My next HIV-AIDS assignment: living it
By John-Manuel Andriote
For two decades I've written newspaper and magazine stories — and a book — about HIV-AIDS as it has robbed the health and lives of millions of people worldwide. Many were my friends. I chose this as my beat back in 1986, after I lost two friends in their 20s. It was the year that Bill, the man I loved, found out he was positive. I was afraid I might be infected myself. All around me, I saw a terrifying event unfolding. My role would be to tell the stories of the people the pandemic touched.
I started informing myself on every aspect of HIV-AIDS, reading the literature and interviewing activists, scientists and people living with the virus. And I reported the terrible physical and emotional suffering, the extraordinary acts of bravery and charity, and the amazing spiritual transformations I witnessed.
But despite all I knew, I never truly knew what I was writing about.
As a gay man, I wasn't a completely detached observer, because HIV-AIDS affected so many people close to me and in my community. Yet the stories I told were always "their" stories. I could watch and listen and share with readers what I saw and heard. Being HIV-negative myself, though, I had only a limited understanding of even my closest friends' experiences.
Because now I'm not just a reporter.
Now I'm a reporter with HIV-AIDS.
I never expected to mark the 25th year of the HIV-AIDS pandemic by describing how my perspective has shifted, from observer to participant. The shift took place last Oct. 27, three weeks after my 47th birthday. My doctor called with the results of the blood work from my annual checkup. "I have bad news on the HIV test," he said.
I felt the ground fall out from under me. I'd probably written about this in other people's lives hundreds of times — people talking about a time before and a time after their HIV diagnosis. But now I knew that words — the words I'd wielded like a shield against the reality of what I was seeing and hearing — truly couldn't describe this moment of sickening self-awareness.
'NOW HE WON'T WANT ME'
I didn't know what to think. It was when I thought of Glenn, the man I was beginning to love — and the thought "Now he won't want me" hit me — that I started to cry. I flashed back to the night I had reported on the protest at President Ronald Reagan's first AIDS speech, in 1987, when he stressed teaching "values" rather than methods of preventing the spread of HIV.
When I went to my doctor's office later that afternoon for more blood work, he advised me that it was pointless to try to pinpoint exactly how "it" had happened; better to focus on dealing with this new reality, he told me. But that reality seemed surreal; I felt so well.
I realized I was experiencing the same denial I had heard about so many times. I had convinced myself that a genetic fluke had protected me against the virus in the 1980s, and that the low-risk sex I practiced would keep me uninfected. I insisted on having another HIV test, telling myself that my results could have been mixed up with someone else's. How many times had I seen this desperate need to believe that the diagnosis was some kind of mistake — that "I did everything right, so how could this be happening to me?" — grip friends and acquaintances?
Then I saw the positive result. Even the reporter in me had a hard time believing it. I wrote in my journal that day, "Suddenly it's all as personal as personal gets — my very person, my body, my health, my life, my sense of security, my fears of illness and death." I wrote that; but I was only beginning to grasp it. Part of me was still the dispassionate observer, looking on, writing about somebody else's life.
PARADE OF FACES
Then, a week later, I received more shocking news. My tests revealed a relatively low viral load, likely indicating a recent infection. But the T-cells, the white blood cells that HIV infects and destroys, were also very low — only 198, compared with 600 to 1,200 in a healthy person. I knew what that meant. It was a fact I'd cited in so many stories. A T-cell count below 200 indicates a damaged immune system and risk of life-threatening infection. I knew that the Centers for Disease Control and Prevention considers a T-cell count under 200 an AIDS diagnosis.
I was floored, but my doctor said to forget all the images of suffering and death I had witnessed, because there is effective treatment today. He said that my counts would improve once I began medication — and that if I took it properly, I could expect to lead a healthy, even long, life. But a parade of faces passed before my mind's eye: once-handsome faces covered with lesions, atop the wasted shells of once-muscular bodies. I had cried for so many young men as I chronicled their stories. Their stories that were now my story.
I recalled the last weeks of Bill's life, when I visited him at the hospital each day after work. I used to feed him his supper and shave his face. I watched as his mind and his life ebbed away in April 1994 — two years before "combination therapy" and new drugs finally brought hope of living with HIV rather than dying from AIDS.
What medication could take away the anger I feel each time this country's religious right blocks comprehensive sex education for young people? There's no treatment for my outrage at those who claim they believe in a loving God but hate and abuse their gay children and relatives — then suddenly "discover" the HIV-AIDS pandemic because it also affects "innocent" children in Africa.
I was afraid of the potential side effects of the medication I would now have to take for the rest of my life. I knew they could range from insomnia and diarrhea to much more serious problems, such as diabetes or heart and liver disease.
Despite everything I knew about HIV, I found myself re-reading the most basic information, remembering what others with HIV had said about how information is power. This time I used my reporter's ability to ask questions for the biggest assignment I would ever have: staying alive.
MISSION: STAYING ALIVE
My insurance policy limits prescription-drug coverage to a mere $1,500 a year; the medications I would need cost $1,700 a month. So I searched the Internet and e-mailed friends in Europe looking for lower prices. When I found nothing, I scoured the Web sites of organizations that serve people with HIV-AIDS, feeling a new gratitude for their work. Suddenly groups such as the National Association of People with AIDS didn't seem like just sources of information for a story.
I contacted several people I knew from my years of reporting, to see what they could suggest about getting the treatment I couldn't afford on my own. I enrolled in a clinical trial at Whitman-Walker Clinic in Washington in which I would receive regular checkups and free medications for 96 weeks.
Four months of treatment have suppressed the virus to the optimal "undetectable" level. My T-cells remain troublingly low. But the nurses and doctor assure me that my immune system is rebounding.
In March, I asked my doctor for a sleeping pill for the insomnia that has been the main side effect of my meds so far. I also asked for a referral to a psychiatrist to find out why I'm always on the verge of tears. The psychiatrist said I'm feeling sad because my HIV diagnosis has challenged my understanding of who I am and my sense of where I'm going in life. He said I'm suffering, and it's natural to feel sad in the face of suffering.
So this is what the late bereavement therapist Judy Pollatsek meant when she trained Whitman-Walker's AIDS "buddies" in the 1980s, volunteers who provide care and support to very ill people with HIV-AIDS. Judy, whom I interviewed several times, used to say that for people with the illness, "grief begins at diagnosis." I had grieved for many others, but I had no idea how to grieve for myself.
I shared my news with close friends, who affirmed the view that HIV should not define me. But the thought of telling my family, particularly my beloved mother, tore me up inside. I felt as though I had let her down in some way.
KEEPING A SECRET
I have been open with my family for years about being gay, and they have always loved and accepted me. But I am the only son, the oldest child, my two sisters' big brother, my mother's Rock of Gibraltar. Since my father's death in 1989, I have felt I had to be strong for others. I never learned that it's OK to admit that I'm frightened or that I need to be loved. I think this is the biggest reason why I was able to be detached and clinical for so long in reporting on a subject as painful as HIV-AIDS, even as it broke my heart repeatedly.
And so I kept my secret from my family for months, acting as though having HIV was something shameful. Which of course I have never believed.
Looking at life through the eyes of an HIV-positive man, I'm seeing things in a new way. Now I know what the late Bob Edwards meant when I interviewed him for "The Survivors," my 1986 City Paper cover story about men whose partners with AIDS had died. Bob, who led a group of buddies for Whitman-Walker, told me how grief had made him more conscious of his own and others' feelings.
"You know what things mean," he said. "You have a real understanding of love, of things that will discourage and hurt you, of goodness and kindness — and the antithesis of those things. You don't tolerate people who say things like 'Oh, get over it.' "
STRAIGHT FROM HEART
I now feel a sense of healing within myself, as if living with HIV has helped me finally know that I'm loved and cared for. I'm learning to be present to my own suffering, and not to detach from my sadness.
When I finally shared my news with my mother in early April, she said to me, "Be brave, John." I've learned that brave people — like the many I have known and interviewed — are not without fear, but they do the right thing despite their fear. I'm able to be brave, and tell my story, because I have the love and support of family and friends.
I know too well that even 25 years into the HIV-AIDS pandemic, such openness can get a person killed in some parts of the world. And I know there are gay men in this country who will resist believing that my story could ever become their own.
I, too, did that. I told myself I was smart, cautious, perhaps even "spared" so I could bear witness as a reporter. But my perspective has changed. Now I understand what I've seen and heard from others. And I can only try to make those without firsthand experience understand — not by writing as a detached observer, but by writing straight from the heart.