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First Person: Luana Clark

An Excerpt From Focus on Living: Portraits of Americans With HIV and AIDS, University of Massachusetts Press, 2003

By Roslyn Banish

Luana Clark

About Luana
Age: 54
Diagnosed: 1985

I was hospitalized three times. Three times they told me I was going to die. And three times I told them I wasn't going to die. When you have AIDS, everything is dramatic one hundred times fold.

I'll be fifty in a few months. I have two biological children, a son and a daughter. I also have a twenty-two-year-old adopted son. My best friend died of AIDS, and I have adopted her son. He and my daughter live with me now. My older son lives in Virginia with his wife and six babies, my grandbabies.

In 1985 when I started seeking help for my drug addiction, that's when I found out I was HIV positive. When you went through treatment, you had to go to the hospital where a doctor made a complete examination. On my chart was that I had been a drug abuser, and the doctor asked me if I would like to take the test [for AIDS]. I said yes, signed the paper, and took the test. And bing, bang, there it was. The person who took my test told me I would die in a week. At the same time she told me to get my will and stuff done because I might have six months, the longest would be a year.

I was devastated. I was in a treatment center, and not having any information except that AIDS kills, I thought if I was going to die I might as well die high. What was the use of getting clean? I tried to relapse. I was in the middle of the street, completely gone. But the good Lord intervened then. When I came to my senses I was in the middle of the street and Sister Augusta O'Reilly was holding me. The only thing I remember was that she was holding me so tight that I couldn't breathe. And that brought me back. And that's when my journey began.

I didn't do anything about my HIV status for five years. Just stuck to my recovery. I mean, I stuck to it like glue. While I was doing that, I was learning about the other disease, AIDS. At that time it was real difficult because there were no women coming out, no women talking about it. I was made a suggestion to go to a support group, and it was only myself and another white girl. I sat there and listened and learned. I got upset because there was nothing said about women with HIV.

I took all the trainings and then I became a facilitator for support groups, one for the newly diagnosed. My motto was, "You can live in spite of, not die because of." Then I had an all-women's group. Then I had a group for grandmothers who were the mothers of people who died. So I got a lot of fulfillment out of that.

I couldn't understand why the government was allowing women to die now that they knew women were getting infected. I don't know their reasoning. I needed to know who to talk to about this. I ended up going to Washington to see all of them people up there for the reauthorization of Ryan White. I ended up on the speakers' bureau for the National Organization for People with AIDS.

I got infected from either sex or doing my drug addiction. I used drugs from age eleven. I went from alcohol to smoking weed to coke. Never tried crack. Crack came on the scene way after my recovery. And then I tried heroin.

I've been blessed because I used before, during, and after both my kids, and only by the grace of God they're not sick; they wasn't damaged in any kind of way because of my drug use. I did go to my prenatal care, and I did let them know that I was using. And so they saw me on a weekly basis. Back then there was no such thing as AZT for women or the babies. Thank God, my children are healthy. Maybe I wasn't infected when I was pregnant. I don't know. Could have been after my pregnancy because I did sell my body for drugs, or for money to get drugs. I was just down as far as I could go, and there was no other way but up.

I'm bisexual. I have a significant other. She and I have been together ten years. She's also infected. She still uses. I mean, she was clean for two years and she found out she is HIV positive and she's been struggling ever since. She has her own place now. I know I have to let her do whatever she needs to do. When she says she wants help, I give her a referral. I don't do it myself anymore. I had to step off to let her grow like I grew. I used to think I could change her. When it finally got to the point where she was taking things from my children, that's when we couldn't live together. Since that separation and my new relationship with the God of my understanding, what I'm doing is stepping aside, doing what other people did for me.

I am on medication now. I'm on what they call "salvage therapy." I got the side effects, like, I have drug-induced neuropathy. My vision is slowly but surely going. I have my cane with me. My right side is going numb, and I fall down a lot. My hands are starting to shake. I've had shingles twice. I've had PCP pneumonia twice. I'm clinically depressed -- one of the side effects of the drugs is depression. My memory comes and goes at any given time. That's why I always have a pencil or pen, to write things down. My viral load is off the hook but it's not going anywhere. So that's the only glimmer of hope I have. This obesity is a side effect, too. It's going to go all the way around my middle. So that messes with me as a woman, a vain woman. I like to look good.

I have stopped going to funerals. The ones that was in recovery that had AIDS -- they were steadily dying. All my friends were dying. And I'm saying these were good people and they were doing good work, and why did God take them instead of taking somebody like me who was not contributing to life? I was being treated for survivor's guilt. I had that real hard, real deep. That's when I started seeing a psychologist. I'm getting much, much better with that. For my mental health I don't go to hospitals to see my sick friends. I'll send them flowers or cards. I know they can see and feel how hurt I am when I come to visit them, and I know there is nothing I can do for them. It's just a matter of time. When I was hospitalized last November, my family and friends came to see me. I said, "Oh man, I can't be around them because I am putting them through unnecessary pain." I was hospitalized three times. Three times they told me I was going to die. And three times I told them I wasn't going to die. When you have AIDS, everything is dramatic one hundred times fold.

My story is my purpose for living. I believe that's why God had me go through what I went through. I am supposed to be a walking testimony to those who are still using that you don't have to live that way. And even if you are infected, you can have a quality of life and a successful life without dying.

About my children, I hope that this pandemic is history for them. I hope when my daughter starts having her own kids, and my grandbabies from my son have their kids, that they will see a cure for AIDS and it won't be a threat to them. That's what I want to see for my family and for the rest of the world.

I want my kids to be open-minded, leaders not followers, compassionate, a lot of love in their hearts. Not to be "punks." I have put them through everything. None of them have used drugs. Could be because they saw what they did to me. They say they are proud of me.

My mother is my number one fan. She's sixty-five and she's sickly. She hung out with me all day yesterday. I went and took her to have her hair done. Then we went where I was working on a proposal. She is a computer genius. We caught the bus and we ate and we talked and laughed and I went and did work and I sent her home. That was a good day.

Our relationship didn't used to be good. One time when she came to my house, I locked us in the house and wouldn't let her go. I just spilt my guts. Everything that I thought she did wrong, I got it all out. She slung snot. I slung snot. We cried and cried and cried. I kept her hostage for two days. On the third day I said to her, "If you want to go home, you can go home." She didn't want to go home. She told me things about her life that I had no idea of. And that's when our relationship started, 'cause I forgave her. Those two days were a blessing. And we've been the best of friends ever since.

I didn't mean to get mushy.

My future? I put a short-term goal always hoping for the long term. That way I won't set myself up for failure or disappointment. I want to enjoy my grandbabies and my family while I am healthier. My grandbabies are my precious little things.

Excerpted from Roslyn Banish, Focus on Living: Portraits of Americans With HIV and AIDS, University of Massachusetts Press, Amherst and Boston, MA, 2003.

Buy this book at Amazon, or buy it at the University of Massachusetts Press.

© 2003 Roslyn Banish

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This article was provided by The Body Features: Women & HIV.
See Also's HIV/AIDS Resource Center for African Americans
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