by Studs Terkel
I think of a particular friend of mine, a guy named Larry Sloan. He died almost ten years ago—I think it was 1992, ’93. He was a great guy. I remember one night we were going down way south to see a show. I had a little Vespa scooter. It was a lovely summer evening, he’s sitting on the back. You have to put your arms around the guy or you’ll fall off the scooter. So we’re driving along on this scooter down Michigan Avenue, and we’re singing all the songs from A Chorus Line that we can think of at the top of our lungs while we’re driving along. Here was this silly, ridiculous moment of riding along and being silly, being goofy, and, boy, I would give anything, anything to do that again. Anything. He told me that when he was very sick in the hospital, that’s the moment he would think of to try to keep pleasant thoughts in his brain when he was feeling awful.
The thing that’s so awful about this is that you get used to it. Oh, another gay man died of AIDS—OK, that makes sense, that’s reasonable. I realized this about five or six years ago when a friend of mine went to the hospital. He had what looked like pneumonia. I thought, OK, well, he’s got it, he’s gonna die . . . Sure enough, he didn’t have pneumonia, he had a staph infection. It’s a germ, a virus. When you get a sty in your eye, that’s staph. But you get a staph inside you, it’s serious business. We didn’t know this at the time, we thought: Oh, phew! It’s not AIDS—let’s have a party! A week later, he’s dead. The shock that we all felt was extraordinary. We couldn’t make any sense of this death the way we are used to deaths from AIDS. A death from AIDS is like, well, of course, that fits into a slot, we know that, we’re used to that . . . But this thing, we couldn’t understand what was going on. We didn’t know how to grieve for this person. It was awful. I am now so used to an AIDS death, I’m not shocked anymore. He actually died of a heart attack because the staph infected his heart.
There’s a common story that people with HIV assume a certain level of pride and confidence and wisdom, which I don’t think is true, but it’s a narrative we tell ourselves. For some people it’s true, but not for all people, absolutely not. We really have sort of lionized people with HIV in the gay community—they’re sort of our heroes. Which is very troubling, because why do you have to have HIV to become a hero? The real terror is that there are guys these days who see becoming infected as a very good thing.
This is something that I’ve thought about a lot, working in my job: if you’re a gay man and you want to get a will done, we can’t help you. If you’re a gay man with HIV and you want a will, oh, we’ll do it for you for free. Any number of things you get for free once you’re HIV-positive. You can get housing, you can get food delivered to you, you can get a social worker, you can get a support group. You can’t get that stuff just because you’re gay. Which is a commentary, really, on how we have delivered social services in this nation from day one. It’s not enough to just help people who need help—you have to first be in a crisis situation. Then we’ll give you as little as we can get away with.
The amazing thing about the way the gay community set up HIV services in the beginning was: you didn’t have to be in a crisis to get help. You got HIV, let’s get you in here and let’s think about what we can set up for you. Maybe you don’t need meals delivered to your house, maybe you don’t need anything right now. But we’ll offer you all these options and all these things, and we’re going to keep you going; we’re going to keep you integrated into the fabric of gay culture.
Now it’s a lot of government-funded agencies. Once the government funds you, you have to do things certain ways. You’ve got to provide very specific kinds of help to specific kinds of people and show specific kinds of results. There’s nothing terribly wrong with that, but the early model to me was a much more helpful one. It showed people what was wrong with the social services that are already established in this nation. The community, the gay community itself, set up a much better model. And I think we’ve lost it.
I wish what we had said to America was, “Learn a lesson from us.” If you’ve got HIV in this town and you’re trying to get Public Aid, you’ve got a boatload of people who will help you do it. I’ll sit with you in the awful, terrible Public Aid office while you wait for three hours to be treated like dirt. I’ll get you through this, I will make you feel OK about this, I will make sure this worker does what he’s supposed to do.
I went to a Public Aid hearing with a client once. The guy submitted all this paperwork. They had made a mistake. I’m talking to the hearing officer and I said, “Well, everything submitted is in his file.” He said, “Well, that file is upstairs, I can’t get that, so you have to resubmit everything.” And I thought: if this poor client was here by himself—say, a high school dropout from Puerto Rico or a former substance abuser, a very quiet and timid man, he would have been crushed. Luckily, I was there in a suit and able to say to this guy, “Your regulations say I don’t have to resubmit this.” That’s a system we should have. Everybody in a Public Aid office should have somebody next to him or her who knows what’s going on. In serving folks with HIV, we made this great system where we treat you like one of us—like you’re my brother, you’re my mother, you’re my sister.
I do performing on the side, just to keep me creative. Something we forgot is that HIV-negative men can have serious social and psychological problems because of this epidemic. Uninfected men have been left behind. They’ve watched fifty, sixty, a hundred men die, right? They live in this world where they’re told over and over again, your being gay is your problem, you’ve brought this epidemic on yourself, blah blah blah.
A few years ago, remember, there was a Fourth of July celebration in the suburbs and a car slammed into the crowd and killed a couple of kids? The next day they had crisis counselors on the scene for anybody there who had a problem. When the first support group for HIV-negative men in Chicago opened a couple of years ago, they got bomb threats saying, “How dare you help HIV-negative men—they don’t have the problem.” There was a big outcry from people with HIV saying, “We have the real problems. The rest of you are all so lucky not to be infected, you should just be thankful.” That is how this community has split apart. I was just infuriated by this response. So I went to this HIV-negative support group to write about it. I met this man who was just about to turn fifty. This was about three years ago. He said, “All my problems would be solved if I were HIV-positive . . .”
His story is extraordinary. He was born and raised in the fifties, in the suburbs—repressive Catholic household. He said, “Every time I masturbated, I ran to the priest to confess. If I died before I did, I would go to Hell.” He believed this to be true. The terror of damnation every time he masturbated! He gets drafted to go to Vietnam. This is 1967. He meets a buddy. The two realize they’re both gay. So they get out of the army and they begin their journey through the hippie, gay-lib movement of the seventies, which was in Chicago. He was in the very first Gay Pride Parade. He was big in the whole gay revolution. He said, “The bathhouse was not about sex, it was about changing the consciousness of the planet.” For a good many, it was more about sex, but to Frank, my buddy, it was a political place. He lived through the seventies, and he said, “For the first time I had this big community, I had this big politics which told me I’m a good person, I’m worthwhile. Then this epidemic starts. People start dying. Everyone is telling you, ‘Your being gay is your problem.’ ” This is the Reagan Revolution.
Frank becomes celibate and remains celibate until I meet him sixteen years later. It drives him crazy, as you can imagine. He’s so traumatized, he can’t imagine intimacy with anyone. And he said to me, “If I got infected, I would no longer have this terrible fear of being infected, because I’d be infected—the fear would be over.” He said, “I’m beginning to think that would really put my life back.” What he realized was: in being celibate, he’d wait until AIDS was over. And then he realized: I was waiting for the world of the seventies to come back and tell me I’m an OK person. When he realized the politics of the se
venties are dead and never coming back, that’s when he thought, I may as well get infected. My world is gone. It reminds us of the power of the gay movement in the seventies. That was how we became worthwhile, self-respecting human beings.
Now the mainstream gay community is fighting to become legally married and get in the military, which are the two most conservative and repressive institutions in society. As opposed to saying, “Let’s think about new ways of structuring relationships and families.” In the seventies, we were about to make a new society. Now we’re about how to fit into the society that already exists and has long excluded us.
The conservative swing in the nation hit everybody, including gays. We used the epidemic to say: “See, all that sexual liberation—that got you, didn’t it? You all had too much sex.” That’s become a very quiet background conversation. It’s not stated overtly, but . . . If we hadn’t had so much sex in the seventies, we wouldn’t have this epidemic. We forget what was the good of all of that revolution, what we accomplished. We would not be a community ready to handle this epidemic were it not for that revolution, right? That put us on the political map. We have Gay Pride Week, but it’s become part of the mainstream, too, almost like a Rose Bowl parade. And we march through our own neighborhood, which accomplishes what? Who’s going to argue with us in our own backyard? Nobody. We should be marching down Michigan Avenue. We forget, it was the freaks who led the Stonewall riot, right? It was the drag queens, it was the crazy people, it was the people that we now say, “Oh, they’re not part of our community”—the outcasts. What a betrayal of the people who led our revolution! The bankers weren’t in that Stonewall Bar that night. I used to have the terrible fear: Am I going to have as miserable a death as my client just had? Many, many times I would go to the hospital to execute a document for some guy and there he is in bed. He is literally a concentration camp victim. It’s exactly that image. He is just skin and bones. And he doesn’t know it. He still thinks, I’m getting out of here. He’s just doing this for temporary.
I remember, I went to Illinois Masonic Hospital to see this guy whom I’d worked with through many different issues over the years. He’s lying in bed—I hadn’t seen him for probably a year. Until that point, he’d looked fine. But now he was in the bed just wearing a diaper, because he was incontinent. If he was eighty pounds, I would be amazed. And he was a good five-ten. He couldn’t move very well, either, because he was so weak. We were talking about his adopted daughter, that he had to make sure someone was going to take care of this kid. He wanted his partner to have the kid. We thought: Oh my goodness, the family is going to raise a stink if his partner has the kid.
I remember, there he was in the hospital in such terrible shape, and the nurse stood behind him the whole time and just ran her hands up and down the sides of his head and his cheeks. Just this inordinately affectionate gesture to this man. Here’s this nurse who’s seen this a thousand times before, right? She’s on the AIDS ward, ten years into this thing. That is the kind of moment that you realize we’ll never be done fighting this thing. If she can do that, then I can fight whatever fight I’ve got to put up. Whatever fear there is, maybe that person will be there for me, stroking my cheek in that terrible situation. That’s all you’ve got to hang on to.
Matta Kelly
She works at the University of Illinois Community Outreach Intervention Project, School of Public Health. She has the amiable appearance of an attractively mature housewife we might see in a television commercial. It was the casual manner of the gemütlich hausfrau with which she told her tale that was so startling and yet so natural. “I have actually been pronounced dead once when I was using drugs. I actually woke up on one of them gurneys outside of the morgue. They had already tagged me—they had already put a tag on my toe.”
“WHO IS MATTA KELLY?” I don’t really know because I’m so many, many, many different women through my life. I was born in Reykjavík, Iceland, in 1946, so I am fifty-four. I was raised in poverty by a stepmother and a mother. My mother had seven children. I lived in a very dysfunctional household. I have been the frightened child, I’ve been the abused child, I have been the frightened teenager, the inadequate teenager, insecure, low self-esteem, and I have been the woman, the mother, the drug addict, the prostitute—I’ve been all these different things. Now I am a woman with independence, self-esteem, a career. I’m still a mother and a grandmother, and I’m a caretaker. The frightened child was in Iceland. The insecure woman with the low self-esteem came to America.
I left Iceland in 1967. I was twenty-one. I had met a man stationed in the service, an American soldier, Robert Kelly. When he came back to America, he would write me letters. I didn’t speak or read any English, so I would translate the letters through the dictionary. My understanding was that he was in love with me and he wanted me to come to America. He said America is great, there’s money in the street, everybody is rich. I got a one-way ticket. I had twenty dollars, and I came to America, to Chicago, with a little piece of paper with a name and an address on it. And I’m still here.
When I got here, everybody was very surprised. He was not rich—his family was poor. He didn’t have a job. He didn’t know I was coming. I sent him a telegram from New York that arrived the day after I got there. So everybody was very surprised, angry, upset. They couldn’t afford to send me back home. His mother wanted us to get married finally. There was a lot of arguing going on, but I didn’t speak any English, so I didn’t know what they were saying. My name was mentioned often. We did get married, and we had two children together—and divorced. Actually, I have a son in Iceland that I left there when I came to America. He is probably thirty-five. I have a daughter who is thirty-one and another son who is thirty, and my youngest daughter, who is twenty-six. Our marriage didn’t go well. He was young. There was a language barrier. I’m quite sure that I was difficult. There was a child. I got a job, I had an affair. And the marriage was over.
I started working for Bally Manufacturing right after my oldest daughter was born in 1968. They make the slot machines. This is while I was married. After we separated, I moved further up north. I took my two children, but while I was living by myself I ran into some people that didn’t work—people that were into music and going to concerts. And I got involved with people that did drugs and started using heroin. I became a heroin addict. Of course, life was difficult because you have to make money to have heroin. From using heroin, I got introduced into prostitution—and stealing, and selling drugs. I lost my children because of that. My two oldest children, I lost to my first husband, Kelly—which, in hindsight, was a good thing. I used drugs until maybe 1987. I finally stopped. But my life was Hell in between.
People think you’re having a good time when you’re getting high, but you’re not having a good time because you have a physical addiction, which is very painful. If you don’t have your drug, you’re in a lot of pain. It was maybe close to fifteen years I lived this way. From late 1973 to ’87. I was twenty-eight when I started, and I think I was forty-some years old when I finally finished. There was just so much going on. I lived in a housing project, Lathrop Homes. I lived there for ten years, and I did drugs and I sold drugs there. My daughter Michelle, the youngest one, was the only one that was with me then. I dragged her with me though all my misery. She was not Kelly’s daughter, so nobody could take her away from me. She was six months old when I started using drugs. I had her by somebody else.
It took a long time to detox off all the drugs. There were people in and out of my house. The police was breaking down my doors almost every week. There was just so much chaos in my life. I was in a car accident, and I was sick.
What happened with me was that every day I started thinking: God, I hate this so much. I could see a different place where I wanted to be. One day, I just got rid of everybody out of my house, including my boyfriend, and told them that I wanted to stop and for everybody just not to come back. That was the start. There came a point where I started quitt
ing. It took a long time. I was on methadone, but I was doing every other drug: I was drinking methadone, shooting heroin, shooting cocaine, taking pills—you name it, I was doing it. From that point I started cutting everything down. I quit the cocaine, I quit the pills, I quit the heroin. Finally, I was just on the methadone.
I knew I was going to die, otherwise. I knew I was not going to see my daughter grow up. She has no family but me. I knew that if I died, she would be left alone. She was in her early teens when I started quitting. It took me two years to completely quit. I was afraid for her. I was afraid for her because she has no family. Her father was nowhere around—he was just some guy. I was afraid for my child. She was an early teenager, she was starting to get in trouble. She was hanging with the gangs. I didn’t even realize that she had become my mother until I got clean from the drugs. She went through a horribly difficult time. Because all of a sudden, when I became clean off the drugs, the person she had been caring for all these years, was now giving her orders and expecting her to do what I said.
When I was very high, she would make sure I came home; she would go get me in bars. She would wake me up when I was burning up the couch with my cigarette because I was nodding out. She would worry about me and cry about me and cook for me and all that stuff. Ever since she was little, from the time she was one or two years old, I was using drugs. I didn’t pay much attention to her. If I was at the bar, she’d go look. She was at home when the police busted down the doors. She would worry about me going to prison. When I went out, she never knew if I was coming back home. I didn’t do any prison time, but I was arrested a couple of times.
The guilt, the guilt, the guilt . . . The guilt is what drives most people insane. It was an everyday thing: I should do it differently, I shouldn’t be using drugs today. If I get money, I’m going to buy something for my daughter. But you never do, you never do—because the drugs are the priority. Every time I shot drugs into my veins, I knew I was taking a chance of dying. But the need for the drug is more than the fear of the death.
