Gall in the Family
(POZ August/September 1996)
She may not look anything like Wonder Woman. But after seeing Michelle Lopez grace the cover of POZ (August/September 1996) and show her face at what seems like every AIDS conference in the nation, I expected the oft-lauded Ms. Lopez to shine forth like the superhero everyone says she is. But to my surprise, there's no cape, no secret identity, no bullet-deflecting bracelets. There is Lopez, all right: Short and shorthaired, beautiful and animated, she doesn't toss around noble ideas of liberty and justice -- she just tries to get what she needs.
Lopez, 30, a black Latina immigrant lesbian mother (of nine-year-old Rondell and seven-year-old, HIV positive Raven) living in the Bronx, has become a loud and gutsy voice for people with AIDS from all the communities she personifies. Besides serving as community representative on several national AIDS committees, Lopez has worked with the New York City Community Family Planning Council, the Cure AIDS! Network, the Community Advisory Board of Bronx-Lebanon Hospital and countless other organizations. She recently paused in her frenetic activist pace long enough to share with us her not-so-secret strategy for personal, political and retroviral harmony.
Politically you rage -- you're all over the place. Where is the connection between your treatment politics and you?
This raging is my survival. When AIDS research focuses on women, it's only in relation to pregnancy. But we're responsible to all women who want to learn what this disease is doing to our bodies. I want the same amount of research they're doing in men -- not some little jack-shit amount of money to study pregnant women.
If I find something that works for me, there's going to be thousands of other women behind me who can also benefit from this. Personally, I can narrow it down to me, but it's about holding my sisters' hands and saying, "Let's learn about this together." And you gotta be angry, you gotta be loud, you gotta be obnoxious to get some of these answers.
What are some of the answers you've gotten? How do you change your treatment based on what you learn?
When I was diagnosed in 1991, they put me on AZT. My nails turned black, I broke out in blotches, I had body spasms. So after eight months I stopped AZT, and for several years I wasn't on any antiretrovirals. In 1996 my viral load came back at 195,000. I got scared, so I started AZT with 3TC.
But the side effects returned, so I switched the AZT to d4T for six months. I didn't see a significant change in my viral load, so I decided to try protease. I chose Crixivan (indinavir) because it felt like the safest one for me to take. It seemed like Norvir (ritonavir) had too many side effects, and it tasted nasty.
On the first of January 1997, I started Crixivan with d4T and 3TC. I immediately had a severe herpes outbreak. I was on acyclovir (Zovirax) as a prophylaxis against herpes -- so why did I wake up in the morning with sores all in my mouth, my back, my butt? I read the complete prescription information and, sure enough, in the original Crixivan study 2 percent of the people who had herpes experienced a recurrence when they took Crixivan.
So since Raven had been doing well on the children's Viracept (nelfinavir), I contacted Agouron [the manufacturer] and made them put me in their expanded-access program. I started Viracept in combination with ddI in March, and it's been excellent. I had diarrhea for the first three weeks, but that's a side effect I could deal with -- I ate a lot of oatmeal. In early June my CD4 count was at 900. I haven't gotten my viral load results back yet. You know what? The lab at Bronx-Lebanon Hospital lost them. This is the second time in a row this has happened -- I'm fed up, I'm switching to another hospital. But do you know what a pain it is to have Raven going to one hospital and me going somewhere else? It's very frustrating to have to do that.
In learning about how your body responds to meds, have you come across any complementary therapies that help?
I'm not just basing the stabilization of my and Raven's health on new drugs -- there's no way I'd do that. We supplement these heavy medications with a lot of alternative treatments: We're now taking echinacea, vitamin C, cat's claw [a Latin American herb], grapeseed extracts and a multiple that includes vitamins A and E and bee pollen. I take these complementary therapies to balance out my body. I'm not looking for any specific effect -- I just want to restore my body to normal after putting all these toxic drugs in it.
I have walking pneumonia right now, and the herpes is still spreading. Physically I'm a little fatigued. But emotionally I feel fine! And to tell you the truth, I don't give a fuck about my labs. If things feel good, things are good.
Is home life good, too?
Yeah! My lover, Diane, and I are back together -- we broke up for a while. Things are better now -- sometimes I say to my gynecologist, "Shit, she beats protease inhibitors." If I have her around, I'm ready to do anything. This relationship is part of why I have the urge to go on. I have support, I have people who love me. Diane is negative and before we split up, we weren't practicing safer sex. Now we use Saran Wrap, and the first time we used it she said, "It's like there's nothing there!" Do you know how much that means to me? Worrying about infecting her took away the excitement, and now I don't have to worry.
How is Raven doing?
Until last October, it was incredible -- there were really no options for her. Then, she got into the pediatric study for Viracept, taken in combination with d4T and ddI. By December I saw this miraculous change in her. I started getting calls from her teachers asking me, "What are you doing with Raven?" She's become so responsive in class, asking questions. She's gained all this weight, and has so much energy now -- just the other night she kept us all up late 'cause she was bouncing off the walls. In her most recent blood work this February, her viral load was undetectable and her CD4 count was over 900. Now she's doing great.
Does Raven understand much about her treatment?
She knows a lot. She knows she has to take medicine to keep HIV out of her body. She knows the times that she gets her dosage. Wherever she is, she finds a digital clock. And she will tell you: "Eight-Oh-Oh! It's time for my medicine!"
But when I got her undetectable viral-load readings and I shared them with her, she said, "Mommy, I don't want HIV to leave my body. Nobody's gonna love me or wanna be with me anymore." So this is a child who's getting all this love and attention and she thinks if HIV goes, all these things go. It's sad in a certain way.
It's hard for Rondell sometimes -- uninfected siblings don't get much support. Some kids call him "AIDS boy," saying, "Your mother and sister gonna die." Rondell's involved in Raven's treatment, too. Sometimes, if I have to send them to school early, he'll say, "Mommy, make sure you put Raven's medicine in my backpack," and he makes sure she takes it. He's in fourth grade, and he has to deal with this very real part of the world.
Honestly, I pay more attention to what I'm doing for Raven than to what I'm doing for me. I have to keep saying to myself, "If you want to be there for Raven and Rondell, you gotta take care of you just as good as you're taking care of Raven." And once home is taken care of, I have the strength, the support, to get out there and try to accomplish something.