HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
TO BE HONEST WITH YOU, if I thought about AIDS, it was like for five minutes. I went to all the fund-raisers -- the dance-athons, the walk-athons -- because it was fun to go with your friends and have a good time. We knew it was for AIDS, but we never thought about that. In the club scene in L.A., we'd go to a club on a certain night and AIDS Project Los Angeles would be passing out buttons, safe sex stuff, and condoms. We'd take them, but never really thought about it.
I think a majority of my friends were like that. We never really talked about AIDS, we never really knew anybody that had it. AIDS was something that happened to guys that had group sex, things like that. It wasn't part of our clique. It was something we wanted to forget about. We were just out, meeting guys, and having a good time. It was a rebellious thing to go to gay clubs. Most of the kids at the clubs were underage anyway, and shouldn't have even been there. It was a big deal to get in, to be doing things your parents don't want you to do.
When I think of the way I used to act, I think of myself as a slut. It wasn't like a different guy every night, but there are still days when I remember guys I had forgotten I was with. Sometimes I would practice safer sex, if they wanted it. Other times I wouldn't. There would be nights that I didn't feel like having anal sex, but I would go along with it because -- I don't know -- I was afraid to say no, he was bigger than I was, he was going to do it anyway. With guys that I really liked a lot, I would do it because they wanted to and I wanted them to like me.
It wasn't until Christmas of 1992 that I heard a couple of stories about people I knew who had AIDS. My friend Walter and I would talk about it, try to separate them from us: "Remember that person we haven't seen for six months? He has AIDS." "Yeah, but didn't he sleep with a lot of people? And didn't he used to have group sex?"
Josh, my ex-boyfriend, was not like that, at least from what he said. He was very monogamous. I was with him for almost a year before we broke up. He had only had a couple of relationships. As far as I know, he didn't have a lot of one-night stands. But then he also didn't tell me that he had AIDS.
In retrospect, Josh had symptoms when we were together. He was always sick, always coughing. He lost his voice numerous times. He had lesions. He never told any of us what was going on. I don't think he even knew. I know for a fact that he didn't get tested. At one point I told him, "Why don't you go see a doctor?" He told me, "No. I hate doctors."
A big part of the reason I never suspected Josh had AIDS was that he did a lot to hide how sick he was. He was suffering more than any of us knew. It never really crossed my mind that he had AIDS, and if it did, it was for a split second before dismissing it. I thought it was a cold that wouldn't go away. We were young and in love. Something like AIDS was inconceivable.
We broke up, and although I thought about Josh a lot after we split, I never thought of his illnesses. A few months later, without a word to any of us, he moved back home. He called me a couple of times from Texas, but that was it. Then one day before Christmas this past year, I called. His brother answered the phone and told me Josh had passed away. He had been put into the hospital a week before he died. His brother told me Josh had been out of work ill for a couple of months, didn't want to go to the hospital, didn't want to know what he had.
Of course, after he was admitted they found out it was AIDS. The doctor told him, "If you had come to me a few months ago, I would be able to help you. I really don't think you're going to last long." And he died a week later, right before Thanksgiving. He died of pneumonia, which is what he had all along. He was 21.
His brother had no idea that Josh was gay. His parents to this day don't know. His brother had taken him to the hospital. When I called that day, his brother said, "I'm happy you called, but don't call here again, because I don't want my parents to find out." I guess he lied to his parents about what Josh had. It seems sad that I spent a year with Josh and I don't know where he is buried. I can't send a card. I can't do anything.
You know what's funny? The day before I called, I was watching an episode of Designing Women where one of their friends asks them to design his funeral because he is dying of AIDS. The whole show is about death, AIDS, and safe sex. That night I couldn't stop thinking about it. Then the next day I called and found out Josh had passed away.
I think he suspected all along he had it. I mean, how can you not know? I spoke with his best friend afterwards. I had never really spoken to her before. She had a lot of friends who had died of AIDS. She said, "Yeah, he had all the symptoms that my other friends had. I urged him to get tested and to get help but he wouldn't."
He told me he loved me, for a year almost. I'm surprised that he dropped out of my life. It leaves me upset because he didn't admit, "Hey, Sandro, I may have this. Why don't you go get tested?" He didn't consider me. He didn't consider all the people I could be passing it on to. He had numerous opportunities to call me and tell me. In that sense, I'm bitter. I can't help thinking there must have been a day before he died when he thought to himself, "Look, I have AIDS. I'm dying. I should probably call Sandro and tell him, because we had unprotected sex." Sometimes I think of him with great feeling, but then at other times with great resentment. He had no regard for his life or anybody else's, as far as I am concerned.
My first reactions when I heard the news were despair over his death and "I have AIDS." The next day I had the most terrible fever. I was chilly. I remember having no food in the house. I had to take myself to the store. I was dizzy. I thought, "How coincidental! I find out that he had it, and now I'm getting sick." The next day I felt fine. I had no trace of the fever, no trace of a cold. But I had this pain, a burning sensation, in my chest. I had it for weeks. I woke up with sore throats. Because Josh had lost his voice, I naturally thought I had AIDS. I don't know if it was all psychological or what. I thought, "Is this something I am just imagining or is this real?" But I really felt something. I felt sick for weeks.
I made an appointment to get tested through a Latino AIDS group. I don't know why I picked that organization; I just had the number. I called and they scheduled me for an appointment a month later, the day before New Year's Eve.
For that month I was a mess. I was a shut-in. I didn't want to get up and get dressed. I couldn't picture myself trying to get through a whole day at work. I had three weeks' vacation time saved up where I did clerical work at a department store. I told them a very close friend had passed away -- which wasn't a lie -- and took my vacation time. But even after three weeks, I couldn't go back.
I didn't go out, didn't take calls, didn't do anything. I stayed in my apartment. Friends would come to my door and I would turn off the light and pretend I wasn't there. I slept the entire time. I have no recollection of that whole month. I just slept.
When I was awake, my mind was going a mile a minute. I thought about everything I had done with everybody, especially with Josh. I had been with him for a year and we had totally unprotected sex, more times than I can count. We did everything. I could not conceive of any way that I could not have AIDS.
I was the last person that Josh had sex with, as far as I know. I don't know of anybody he was with in Los Angeles before he left to go home. He was really sick; I doubt he was with anybody. So I know it was not something that he could have gotten later, after our relationship had ended.
I made maybe three phone calls the entire month. I called my best friend Walter and told him, "I called Josh the other day and his brother told me something really shocking." My friend Walter said, "Oh, no. What happened? Did he die?" And I said, "Yeah." He said, "Well, he was sick, Sandro, for a long time." I asked, "So you knew it was AIDS?" And he replied, "Well, no, but I figured it was. I just didn't say anything to you because I figured that you knew." That was interesting.
And then another friend of mine, Oliver, called me and the conversation just naturally got around to it, because I brought it there. He had just had one of his friends find out that her boyfriend had died of AIDS. She had tested negative a few months before, then went to get tested again and tested positive. So he was telling me about that. He told me he was tested every three months. It was a surprise to see that he had been thinking for a long time about things that I was just beginning to think about. We had been friends for a long time, but he had never mentioned it. I felt out of the loop.
Then there was my friend Marco, who was trying to get in contact with me for a long time that month. Since I had broken up with Josh a year before, we had been messing around. Every once in a while he'd call and we'd get together. I wasn't careful when I had sex with him. But he told me that he got tested every six months, and the last time he tested negative. He thinks as long as he's negative, then it's okay. He's always a top. He would never have been a bottom. Maybe that's why he feels he's not as much at risk. I guess he felt that because he tested negative, he was fine, and he wasn't going to worry about it.
So he was calling around that time, and I avoided him like the plague, because sex was just something I could never do again. When I talked to Marco, he could tell over the phone that there was a definite change in my character. He said, "God, you're really worried about this. Well, you have the appointment, you're going to get tested, don't worry about it. You're not going to die tomorrow. You're going to waste this whole month worried about testing positive, and you may not even be positive." It's easy to tell somebody that. It's another thing when you're actually waiting to get tested. He had been tested many times; it was my first test. He didn't really know anybody who had passed away; my lover had just died. So it was different.
By Christmas, I was feeling better. I convinced myself that maybe I was lucky and I didn't have AIDS. The day before the test, one of my friends called and asked if I wanted to go to Disneyland the next day. I said, "Sure." So I went to Disneyland instead, and totally blew off the test. In retrospect, that was probably a bad thing to do. There were other people waiting; somebody else could have been tested.
I made another appointment, with AIDS Project Los Angeles. They set me up with an agency at a health center that could do it the next week.
When I got tested, the counselor was very nice. I told her my primary concern was about Josh. She told me something very definitive: "If you're worried about this person you slept with over a year ago, this test will definitely tell you. It will not tell you within the last three months." She used three months as the time that the antibody would take to appear. She was very definitive about it, which surprised me, because all the books I had read -- I had read Magic Johnson's book when I was browsing in a bookstore -- said it could be anywhere from three months to a year or more before the antibody shows up. It made me feel good to hear a health-care professional telling me this. I imagined she really should know what she was talking about.
I cried when they took the blood. Not because it hurt, but because I couldn't believe I was sitting in a room getting tested for AIDS. The thought struck me: "How many more needles am I going to have to face in the future? This may be the first in a long series."
I was okay waiting for the results. I went to work. It was good for me to go back to work that week, because I socialized. I got my mind off it. I was supposed to get my results back a week later, on Inauguration Day of 1993. I asked for a day off.
I remember waking up that day and there was a talk show on TV about AIDS. There was this little girl with AIDS and they didn't know how she had gotten it. She never had a blood transfusion. Her parents were negative. There was all this controversy about having to change the perspectives about how AIDS could be caught. There was also a woman who had been trying to get pregnant for a long time, and she had artificial insemination and got AIDS.
I was expecting to go in there and hear the counselor tell me that I had it. I looked myself in the mirror and talked to myself for a good half hour before I went. I told myself, "Look, you have it. Don't be surprised when she tells you." I didn't know what I was going to do when she told me, whether I was going to cry. I know that when I get nervous I shake a lot. I took the bus there that day, because I didn't know if I was going to be able to drive home.
I went by myself, went in there, sat down. When the counselor came in the waiting room and got me, the expression I read on her face was, "How am I going to tell this person he has AIDS?" When she sat down, she told me right away, like ripping a bandage off, "You don't have it. You're negative." I couldn't believe it. I was shocked.
She asked some follow-up questions: "How has this changed you? How has your attitude toward safe sex changed?" I said, "Well, I'm never going to have sex again, basically. Can't get much safer than that." She said, "I suggest you get tested in another six months, just to make sure."
It had been 17 months since I had had sex with Josh. I knew that I didn't get it from Josh. That narrowed the field down a lot. In the year and a half since I had broken up with him, there were numerous instances where -- only because the other person wanted to -- we did use condoms. And it was anal sex only with Marco, who had told me he was negative. With other people, it was oral sex, which was not that much of a risk. So I thought pretty much that the test was accurate.
I felt I had been lucky, really lucky. I must have been, considering all the times that me and Josh had sex and the things that we did! I mean, you hear about people having sex with one person one time and they get it. I just don't see how I could not have gotten it.
There were a few days when I didn't believe it. I thought about the day I went to get the results. When you're tested, they give you a number that you have to check against the result sheet. But when I went for the results, the counselor just knew me by face. I don't remember if she asked me for my little card. I don't remember her checking the number against the number on the test results. She may have, but I was in a daze at the time. I wanted to get out of there so fast I did not even look at the paper.
So I called and talked to one of the administrators. I said, "I want to come back and take a look at the results, because I don't remember her asking me for my number." And he said, "We really don't do that under normal circumstances. I can just assure you that everybody who tested positive that day we are doing follow-up with. So if you are positive, you would be working with us. You would know."
But I insisted. And I left work early to go back the next day. He was really nice about it when I got there. He dug in and got the test results out. I actually compared the numbers.
I made the decision to come back home to Boston whether I was negative or positive. I had been thinking a long time about coming home. It seemed like a good time to make a transition. I couldn't stay in L.A. and go to clubs for the rest of my life. I left school the year before and was in L.A. only because I had a lot of friends there. I was thinking, "I have family in Boston. How long can I stay in Los Angeles and be doing nothing with my life? I need to go home, be a good boy, and stay away from 'bad' L.A." But Boston can be pretty bad too, I've found out, if you go to the right places.
My parents knew that I was gay, but I didn't tell them a word about what was happening until right before I came back. I told my mom what was going on, but I didn't tell her until I found out for sure I was negative. Even though she knew I was gay, I don't think she ever really pictured me having sex with people. I surprised myself in the amount that I told her. I thought this was something she was not going to be able to handle, but actually she handled it really well.
I said, "I just want you to know I'm going through this, because when I come home, I may be introverted for a while. I don't want you to think I'm unhappy to be home. I don't want you to think I'm unhappy not to be in Los Angeles anymore. I just want you to know this is why."
She said, "This is not the only reason you're coming home, is it?" And I said, "No." She said, "Well, good, because eventually you're going to work through it, and I don't want you to find yourself in Boston really wanting to be in Los Angeles. I hope you're not just running back home because you're running away from it. Because it will take you just as long to get over it in Boston as it will in Los Angeles." For her to say that really surprised me. She has been begging me for years to come back to Boston. She never wanted me to be in Los Angeles. She's Italian, she's Catholic, she's very protective. I think she has accepted the fact that I am 23 years old and am not a kid anymore.
Testing negative I really saw as another chance, the start of another life. I saw it as an opportunity to look for something more meaningful. In Los Angeles, I was going out every night. I thought it was cool to go out and be wild, have fun, party, and have sex. But I really wasn't happy. Everybody needs a loving relationship. That's what you really want.
After I found out Josh died, there was no more sex. I built up a new morality for myself: I was not going to have sex unless it was somebody that I was serious about, in love with, had been going out with for a long time, had just been tested, and I knew was negative. And even so, we would always use a condom. I had all these new rules for myself.
Marco called and wanted to come over a couple of times before I returned to Boston. He did, but we didn't do anything. I explained to him why. He thought I was being stupid, being crazy. He said, "Well, you're negative. I'm negative. We're not going to give it to each other. We'll use a condom if you want." But I just didn't want it. To have sex with him, who I cared about but not enough, would be going against that new morality I had for myself. So we didn't. He was disappointed. I didn't feel too guilty about it.
I've been to the clubs here in Boston. It's the same as in L.A. The people dress the same, they act the same, they are just as wild. I thought it would be different. My friends out there make fun of Boston. They think the clubs are subdued. Eventually somebody asked me to dance. His name was Jerry. We've gotten to know each other over the past couple of months. It was a week before we had sex. I waited a week, which was good, because that's usually something I don't do.
The first time I had sex with Jerry, we were totally safe. There was no exchange of bodily fluids except for kissing. There was no oral sex, no anal sex. Just basically masturbation, and that's it. But I was very guilty after I did it. I kept thinking about what we had done, over and over in my mind, to make sure that there wasn't any possible way I could have gotten AIDS from him. That lasted for about a week.
Because it didn't meet the standards I had set for myself, I wondered, "If this time I give in, then what's going to happen next time? And the time after that?" It was just going to get worse and worse. I'd find myself doing stuff I had done before. That's totally irrational. It really is. Maybe it's part of the morality that sex should be reserved for somebody more intimate.
There's part of me that wants to do all the stuff I used to do before, and there's part of me that wants to be the good little boy and not do anything. The last time I was with Jerry, we sat in the car for the longest time. He wanted me to go upstairs. I was nervous, thinking, "Here we go again, the whole ritual of making sure that we don't do anything that's going to put me at risk." My mind is working more during sex; I'm conscious of everything I'm doing.
Jerry had told me that he was negative and that he got tested regularly. He gave me the name of the place he went to: "I can have them make copies of my results." I was surprised that he was very giving of the information when I asked him what his HIV status was. I figured asking somebody that question would get a negative reaction, as if I had said, "You're a slut, obviously, so what's your status?"
A couple of weeks ago, he started to do oral sex on me and I pushed him away. Luckily he's about my size. We didn't talk about it until after. He said, "Why did you do that? I'm not putting you at risk by doing that. It's inconceivable that you would catch it from me." I really don't know why I pushed him away. I guess it would be bringing the thing to a new level. And that eventually it was going to keep sliding down to stuff that I didn't want to do.
We've had sex three times and that's the only time it came up. He didn't try to force me to have unprotected sex. However, in the future, if there's ever an instance that I'm with somebody I really like a lot who wants to do something I don't want to do, I don't know how I'll react.
If I found somebody I felt strong feelings for, and had gotten to know, and of course knew was negative, I would consider having oral sex without a condom and anal sex with a condom always. But it would really have to be somebody that I felt strongly for. It would be a really gradual thing. At first, it would be protected sex, and I would have to feel comfortable with the person, and know that they're not the type to go out and cheat. That's a big step that I haven't made yet: to have oral sex or anal sex with somebody, even with a condom.
Public service announcements say, "Have protected sex under all circumstances, every time you have sex." You have Liza Minnelli telling you that on TV. My mom and dad don't have protected sex. Why should two gay guys who are in love and are negative have protected sex? I get opposing views.
How much am I willing to trust a person? That's I guess what it all boils down to. Even though we're in love, did he go out the night before and sleep with somebody? It's not just the question, Did this person go out and cheat on me? It's the question, Did this person go out and risk my life last night? It has life-long consequences. You have to trust somebody not only to not betray your relationship but to not go out and risk your life. This is trust in its deepest form.
That's the only reason why me and Jerry are just doing what we're doing and not anything else, just masturbation. Because I haven't seen the test results. I haven't gone with him to be tested. He could be lying. We don't have a committed relationship.
There are a lot of decisions to make with any relationship about monogamy, about trust. AIDS is just an added factor, something to add into the mix that makes everything more difficult, more complex, and more vague.
At a meeting of the HIV-Negative Support Group in Boston, we were talking about the effectiveness of condoms at one point. There was a bearded guy across the circle who said, "If you knew somebody was HIV-positive, would you have sex with him even using a condom?" He expected the overwhelming answer to be, "No way." But a lot of people said, "Yeah, of course. Sure." I was shocked to hear people saying they would have sex with HIV-positive people as long as it was safe sex with a condom. I guess I was naive, or uninformed, or ignorant. I thought it was a given that if somebody is HIV-positive and you're negative, you're not going to have sex with him.
I don't know what I would do if I met somebody, we went out for a month, I fell in love with him, this was the person I had been looking for, and then he told me he was positive, or got tested and found out he was positive. It's asking a lot to be in a relationship with somebody positive, because you know what the end result is going to be. You are basically asking, "Could you fall in love with me, and then perhaps take care of me, and suffer my loss?"
I guess it's an individual choice. You're with who you want to be with, for whatever reasons you want to be with him. Maybe it's selfish to say, "No, I wouldn't want to be with a positive person, because of the risk." You would be excluding a whole group of people. I realize there are a lot of HIV-positive people who are virile and healthy and just as alive as everybody else, and they should not be discriminated against. You don't want to just leave them by themselves, saying, "Well, you're positive. Sorry."
In fact, probably the person I'm looking for is HIV-positive. Who knows? One of those people might be the person I would get along with the best. I can conceive of being with somebody who is positive, but I think every time we had sex, as safe as we might be, I would be worried. Maybe that will change. Maybe I'll become more rational as time progresses and I move away from what happened this past year with Josh. I can't imagine going through the rest of my life with such a big hang-up as far as sex is concerned.
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Conclusion · Appendix A B C · Notes · Contributors