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The First AIDS Generation: Grappling With Why We're Alive and What It Means

All of us who were in the trenches of the AIDS war are today dealing with the grief and the survivor guilt. Many are grappling with deeper scars and something akin to post-traumatic stress. But unlike for veterans of other wars, there isn't any built-in support system for us.
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Demonstrators chanting at AIDS rally, New York City, New York (Photo by Visions of America/UIG via Getty Images)
Demonstrators chanting at AIDS rally, New York City, New York (Photo by Visions of America/UIG via Getty Images)

It was a rainy day in Central Park in the summer of '92 when we attempted to send Michael Santulli's ashes aloft over Strawberry Fields in white, helium-filled balloons. It was one of those requests that Michael hadn't thought through in those hazy, painful last days of his life, and someone probably should have talked him out of it before he died. (That couldn't be me, because I wasn't there, for reasons I'll explain.) But now we had to do it. The balloons were weighted from the ashes and further depressed by the rain. They were often sputtering as we tried to fill them with helium, with clouds of ash going off in all directions. I finally got a balloon filled with both ashes and helium, and then, just as I was about to let it go up, it burst in my face. I had ashes all over my forehead and nose, and I felt a sharp, terrible pain: A bone fragment was in my left eye.

Michael was getting me back, I thought to myself, letting out a chuckle -- because, if you knew Michael, this was in line with the direct way he let you know what he was thinking. I'd neglected him, running away as he wasted away, his body ravaged in the horrific way that AIDS takes its course. Pia and Jay had nursed him, bathed him, there until the end. But I was too busy with the work of AIDS activism, or at least that's what I told myself, to be there as he faced death at the age of 32.

We'd been inseparable friends as college roommates at Syracuse and later as roommates in Manhattan. He turned me on to Nina Hagen and Lene Lovich and taught me much about music, art and fashion. As I was a publicist-turned-nightlife-columnist at the time, I took him to the hippest parties at Area and Danceteria and the other New York clubs, both of us dressed in the hip downtown black outfits that we often threw together from nothing.

In 1987, as the AIDS epidemic reached down deeper into younger gay men, we went together to be tested for HIV. Michael tested positive, and we both cried for an entire day. He responded to it by immersing himself deeper in clubbing and partying. I immersed myself in AIDS activism, as did thousands of others, positive and negative. I joined ACT UP in New York and used my media and publicity skills, eventually chairing the group's media committee, helping publicize protests and expose government neglect in the media.

My life, such as it was -- my career, many of my relationships -- fell apart. My family ties frayed, as everything became about AIDS and ACT UP. I believed our lives were over, no matter our individual HIV statuses. Our community was under siege. Right-wingers in Reagan-Bush America were talking about quarantine and tattoos. It was a go-for-broke moment. I co-founded OutWeek magazine, where I loudly criticized public figures who were gay and powerful but closeted, calling them out for hiding when so many of us needed them. I came under a lot of withering attack in the media, but none of it deterred me. As far as I was concerned, it was the end the world -- our world -- and I was going to go down kicking and screaming.

But looking back, it was also escapism itself, and in one sense it was similar to Michael's clubbing and partying. I was escaping the epidemic by immersing myself in the politics and urgency of it, which seems paradoxical but really does make a lot of sense. I didn't have time for sickbeds or funerals, I told myself, because I had a government scandal to expose or a protest to publicize or a powerful closet case to rail against. I gave myself a special dispensation on grief and heartbreak. There was no time for grief, especially when anger and indignation was so much more empowering. Of course, what I'm painfully learning 25 years later is that you can put grief off, but you can't ever escape it. Unless you process it, unless you deal with it, it haunts you for the rest of your life.

* * * * *

In the mid-'90s everything changed. The world wasn't ending after all. The AIDS epidemic transformed as the new drugs -- the drugs that my friends and comrades had fought so hard to get developed -- came on the market. The people around me, people close to me, weren't dying, and soon they were thriving. By then I had shifted focus from AIDS itself to the larger issue of the homophobia that fueled the negligence when it came to AIDS. I covered anti-gay violence, focusing my journalism on brutal, homophobic murders and the hate that inspired them. I'd begun covering the injustice of "don't ask, don't tell" and zeroed in on the burgeoning marriage equality movement.

I was very lucky. I'd seamlessly transitioned my life into another passion, or, rather, I'd expanded on the passion that AIDS activism had inspired, continuing to do the kind of work I'd done that connected deeply with who I am and the community of which I'm a part. But for so many AIDS activists of my generation who were on the front lines, particularly for those who were HIV-positive and dealing with the physical and emotional toll of AIDS, that was not the case. Late last year the death of Spencer Cox, an ACT UP comrade who was critical in getting the drugs to market that saved so many around the world, underscored the plight of "wounded AIDS warriors." So many had seen their lives transformed by AIDS activism, fighting on the front lines and changing the world, only to see the world move on once the most horrible part of the epidemic had passed, as they tried to put their lives back together.

For gay men over 40, it's as if we've come back from a war that was far away and distant to most Americans even as it was happening -- not unlike the actual wars we've experienced in this country in the past decade. All of us who were in the trenches of the AIDS war are today dealing with the grief and the survivor guilt, even as the war itself goes on. Many are grappling with deeper scars and something akin to post-traumatic stress. A lot of it is enmeshed in all the other issues people face, such as mid-life crises and aging. But as John Voelcker pointed out, unlike for other veterans of other wars, there isn't a Veterans Administration or any built-in support system for the survivors of the AIDS war, nor is there any outlet for mass grieving of the thousands who've died from AIDS similar to the memorials for war dead or terrorism victims.

The response to a forum being held in New York tonight -- "Is This My Beautiful Life?" -- is an indication of the depth of this experience, as organizers have been inundated with people planning to attend and requests from people in other cities wanting to organize something similar. On my radio program this week, Voelcker, one of the organizers, spoke about how this is only just the beginning of looking back on the first AIDS generation and talking about where we go from here. For me personally, seeing people coming together to grapple with these issues makes it that much easier to finally take those first steps in processing the past, including the grief and guilt surrounding Michael's death and so many others.

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