LeRoy Whitfield’s death on October 9 shocked us all terribly—not so much because we hadn’t expected it, but because we’d never truly faced what our lives would be like without his enormous spirit and energy. LeRoy was often shocking. Even when he was most ill, he could rock your world with his focus and passion. His brilliance and humor made him a fabulous coworker and friend; his stubbornness sometimes made him a challenge in both roles. LeRoy wrote one of the most controversial and difficult stories ever for POZ, in December 2000—about the conspiracy theories about AIDS and African Americans—and did it, of course, with grace and style. That feature stands with his many fine writings—what we have, now, to hold on to. For all his contrariness, LeRoy was a unifying voice. That comes across in the column excerpted below. We continue to hear his voice—and to need it.
Like others of LeRoy’s friends and associates, I had a very hard time all along accepting his refusal to take meds. But HIV is all about accepting individual decisions—and the right of each individual to make his or her own. POZ honors LeRoy for his life, his work, his attributes—even, while grieving, for his decisions.
May 2002 Marathon Man
Entering a study of long-term nonprogressors, LeRoy Whitfield finds it’s not just his blood that’s under the microscope
Even using all of her 99-cent-per-minute powers, TV psychic Ms. Cleo couldn’t have predicted that my medical profile would pique the interest of one of the nation’s most esteemed AIDS researchers. But I knew there was something about my numbers for years. I’m 12 years positive and have never popped AIDS meds.
Hunched across from me at his Harvard office, Dr. Bruce Walker has stopped short of shakin’ a Magic 8-Ball to understand specimens like me—referred to in AIDSpeak as long-term nonprogressors (LTNPs). He suspects that I’m thriving either because my killer T cells are working overtime against HIV—hell-bent on viral vengeance—or that my unusual HIV strain, which flags itself to be attacked, is self-defeating.
On a visit to Chicago, my grandmother—Big Mama—in her infinite matriarchal wisdom balks at what she calls Walker’s science fiction. She pulls me close and whispers the real key to my salvation: I’m saved, she says, protected by the blood of Jesus. (Well, hallelujah.)
Whatever the reason for my good health, I’ve noticed that some of my fellow HIV-havin’, support group-attendin’ brethren are often suspicious of my claims, envious or both. (Honestly, is it me, or are some folks just bent on hating instead of congratulating?) One brother spit venom when introducing me to another: “This is LeRoy,” he seethed. “He’s gonna live forever.”
That kind of heat is hard not to take personally, but I get where it stems from: Some brothers have suffered more pain and fear with HIV than I have. But there are no guarantees that in six months, my other shoe won’t drop. I’m still taking one day at a time.
At my support group, division among disease progress runs deep. Wet-behind-the-ears HIVers tell others how many T cells they still have in order to distance themselves from (perish the thought!) having AIDS. War-torn AIDS veterans condescend to HIV newbies: “It’s an AIDS thing—you wouldn’t understand.”
So why subject myself to the madness? I may move on to a more exclusive support group in Boston. Convened by Walker for LTNPs only, it’s served up social mixer style. The membership has its privileges, but also a price. To be eligible, you’ve gotta come with over 500 CD4s, a low viral load and be asymptomatic and treatment naive.
I’m ready to pack for Camp Eternity, but suddenly take pause. Schmoozing among my new HIV friends, I wonder, what will we possibly talk about—how good we all have it? No longer a big fish in a small pond, will I find myself jealous of Walker’s LTNP poster child, whose virus has been undetectable since he tested positive in 1981? Will I be continuously prompted, poked and probed, opening my veins to fill a bottomless blood vial for the common good? And what if Walker is, well, wrong?
Maybe I should stick to my current health plan—better nutrition, exercise and a low stress level—which I believe has helped me to live this long. Walker may be on to something that could mean better treatment for HIVers, but I’d rather cheer him from the sideline if it means trading my own fragile self-empowered state for his cherished theory. That may seem middle-of-the-road, but it’s exactly where my tent is pitched. And I hope to remain here for years to come.