Friday, September 26, 2014

Avoiding Grief at Work

He looked great in a tux, too
I’ve been working hard lately on the next book in my series, Friend Grief in the Workplace: More Than an Empty Cubicle. But I struggled to find some validation about the importance of friendships at work.

There’s plenty of anecdotal evidence: stories you’ll read in the book. What I wanted was something more objective. Maybe I needed to conduct my own survey, a daunting prospect I was not prepared to seriously consider. So I ignored the issue for a couple days. As luck would have it, just such a survey presented itself yesterday morning.

You’ll learn more about the survey results in the book, but one of the obvious truths in it was the evidence that we are happier when we’re friends with our co-workers. Whether you love your job or hate it, sharing the experience with others makes our lives a little less stressful. Celebrating promotions, commiserating over a nasty boss, working on a project together: all are enhanced by friendship.

When I worked in the AIDS community of Chicago in the late 80s/early 90s, I did my best to not make friends with co-workers. It’s not that they weren’t nice people (though some weren’t). I knew their HIV status, and back then, being HIV+ was essentially a death sentence. I was never afraid of them or dismissive of them (though I did worry about my assistant’s ability to complete some of the more physical tasks of his job). But I was afraid of getting close, of making friends with someone I spent at least 10 hours a day with, someone I would certainly outlive.

I’m embarrassed to say I’m grateful that Steve and I were no longer working together when he died. To this day, he remains one of the sweetest, kindest, most thoughtful men I’ve ever known. And while I was glad to visit him, enabling his partner to take a brief break from caregiving, I knew I would not have wanted to watch his decline every day at work.

Despite my best intentions, I did wind up making friends with some of the people I worked with then, though most of them were volunteers who  were not around all day, every day. I’m still friends with some of them. We rarely talk about that time, because if we do, we inevitably find ourselves sharing a story about Steve or Ernest or someone else who’s been dead now for decades.

Am I sorry I didn’t make more friends at work? I’m surprised to admit I am. There were people I knew in the community – not actually in the office – who I only knew a little. We weren’t friends by any definition. But I regret now that I didn’t take the time, didn’t put aside my own fear of losing them. There’s no question that my grief would’ve been greater when they died. But my work life would’ve been a hell of a lot richer.

Thursday, September 18, 2014

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 25th 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.

Friday, September 12, 2014

Friends Shut Out on 9/11

Across from Zuccotti Park
Yesterday was the 13th anniversary of the 9/11 attacks. I've attended the observances in New York twice: the 9th and 10th anniversaries. This year, I attended again. And my, how things have changed.

On the two previous occasions I was here on 9/11, there were accommodations for the general public (i.e., anyone not a family member): loudspeakers on Broadway and around the site so the crowds could hear the prayers and names read. On the 10th anniversary, Jumbotrons were set up so we could watch, as well. This year...not so much.

As is my habit, I got down the lower Manhattan early, so I could scope out what was going on. I had to keep reminding myself that I couldn't compare it to 2011 because the 10th anniversary (which included the opening of the Memorial) was a very big deal. Still, as I walked around the entire perimeter of Ground Zero, I found myself increasingly irritated.

There was nothing.

As usual, the immediate area of the Memorial and Museum was blocked off to the general public. There were no loudspeakers, no crowd-control barriers. Zuccotti Park was nearly empty. People poured out of the PATH station and hurried to their jobs. Others wandered around, trying to catch a glimpse through the construction fences.

I walked over to Broadway and then City Hall Park, expecting to see groups there, maybe even the Westboro Baptist Church.

There was nothing.

By the time I made my way over to West St., I was really irritated. A reporter heard me express my frustration to a 9/11 Memorial employee and asked me to explain why I was there.

I told her I was there to pay my respects - the same reason everyone comes there. But unlike those previous years, I couldn't even hear the names read. I would've been better off if I'd stayed home and watched it on TV.

I had to content myself with attending the ceremony at the Queen Elizabeth II September 11 Memorial Gardens, near Wall Street. The Consuls General of the UK, New Zealand, Canada, Jamaica and India made brief, eloquent remarks. It's respectful, quiet and welcoming to all.

This was the first year the city did not oversee the observances at the Memorial. Maybe that's why it was so very different. I don't want to believe it was a deliberate decision - shutting out the public.

But for the people who came down there Thursday morning - friends and strangers alike - it added to the sadness in two ways:

First, that we were completely shut out, unable to even hear the names read.

And second, that maybe, just maybe, the world is forgetting about our friends.

Thursday, September 11, 2014

"We Don't Grieve Well Alone"

Former NY Giant George Martin and
me at the Information Forum
Yesterday I spent the day at the Voices of September 11 Information Forum at the Marriott Hotel across from the 9/11 Memorial and Museum.

It's an intense day of panel discussions for families, first responders, community members and medical professionals on a wide variety of topics: the treatment of complicated grief, cancer treatment information, updates on the Zadroga fund reauthorization.

As people considered buying my book - and thanks to all of them - every one volunteered information: "I'm a survivor". "My husband lost a lot of friends." "My buddy only got down from 83 to 43 because he was helping people get out." Once again, the willingness of people to tell their stories touched me.

Time doesn't heal all wounds, but time does have a way of giving us permission to remember and honor those we lost.

As Dr. Katherine Shear of Columbia University said in her talk on complicated grief, "We don't grieve well alone."

Community: family, friends, coworkers, therapists, spiritual advisors - help us grieve. And the 9/11 community is a perfect example of a previously unrelated group of people thrown together under horrific circumstances. A community that not only helps each other, but which has expanded their reach to help those in other communities experiencing traumatic events.

I think that's important. Remembering and honoring the past if important, but sharing our experiences can help others in ways we'll never know.

One woman who bought my book said, "I've been thinking about writing my story." "You have to," I told her. "Because you're the only one who can."

It will certainly be therapeutic for her. But it could make the difference for someone else out there, too.

"We don't grieve well alone."

That's the truth.

Tomorrow and Friday, I'll share my observations of being in New York for the 9/11 observances. It's very different 13 years later.