by Studs Terkel
I come from a crazy middle-class family. My dad became a dynamic salesman with the motion pictures and TV shows. And in the middle of everything, he moved to a Navajo reservation and became the executive assistant to the nation’s tribal chief. He lived on the reservation for twenty-five years. Because of his public relations background, the tribe offered my father a job. My mother, my brother, who’s handicapped, and I stayed here. My dad was very proud of all the work I did. He passed away in 1996.
I worked as a bus driver and then a coach driver—I drove a school bus for the marching band of Northwestern [University], of which the tuba section would always ride with me—and that was crazy. I was led to this work when my friends got so sick. I’ve been involved primarily with the gay community by way of theater, by way of getting my hair done, by way of having the apartment decorated. The gays have been discriminated against forever, and yet they did the humane thing by offering agencies to perform services for all people, not just gay people. To their dying breath, these wonderful activists who were my friends made sure that these agencies did the right thing. They blazed a trail. In Chicago, the legacy is: people with AIDS have services now. With dignity, with respect. I can’t say the same at Public Aid, and I can’t say the same at Social Security. They don’t give a damn. In the early years, the attitude was: “They’ll be dead before they have to worry about their benefits, I don’t have to rush.”
I’m here seven days a week, fourteen to sixteen hours a day. This is my life right now. Open Hand. Death is my constant companion. People aren’t dying as often and as frequently as they did in the early years; 1980, ’81—that’s when it started. For those long-term survivors who are fortunate enough to still be here, they remember how it was back then. You know what our social life was? We would meet at the memorials. When you go to seven, eight a week, that is your social life. You worked your job, you went to the homes of your friends because they had to have clean linens, the kitchen had to be cleaned up and spotless because you can’t have bacteria. When someone is too weak to stand up and make a meal, you have to help. So you multiply that by the hundreds and thousands of people that we’ve been able to serve, and I guess I thought about all of them last week at the Gay Pride Parade. For me, it was just the memory of the ghosts, not so much the people who were there but everyone who wasn’t. That was the corner where Bob Adams used to stand and wave to me . . . and then I’d look at another corner, and that’s where my friend Christopher Richardson would dance shirtless in his camouflage pants. I’d look at another corner and all I could remember were all the people who weren’t there. I often have these visitations. So for me, it’s a day of pride, but it certainly is bittersweet.
Sometimes you worry, am I going to forget the ghosts? That’s disrespectful. You’re supposed to remember. Which is why, when people come to groceryland and they see Lori Cannon, they know that they’re going to get a story about all their friends that are gone. But the underlying commonality is the heroism. Your diagnosis meant you had to come out again. Would people want to talk to you? Would landlords rent to you? Would your job keep you? And somehow this strength . . . superiority. Who else but the gay community could tolerate it. It’s almost like the Jews at the camps. It requires a culture and a group that grasps that the whole thing is about survival. And if at a certain point you understand you’re not going to survive, then hopefully you’re surrounded with friends. What would motivate somebody who’s dying of AIDS to still get up, write a symphony, design a ball gown, be an architect for a great building? There is a gene, I think, within the gay community, that allows them to survive challenges in a way that still offers whimsy, still offers humor, and still offers love. And I’ve seen it.
My friend Scott McPherson wrote the play Marvin’s Room.* It was a black comedy, a kind of sneering at death and its challenges. He knew he was dying of AIDS. He wrote the play just shortly after being diagnosed. He was my best friend, Danny’s boyfriend. That was my family, Danny and Scott.
It’s close to the end. The doctors want to do more testing on Scott. He’s a little wisp of a thing—a little body with a big head. His lymphoma had traveled up to his head. It’s now misshapen. The one last test came back. The doctor went to find me because he knew I knew everyone on the AIDS unit floor. He didn’t want to tell Scott the bad news without me being there. I could tell from his face the news wasn’t good. So I go into the room, I’m sitting with Scott, he clutches my hand to his bony little chest, and the doctor tells him, “Yes, it’s lymphoma, Scott. It’s quite advanced—doesn’t look good.” And without missing a beat, my little sweet friend Scott looked at the doctor and he said, “I’m sorry that you had to go to the trouble. I know how hard it was for you to tell me.”
My first thought after Scott McPherson died, when we were all gathered in his bedroom . . . I called all the relatives in, because I knew the moment he would take his last breath. I don’t know how it comes to me, but when I know it’s getting close I beckon people to please join us, let’s surround the bed in a circle of love . . . Scott was famous for his glasses—he wore those goony glasses like they wore in the fifties. Couldn’t see a thing without them. They had picked up his body and I thought, If he’s lucky enough to hook up with Danny now, how will he find him? The glasses are on the nightstand. He would need those. And then someone said, “Well maybe they don’t wear glasses.” I said, “Scott will always need his glasses.” How could he find Danny? ’Cause I’m sure they’re going to be searching for each other.
I accept death, but the dying part worries me. Will it be agonizing? Or will it be just going to sleep one day and not waking up? That’s not a bad way to go. Something quick, because we’ve seen the horrors of a lingering death. That’s not joyful for anybody, and it’s not poetic. But I look forward to joining all of my friends, and my dad, and all of my heroes.
There’s no reason to prolong pain. Traditional medicine says, “Wait a minute, let’s try this, let’s try that . . .” But when the person says, “Hey, I’m tired of being sick, I’m sick of everything—I want it to be over,” you must listen to him. You can’t get that support currently from traditional medicine. It’s only with alternative medicine. Look at marijuana. I’m getting it for my friends all the time. Why isn’t there a civilized approach to that in Chicago? Legalizing it. It lessens the pain, it helps with chemotherapy.
If you and your doctor have talked about how you want things to happen, that’s great. Oftentimes, doctors can’t hear that—they don’t accept it. They’ve taken an oath to preserve life and that’s it. Some doctors are extraordinary, they understand it completely, and if that means that morphine is upped a little bit every day so that eventually the heart stops, they’ll do it, and there is no investigation. It’s happening. It’s humane. If that person understands that there is just no hope, give them the dignity of deciding how it’s going to be and you’ll see a peace comes over them, a tranquillity comes over that person. They can count on people to come through and assist.
I had one situation, the guy wouldn’t die! He called me: he says, “Help me end it.” I went to New York, I brought all of the medication. The one thing I couldn’t do was put that plastic bag over his head, tie a belt around his neck. So I’m sitting there, I’m watching his chest go up and down. He is suffering so, it’s killing you to watch it. I thought, How could this be? There’s a formula of what kind of narcotics to offer, how to do it. These are young people with young hearts. Normally, a young heart won’t stop. I thought, Goddamn you, Steve. I go, what is this? So you know what I did? I closed his mouth, I pinched his nose, and that was it. I said, “Well, I gotta go, everybody.” It was in Brooklyn, so I went to Nathan’s for a hot dog. I thought, This is a hell of a thing. I knew the next morning the sister was going to come by because she would come and check, make breakfast. She knew nothing. He didn’t want to include too many people. The next morning, Steve’s sister did come into the apartment. When she found her brother dead in bed, it didn’t shock he
r. She knew he was sick, and she would just expect that to happen one day—no reason to implicate her in any of the plans. You could tell she was relieved. She still doesn’t know. The police didn’t have to investigate, there wasn’t anything unusual. The ironic thing is, she called me that night to tell me the news and I offered my condolences. I said to her, “Daisy, you were a wonderful sister to Steve. You should be proud of yourself.” I made her feel good. She reconnected with her brother only when he became very, very sick. I said, “I’m sorry for your loss—condolences to your family. I’ll never forget your brother.” She said, “Well, thanks for being a good friend.” I said, “You bet.”
It’s a war. We consider it a war. I consider Dr. Kevorkian to be a saint. I resent it when people attack him, because I think they just don’t get it. I respect the sanctity of life. When my friends never got past twenty-seven, or twenty-eight, or thirty-one, those thirty-one years to me were golden. But to end the suffering is also important.
I have had visitations from my friends who are gone. When I see them, I take something to puncture or wound myself, to draw blood, so that I make sure it’s not a hallucination. So I can say, wait, I was quite conscious. A lot of people who have lost friends to AIDS, we all talk about the visitations that we get. One of our volunteers, David, who’s now gone many, many years, called me in the middle of the night from St. Joe’s Hospital—and he was crying. I knew he was sick. He called me because he was scared. This was a year after Danny died, so it was 1993. David says, “Lori, I’m at St. Joe’s Hospital.” I said, “I heard. I thought I’d come up and see you this week.” He goes, “The reason I’m calling is Danny came to visit me tonight.” I said, “He did?” The first thing I asked was, “How did he look—did he have his hair?” ’Cause Danny in good health, before chemotherapy, had the most gorgeous head of Latino hair—thick, wavy, romantic. He said, “He had hair and he was sitting on my bed. Danny came to visit me to say, ‘David, it’s not your time yet. As sick as you are this week and you think you’re dying, it’s not your time.’ And then Danny left.” I said, “David, did you have a relationship with Danny, did you know him?” David said, “No, I only knew him in the newspapers.” He never met him. I said, “Really? Danny found time to come visit you.” He said, “He wanted me to be at ease.” I said, “Well, then I would take his word for it.” He got well—he was able to get home. David died one year later.
Oh, I’ve had visitations often. Even here at 3902 Sheridan, I will look up at the CTA bus that goes by our window, I will see friends of mine who have died sitting on that bus looking. I can’t help but when I run outside at the bus stop, thinking they’ll get off the bus, but they don’t. I feel they’re visiting me and they’re watching to make sure I’m OK.
*The play was critically and popularly acclaimed at the Goodman Theatre, Chicago, and later made into a movie (directed by Jerry Zaks [1996]).
Brian Matthews
I first encountered him when he appeared at the Open Hand Society headquarters to pick up his food package. Laurie Cannon had to persuade him, because he felt he might deprive someone who might need it more.
I’m a gay male, thirty-seven years old. I have a degree in business from Indiana University. After I got out of college, I did some graphic design for a few years, and got lured into the bar industry. I worked as a bartender for the last ten years. For a time, I worked at a leather bar, a bar mostly for men who enjoy dressing up in leather. They’re the fringe of gay, hyper-macho.
I grew up in Munster, Indiana. It’s about forty-five minutes from Chicago. Upper-middle-class. When I was about five years old, I realized I was gay. I didn’t know it was a sex thing, but I knew that I was different. I was fourteen when I had my first gay experience. I came out to my family when I was seventeen. My dad was the manager of the Amoco refinery in Whiting. I am the oldest of three. My brother is an engineer at Amoco. My sister is also an engineer. They’re all supportive of me, very much so.
After the leather bar, I managed Big Daddy’s, another gay bar, and then tended at Bucks Saloon, right in the middle of the gay strip. Finally, I decided I had enough. It’s a rough life.
I’m now an editor of a gay weekly—irreverent and, hopefully, funny.
I WAS DIAGNOSED THREE years ago: HIV. And I became sick within a couple of months—I became almost deathly ill. In fact, there was a point when I looked at myself in the mirror in the hospital and they were running all kinds of tests on me, I didn’t know what was wrong, and I was running hundred-and-five-degree temperatures constantly. I looked at myself in the mirror and said, “Oh my God, you’re going to die . . .” It was really strange, but it wasn’t really scary, just matter-of-fact. Then the next day they did a bone marrow puncture in my hip and discovered that I had Kaposi’s sarcoma—it’s a type of cancer. Usually you get spots with KS. It’s usually found in the elderly or people with weakened immune systems. It was HIV-related. With me, they found it in my bone marrow, and I was the first person in the country diagnosed with this type of cancer in the marrow. This was three years ago. So they started chemotherapy the day after that and about a day after that my fever stopped and I just turned around like that and recovered. I had gone on the cocktail medicine prior to that. It’s pills, but they call it a cocktail because it’s a mix of different medicines. I take thirteen pills a day. I carry a little pill thing. I’ve taken all my pills today. Here it is. Orderly, all named. Noon. Tuesday morning. Evening and bedtime. We’re having a martini and I’m enjoying my life.
I was scared at first, then all of a sudden I wasn’t scared. It was just kind of like I accepted that I was going to die. Two days later I was drastically better, much better. Now I’m feeling pretty good.
I’ve lost many friends. The first friend I had died when I was five years old. We were out playing in the springtime in Munster, and he decided to walk across a bridge that didn’t have all the wooden slats on it. He fell through into a river that was raging. He drowned when I was with him. The most wonderful thing that anyone has ever done for me in my life was my grandparents. They lived out in rural Indiana. They took me out to their farm and bought a dozen baby chickens and taught me that there’s a continuum of life. They taught me with those baby chickens that although there was death, there was also new life. And they made me responsible for those lives. The ironic part is, when I was eighteen years old, they were joking around with me about eating my chickens, and I had no idea what they were talking about. They had told me that the chickens were too big and had to go to a farm. Of course, they butchered the chickens and I ate them.
I was raised Methodist. We went to church every Sunday. I’m not really sure what it is, but I believe that there is something bigger than us and I believe that this isn’t it—that there’s more than this plane that we exist on. I had a very close friend of mine die about five years ago. He died of AIDS. I took care of him up until he died, and he told me that after he was gone, he would look out for me when he was in Heaven. He would watch over me. The night that he died I was working at Buck’s, and somebody came in, I don’t exactly remember what happened, but I just had the feeling that my friend had sent this person in to tell me he was OK, that he had passed on to Heaven. I just had this feeling. He had worked for me. He was my assistant manager when I managed Big Daddy’s. It was not a sexual thing at all. We were just kindred spirits, we really connected. He started getting really sick and went to the Bonaventure House, which is run by the priests across from Illinois Masonic. It was a house for people living with AIDS. I would go by and visit him every day. I saw his deterioration. He had a parasite in his intestinal system that now is treatable, but back then they couldn’t.
With AIDS, each one may have something different. The immune system is knocked out, so it could be any damn thing. The protection is knocked out. I remember now, he had cryptosporidium—it’s something you can get from drinking water. Most people can fight it off, but some people with weakened immune systems develop it. He had a central line
that went right into his blood and he had two feedings, called hyperalimentations, that kept him alive. He had chronic diarrhea. He went to the bathroom every fifteen minutes. Barely could keep water down. So he and his doctor decided that they were going to stop treatment and put him on morphine. I promised him I’d be there, and I was until two days before he died. I called him up and he didn’t know who I was. He was on morphine and starting to get delusional. But I really feel that I fulfilled my promise to him, that I was there for him.
I wish I could remember what that guy said the night that my friend Tommy died. People don’t come to a bar and want to hear stuff like that from the bartender—you’re supposed to put on a good face. So he died, and I went to work and I was just trying to be strong. I had broken down a couple of times and I had to go downstairs to the basement. The people that I worked with were very supportive. When I would start to cry, I would go downstairs. I came back upstairs and I was serving drinks and somebody came in and said, “It’s going to be all right.” They didn’t know me, they didn’t know what I’d been going through—it was like he sent this person in to tell me it’s OK.
When I was like in my late teens, I questioned everything. Anything I believed had to be proven to me. I was like a scientist. Doubting anything that I couldn’t hold in my hand. But having lost as many friends as I have . . . Maybe I’m comforting myself, maybe that’s all it is is my brain, my psyche defending itself. But I really think there is something, that this being on Earth isn’t the end.