John-Manuel Andriote Day 6: My News


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Three weeks after I turned 47, in 2005, I had a phone call from my doctor that threw everything I thought I knew about life and celebrating it up in the air. I had no way of knowing where it, or I, would land.

Eight little words on a lovely October day turned my world upside down. “I have bad news on the HIV test." My doctor suggested I come by his office “so we can get you started.”

Started on what? I wondered. My journey toward death? Excruciating illness? The knowledge I’d accumulated over many years of reporting on HIV-AIDS was crowded out of my mind by images of sick and dying friends.

Then came the next blow. I learned that, not only was I HIV-positive, but I had a T-cell count of only198. The white blood cells are considered a marker of an AIDS diagnosis when they drop below 200 from their normal 600 to 1,200 range.

“This is so 1980s!” I told my doctor. We were supposed to be well beyond the point where people who regularly get tested for HIV find out they have the virus only after it has damaged their immune system and they become sick.

The third blow was when my doctor couldn’t find in his records any indication he’d tested me for HIV during my annual checkups the previous couple of years. He had tested everything else—cholesterol, red blood counts, etc.—but not for HIV. This meant I could have been infected for as long as two years without knowing or even suspecting it. I had no symptoms of anything.

I had thought my sexual behavior was low-risk. But I quickly realized that low-risk does not equal no risk.

I had to immediately begin taking medication. I was almost as terrified of the potential side effects of the meds as I was of knowing there was a deadly microbe in my body—the gaunt face and spindly arms and legs I’d seen so often; damage to the heart, kidneys or liver; major GI upset.

As if this wasn’t enough, I also realized my individual health insurance policy's $1500-per-year cap on prescriptions wouldn’t pay for even one month’s supply of the expensive meds I would now need to take the rest of my life (or until a cure is found).

What I called “My News” had dropped on me like a bomb, and dropped the floor from under me, at a time when my finances were already starting to stress yet again, and I was trying to navigate a new relationship.

I was able to get my meds free for nearly two years by enrolling in a clinical trial through Washington, DC’s Whitman-Walker Clinic. By the time the trial ended, my income had fallen dramatically because, well, I’d been distracted from the need as a consultant and freelancer to constantly generate new work to keep the paychecks coming in.

Although he’d said my new HIV status didn’t matter to him because his previous partner had been positive, the man I’d begun to love withdrew from me. Looking back I can see he was dealing with fears and “issues” that predated me. But it cut like a knife when he told me, “I don’t want to play Florence Nightingale” when—as he assumed would happen (he has been wrong)—I inevitably got sick. This from a nurse, mind you.

My income has unfortunately remained low enough the last few years to qualify me for the federal-state AIDS Drug Assistance Program (ADAP), which covers the $25,000 annual cost of the medications my health insurance will not cover.

Four and a half years since I got my “news,” I’m happy and grateful to say that if I didn’t know I have HIV, I wouldn’t know because I’ve never been sick. My only medical issue has been a higher lipid level caused by the medications. A medication called Tricor keeps that problem in check. I look healthy, try to eat well, work out at the gym and enjoy all the things I’ve always enjoyed (though I've had to give up Bombay Sapphire martinis, as hard alcohol doesn't sit well with my body anymore).

And yet I feel a transformation within myself. Confronting your mortality, knowing for real that you will one day die, does that. I had to eat humble pie and accept that even people in their forties—people I used to think “should know better”—can and do still get infected with HIV. In fact, people in their thirties and forties account for one of the largest groups in this country of those who are newly infected each year.

More than anything, I think my diagnosis helped me find my voice.

After years of reporting on other people’s experiences, I’ve been learning to speak in the first person singular about my own.

In May 2006, seven months after I got my “news,” I “came out” as HIV-positive in a commentary I wrote for the Washington Post. I’d written for the paper’s health section for years. A reporter who’d covered the AIDS epidemic for 20 years as an HIV-negative man, who suddenly finds out he “has it” was considered newsworthy. I knew that after telling so many others’ story of living with (or dying from) HIV-AIDS, silence or shame about my own story were not options for me.

A short time after the Post article, I was interviewed on National Public Radio—together with Dr. Helene Gayle, who had been director of the Centers for Disease Control and Prevention’s national HIV-AIDS program. It was daunting as hell in such august company to speak honestly about how I’d gone from being one of “us” (the HIV-negative) to one of “them” (as too many people choose to see those of us with the virus).

The NPR host asked several times why I had “let it happen” knowing, as I did, so much about HIV and how to avoid it. Finally, I said simply, “It happened because I’m human.”

Even Dr. Gayle pointed out that knowing everything there is to know about something harmful doesn’t translate every time, all the time, into protecting ourselves against it.

I’ve written a number of commentaries—for gay and HIV publications, even for the Los Angeles Times—about my experience of living with HIV. I have a very different perspective now as I conduct interviews and work on the revised edition of Victory Deferred, my 1999 chronicle of the American AIDS epidemic.

I’m determined not to define myself—or allow others to define me (as people are wont to do)—by the medical challenge I live with. But I write and speak about my experience when I can help to reduce ignorance and increase knowledge and compassion.

It’s been a very unexpected turn of events in my life. But I see it as part of my life’s journey, part of making me the person I am—yet not all of who I am.

More than anything, it’s the reason I try to celebrate life and savor the joys and pleasures I find along the way.

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NEXT: LIFE IN A NORTHERN TOWN

Bio: John-Manuel Andriote began his writing career in 1983, reviewing books for the Advocate, the national gay and lesbian newsmagazine. After earning a master's degree from Northwestern University's Medill School of Journalism, Andriote built his career in Washington, DC, over the next two decades. He specialized in reporting on the AIDS epidemic, and in 1999 published Victory Deferred: How AIDS Changed Gay Life in America (University of Chicago Press). It was followed by Hot Stuff: A Brief History of Disco (HarperEntertainment, 2001). Andriote is also the author of The Art of Fine Cigars (Bulfinch Press/Little Brown) and a privately published history of Washington's Metropolitan Club. He has written feature articles, commentaries, reviews and profiles for the Washington Post, Los Angeles Times and many other publications. Today Andriote lives in Connecticut, and is working on a revised edition of Victory Deferred for publication in 2011, the 30th anniversary of the AIDS epidemic.