Will the Circle Be Unbroken?

by Studs Terkel

  It took me two years to get clean off the drugs because I had to detox off the methadone. I had to go to a clinic to get methadone, but they didn’t have a lot of counseling. They would have, like, a group once a week or something. But usually the groups were given by a very young person that was writing a paper for college. They couldn’t really relate to anybody. If you’re twenty years old and just out of college, how can you relate? When I finally came off the drugs, I had a horribly, horribly difficult time because I wasn’t numb anymore from the drugs. I wasn’t in a fog. So what happens is, you are constantly overtensed. Everything is hyped up. Your nerves are shot. You have forgotten all your social skills.

  I was on Public Aid, and now Public Aid is telling me to go get a job. I’m a person with no American education, I just got off of fifteen years of substance abuse, I didn’t write very well, and I had no self-esteem at all—none. I was going to places, to like fast food restaurants, and trying to get a job. I was being interviewed by twenty-year-olds. I couldn’t sell myself . . .

  Then I had heard about this research project and they were targeting intravenous drug users. They were looking for people to do outreach. I was coming from downtown one day and I was on the bus, I had gone to look for a job and I couldn’t get it, I just couldn’t. So I stopped at a methadone clinic where I knew one of the counselors. I was crying and I was telling them how I couldn’t get a job and I didn’t know what to do, and that I would probably end up going back out on the street. He handed me a Post-it note with a telephone number on it, and he said, “Call these people—they’re looking for a woman your age that is in recovery.” I called them, they gave me an interview. The University of Illinois, Community Outreach Intervention Project, at the School of Public Health.

  This is thirteen years later and I’m still there! I just got a promotion. [Sounding pleased and proud] I just became the Quality Assurance Coordinator for the whole project. But I started out as an outreach worker. I worked here on the North Side. My job was to walk the street with literature, with bleach, with little bottles of bleach—bleach to clean the syringes so as not to spread the HIV. And little bottles of water. And literature. And condoms. Free condoms. And talk to everybody that would talk to me.

  I’m an addict, so I can find an addict ten blocks away. I can feel them. [Laughs] It’s something in the behavior. I used to buy my drugs in Uptown. I used to turn my dates on Broadway and Irving back in the seventies. [Laughs] You can feel other addicts. I think it has something to do with maybe a little bit their body movements and the way they talk. Everybody talked to us, like drug addicts do. They always want to be nice just to get a couple of bucks. That’s just the way it is. People got to know me because I was out here every day—every single day. There were three of us outreach workers: me and two other guys. We would walk the streets of Uptown every day. Most people thought it was great. They wanted the education. Back in the eighties, everybody was so afraid of HIV. But people thought it was only the gays that had it, and it was a gay disease. People didn’t understand how it was being spread by syringes.

  I was an outreach worker for six years, and during that time we became also case managers—because when you’re dealing with people who are poverty-stricken and sick and they’re addicts, a lot of them were reaching out for help. Help with drug treatment, help with medical care . . . Once people knew what we were doing, all of a sudden we had all these people on our hands that were HIV positive and weren’t telling anybody because they were so ashamed. A lot of these people had no medical care, had no income, were living in the street or living in some rat’s nest somewhere, or in a shelter, and were too ashamed to seek help. HIV has a stigma attached to it. The first time I went outreaching, the first person that walked up to me and leaned up against me and told me they were infected, I jumped straight back. It was automatic. I didn’t mean to do it. I was scared too, back then.

  Most of the people that sought my help back in the eighties are dead. Back then, there was so much paranoia about HIV that the families of these people didn’t want to be bothered, they didn’t want to hear about it. So me and my co-worker sometimes ended up doing a funeral service ourselves at the Roland Funeral Home, up here by St. Mary’s. Most of these people, by the time they died, had burned every single one of their bridges. So the family didn’t really want to be bothered—the family was angry. And they didn’t have to pay for anything. When you’re on Public Aid, they will pay for the minimal. So we would have a two-hour service in the morning, early morning, and early afternoon if there was more than one person that was being buried that day. We would call around and get flowers donated, and we would make up the coffin ourselves and fix everything, and light the candles, and do the service and read from the Bible, and read from The Prophet. I had a funeral kit in the trunk of my car. My funeral kit was two shopping bags. One of them had a tape player and some tapes. And the other one had candles, patchouli oil, ribbons, purple, always purple—I don’t know why, it was just a fitting color.

  I would play some very soothing music, not religious music, but more spiritual, like chanting, or you could hear the waterfall or the rain. It wasn’t sad, because I couldn’t stand it when it’s too sad. Out of The Prophet, Kahlil Gibran, I would always read that chapter on death and dying. My co-worker would read out of the Bible, maybe one little chapter. So we covered all bases. My co-worker would hand-make an obituary. We would have a picture of the client if we could find one. Sometimes we could find one in their wallet. We would do a beautiful service.

  A lot of my clients would tell me, “Matta, please, please make sure that I am not hooked up to no machines.” One of my clients, he always wanted a Viking funeral. That’s when you put the body on the boat and you burn it and you sail it. I couldn’t do that, so I would do the closest thing to it—well, it’s actually illegal . . . But what I would do, I would take the ashes down to the lake and I would . . . [she acts out scattering them on the water]. But I must tell you the story about Norma Sanders. Norma was one of my earliest clients. She was a woman, a black woman that was born a man—but she always lived her life as a woman. Back in 1989, when I first met her, she told me that she was already HIV-infected. I don’t know anything about living wills. But I knew there was a form that all the case managers had that was like, “I don’t want to be hooked up to a machine.” So we filled out this form. So Norma—she was a transvestite—used to come in the office all the time. But she would always come in and say to me, “Matta, do you still have my papers, my living will? I want to make sure that you take care of me when I’m dead. I don’t want to be hooked up to no machines. When I’m buried, I want to look my best. Make sure that I have a nice wig, make sure that I have a nice dress.” We knew how the HIV makes people suffer. It progresses into loss of weight, all kinds of bad, bad illnesses . . . We talked about it, that maybe it would be better if she took a really, really nice picture when she’s all dressed up, and I would keep that picture until she died. And she did that. She got a picture, she was all dressed up with a red dress. Around Christmas-time she had taken the picture—very nice.

  So I get a call one day. She’s in a coma. This was just last year. So I go to the hospital. Norma had a boyfriend, Wayne. Now, it was my job to figure out a way to sell the boyfriend onto what Norma wanted—because Norma never told the boyfriend that she didn’t want to be hooked up to machines. She, Norma, was a nurse’s aide at one time in her life, so she knew a lot about being hooked up to machines. When I got to the hospital, I met the boyfriend, and Norma was all hooked up with tubes and all swollen. The doctors told me that she was in liver failure, but she had a chance to come out of it. This went on for almost a month. I would go up there a couple or three times a week, when they needed me to sign papers. They were trying this, and they were trying some other thing too. They always had to ask my permission when they wanted to do something because I had the power of attorney. In the meantime, I had gone into her room and I was standing next to her and she smelled ve
ry bad around her head. She had a hairpiece on. I was smelling around her to see if I could find where the smell was coming from, and it was coming from the hairpiece. I know the nurses and the doctors could smell the same thing I did. When I lifted up the hairpiece, Norma had obviously glued it on with glue, and it was all molded and rotted. And I had to get scissors myself and cut that piece off the top of her head.

  Then I started thinking Norma would not want this, she would absolutely not want this. So I started talking to them about taking her off the ventilator—pull the plug. She had three different doctors: the head doctor, the doctor in the middle, and then the lowest one on the totem pole. All of them were telling me different things. One of them said, “If we unplug her, she will die.” The other one said, “If we unplug her, she might live and she might continue to breathe.” And the third one was telling me, “If we unplug her, it’s going to be a really ugly death and she’s going to be gasping, and she’s going to suffer.” So I had to think some more about this. This was such a difficult decision. This was a decision to take a human life. And I am not a trained person. The only thing I can go by are my instincts and my compassion—and what she wanted.

  Without my knowledge, they moved her to a coma center. It’s where everybody is hooked up to machines. First, I called to see how she was. When I called I asked about Norma Sanders, and they are telling me, “Oh, you mean Norman Sanders?” I said, “No, Norma Sanders.” They kept telling me, “Oh, there must be a misunderstanding on the computer.” I think I heard them giggling in the background. So when I went to the hospital, I was very upset. I asked to speak to the head nurse. I brought a picture of Norma with me, that beautiful picture of her. And I said, “This is the person that’s lying in that bed. She always lived as a woman. She wants to be treated as a woman. And she wants to die like a woman.” [A pause] They all were laughing, showing it around, “Look at this, look at this.” I was very upset. I asked to speak to the head person, and I told him: “I’m really upset. This person wants to die, number one, with dignity.” So what I did, I stuck her picture above her bed in that coma center. And I asked them to take her off the ventilator because I wanted to allow her to die. [Infuriated] And they’re still arguing with me. “Oh, we have to get the ethics committee together” and all this crap. I had a living will and they wanted to talk about ethics, OK? They had told me, “She will never come out of this. Her kidneys have failed, her liver has failed, her heart is failing.” But they want to keep her there on that ventilator thing. I met with the social workers, and I told them that I wanted her unplugged and they were supposed to unplug her the following day. I had the right.

  So I went into Norma’s room. I stuck my finger in her hand . . . and I told her, I said: “Norma, I have promised you for ten years that I would make sure that you died with dignity. I would make sure that you wouldn’t have to be in pain. And I’m here to take care of your wishes. If you understand me, squeeze my finger.” And she squeezed my finger. And then I told her, I said, “Norma, your cats are OK. Your rent is paid. Wayne is fine. Everything is taken care of. Your house is clean. Phone bill is paid. Everything is OK. You can just let go. I know you’re in pain. I know you want to stop this. If you still want me to do what I promised you, squeeze my finger.” And she squeezed my finger. The next morning she died from a heart attack. And that was the story of Norma.

  [Long, long silence]

  Oh, she was a rough old broad. She used to beat her boyfriends up with a frying pan all the time. And I had a service for her. We had a closed casket. She wasn’t all that bad—it’s just she didn’t look like she would have wanted to look. She always wanted to look her best. We had the service. Maybe there were four people there, that’s all. Her boyfriend couldn’t wait to get out of there because he needed a drink, so he was already hunting for somebody else.

  The only way I can understand my life and accept it is that there is truly a plan for each and every one of us. I had to come from Iceland. I had to go through everything that I went through as a child, sexual abuse, worked too hard . . . I had to become a drug addict and a prostitute, lose my children—to be able to sit in front of my clients and be able to relate. How can I tell a woman that has just lost her children, “I understand how you feel, I understand your pain.” How can I relate to somebody that’s shooting drugs unless I’ve done it myself. So it’s all a plan. I’m not a religious woman, but I have a strong belief in God. I call him God because that’s all I know to call him. He’s almost like a big daddy. I’m not afraid of him, but I want to do the right thing and I want to do a good thing. Because then He will reward me. [Laughs] He is my overseer. And He protects me. And He has handed me so much, He has given me so much . . .

  I am also one of those people that don’t like to talk about death, especially not my own. That is just a little too scary, because when you’re gone, you’re gone—and nobody can come with you to keep you company. I would like for all this experience to be a part of the continuum. So all this education that I’ve had through my life, I would like to be able to take it somewhere else and continue. I don’t care if it’s a big computer in the sky and my energy goes to that. I just want to know about it. Things would be easier if I knew for sure.

  The Old Guy

  Jim Hapgood

  He is a librarian, who retired in 1993. He had worked in the Chicago College System as well as at the University of Chicago libraries. He, a big man, appears frail and obviously weary.

  I FEEL AS if I’m a hundred and one. [Laughs] I’ll be sixty-eight. Since retiring, my friend, Edward, and I used to go to the racetrack quite a bit. I wasn’t the slightest bit interested, but one of his friends took us to a visiting day at Arlington, and I was hooked. [Laughs]

  I realized I was different when I was very young. I would say probably as early as ten. I think people thought of Edward and me as just a couple of friends who got along quite well. I don’t think anyone had any idea. Back in those days, it was just assumed that everyone was heterosexual unless they were proved otherwise. We didn’t do anything to prove it otherwise. We were together from the summer of ’53 until this April, when he died.*

  He died of different things. He actually died of prostate cancer—it had metastasized. And so they put down that he died of stepsis. He had had severe diabetes also. When he finally died, I didn’t realize that he was that close. For the last two years it had been a sequence of having to take him to the hospital or the doctor, usually on an emergency basis. In the course of two years he probably went from home to the hospital half a dozen times at least. The day before he died he had some symptoms. He was admitted to the ICU and I talked with him quite a bit. The next day, he had on an oxygen mask, so it was hard to talk. They said, “He really is not doing well. His whole system is shot and he’s getting organ failure. His kidneys are not doing anything.” He died on the 20th at 2:30 in the morning.

  We lost so many friends from AIDS, it was really discouraging while we were both alive. Actually, he was carrying HIV through the whole thing, but he went to good doctors who used the minimum amount of medicine, so he actually survived. It was listed as the fourth cause of death. It was blood poisoning, prostate cancer, coronary artery disease, and HIV. I could do a quilt for him. I would like to do that, a quilt for the NAMES Project.

  I feel very confused. I was hoping I would die first so I wouldn’t have to go through the ordeal of being a survivor. [Laughs] I think the one who shoves off first is the best.

  You lack the companionship that you had. And I was so used to saying, “Don’t you think thus and so?” Every time I would get something in my mind while we were awake, the whole day, the whole evening, I would say, “Don’t you think so?” or “Why did he say that?,” someone on TV or something. And then I realize he’s not there. It’s very difficult to get through the head that he’s no longer around. Even though I feel him.

  Whom do you talk to now?

  Anybody I can get on the telephone. [A laugh] I have a great numb
er of people to call, but I don’t want to wear my welcome out. I try to spend time eating with friends . . . It’s just a little over a month that he’s gone.

  From what I’ve seen about near-death experiences, I think some of them, if not all, do survive and could be hanging around the apartment or the house or whatever. A number of people nowadays have come forward with accounts of surviving death, near-death experience and all that. I think that kind of gives credence to some thought about survival.

  Edward was cremated. We both chose that a long time ago. The idea of a rotting body doesn’t appeal to me.

  There’s a Buddhist sutra that I chant every day. It’s called the heart sutra. It’s the sutra of transcendental knowledge or something like that. One of my friends said, “It’s all bullshit anyway,” but that’s a bit crude. He actually was saying: even this intricate psychology is not the truth, it’s simply an attempt to understand. I chant several times a day. The altar is over there and I go over and light the incense. I sit in a chair and then I take out the printed sutra, it’s probably twenty lines long. [He chants.] It means the jewel is in the lotus, but it’s supposed to give people consolation. I do it at least once in the morning, sometimes two or three times. [Softly] I don’t have anything else to do. It only takes about five minutes.

  After repeating it several times, I think I understand it better too. I first started reading it about ten or fifteen years ago and it didn’t make a lot of sense. But now it does, so practice makes perfect I guess.