By Alex Garner
Editor’s note: When you test HIV-positive it can have a profound impact on your life. We all experience it differently. Today’s guest columnist, Hank Scott, explores how HIV impacted his life and set him on a more fulfilling and enriching path.
On my profiles on those websites where gay men meet I include this phrase: "By the way, I'm HIV positive, and I intend to stay that way." It's intended to alert guys to my status, so neither of us wastes any time. And it's intended as a subtle slap to the negativity of those who are negative. But it's also a subtle way of stating something I've long felt but never before said: I feel damned positive about being positive.
It wasn't always that way. I well remember the night I was infected with HIV and the tortuous months and years that followed. It was around two a.m. on a cold November night in 1994 when I walked into Wonder Bar, the tiny dive on Sixth Street in New York City's East Village that now is known as Eastern Bloc and is locally famous because one of its owners is Benjamin Maisani, the hunky former boyfriend of Anderson Cooper. Within an hour I was walking out of the bar, arm in arm with a stranger. Little did I know as I walked up Avenue A in those early morning hours that I was moving toward a future that at first would terrify me and later inspire me like nothing before or since.
When we got to his apartment, we quickly stripped and tumbled into bed. I was drunk, a state I had been finding myself in on most Saturday nights for the past year or so. Still, when he climbed on top of me, I was careful to reach down and make sure he was wearing a condom. The next morning, hung over, I stumbled home. A week later I came down with a terrible case of the flu that caused me to miss two weeks of work. Two months later I went in for my semi-annual HIV test. My doctor clearly was as stunned as I when shortly thereafter he delivered the news: I had tested positive for HIV. That's when I realized I hadn't checked the stranger for a condom the second time we went at it that night.
I was empty during the ten-minute taxi ride back to work from the doctor's office. I didn't feel any fear, any anguish, any pain. I couldn't think about what I'd just heard. I focused instead on what was, at that point, going to be the most important presentation of my career. In a few hours I would propose to the publisher and president and other senior executives the first-ever digital strategy for The New York Times. The presentation came off without a hitch (I still marvel that several people told me it was the best one I'd ever done). An hour later I walked into my East Village apartment and began crying and screaming until I collapsed on my bed, emotionally exhausted.
The close friends at The Times with whom I shared the news reminded me that I was fortunate to be working there. I was an executive with a great job at the most prestigious newspaper in the world, charged with developing new products and responsible for digital media. The company was gay-friendly. It offered amazing insurance benefits. I'd been promoted rapidly, and my prospects for further advancement were bright.
All of that was true. But at The Times I was an entrepreneur with a safety net who spent most of his days navigating corporate politics. I could risk the company's money on a web venture, a CD-ROM publishing project, a newspaper published in Moscow, to name a few of the projects I oversaw. But whether those projects succeeded or failed, I kept my job and my salary. There was little challenge in that. And the really creative parts of the job were handled by the people who reported to me.
So, seven months after getting my diagnosis, I quit. It was 1995, a year before the introduction of the triple-drug combination therapy that changed HIV from sure death to a chronic condition. On the sidewalks of New York City were young and middle-aged gay men whose mono-therapy had failed, their faces wasted, their bodies shriveled, many of them using walkers or wheelchairs. Alarmed by that, my doctor initially refused to prescribe any medication. The stigma was profound. My roommate at the time told me he was angry and disappointed in me. My first date after the diagnosis kissed me on the sidewalk outside the restaurant where we had dined and told me he wanted to see him again. When I nervously revealed by HIV status, he told me he couldn't deal with it and walked away. The fact that insurers could demand to see my medical records and drop my coverage led my doctor to create a separate file for my HIV blood tests, which I paid for, under the name Max Frisch, a Swiss writer whose novel "I'm Not Stiller" was a favorite of mine.
Faced with grim prospects, I decided, in the words of a wonderful song by Tim McGraw, to live like I was dying. For me that didn't mean drinking and drugs and reckless sex. Instead, I traded great health and life insurance, a steady salary, and the prestige of The Times for an erratic and exciting adventure that can hardly be called a career. I went to work for myself as a media consultant and writer. I succeeded in some projects, and I failed in others. There were years when I made lots of money, and years when I made next to none. But the risks were thrilling, and the successes were gratifying. What I gave up in money, safety, and security, I gained in a richness of experience that can't be measured in dollars. For me, focused as I had been on a very materialistic notion of success, none of that would have been possible if I hadn't been infected with HIV. Today, thanks to combination therapy and a meaningful life, I go weeks if not months not really thinking about HIV.
This wasn't a journey I embarked upon alone. My most influential guide was Cynthia O'Neal, the founder of Friends in Deed, a New York City support group for those with life-threatening illnesses. Cy, as all came to know her, opened her group sessions by inviting anyone to raise his or her hand and talk. Those of us who were veterans knew that every few weeks a newcomer would show up and blurt out that he'd just learned he was HIV positive. Cy would listen carefully and sympathetically as he choked the words out through his tears. The rest of us waited for the question we knew was coming.
"Why are you crying? Why are you so upset?" Cy would ask.
"Because I'm going to die," the newcomer would say. At that, Cy would explode in uproarious laughter, joined by the rest of us in the room. The newly diagnosed visitor would sit there, stunned.
"Guess what?" Cy would say. "We're all going to die. It might happen tonight if you leave this meeting and get hit by a taxi. I might happen in forty years. There's no way of knowing when. So the question is, what are you going to do to make the most of your life until then?"
I hope most people don't need a Cy O'Neal or the diagnosis of an illness that likely is terminal to accept the inevitability of death and make the most of life. I also concede that I am fortunate not to have suffered the side effects of medication or HIV-related illnesses. But HIV is what it took for me to hear what Cy and Tim McGraw were saying. HIV is what it took for me to begin living life like I was dying. For that I am thankful for the disease that so many people love to hate.
Henry "Hank" Scott is a media business executive and former journalist whose career has spanned Out magazine and the New York Times. He now lives in West Hollywood.