February 1, 2011
Welcome to This Positive Life! We have with us Leslie and Andrea Williams. In 1993, after a brief stint in jail, Leslie, a recovering IV drug user, tested positive for HIV. While most people would have focused on themselves, Leslie was more concerned about having to tell his wife, Andrea, who also tested positive. Instead of growing apart, they relied on each other to cope and live with their disease. The couple talks to us about how support groups helped them cope with their diagnosis; the vow they made that HIV/AIDS stops with them in their family; and how Life Support, the HBO film based on Andrea's life, has given them a larger platform from which to educate people about the epidemic.
Kellee Terrell: This is Kellee Terrell reporting for TheBody.com, and welcome to This Positive Life video series. Today I have with us Andrea and Leslie Williams. So let's start from the beginning. We're going to start with Andrea first. Andrea, what year did you find out you were positive?
Andrea Williams: In 1993. My husband came home and told me that he was positive. So I went and took a test.
Kellee Terrell: And how did you know you were positive?
Leslie Williams: I came home from jail and I went to get a test, and I found out I was positive.
Kellee Terrell: Did you know anyone else that had tested positive?
Leslie Williams: Yes.
Kellee Terrell: And so what did you know about HIV?
Leslie Williams: Well, I know my brother died from the virus in the early '80s. But, I was still getting high at the time, so I didn't pay it any mind. I probably thought it was a gay disease. That's how I knew about the virus then. So my brother died from the virus. And eventually all the people I used to shoot drugs with, they were just vanishing. So when I came home, the probation officer (PO) told me, "I think you should go get tested," so I went and got tested. And they told me I was positive.
Kellee Terrell: And so were you dreading coming home and telling your wife?
Leslie Williams: Oh, yeah. It wasn't the positive diagnosis that I was worried about. It was my wife I was worried about.
Kellee Terrell: What were you worried she was going to do?
Leslie Williams: She was probably going to kill me! Because I always thought I was safe. You know, I always thought I had the clean needles. I thought I was always safe. But eventually I wasn't.
Kellee Terrell: And so he comes home -- "Hi, honey" -- and he tells you that he tested positive. What did you think?
Andrea Williams: Well, I knew that if he was positive, I was positive, because we had unprotected sex. He was my husband. We were trying to have a baby. So I knew I was positive.
Kellee Terrell: And were you in recovery at this point? Had you stopped doing drugs, or were you still using?
Leslie Williams: I'd stopped doing drugs.
Kellee Terrell: Oh, OK. And so how many years had it been between you being clean and you testing positive?
Leslie Williams: Well, I'd been clean, what? '89 . . .
Andrea Williams: . . . to '93.
Leslie Williams: To '93, yes. From '89 to '93.
Kellee Terrell: So you get this news, and you're just, like, "I must be positive." And so did you immediately go get tested?
Andrea Williams: He set up an appointment for me to get tested where he went. And I went to the library and I started reading. I found out that people could live with it. You just needed to educate yourself, get enough information. If you need to take medicine, take medicine. Live right. No drugs. No alcohol. Rest. You know? So I found out as much as I could in '93 -- because in the library, there weren't a lot of books. There wasn't a lot of information.
-- Leslie Williams
And going to the doctor; talking to the doctor; reading books at the doctor's office. And that's how I really got information. But I did know that I didn't want to die.
Kellee Terrell: Now, in '93, there really wasn't any medicine, other than kind of like AZT?
Andrea Williams: AZT was it.
Kellee Terrell: Leslie, did you ever feel guilty?
Leslie Williams: Guilty about what?
Kellee Terrell: About passing HIV to your wife?
Leslie Williams: Yeah, I feel bad about that. Yes. Because that's the only thing I was really worried about. Because I was going to deal with this no matter what. Because I think somewhere down the line my mother told me, "You know, your brother died from the virus, and you're shooting drugs." So I lost my brother. I lost my father. I lost my aunt. I lost about four people in my family to the virus.
Kellee Terrell: How did you guys move forward together?
Andrea Williams: Through, basically, information and education. Just watching what he was going through. Because when I found out I was positive, I was newly diagnosed, and newly positive. So he, on the other hand, came home with a bottle of pills -- AZT. And he had AIDS. So he started taking the pills. And I watched him get sick.
Kellee Terrell: Taking AZT?
Andrea Williams: Yes.
Kellee Terrell: What were some of the side effects you were having?
Leslie Williams: Throwing up and in the bathroom all day. I took all the pills that were out there.
Andrea Williams: No, but, originally, in '93, he was taking just AZT.
Leslie Williams: Yeah. But in '93, it started with that.
Andrea Williams: And because I saw him getting sick, I took the pills and I threw them in the garbage.
I said, "You weren't sick before you started taking the pills."
Kellee Terrell: And so when did you start taking a new regimen?
Andrea Williams: You know what? The next time he started medication was probably when Crixivan came out.
Kellee Terrell: OK.
Andrea Williams: Remember they used to deliver it in the mail? So he was taking Crixivan, which was the first protease inhibitor. And I still wasn't taking medication. And I didn't see him get sick. It was different.
Kellee Terrell: And you felt like you were getting better?
Leslie Williams: No.
Kellee Terrell: You didn't feel like you were getting better?
Leslie Williams: The medicine wasn't working for me. Since I had been diagnosed with HIV my CD4s have never been over 300. Never. As of right now, I barely get over 300 to 400. And I had the virus for almost 20 years.
Kellee Terrell: So how is your current regimen now?
Leslie Williams: It's working for me now.
Kellee Terrell: So, let's talk about you. When did you start taking a regimen?
Andrea Williams: I started taking medication when I became pregnant.
Kellee Terrell: And what year did you become pregnant?
-- Andrea Williams
Andrea Williams: In 1996. I went into a clinical trial, into AZT 076; they were giving AZT to pregnant women to stop the transmission of the virus to the unborn child. And I went to that clinical trial at Bellevue Hospital.
I took the AZT, and I gave it to my baby for a couple of weeks. But also, the reason why I went into the clinical trial was to know, the day she was born, whether or not she had the virus. So they did a viral load that day. She wasn't positive.
Kellee Terrell: And so how scared were you?
Andrea Williams: Very. During my pregnancy it bothered me more not being able to really talk to anybody who was going through the same thing. So what I did was, I started going to this support group at the clinic, where there were other pregnant women, but they weren't positive. It was a high-risk clinic. So you had women who used drugs and women who had diabetes.
And everybody had issues, worrying about their babies. But it helped just to talk to them. And you know my ninth month was probably the hardest because it was more or less: I'm positive; he's positive. I don't want my baby to be positive. But if she is, we can deal with this.
Kellee Terrell: Were you afraid of people judging you for getting pregnant?
-- Andrea Williams
Andrea Williams: No. I could care less. But when I was first diagnosed, I was told not to become pregnant. You know, the counselor here said, "Oh, you shouldn't get pregnant because your baby will have AIDS." So from '93 to '96, we used condoms. And then I started reading. Through my reading, I found out about the clinical trial. And I said, "You know what? We want a baby." We had kids. We had kids, but we didn't have any together. It was time.
Kellee Terrell: So were you excited?
Leslie Williams: Yes, I was. Every time.
Andrea Williams: Every time what?
Leslie Williams: Every time I tried to give you a baby. [laughter].
Kellee Terrell: You have other children?
Andrea Williams: Yes.
Kellee Terrell: And you had tested positive after you had had these other children, right?
Andrea Williams: Right.
Leslie Williams: Right.
Kellee Terrell: What did it feel like to have to tell that? And when did you tell that? Did you wait until after Jade was born?
Andrea Williams: The oldest one I told right away, when I first found out I was positive. She was, like, 13 at the time. And the little one: I didn't tell her immediately. She was about eight when I told her. And how I wound up telling her was that she was here one summer.
Kellee Terrell: She didn't live with you at the time?
Andrea Williams: No, they were living in Virginia with my mother. And they would come up during the summer. So I had to go to the doctor, and I told her, "Well, I've got to go to the doctor tomorrow. So you'll go over here and I'll be back later."
And she said, "Mommy, why you keep going to the doctor?" Because I went to the doctor the week before. So I just said to her, "Because I'm HIV positive."
And she just sat here, and she looked. She didn't say anything. Then she said, "So why didn't you use condoms?" Now, this girl was eight years old. I was shocked, and I just didn't know what to say, so I said, "Because I didn't think about using them at the time." And I just walked away.
But she knew because during that time, they had the talk shows like Sally Jesse Raphael and these shows had these kids who were talking about HIV. And she learned from them. So she knew more than I thought she did. But she was ready. She needed to know. And I told her.
Then we talked about it. I said, "So what do you know about HIV?" And she told me everything that she knew.
Kellee Terrell: And she was eight?
Andrea Williams: She was eight.
Kellee Terrell: And what about the 13-year-old?
Andrea Williams: Ebony knew already. You know, she had information. She knew what was going on.
Kellee Terrell: And so how did you tell your other kids?
Leslie Williams: I just told them.
Kellee Terrell: And what did they say?
Leslie Williams: They didn't say anything.
Kellee Terrell: And how many other kids do you have?
Leslie Williams: Three girls.
Kellee Terrell: Three girls. You guys have all girls? That's six girls.
Andrea Williams: All girls. Six girls.
Kellee Terrell: Even though it's the '90s and people are talking about HIV, living in Brooklyn in a black community, there was a lot of silence -- and still is today. How did you kind of navigate your way through that?
Andrea Williams: Well, I started going to a support group. During my pregnancy was when I needed a support group. So I started going to support groups, like, after I had her. I met a group of women. I went to a conference in California in '97. And I met some women. They were in a group called Sister to Sister. So I joined their group.
-- Andrea Williams
From joining Sister to Sister, they had a men's group called Brother to Brother. He went to Brother to Brother. So, we went to support groups.
Kellee Terrell: How beneficial were support groups for you?
Andrea Williams: Well, I went to three different support groups during the week, and each one of those support groups gave me something different. I went to the support group at CAMBA, which I think was the best. Because there was always a topic at every meeting, so it was structured. It was a great group. I think that's the group that I got the most out of, from sitting in a room with 20 women: mothers, grandmothers and even great-grandmothers. And everybody had a positive attitude. Everybody was living and came every week. And everybody had something good to say. And it was all about living. Nobody was down, talking about, "We're dying." None of that.
The other group I went to was at Betty Shabazz. I liked that group because they had movie tickets. They went to Great Adventure. You know, they did things outside. You could bring the kids.
And then the other group, Sister to Sister was so much different. It was, um . . . we would go from house to house. So it was like 10 women in the group. Every week we would go to a different house. Whoever hosted it would cook the food. It was just interesting, because each week you thought that these women would grow. They would come with an issue. We'd give our information, try to help them; and here they come, back with the same issue the next week.
So a lot of times I was sitting there, saying, "Why am I in this group? I don't need this group." But that group needed me. Even though they had facilitators and I was just in the group, the women wound up calling me during the week, right? If something was going on, I'm the person that they wound up talking to. Because the facilitators, too all had issues. I guess you're put in places for a reason. So that's the only reason why I kept going to that group.
Kellee Terrell: That's a big commitment to go to three support groups a week.
Andrea Williams: Every Monday night for two years, we did Sister to Sister. He used to keep the kids when they used to come to my house. He would take them to the movies. We lived in Canarsie. The movie theater was across the street. Everybody would bring their kids.
Kellee Terrell: And so what was your support group experience like?
Leslie Williams: Well, my support group: when I was going to my other doctor in Manhattan, we had nice support groups. We had speakers that came out every day. And the room was always packed. We always learned something -- it was worth going to. Even though sometimes they finished at eight or nine o'clock in the nighttime, it was very educating, and you always got something out of it.
The men's support group is just like the same thing as the Sister to Sister group. They come in; it was just like they were depending on me to bring them the information, because they didn't have people coming in and speaking. We would go there. We'd share our problems. We'd tell them what's going on: "What type of medicine are you taking?" "Don't go to this place." "Don't go to this one."
And when we first got tested, nobody wanted to never go to the HIP Center in Brooklyn, because they didn't know anything. All of us always went to Manhattan for our service.
Kellee Terrell: Why didn't you stay in Brooklyn?
Andrea Williams: Well, in '93 -- the people who knew about HIV were the white gays. And they were the ones who were getting treatment; they were the ones who were living; and I needed to go where they were going.
Kellee Terrell: And so how important was it that you two were support systems for each other?
Andrea Williams: It was interesting. It was really interesting. Because I had to talk. I'm the type of person that needs to talk about issues, always. Let's talk about it. He didn't want to talk about it.
Kellee Terrell: You didn't want to talk about it? Why not?
Leslie Williams: I didn't talk about it.
Andrea Williams: I couldn't talk to him about HIV in the house.
Kellee Terrell: Because why?
Leslie Williams: I didn't want to talk about it.
Kellee Terrell: Why?
Leslie Williams: You know, because she'd always come with something that made me feel bad.
Kellee Terrell: Bad about what?
-- Andrea Williams
Leslie Williams: When I say bad: She was right, but I would feel bad.
Kellee Terrell: Can you give me an example?
Andrea Williams: Sure: "What's your T cell count?"
Kellee Terrell: Oh, yeah. I could see how that could make you feel bad.
Andrea Williams: But his answer was always, "I don't know."
Kellee Terrell: You didn't know?
Leslie Williams: I knew. I didn't want to talk about it. Sometimes she'd told me that her T cells were . . .
Andrea Williams: Let's not talk about my T cells.
Kellee Terrell: Oh, but we can talk about his; but we can't talk about yours.
Andrea Williams: No. Because people hate when I tell them what my T cells are.
Kellee Terrell: So are they are 1,000?
Andrea Williams: More than 1,000.
Kellee Terrell: Oh, yeah.
Leslie Williams: Well, she got the most T cells between us, but . . .
Andrea Williams: I get sick.
Leslie Williams: I never, never got sick in my life.
Andrea Williams: He never gets sick.
Kellee Terrell: Well, let's take a step back, to what you were talking about before. So you didn't want to talk about it. All you wanted to do was talk about it.
Andrea Williams: I had to.
Kellee Terrell: People react to HIV so differently. Some people, the minute they find out about it, they just submerse themselves in educating themselves and then there are some people who are just, like, "I don't really want to talk about it."
Andrea Williams: I had to find the support groups to go to. That's the way I was able to talk because he didn't want to. And how I found out about his CD4 count and his viral load was by going with him to the doctor. We had appointments together. We saw the same doctors. I would sit in the room while he got his blood work, and I would get copies and bring it home. I had a chart on the wall. And we would just put everything on the chart.
-- -Leslie Williams
Kellee Terrell: Did you think you would make it this far?
Andrea Williams: Oh, yeah.
Leslie Williams: Oh, yeah.
Andrea Williams: We were going to live.
Leslie Williams: There was no doubt about that.
Andrea Williams: There was no dying here.
Leslie Williams: We never. We never -- even our family would never come to us and say . . .
Andrea Williams: "You will die."
Leslie Williams: We just knew. It's something in us. You know, we're going on 22 years married. And we had the virus for so long. And so I'd say to myself, "This is not what's going to kill us." As of right now, she's still getting it. I got to my different doctor; she goes to her different doctor.
Kellee Terrell: For the people who are watching the video right now: Andrea and Leslie, their life was portrayed in the HBO film, Life Support, which was directed and written by your brother Nelson George. When he approached you about the possibility of basing a movie off of your life experiences and addiction and HIV, and the work you do, how did you feel, initially?
Andrea Williams: It was, like, OK.
Kellee Terrell: You weren't worried that you were going to air your business?
Andrea Williams: No.
Kellee Terrell: And how did you feel?
Leslie Williams: She did everything.
Andrea Williams: Originally, I kept him out of it, because I didn't know how he felt about it. So I wouldn't even use his name. You know, I just; I wasn't sure. I was the person who was going to be up front. I was the person who the movie was basically based on: you're going to see Andrea Williams. You don't have to see Leslie Williams, if Leslie Williams does not want to be seen.
Kellee Terrell: You said it was her show, do your thing, but how did you personally feel about having kind of your life experiences out there? People in Brooklyn were going to know it was you.
Leslie Williams: I wasn't worried, it's just that, I deal with more people in the line of work that I do, than what she does.
Andrea Williams: I'm dealing with just the same amount of people. It's just that my community was more HIV friendly.
Kellee Terrell: Right.
Leslie Williams: I'm working with people who have nothing to do with HIV.
Kellee Terrell: Where do you work?
Leslie Williams: I work in a supermarket.
Kellee Terrell: And so did people at the time know that you were positive?
Leslie Williams: Nobody knew that I was positive.
-- -Leslie Williams
Kellee Terrell: Were you afraid to disclose? Do you think that people are not as educated about HIV as they need to be?
Leslie Williams: Yes, most definitely. Because there were times at the job and I hear how some of my co-workers would talk about HIV. They had no knowledge, whatsoever. But I feel that if it's important for me to tell someone I am living with HIV, I will.
Kellee Terrell: So let's go back to the movie.
Andrea, I thought your scenes were great. How did you feel about all the attention? Was it something that you were prepared for?
Andrea Williams: Not really. I like to be behind the scenes. I don't like to be the out-front, to be the spokesperson for life. But it put me in the forefront. I was able to accept it, and work with it.
Kellee Terrell: Accept what?
Andrea Williams: Being in the forefront, having to speak about HIV. But it wasn't new. I had been doing it all along, but not in such a large arena.
Kellee Terrell: I remember the first time you and I had met; we had met at BAM. At the time I worked for another publication. And I just remember you were comfortable, but I could tell maybe you were a little, like, "This is a lot of people up in here."
-- Andrea Williams
Andrea Williams: But then it just got bigger and bigger. Now colleges are using the film for their social work classes, community health worker classes and all different classes to educate their students. And I'm glad, because that's what it was made for -- as an education piece, not just to sit in HBO's vault. It's so many things that you can learn from the movie; it's so many subjects that it touches. It's not just HIV.
Kellee Terrell: Well, it's going to have a legacy. It talks about so much. I think some of the best scenes weren't -- even though Queen Latifah was amazing and won a Golden Globe and a SAG award, which was fabulous . . .
Andrea Williams: And she never won those before.
Kellee Terrell: Yes. And it was based off of you!
Andrea Williams: That's right.
Kellee Terrell: But I thought the most powerful scenes were the ones with the support groups. They feel the less scripted.
Andrea Williams: Well, they weren't scripted. They weren't scripted. And those are real women who were living with HIV, who were in my support group; and they're my support system, my friends.
Kellee Terrell: And so what have people said to you over the years about the movie, thanking you about the impact? Is there anything that kind of stands out to you the most?
Andrea Williams: I see people all the time. And they'll say, "I showed the movie to my mother," or, "I was able to talk to my kids about it, and I showed them the movie." And it's opened up conversations for families, to sit down and be able to talk about HIV and its impact on people's lives.
I recently got an e-mail from somebody, a young guy, about 17; he said that it made such a difference in his life. You know, he watched the movie.
Kellee Terrell: Speaking of families, I remember I interviewed you, Leslie, a few years ago, and something that you said has always stuck with me. You were talking about the fact that your father had died, your brother had died, that you were positive, your wife was positive; and you had said, "We want for HIV to stop with us. We don't want for the girls to have to deal with it. We want for it to stop with us." It was profound. I don't know if people even think that half of someone's family can be affected by one disease, especially HIV.
Andrea Williams: Generational HIV.
Kellee Terrell: How important is it that you continue to do the work that you do?
Leslie Williams: I just keep talking.
Andrea Williams: That's all you can do.
-- -Leslie Williams
Leslie Williams: That's all you can do, is keep talking. If you know somebody and you can help him, one person a day, then just keep talking. And the way I talk, people listen.
Kellee Terrell: Yeah, they do.
Leslie Williams: Do you remember that Magic Johnson incident?
Kellee Terrell: Yes! For the people who are watching the video right now, a few years ago we were at a church in Brooklyn where Magic was having an HIV/AIDS event. I believe it was the "I Stand with Magic" campaign. The church was completely packed and Leslie was sitting up high in the balcony. And then you started talking loud-- not yelling, like, disrespectfully, but you just started talking.
And what you said to Magic Johnson was, "I need for you to, you know, understand that as a straight black man, you know, living with HIV, it is very difficult. There are not a lot of resources for us. There are not a lot of support groups for us. And the more that we continue to keep talking about this disease as if it's just a black women's and just a gay man's disease, there's going to be a lot of brothers like me who are going to be silent." The whole church just stopped talking.
Leslie Williams: Because I told him. He said he had been HIV positive 16 years; I said, "I got more years on you."
Kellee Terrell: And you're both straight. Do you feel like that's a big problem, that people keep saying, "Down low, down low, down low: It's all about the down low." Yet there are straight men that are positive.
Andrea Williams: There are so many straight men that refuse to say that they are positive, because of the down low. They are afraid people will look at them and say, "Oh, you're gay." So they don't speak out. They just keep it silent -- even from women.
But then there are a lot of women who don't say anything, either. So it's all still a hidden subject. And people don't have conversations about sex and using condoms and did-you-have-a-test before they actually get into bed. It's a big issue.
Kellee Terrell: So let's talk about your work.
Andrea Williams: I'm a case manager.
Kellee Terrell: And so what is it like for you? You've been living with HIV for so long, and you see young people all the time.
Andrea Williams: Yeah. People come in every day, newly diagnosed. And the big thing now is that the people who are coming in newly diagnosed are coming in with AIDS.
Kellee Terrell: Late testers.
Andrea Williams: With less than 20 T cells.
Kellee Terrell: Are you serious?
Andrea Williams: They've never had a test.
Kellee Terrell: And so how long do they think they've been living with it?
Andrea Williams: Years.
Because for you to be at that point -- and I'll say to someone, "What made you go take a test?" "Oh, I wasn't feeling well." Or, "My doctor suggested I take a test." Or, "I went with a friend, because I never took a test before." Just crazy. People still have not been tested. And they're testing and they're coming up with AIDS. And they're really, really sick. So that's the big thing now that I'm experiencing with my clients.
Last week, I had a guy come in: Less than 20 CD4s, really sick, a mess. He took his blood work again. He started taking his medicine. Took his blood work. Two weeks later, he had 77 T cells. His viral load had gone down to, like, 6,000. Big difference. And he even looks better.
It's just a matter of people recognizing the fact that you're sick; something is wrong with you. Why don't you go take a test? If you've never tested, why not take a test?
Kellee Terrell: People are just afraid. What really I find interesting is this attitude of, your life ends once you find the result. Once you get the results, life's over. And it's like, no. Actually, life begins.
Andrea Williams: Well, that's where my role comes in. Because life began for me, you know? I started a new life. I'm a new person. And I can give them hope. I've been positive for 18 years. I'm not dying from HIV. I work every day, nine to five--sometimes nine to eight. And I go to school, I'm a student.
-- -Leslie Williams
Kellee Terrell: What has HIV taught you about yourself?
Leslie Williams: It taught me how to be a better man.
Kellee Terrell: In what way?
Leslie Williams: As a father, as a husband, and as a person inside myself. The things I did a long time ago, I wouldn't think about doing none of that now. So it taught me that I want to live.
Kellee Terrell: Because before, you didn't necessarily feel that way?
Leslie Williams: What, living?
Andrea Williams: Live for today.
Leslie Williams: I live for today.
Andrea Williams: But not for, you know, tomorrow or next year.
Kellee Terrell: And how has HIV changed you?
Andrea Williams: Wow. I had a little daughter -- after HIV. It gave me some focus, direction, a purpose. And you know, I know that I can do things that I didn't think I could do before.
Kellee Terrell: Like what?
Andrea Williams: After I had my daughter, I was in a house with a home attendant. I was laid up in a bed. I had an AIDS diagnosis. I was weak and could barely do anything with her. And after medication, it changed. It all changed. I just feel like I'm somebody different now. I can do whatever I want to do.
Kellee Terrell: Do you think that part of your optimistic attitude is because you had each other?
Andrea Williams: Probably. Yes.
Leslie Williams: No doubt about it.
Kellee Terrell: Aww.
Leslie Williams: Yo, we've been together going on 22 years.
Andrea Williams: It's going to be 22 years.
Kellee Terrell: For anyone who's just newly diagnosed, what piece of advice would you give to them?
Andrea Williams: My advice would be get as much information as you can, know what your options are and use condoms, because just because have HIV, it doesn't mean you can't get other stuff. You only want HIV. You don't want anything else to go with it.
Kellee Terrell: What about you?
Leslie Williams: Same thing.
Kellee Terrell: Nothing else?
Leslie Williams: Nothing else.
Kellee Terrell: She said it best?
Leslie Williams: She said it great.
Kellee Terrell: With that, the interview will come to an end. Thank you so much for taking time out of your weekend to speak with me.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.