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.

What Else Do You Grieve When You Grieve Your Friend?

On Friday, we looked at what you grieve when your friend dies: the regrets that revolve around their actual death.

Today, I’d like to shift the focus just a bit to answer the question a different way. Because when you grieve the death of your friend, you’re also grieving a part of you.

Friends come into our lives at different times: the first day of school or a new job, in a play group or on a sports team.

I think it’s safe to say that Shakespeare was right when he insisted that “all the world’s a stage, the men and women merely players”. We may not consider ourselves actors, but we are different people at different times in our lives.

I was a different person in high school when I was two lockers away from Corinne than I was doing plays in college with Michael.

I was a different person when I sat on a small theatre’s board of directors with Carol than I was listening to Dennis sing in the church choir twenty years later.

So, even as we mourn the death of our friend, and perhaps the circumstances, too, we also mourn the part of us that died with them.

We mourn the memories of what we did together. We may mourn the fact that now there is no one else left in the world who was there when we walked into our first audition, joined the mother’s club, or chaired our first meeting.

They remember us when we were pretending to be brave, but scared to death. Their presence calmed us down and maybe even made us laugh at ourselves. They accepted us, but didn’t hesitate to tell us we were full of shit. They were almost always right.

In the business world, it’s called “institutional memory”: people who have been around long enough to remember the way things used to be. Our friends are like that, too.

You may say, ‘well, that may be true, but their death isn’t about me’. We don’t just grieve a person, we grieve a relationship, and every relationship requires (at least) two people. One of those people is you.

The longer we live, the more friends we’ll lose. We’ll mourn them first. And then we’ll mourn who we were when we were with them.

Our Parents’ Friends

In the old Peanuts comic strip, adults were occasionally heard from but not seen.  Now and then you’d see the lower part of a body, but never, ever a face.  The adults were drawn as if at a child’s eye level: feet, legs, hands.

When you were growing up, there were adults around you who were friends of your parents.  They were the same kinds of friends you have: people they met at school, at work, in the military.  They shared the same kinds of experiences: growing up, dating, marrying, divorcing, raising children, taking care of aging parents.  They laughed and cried and argued and shared the special moments in their lives.

Some of these adults may be as close to you – or closer – than your own parents.

As we grow older ourselves, these adults – these role models – will also die.  And our parents will grieve them as surely as you will grieve your friends.

Perhaps the worst part of growing older – aside from the inevitable physical limitations – is outliving people you love.

Next time your parent loses a friend, encourage them to share memories with you. 

Because it is through sharing memories that people live on.