AIDS at 35: Surprising Life Lessons From Living With HIV

Since my Post coming-out, my HIV-related writing has changed. Rather than chronicling others' stories as an outsider, I write an "inside story" of a journalist now seeing the world through the eyes of a gay man living with HIV.
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Cork, Ireland
Cork, Ireland

Thirty-five years ago, on June 5, 1981, the Centers for Disease Control and Prevention (CDC) reported the first cases of what became known as AIDS in five gay men; two of the men had already died.

I was just beginning to come out as a gay man in 1981, and, like everyone else, couldn't have imagined the fear, horror, rage and sorrow that lay ahead in the years to come.

I didn't foresee the tremendous pride I would feel in the gay community as gay men and our allies volunteered to care for the sick and dying, mounted prevention campaigns, and protested the federal government's negligence in responding so slowly to the growing epidemic.

I also had no way of knowing that, more than two decades after those first AIDS cases were reported, I myself would be diagnosed with HIV.

A phone call from my doctor on October 27, 2005 turned my world upside down. "I have bad news on the HIV test," he said.

I had no advance warning -- such as night sweats or swollen lymph glands -- like so many of the estimated 13 percent of the 1.2 million Americans believed to be living with HIV who don't know they are infected.

I even had a 1980s-style surprise AIDS diagnosis when blood tests revealed my CD4 count was only 198, two points below the threshold 200 that CDC at the time considered an AIDS diagnosis. (In 2014 CDC classified three stages of HIV infection. Stage 3, what was known as AIDS, is now defined by having a so-called Stage 3-defining opportunistic infection besides the low CD4 count.)

When I was able to at least somewhat recover my balance, I came out publicly about having HIV in a May 14, 2006 commentary in the Washington Post. By then I had been reporting on HIV-AIDS as a journalist for 20 years. I had authored an award-winning history of the epidemic. I had grieved frequently as so many of my friends succumbed.

But I had done all that as an HIV-negative gay man. Although I was deeply affected by HIV, I now had to learn firsthand the big difference between merely being affected and what it means to be infected with the virus.

I had to face the terror of not knowing how I will pay for life-saving drugs. I had to feel the pain of being rejected by a boyfriend haunted by memories of his previous partner, who also had HIV and was very sick.

Perhaps hardest of all, I have had to experience the loneliness of knowing that no one around me where I live now has a clue about what it was like to witness the terrible illness and deaths of so many young men I knew. Even the gay men I know here in eastern Connecticut reject other gay men with HIV and have little if any awareness of the epidemic's history.

Fortunately, more than 10 years after my diagnosis, I can still say that if I didn't know I have HIV, I wouldn't know because my overall health is excellent. The virus is "undetectable" according to my quarterly blood tests. My CD4 count is well within the normal 600 to 1,200 range. Sure there are the aches and pains that come with being 57, but overall, I feel great.

Before my diagnosis, I was a professional observer, chronicling others' stories of trying to live, and die, with dignity despite the misfortune of having contracted a virus that many believe carries negative meaning and moral significance.

Since my Post coming-out, my HIV-related writing has changed. Rather than chronicling others' stories as an outsider, I write an "inside story" of a journalist now seeing the world through the eyes of a gay man living with HIV.

Learning to speak and write openly from my personal experience, has been new for me. At times it feels awkward and I feel exposed.

I have questioned myself, too. Would I have remained uninfected if I hadn't lived in D.C., with its high prevalence of HIV? Had deeper, unconscious forces driven my choices -- good and bad? Would my choices have been different if gay men weren't so frequently taught to hate ourselves from a young age? Would I still be HIV-negative if I had been raised to value myself?

With tough, even unanswerable, questions like these hanging over me, and with no cure for HIV at hand, I realized my only hope for healing was to delve down into the recesses of my life -- including the parts I have only shared with my journal.

I wanted to know what it is in me that keeps me going. What sustains my optimism and the unquenchable zest for life I inherited from my Greek father? Why do I take my HIV meds every day?

Since returning to Connecticut in 2007, I have been able to indulge my lifelong passion for gardening in a community garden plot. It has sustained my spirit during very tough economic times in this region that still hasn't fully recovered from the recession. I feel deeply connected to a people known for resilience, the tough Yankee farmers who cleared the land and built all those stone walls that are one of New England's most recognizable features.

Taking my medications, keeping my medical appointments, eating well and exercising to keep myself healthy come naturally to me because I love life and want to live a healthy one.

Thirty-five years since AIDS was first reported, and a decade on from my own diagnosis, I am proud to be the resilient gay man I choose to be. Even with HIV.

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