, I'm old enough to be a father figure for many younger gay men. And maybe you can say mentor, too. All of those things are about modeling behavior for people and being supportive of them.
I think all of us respond best to personal, close interactions with people who model behavior for us in some way. If you want to become the perfect violinist, you have to know somebody pretty early in life who is a perfect violinist. So around the HIV topic, if we want to be good there, we probably ought to start on a personal level. This is the way HIV became real and vivid to me: from people who are infected, and through the friend I told you about who was HIV-negative and then tested HIV-positive.
How do you institutionalize that? I suppose some organizations have done that through their speakers bureaus, where one can talk and be an open example. I think the more openly we talk about it and can admit our HIV status in the workplace, in the family, and in our friendship groups, the better. I'm very comfortably out at work, and after I got my last HIV test I told my boss. I just wanted him to know that I'm okay. I think I wanted him to hear on a personal level how people deal with HIV issues.
What if I seroconverted? It's a possibility, isn't it? You can imagine what that news would feel like, but I think you would really have to have that news delivered to you to know what your reaction would be. I think that's one of the reasons my behavior is moving in the direction of the safest possible behavior, so that fear of seroconverting doesn't continue to be an anxiety or even a thought in the back of my mind.
Through all the volunteer work I've done in the last four or five years, I have acquired a lot of information about what some of the common illnesses symptomatically bring out, what medications are available, how quickly or aggressively one should seek treatment, what it means to your physical constitution. I've seen it all, from the first day after getting a positive test result to the day of someone's death. So I have some idea of what HIV disease could mean to me.
One time, some of the HIV support group members asked me why I have continued to come for so many years even though I am HIV-negative. "I want to know what we are involved with here," I told them. "I want to know the beast."
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Conclusion · Appendix A B C · Notes · Contributors