HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
I'M OF AN AGE where I really went through the whole thing. I remember very clearly the articles about the gay cancer and the gay plague and people having no idea what the hell was going on. It all seemed very distant from me, but I was scared. My first friend to get sick was somebody I had known at Yale. He died quickly and it seemed mysterious to me at the time. It was frightening. We just didn't understand what was going on.
My first very good friend who died, Bob Walden, also got sick very early. I remember when I got a letter from him saying he had HTLV-something. I didn't know what he was telling me. I literally didn't know what it meant. I asked him, "Do you have AIDS? Is that what you're saying?" And he said yes. I remember going to see him and helping him and dressing him -- he had a Hickman catheter -- being terrified of getting blood on my fingers, and not wanting to let him know that I was terrified.
One of the most moving things about the movie Longtime Companion is that it really did capture the confusion of those early years. In the hospital one character is sick and his lover is standing there in a surgical gown, sobbing. He wants to go hug his lover and he doesn't know what to do. I sat there in the audience wanting to shout, "Hug him! Hug him! It's okay. It's okay." But we just didn't know. We were paralyzed.
When the test came along, it seemed like a big breakthrough to me. I remember there being uncertainty about the test, but it seemed basically like a breakthrough. All the issues about testing didn't occur to me. I remember thinking, "Ah, finally, we've got a test. Well, that's great." It was only later that I really started thinking about the implications.
I didn't get tested right away. I was involved with a guy who had never been tested. He was younger than I. He was terribly worried, terribly afraid of it. I couldn't figure out what his worst scenario would be: that he would be positive, that I would be positive, that both of us would be positive? It was all just white fear to him, just big, irrational, consuming fear. I wound up getting tested partly for him. I thought I could hold his hand and take him through it.
Now that I think about it, I probably deflected some of my own anxiety into a sort of paternal role. Maybe I used his fear, and my realization that I had less fear, to get myself through it. People in my age bracket had a decade of sex before this even started. It was easy to assume that we were going to be positive.
I went to the Fenway Community Health Center in Boston. I remember when the counselor came to bring us into the room to tell us what the results were, she said, "Oh, that's a nice backpack." I thought, "Uh oh." I thought the chatty remark was proof that she was setting me up for bad news.
We got our results together and were both negative. My friend was elated. I was relieved and happy. But that was also when it really first hit me that I had made it through.
It must have been 1987 when I took that test, because Bob was still alive. I remember visiting him. His mind was slipping. You could talk to him but he would forget things. He was lying in bed, and I was stroking his head, just being there. He started getting a little weepy. He said, "So you, you're not HIV-positive, are you?" And I said, "No. No, I'm negative." He knew that, but he had forgotten. Then he said, "Well, that's good, Tony." Then he said, "Somebody has got to stay around to tell the story." And that struck me.
This will show you how AIDS affected me: In my class at Yale, there were four of us who were so close. One is my friend Tom, who is a doctor. He's straight, he has three kids, lives in Seattle, and he's fine. Then there's me: I'm HIV-negative. One's my friend Bob, who died in 1988. And then my friend Al, who is in San Francisco and getting closer to death. So 50 percent of us, half of this bright-college-years group.
My friend in San Francisco who is dying, this beautiful black man, this amazing man, is such a life force. He walks into a room and just takes it over. He can't understand why anybody wouldn't think he is completely attractive. And that actually works.
I find it hard to know what to say to Al, to know how to deal with this guy who is dying who should not die. I find it so much harder than if I were the person who was dying and he was the life force helping me through whatever years I had. That's part of HIV-negative survivor's guilt. Why did I survive? I mean, Al of all people! It's incredible to me.
When Bob died, I went to his memorial and something occurred to me to write about him. The New York Times ran it as an op-ed piece. I've written a lot since then about AIDS. It was Bob's injunction to me: Somebody has got to tell the story. Maybe that's why I have survived. I have more to say. I'm sure I do. More stories to tell. This is not going away. And even if it does, the stories are still going to be there to be told. Maybe that's my role: to be one of the people that tells the story.
Shortly after Bob died, I felt I could not sit around and just watch my friends die and not do something besides helping them. That's when I went to the AIDS Action Committee of Massachusetts to start working on the hot line.
As part of the training, we were told to write out four items on index cards in four categories: four activities, four roles, four possessions, and four people. Important things. Activities for me: swimming, playing the piano. Roles: I'm an uncle, I'm a friend, I'm a son. Possessions: my condo, my piano. And then four people. It wasn't like you had to pick the four closest people, but just four people you were thinking about. I picked Jon, my best friend in Boston, and my friend Tom in Seattle, and the two other Yale people: Bob, who had just died, and Al, who was HIV-positive, I knew, but not sick at the time.
When I laid out those cards, I remember looking at the floor and thinking, "Wow! There's my life. Look at that." I sort of felt pleased. "Gee. Those are pretty good things. Sort of a nice life."
And then the specter of AIDS, in the form of one of the trainer's helpers, swept through the room, picking up cards. The specter would go through everybody's cards and take a few of them. Not everything, just a few. He'd select a few things.
It was very powerful -- the idea that this specter could just come through and take things from you. That all of a sudden, AIDS could mean that you don't have your condo, or you can't swim anymore, or you've lost people, or you're no longer one of your roles.
And I remember he was coming toward me and all I could think of was, "Don't take Al. Please don't take Al." He, of the four people, was the one who was HIV-positive. Bob was already gone. I was thinking, "Take Bob. That would sort of be appropriate." I put him on my list because I was thinking about him all that weekend. In a sense Bob was the reason I was there.
Every time people compliment me about my condo and how lucky I am, I think of this exercise. I remember thinking, "Take the condo. Take the condo, please. But don't take Al." So the specter comes and -- you won't believe this -- he picks up a few cards, and the only person he picks up is Al. And he's done.
They say there are only two stories in all of fiction. One is boy meets girl, boy loses girl, boy gets girl, or some variation of that story. The other is a stranger comes to town. Everything changes because of the stranger. AIDS is the story of the stranger who comes to town. Here we all are, bopping along, trying to be gay and happy, and this stranger comes to town and everything is different. That's what it was like.
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Conclusion · Appendix A B C · Notes · Contributors