Veterans in the War...Against AIDS

Last night I attended an emotional event at Gay Men’s Health Crisis, in commemoration of National HIV and Aging Day (September 18). “We Aren’t Dead Yet! What Do We Do Now?” was billed as a community discussion, with an impressive panel of experts: Dr. Judith Rabkin, Columbia University Dept. of Psychiatry and Dr. Perry Halkitis, professor at NYU and author of The AIDS Generation: Stories of Survival and Resilience spoke along with two long-time HIV+ survivors, Jim Albaugh and Kevin Oree, and my friend Jim Eigo, long-time HIV- survivor and fellow ACT UP NY activist.

The event was held in order to get feedback on the kinds of support and services needed by this often-forgotten, often-stigmatized group of people in my age group.

(A couple of asides: First, I like the use of long-time versus long-term. Second, although some may disagree, I do not consider myself a long-time survivor. Like Jim Eigo, I’m HIV-, and though I was involved in the community in the 80s/early 90s, I still see myself as an outsider. I consider myself an ally, nothing more, nothing less.)

The needs were many and varied: from the long-term effects of powerful anti-retroviral drugs, to the stigma felt by gay and straight long-time survivors, to the generational disconnect felt on both sides. Those who did not expect to live to see their 25^th birthdays are now facing common aging issues complicated by their HIV status.

But the most emotional moments, at least for me, came from those who strongly identified the most serious issues facing older AIDS survivors as loneliness and isolation. There is an overwhelming need for grief support groups for those who only now – 30+ years into the epidemic – are finally beginning to confront the losses of dozens and even hundreds of their friends.

They delayed their grief because they had to: they had to take care of themselves and their friends, they had to fight for basic rights of housing and health care, they had to fight a war – no time to enjoy the luxury of grieving dozens of friends.

In the title of this post, I used the word “veterans”. I did not use it lightly. It was deliberate.

There are striking similarities between those who have been affected by AIDS and those who have served our country in the military. Both groups suffer from survivor guilt, risk of suicide, complicated health issues and stigma. Both groups have kept their experiences to themselves, only willing to talk about the war many years later. Both share strong support communities even while battling crippling loneliness.

Imagine if the war in Vietnam or Iraq or Afghanistan had dragged on for 30 years, with no end in sight. That’s what it’s like to be a veteran of the war against AIDS. Sometimes it feels like you’re winning, sometimes you feel like you’re losing. Sometimes you’re on the front lines, sometimes you’re sent back for a brief furlough before redeploying. Maybe you mustered out. But the war goes on.

I never envisioned a day when we would need to address the aging issues of men and women who are HIV+. And it’s not just long-time survivors: in this article from the CDC, we Baby Boomers (of whatever sexual orientation) are becoming infected even now. Safe sex is not a topic of discussion at most retirement communities.

And that’s why I challenge the AIDS community – in cities, suburbs and rural areas – to hold listening sessions like the one I attended last night, to determine the services needed by those aging with HIV. And to provide grief support – individual therapy, groups, and online resources – to help them process the grief for their friends that is only now rising up, and give them some measure of peace.

ACT UP/NY’s Non-Reunion Reunion

Few things get your attention like hearing the news a friend has died. For many of the original members of ACT UP (AIDS Coalition to Unleash Power), the death of Spencer Cox was just such a wake-up call.

Keep in mind that these were men and women who lost dozens, if not hundreds, of friends to AIDS. They were on the front lines of the epidemic: educating, advocating, demonstrating, demanding. Some of them carry the AIDS virus themselves, saved by the ‘cocktail’ developed in 1996.

So you could forgive them if the numbness of experiencing so many losses would affect their ability to grieve. Similar to the military, you have to put your grief aside because the deaths just keep on coming. You tell yourself you’ll do something about it – feel – later. Sometimes you do, sometimes you don’t. Sometimes you just want to forget any of it ever happened.

It’s impossible to meet a veteran without hearing their stories of war. Those of us who were involved in the AIDS community, though, have been really good at keeping those kinds of stories to ourselves. I don’t remember making a conscious decision to put that time of my life away. I was just consumed with other priorities: getting married, raising my daughter, starting a new business.

Two years ago, I was asked by Tracy Baim at Windy City Times to contribute to their excellent AIDS@30 series, to reflect on my work as a fundraiser in the 80’s and early 90’s. It was nothing if not cathartic. People and incidents filled my mind, and I was stunned by the amount of anger I still felt. Friends and family were stunned, too: “I didn’t know you went through that. You never talked about it.” I knew AIDS would be part of my Friend Grief series of books, but that opportunity kind of opened the flood gates.

A few months ago, I attended my first ACT UP meeting while in New York. I was a little surprised at how small the group was, especially after seeing How to Survive a Plague, with its videotaped meetings of overflow crowds.

It was there that I met one of my long-time, somewhat-forgotten heroes, Jim Eigo. He told me about a benefit screening taking place in West Hollywood, when I would coincidentally be in L.A. for a conference. I attended it, and met another former ACT UP member, William Lucas Walker. Back in NYC in June, I met Peter Staley, the subject of the iconic photo taken by William that can be seen on HTSAP posters. I was - and am - inspired by them all.

Spencer Cox’s memorial service brought together many of those original ACT UP members. Now they knew what military veterans have known for centuries. “We realized we missed each other,” recounted Alan Klein in a recent article in Gay City News. “We missed our sense of shared community. It was a healing experience.”

So this weekend, June 22, the ACT UP/NY (Just Don’t Call It a Reunion) Reunion will take place at 49 Grove St.

AIDS is far from over. Klein said the goal of the event is “to create a safe space for people to talk about these series issues or about what they’ve been doing for the past number of years. Maybe it will be a reboot of our experience in ACT UP.”

I wish them well. After one of my high school classmates died on 9/11, our class – which had had a reunion just the year before – decided good intentions for keeping in touch were not enough. We started a Yahoo group to keep everyone informed: not just about how we wanted to honor Carol’s memory, but personal things like deaths of parents, spouses and other classmates, births of grandchildren, and the like. We get together periodically for group dinners, and smaller get-togethers. It changed us as a class and as individuals. I’m now close to women who barely spoke to me when our lockers were close together. The Yahoo group and my class are still going strong. It’s all good.

I hope it is for the members of ACT UP, too.

If you are reading this and were a member of ACT UP/NY back in the day, you can visit www.actupnyalumni.org for more information on the Non-Reunion.