THE MEDIA PROJECT

Living with HIV … One HIV-positive Young Men's Group Speaks Out

We are the S.A.V.E. Boys Group, a support group of HIV positive young men. S.A.V.E. stands for Strength And Victory Everyday. We were all perinatally infected, which means that we were born with HIV.

We get together once a week after school, at the hospital in Philadelphia where we are treated. We wrote down some of our conversations to give you an idea of what we think about everyday, talk about in our group, and what our lives are like.

(The names are not our real ones.) Our ages:

When I first found out I was HIV positive …

BJ: When I found out that I had AIDS, I was mad. I was scared at first. I didn't like taking my medicine so I threw them away and that's not a good thing for anybody to do. My mom told me if I didn't take all of my medicine I would get sick—I got sick and started taking my meds again. Now I take them all the time.

Axel: I thought it wouldn't happen to me, but it did. My life changed when I found out. Because of a virus I would have to be extra protective. The source of the problem was unknown; whoever gave it to my mom …

Lil'man: … or my Dad

Axel: I've overcome the diagnosis now.

Lil'man: I felt mad, depressed, a lot of things, because I had the virus.

Jay: My Mom told me when I was ten years old. I didn't understand it. I didn't know what she meant but I knew it wasn't good. I kept asking why I had to take medicine and she finally told me; I started to understand it about a half year later.

Tee: Mom told me…I was ten years old. I didn't know what to think. I was tired, I just went to sleep. And in the morning I realized what she said, so I asked her who knew, and she said me, grandmom, my aunt, uncle, godmother, and my family.

Ace: I was nine or ten. My mom told me. I thought it was real real bad. I forgot what she said. I just know she told me; I heard about HIV, knew it was a disease but didn't know exactly what it was. I didn't have anything to say at the time. My grandmom started talking to me more and one week later I started to understand. I was devastated … not now … I just handle it the best I can. I forget about it all the time, until I take my medicine.

Tee: I forget about it all the time, too.

Jordan: I found out last year—the nurse and my mom told me. I was surprised, shocked. I went home and punched the wall. I forget about it all the time though.

Polo: I didn't feel nothing because I was young … ten years old. My Mom told me. I didn't know about it—it didn't mean anything. As I got older, it meant something … I got sick. I used to get sick every year and that's when I stared to understand it … it meant something. I felt different.

Clark: At first I was worried, that I was going to die.

Lil'man: I was scared, I felt like the whole world just collapsed.

Cassidy: I was seven or eight. I thought I was taking medicine for my stomach. I was in the hospital for a long time. I thought I was going to die. I couldn't walk. I was ill and weak and I could barely see or walk. Then I felt better and they took me home and gave me medicine, but in another year I fell out and went to the hospital again. When I got out, I got better—getting better was like a dream come true.

Blaze: I found out I had HIV last month. I don't think negative about it. I just think positive about it.

Tee: Ever since my mom told me I have HIV I was more into doctor shows.

Axel: I really look up to the doctor that started this clinic.

Lil'man: That's my idol. He was like a father or grandfather to me.

Axel: No matter what I'd be going through, he was always there to talk to.

Lil'man: Now I'm thinking about memories—I miss that man.

About our support group …

Axel: I thought that everyone would dislike me because of my status. I wondered, am I going to survive the night without going through stress? But then I found out that they are all HIV positive, we all had the same thing. Now we are all family.

Lil'man: Yeah, we're familia.

Polo: I was scared to come to group at first. But everything started being fine because everyone has the same thing I have.

Lil'man: I thought I was going to be the smallest one in here. I was thinking, who's going to be in the group … is it going to be whack, boring?

BJ: I thought everyone was going to be younger than me. I thought I was the only one who had the illness, but when I came to group I felt better because everyone had the same thing as me.

Lil'man: I thought the group was going to be all therapy … it's kind of like therapy …

Axel: … but it's a place to get away from the outside, away from people who don't have HIV, and around people who have the same thing.

Lil'man: It's a place to get away from the world.

Jordan: I thought the group was going to be boring. At first it was, then we started talking about the illness and it got more interesting.

Bravo: I haven't been to the group in a while and I learned that since I've been away everyone here has stepped up to a whole other level. We really grew.

How do I express my feelings and anger? …

Axel: Me … I write poetry.

Jordan: I want to hit something or someone.

Lil'man: (laughing) You're always saying that—for Christmas I'm buying you a punching bag.

Polo: In the past, because of the illness, I didn't care about anything. The streets were calling and I was confused. I didn't care about myself because I thought I was going to die anyway. I used to break my stuff and my sister's stuff. I was confused, then my sister took custody of me.

Jordan: Sometimes I can't control my anger, and I don't know where it comes from.

Lil'man: I think it comes from my family because they're always arguing.

BJ: Me and my friend write a rap about it if someone is talking about my illness.

Polo: I listen to dance music.

Lil'man: I do something like that. I start listening to music and from there I just start rapping. Something like, "Ain't nobody care about me except for my dogs who been with me from the beginning …" I have people that have been there for me, like when I was broke, they gave me money.

Jordan: There's no way to stop anger—people are always going to make you angry. Sometimes if you get in a fight with them they leave you alone, but usually they don't.

Why me? …

Jordan: There's no answer to why me.

Polo: I wonder, why do I have to live like this—I say that a lot.

Lil'man: Why did it happen to me and not other people?

BJ: Why did I have to get AIDS, why didn't my sister get it too?

Axel: Yeah, out of my whole family, why did I get it?

Bravo: Why do I have it and why doesn't my brother have it? Why do I go through the things that I go through, whether it's in a relationship or life period? Why is life so damn tough?

Lil'man: Yeah, I wonder, why me?

Axel: You know some people say, "Why me?" They say it's a curse. I ask why did God put me in a place … did God put me in a place with this virus for a good reason? I'll figure it out in the road ahead, and you'll figure out why God put you in a place with this virus. I think I already figured out why God put me in the world with this virus. God probably put me here to take care of people who have the same thing as me—to take care of my family and my mom. That's the good side of it.

Tee: Is there such a thing as a kid who has nothing wrong with him, no medical problems?

Axel: Nobody's perfect. Everyone has some kind of problem.

What people around me say about AIDS …

Blaze: When my friends came to see me in the hospital last month, they were making fun of a girl on my floor, saying she had AIDS. They didn't know that's why I was there, that I had AIDS. It made me feel really bad.

Lil'man: I was mad because my friend who was eleven, he told me, "See that girl over there? She has AIDS. She was going to get into a fight one day and every one backed up when they found out she had it." I came back at him for that.

BJ: I got in a fight because this boy was saying stuff about my disease … and he's my friend. I'm friends with his brother too, and he told his mom what was happening. So she talked to my friend about it.

Axel: In health class when we learn about AIDS, there's always someone who says that AIDS is for dirty people or gay people, but that's not true.

Tee: There's this kid in my class who's always saying something about HIV this and HIV that.

Axel: My sister got detention one day because she said something back to someone who said that AIDS was for dirty people. One of teachers knows that I got it, so she says something if people starts saying something bad about AIDS.

Tee: Another thing is, these health teachers, they don't know what they're talking about.

Axel: In my health class, they were talking about it. I don't want to hear about it again because I have to hear about it in health class every year. My teacher sent me to the library one day because they were talking about AIDS and she didn't want me to hear it.

Tee: Some days when I leave here and go home, during the week I think about something I want to talk about, like something I see on TV about AIDS. I think, man, I have to wait until group day to talk about it.

Telling others and having relationships …

BJ: All my friends that I told, they told someone else, and they came and tried to fight me. I feel like, I have an illness and I don't want you to take it the wrong way, but if you do, you do.

Jordan: I don't care what people think.

BJ: I won't tell someone until I know them well. They have to tell me something about themselves first.

Lil'man: It's hard telling someone, man.

Axel: I won't even tell my best friend. For me to tell my girlfriend …

Lil'man: … that's the thing, man, one only girl I told, she told me, "It's ok, my pop has it too".

Axel: Everyone will think I'm invisible. If I tell them, they will be afraid to be around me. If I tell my girl before we have sex, she won't sleep with me, and if I tell her after we have sex, she will be mad.

Polo: I don't want to have sex—I'm afraid to have sex. I have girls talk to me all the time, and try to be physical, and I say no.

Axel: Either way you're going to have to make a big decision—when to tell someone.

Lil'man: There's a girl, she likes me, and I want to tell her, but I have to think about—what's her reaction going to be. I've known her for 3 months. What if we break up and she gets mad and tells my friends about me.

Polo: That's something to think about. A lot of girls have been coming at me.

Lil'man: I told this one girl that I love her, and she told me, "I love you" back. Then I told her I have HIV and she backed away. That's when I was fifteen.

Bravo: I met this girl, we got to know each other real well, exchanged phone numbers, got to talking on the phone and everything went well. By November she was calling me like 25 times a day. By December we were kissing and hugging and things got real physical. She kept asking me how I felt, and I thought, I'm not really telling you how I'm feeling. I told her, "In each relationship I have a big secret to tell." I told her, "I'm starting to fall in love with you" and she said she loved me a whole lot. Finally, I told her, "I have a condition I was born with that I have to tell you about." That was on Monday, and she kept asking me all week what it was. Finally on Friday I told her, "I have HIV - I'm HIV positive." I asked her, "How do you feel about it?" She said, "I feel fine, by the way you were talking I thought you had cancer or something." I said, "How do you think your mom will react?" She said she didn't know. But, now last week she's been treating me differently. She's been acting funny lately. Normally I'd be ready to cut this girl off, break up—but this one, I feel differently about her. Today I wanted to go over to her house, but she said she was going to go home and lay down.

Axel: There's a girl out there I've known for a long time and she has HIV, but she doesn't know that I have it. I don't want to tell her yet. She said she wanted to marry someone with HIV. On one hand I was happy, and on the other hand I was sad - happy because she may want to go with me, but sad because she has HIV.

The future: starting a family, having kids, finding a cure …

Jordan: I'm going to adopt a kid.

Tee: I'm going to adopt because I don't want my kid to have the same thing I have—HIV.

Jordan: Me too, same reason.

Lil'man: Not me, I want to tell my wife about my HIV and have my own kid.

Axel: Me too.

Clark: I worry that my wife will catch it when I get married someday.

Tee: If the mom doesn't have it the baby won't have it.

Axel: You really got to think first before getting a girl pregnant.

Lil'man: Aren't we supposed to have a cure for this thing in the future?

Axel: Yeah, with all this technology.

Ace: I heard that they can take your sperm and clean it so it doesn't have HIV in it. They can put it into your girl, or your wife, and get her pregnant with out her or the baby getting HIV.

Axel: But some people won't do that because it won't feel the same.

Tee: If the women knows she has HIV and she takes meds soon enough when she is pregnant, the baby may not have HIV.

Axel: If there's a cure someday, you'll be mad, because, you'll think that there's a cure now, but your mom died and it could have saved her. Why didn't they find a cure when your mom was living? But if there is a cure I'll be happy because I won't pass HIV onto my wife and kids.

Lil'man: I want kids so bad—I'd be proud of my son.

Axel: Yeah, I'd want to give my son things that I didn't have when I was boy.

Ace: I just hope things get better—with technology and curing diseases.

Axel: If I were ever famous with a lot of money, I'd donate it all to finding a cure.

Ace: I would like to find a cure myself in the future, using herbs and stuff like that.

Jordan: Every second is the future.

When we're older …

Lil'man: It will be cool to look back on this, what we wrote, when we're older and say, "Did I say that?" and see if we feel the same.

Bravo: I'll look back and say, "Look how tough it was. I remember when you were like that and you were like that" and I'll say, "damn homie, it's been tough, but it's been a rough and exciting time."

Tee: How old do you have to be before you're too old to come to group—18?

BJ: That's corny—I'm still gonna come even when I'm old!

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