by Studs Terkel
POSTSCRIPT
Recently, he had a relapse. At the hospital, the diagnosis was the dreaded one. He was dying. His family came, last rites were to be offered. But something startling happened. Brian said, “While I was out of it, I heard a voice that said, ‘Brian, your time is not yet. You still have work to do.’ ” He recovered somewhat, only to have another setback. He did get out and volunteers at the Open Hand Society.
Jewell Jenkins
I’M A BLACK WOMAN trying to succeed. I’m sixty-one. I work for Cook County Hospital. Housekeeping. I take the job serious, as though I’m doing it for a family member at all times. I consider most people family members, because I want to do the best job I can. I come from a lower-class black family. I was raised only by my mother. My father was in the service. I was born in Cook County Hospital. I feel my mother did the best she could. She raised us in the Catholic Church. The religion was very strict. You went to church in the morning before you went to school. You had to be respectable, you had to obey your parents. When I get home, like Sunday morning from Saturday night working, sometimes I don’t get right to sleep, so then I’ll go to church. But if I lay down and go to sleep, sometimes I sleep past the Mass. I work forty hours a week. But this past weekend, I worked sixteen hours a day.
I get a joy out of doing things for people, I don’t know why. I don’t work with AIDS patients anymore, but I worked strictly on the AIDS ward for nine years. When I got hired, the ward was opening up and they didn’t have a housekeeper because a lot of people were afraid. That was 1989. People are still afraid of it. I used to tell my co-workers that it was the safest ward to work on. You knew what you were dealing with. This was one specific disease. As I learned more about it, this disease hits the nervous system, it kills the immunity system. So I told my co-workers, you are more of a death threat to these patients than they are to you. You can bring in a germ that won’t bother you but will react on them. You can have a cold and it’s just a cold, but if they’re exposed to you, they can pick up the cold and it can turn into pneumonia, also turning into PCP [pneumocystis carinii pneumonia] and that can be fatal. My co-workers always felt like I was going to catch something: “Oh, you’ve got to wear your gloves, and you’ve got to wear this and you’ve got to wear that.” I found out that the AIDS patients that I worked with were more concerned about me: “Don’t forget to put your gloves on,” “Be careful when you pick this up,” “Don’t touch that.” They were caring for me.
When I first started, there were mostly gay men. There were one or two of them I got friendly with. I met the family. After work and days off, one particular guy that died, I went to his home. I had dinner with his family. It was like, “Nobody wants to be my friend but you. Why do you want to be my friend?” I said, “Well, you ain’t never done nothing to me. You’re all right with me.” This one particular guy that I went to see, his parents were like feeding him with a long-handled spoon. He was in a wheelchair. When I bent down and I hugged him, they were like, “You would hug him?” This was their attitude—his own family! They didn’t say anything, it was just the looks that I got. They had like a small apartment downstairs for him. He was allowed upstairs, but he lived downstairs in the basement. We sat down there for about an hour and a half until his mother called us up for dinner. I could tell by the way he reacted, it was like he felt shoved away. They didn’t want to be close, and he felt this. While we were sitting downstairs he was saying, “They really don’t want me here.” I said, “They brought you home—they evidently want you here.” “They just brought me home because it was time for me to be released from the hospital and I had no other place to go.” I said, “No, it’s not like that.” I was trying to convince him that his parents still cared, but I could see from the reaction they cared in such a way, like, it’s more of a duty than something I want to do. This is something he was starved for, love and affection.
Sometimes people don’t have to say things, you just watch their expressions. This is why I like to watch people’s body language, their facial expressions. The mother and father and a sister. It was like, “You’re doing some of the things that maybe we should do but we’re afraid to do them.” He used to always tell me he loved me. While he was home, every morning he would call back on the floor and talk to me. “What’s happening? Who’s up there? What are they doing?” He was up on the ward for about three straight months. He left for home, and he got sicker. He came back and he stayed for another three months. The second time that he went home, he was doing pretty good and he would call the ward every morning. He would always talk to me and I’d say, “I’ve got to get off the phone ’cause I’ve got to start working.” But he just wanted to talk.
He died. The killing thing about that was his father didn’t have a phone number for me. The kid was only twenty-two. What he did was he wrote my phone number down, but he didn’t put a name at it. I hadn’t heard from him for about three days and I got worried so I called the house. His mother answered the phone and she said, “I’ll let you speak to his father.” In the back of my mind: “I don’t want to talk to his father, I want to talk to your son.” So his father got on the phone and he told me the kid had passed. They had had the burial and everything.
God is the person that I can go to no matter what. Whether I speak out loud to him, whether I go to a church, or whatever. He knows how I feel, He knows what I think. I don’t have to ask, because He knows exactly what’s going to be in my lifetime for me. Because in my life, I’ve had a lot of problems. When I was down and out, it was like nobody can help me. I had that time. And as things went on they got better and better. I get in the car and I say, “Let me get to work on time, safely.” I say that every time I get in the car.
My mother was my influence in life. She ran the elevator in a hotel, she was a cook, she was a salad girl. There were four kids, and I was the last.
I believe there’s a Heaven. I believe we’re in Hell now. On Earth we are in Hell. [Laughs] Me, as a black woman, I’ve encountered a lot of things that I’ve learned how to just shrug them off and say, “OK, that’s the way the ball bounces. Tomorrow, I’ll bounce it a different way and see what happens.” I try never to let things get me down. I have high hopes for myself—I have high hopes for my children.
I’ve decided life is for me now, I’m going to live it to the fullest. But there’s got to be something better than this. [Laughs] I don’t worry about dying, because I know that the life I have is over with. If I die tomorrow, I will feel like I have achieved and done everything I’m supposed to do. Like, OK, when I finish here, I’m going home. And home is where I’m struggling to hold on to. I seriously started thinking about donating my organs to help someone. I don’t know if out of my eyes that someone would see what I see. With my heart, would they feel like I feel? But I’m seriously thinking about doing it because to me there’s no need of leaving it and letting it deteriorate and not do any good. Maybe the heart that they might be losing would be a bad heart, a lot of animosity in their heart. And getting mine, maybe it would change the way they felt.
I’ve had grief when my nephew who had AIDS died and the guys in the ward I had gotten friendly with. It hit me hard—but I worked through it. I hope that they lived a good life, that they achieved some of the things they wanted to and didn’t leave a chaos here on Earth with the people they left. The family members that come that lose people, they, like, “Oh, they’re gone, oh what am I gonna do?” Well, to me, sure, you’re gonna grieve, sure, you’re gonna miss them, but you get loud and to a certain extent rowdy with their death because you didn’t do what you were supposed to do.
It’s guilt. And that makes me mad. Oh, I wish they’d hurry up and leave. Because they’ve got to wash the body, they’ve got to wrap the body, they’ve got to send the body to the morgue. Then I can do my job, I can clean the room. There’s very few people I’ve noticed that will die quietly and family members won’t clown in the hospital. Like I tell my kids, when I die, don’t cry and be s
ad, rejoice. ’Cause my problems is over. You’re still going on. Rejoice. Hey, she’s going to a better place.
Justin Hayford
He is a journalist as well as a musician. His current work is as a case manager at the AIDS Legal Council of Chicago. He performs weekly at a local piano bar, playing standard show tunes in the manner of Bobby Short.
WE PROVIDE LEGAL service to those who are HIV-positive, who can’t afford attorneys. We do a lot of discrimination work—folks who have been fired from their job or doctors who refuse to treat them. We help people who are trying to get Public Aid or Social Security who have been wrongly denied, which happens all the time.
Social Security and Public Aid are full of idiots. They don’t know what they’re doing half the time, and they make mistakes. If you’re really sick, it’s very hard to negotiate that system. It’s so bureaucratic, so confusing. Folks with HIV very often have a lot of mental impairments from the virus, so we need to help them go through that system. We do a lot of work with parents who are HIV-positive, to plan for their kids when they pass away. We do a lot of confidentiality work. If someone discloses another’s HIV status publicly, that’s illegal. It can really harm their lives. A lot of wills, powers of attorney, things like that. It’s trying to arrange a guardianship for that child of HIV parents. Guardianships are particularly terrifying and awful because here’s this twenty-five-year-old mother who is planning to be gone in six months, and she’s got a three-year-old. She looks at that child and you can see in her eyes: I will never see this child grow. This child may not remember me. It’s just heart-wrenching. We try to find if there’s somebody in this family or a friend who would like to be the guardian. The other problem is you’ve got that father out there somewhere. Legally, he’s got a right to that child. So you’ve got to somehow get him involved. Often the father has not been around forever—maybe he’s a junkie, maybe he’s unemployed, who knows what he does? When the mother passes away, her Social Security benefits go to the child. So this child is now income. Whoever gets this kid, gets a Social Security check. That makes people really ugly.
I’m thinking of a woman, Charlotte, which is my mother’s name. She was just twenty-five, African-American. She grew up in the projects. She was staying at a resident’s house in Chicago, a house only for people with HIV. I went over there to see her. Who actually met me at the door was the three-year-old. She instantly ran over and threw her arms around my legs in this big hug. This was so amazing, that a three-year-old, meeting a total stranger, was this affectionate and loving. She spent a lot of time in the hospital with her sick mother, so she needed lots of affection from all the nurses and all the staff and all the doctors—and they gave it to her. Now she thinks any person that she approaches is a loving hug coming her way—which was beautiful. So I went to talk with her and my sick client’s mother and father; they were going to become the guardians of this child. They were in their fifties as I recall. They were just lovely people. They had not turned their back on their daughter, knowing what she had. I’ve seen that happen too many times to count. It’s unbelievable that people can lose their families, lose their houses, lose the affection. It’s really awful. Her parents were there for her. I discovered through the conversation, they were really her aunt and uncle. She had been raised by them because her mother had died quite early in life. They said to me, “We think of her as our daughter because we raised her, really.” It was just this very long and pretty awful discussion: “Sign all these papers.” It’s forty million court papers you have to sign—this really, really impersonal dry bureaucratic process they have to go through.
Charlotte was terrific. She seemed very calm, very wise. She knew enough to call us and say, “I better do this now.” She went very quickly after this meeting. We thought she would last for much longer than she did. She was very calm, she was very stoic, but every time she looked at the child, there was this very deep, profound sadness, mistiness, absence in her, just watching what she was about to lose.
At the same time, there was in her eyes this enormous sense of pride that she was doing this very difficult, heroic thing. It’s the last thing you want to actually face and make legally true: giving your child away. I also think making the decision to finalize the legal arrangements for the child gave her permission to let go . . .
I grew up in the classic cloisters of suburbia, upstate New York, just outside of Rochester. A very quiet, very conservative upbringing. My passion was science—I went to Northwestern as a physicist. And then just on a lark I took this strange class called the Analysis and Performance of Literature. Which was about getting up in front of a class and performing a poem, a short story, a novel. And I was thrilled! So I switched my major to this thing called Performance Studies. [Laugh] I did that, and when I finished my master’s at Northwestern in ’87 I did a lot of directing and writing for the theater. One of the first things I did, in 1989, was a big show called The Bride Who Is a Stranger, which was all about our changing identities because of the epidemic of AIDS. I had done a ton of reading about the epidemic.
As a gay man, it was hard to avoid: it was happening to my community. Every social justice issue intersected this epidemic, right? If you could look around, you could see that this is all about racism, this is all about homophobia, this is all about poverty, this is all about lack of access to health care. They were all there. That has always been one of my greatest interests in life: social justice.
If the cure for AIDS was one clean glass of water, half the people in the world with this problem couldn’t get it. So the cure for AIDS is not medical, the cure for AIDS is political. Why do so many people every year die of tuberculosis? Because we don’t have the political will to get them what they need to be healthy. That political fight will never end. I hope I will have the stamina to maintain the energy to keep it up, because it’s very discouraging. You can’t end AIDS until you end every social illness out there. You can’t end the epidemic until you end the social problems which allow it to spread, right. Why do black people have a high rate of HIV infection? Are black people more susceptible to a virus? No. It’s racism—period. They don’t have access to the resources that I do. Why are women in domestic violence so often affected? Because they have no power over their sexuality. So we have to end violence against women to end the epidemic. For us to go into poor black communities and say, “Your problem is HIV,” they say, “No, my problem is the crack dealer on my corner and getting shot at as I walk to school. What are you going to do about that, Mr. White Social Worker?” How dare we set the terms for their problems? We need a constant overhaul of how we fight these battles.
We all sort of forget about the early days of the epidemic. Whether you were sick or not, everybody had this thing—because you didn’t know. There was no test for it. The way that we all thought of it was: the community is under attack by a virus and by a conservative political regime which doesn’t care if we live or die. There was this amazing galvanizing effect of that. We weren’t fighting just a health problem, we were fighting a political problem. We had to fight the system, because there was nobody else to take care of us. The HIV tests began in March of 1985—fifteen years ago. Until then, no one knew what the hell was going on. There was no way of telling who had what, right? It didn’t matter if you were sick or not, or even afraid you were going to be sick, it was a problem which affected a whole community. That, to me, was extraordinary.
I remember one of the early Act Up demonstrations that I was part of—Act Up, the AIDS Coalition to Unleash Power. It was the big street-action group. I was never a member. This great crowd of mostly gay men shut down the street, threw all these mattresses in the street to scream about the lack of beds for women with AIDS at Cook County Hospital. There were only sixteen beds. I thought: When, ever, in the history of America, have gay men screamed in the streets to give women access to health care? I thought: I have arrived in utopia. This is extraordinary! That coalition, that sense of we are fighting for social jus
tice, was extraordinary and empowering—and we’ve lost that. That is what got me involved.
As far as I know I do not have HIV, and I don’t feel any closer to death from having done this work. About five years ago, I remember, I was driving along on I-55 towards St. Louis: if you look to your right, there’s the entire skyline of Chicago from the south, you see the whole city at once. And I had this moment. I was about thirty and I said, “That city will be here whether I’m here or not, and it doesn’t particularly care if I’m here or not.” There’s something very beautiful about that.
I was walking home from work the other day, down my street, which is a beautiful little tree-lined street in Lakeview. And I thought, How will I ever be able to leave this? I’m hearing somebody’s television, I’m hearing a dog bark, I’m seeing a couple guys walk by—this is nothing, but this makes me so happy. There’s this nice cool summer breeze. How will I ever leave this? How will I ever be prepared to say, “I don’t ever need to walk down that street again”? I can’t imagine. Knowing you won’t be there . . . it’s terrifying. Just the other night I woke up at about two in the morning, which is the only time when you can really feel what it’s like that you’re going to die. All your defenses are down maybe—you’re in that strange state. And I just had this feeling of . . . I looked around my bedroom which is nothing special—I’ve got a little one-bedroom apartment. There’s my little computer, my little brand-new bookcase which I put together myself . . . And just this terrible, terrible sinking feeling: I don’t ever want to leave this. I’m given so much comfort by this strange little room which is nothing special whatsoever. But it’s me. I can’t imagine leaving it behind.