February 20, 2008
by Laura Whitehorn
Arlene Frames wasn’t much of a talker until she became HIV positive. The formerly reticent Frames found her voice after testing positive 21 years ago, when she realized she had to advocate for herself and that she wanted to do that for other positive people as well. Today she heads the speaker’s bureau for the AIDS service group Women at Risk, and travels to classrooms, churches and community centers to talk about her experience of life with HIV. Since her diagnosis, she has moved from New York to LA and from being a mother to being a grandmother. Therein lies the tale: Frames is a cofounder of the HIV prevention and awareness group Grand Mom Red Diva Society. As the society celebrates its first anniversary, the members are plotting to spread their love, wisdom and support as grandmothers to other HIV-positive women—and to help everyone learn better how to live with HIV.
You’re a New Yorker by birth. How did you end up in LA?
It began with my HIV diagnosis. While I was pregnant in 1987, my husband collapsed and it turned out he had PCP pneumonia [a sign of AIDS]. So they tested me for HIV and I was positive—but I wasn’t sick yet.
I was 28, and I had two other very young kids at home. Back then there was no hope. It was horrible. I lived in Harlem and all the people getting diagnosed looked like skeletons. I was trying to take care of my husband, because he fell apart when I tested positive—he thought he had infected me and the baby. He became suicidal. I had met him at a drug rehab center where I worked as an administrative assistant; he’d been clean for five years and was a graduate of the program. He had gotten HIV from using IV drugs.
For more than a year, I was going crazy just trying to find myself. It was like being lost in a maze. I felt I had betrayed my children—I thought I would die and they would become orphans.
I wanted to move to California because in my mind it was a happy place. I loved the palm trees. In New York, I knew so many people that everywhere I went someone would ask me how I was. I couldn’t get away from being HIV positive, and I wasn’t ready for that. I also thought I would die from the cold weather in New York. I tried to convince my husband to move with me, but he wouldn’t budge. Then he became violent. So I took the kids and moved, although I came back to New York for a little while when he died in 1989.
Moving to California was an original way to treat HIV. Did it live up to your expectations?
Yes! Compared to the people I had been seeing in New York, people with AIDS in LA looked good. They were mostly gay guys, and a few women, and they looked good. The guys were fat and rosy. I found that very encouraging.
How are your children today?
They are fine–and they don’t have HIV, including the youngest one, who was born nine days after I was diagnosed. When they tested the baby, he had my antibodies, so they said he was positive. At the hospital I was told that he’d never live to be 5 because there weren’t any medicines. But by the time he turned 2 he had lost my antibodies, and he tested negative. [Infants are born with their mothers’ antibodies; it is now recognized that that does not necessarily mean they have HIV.] He’s 21 now and in college—I’m on my way up to northern California to visit him today. This year my daughter will be 30. I can’t believe it; I have to say it out loud to know it’s true. I have four grandkids, and I never thought I’d see that. I didn’t even think I’d live to see my kids graduate from high school.
How did you find support once you got to LA?
My doctor in New York referred me to a doctor out here, who encouraged me to do whatever I could to live, not to throw myself a pity party. He was willing to touch me—some doctors in those days wouldn’t even touch their HIV-positive patients—and he inspired me to look for other support, so I started going to support groups. They were all groups of white gay men, and I was afraid I wouldn’t fit in. But those men took me to their bosom and taught me things I needed to know. I learned a lot from them. When other people didn’t accept me, those in the support groups did. I grew close to my gay white peers.
And I started trying to learn how to stay healthy. I learned about acupuncture, vitamins and exercise. I just wanted to live so bad—for my kids. And I wanted to look good. The men in the support groups taught me how to do that.
When I moved to California, I thought I was running away from New York. But I was really running toward life.
How did you meet the other HIV-positive women you now work with?
Because I was trying so hard to stay alive, I went to medical update sessions at Being Alive [an AIDS organization in LA]. At one of these sessions there was a woman named Beverly Mosely sitting at the table with the other speakers. She said she had AIDS, and she looked so good! She was the first positive black woman I met who looked so beautifully healthy. She had blonde hair, her nails were done—she just looked great. And then I met other women who were doing well too.
I met Ann Copeland, who later founded the group Women at Risk. She encouraged me to start talking about my experiences so others would benefit. I wasn’t a talker before I got HIV, but now I am. I always say AIDS makes you stronger, separates the men from the boys. I’ve used it as an empowerment tool. That has raised my self-esteem and made me appreciate life.
How do you treat your HIV?
I began meds in the early 1990s. But the side effects had me incapacitated—and you can’t be that way when you have to care for your kids. As a result I couldn’t take the meds correctly and I became resistant to everything. Then in 1996 the PIs [protease inhibitors] came out and I had another chance—I wasn’t resistant to them. But I still found taking meds too hard. I would forget the schedule, and I messed them up a lot. Thank God new drugs came out—ones that were easier to stomach, with fewer pills. It wasn’t until about five years ago that I began taking them right. My T cells were down to 90, my viral load was way up in the 100 thousands, so I was convinced I needed to take meds. I still struggle with that, but it’s so much easier now. I take a combo just once a day, which is wonderful. A lot of people wouldn’t have died if these drugs were available back then.
Tell me about the Grand Mom Red Diva Society.
Beverly, Ann, Elizabeth Martes and I are all positive and grandmothers, and grandmothers have always played a significant role in people’s lives. That awareness is in my heart. So a year ago I called all the grandmothers I knew, and 16 of us—all positive, all grandmothers—met. We wanted to do something full of life and excitement to help the community. I was blessed to have coaches and brothers to help me raise my boys. I had resources. But others don’t have those.
We plan to hold etiquette classes and provide mentoring for young girls. We’ll also provide help for underprivileged kids and newly diagnosed mothers. We want to go into some of those shelters where homeless families live; we want to go in there and reach those kids. Their moms are not physically or financially able to get their kids to extra-curricular activities, and I know that those extra-curricular programs kept my kids out of jail.
We look forward to starting a fitness program for HIV-positive people. That is so important, and many people of color don’t eat right and exercise. Poor health is not all about AIDS. It’s also lack of exercise, bad diet. When you fix those problems, you feel better and look better.
Now that you live in LA, do you root for the Lakers?
No, I still root for the New York teams—I still love my NY Knickerbockers. I celebrated the Giants’ Super Bowl win. And I still don’t wear white shoes after September. I am a misfit. New York—with its sports teams and its seasonal dressing—is still in me.
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