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. 

Tuesday, August 26, 2014

How Celebrities Grieve Their Friends

Yes, I know I wasn't going to write about celebrities. But doesn’t it seem like a lot of them have died in the past month or so? James Garner, Sir Richard Attenborough, Lauren Bacall, Robin Williams, Elaine Stritch: all left grieving families and friends, just like non-celebrities – with one glaring difference.

Celebrities leave friends behind who are anonymous and others who are also celebrities. And while those live their lives in the glare of the media, that doesn’t mean that they’re capable of grieving gracefully in public. You may be surprised or even critical of them.

Remember Paul McCartney? He was roundly criticized for his “It’s a drag” comment the day after John Lennon was murdered.

People who hadn’t worked with Robin Williams in decades appeared on talk shows within hours to reminisce about days gone by. Here in Chicago, the local news stations tracked down his elementary school classmates. That’s not unusual. Watch the reports next time a celebrity dies, and see who the first people are to show up on camera.

Often, a celebrity will not appear in public after a friend’s death, instead issuing a very carefully worded press release or tweet.

Sometimes - but rarely – a celebrity speaks eloquently soon after a friend’s death. Russell Brand’s tribute to Amy Winehouse comes to mind, the pain of his loss beautifully exposed for all to see.

Why rarely? Because, as we sometimes forget, celebrities are people, too. They experience the same emotions, same life events. The glaring difference is that they grieve in public, not always by choice.

It seems that those closest to the deceased are often the last to speak in public. They prefer to grieve in private, which is everyone’s right. And I’m usually relieved that that is the case. Too often celebrities – and non-celebrities alike – try to make a tragedy about them. They see a chance to get some attention, at the expense of their friend’s memory. I don’t know about you, but that’s not my kind of friend.

So I’ll leave you with another one of those rare, poignant eulogies. It’s Billy Crystal’s remembrance at the Emmys. It’s a simple and loving tribute to a friend, devoid of the narcissism displayed by others.

What a concept.

Tuesday, August 19, 2014

Not Another Post about Robin Williams
I was just about to post last week when television, radio and the internet exploded with news of Robin Williams’ death. I’ve posted here about how and why we grieve when a celebrity dies. And I decided I didn’t want to write another blog post about celebrities.

But the topic I’d intended to share suddenly didn’t seem very important. I couldn’t stop thinking about Robin Williams. I’ve been a fan since “Mork and Mindy”. I have friends who worked and played with him, who are devastated. So I still could’ve written about him. I mean, why not? Everybody else has.

Like many of you reading this, I know people who have committed suicide. One was a high school classmate. One was a girl who lived next door when I was growing up. Another was the husband of a family friend. Each situation was very different. But my reaction when I’m told of the suicide of a friend is almost always the same: delusional.

Why delusional? Because – like the friends who gathered for Alex’s funeral in The Big Chill – I immediately assume I could’ve made a difference. “You think you can keep everyone jolly?” one of them demands. Not exactly, but I think most people, when told a friend committed suicide, will feel some level of survivor guilt.

It’s not the survivor guilt of someone who lost friends on 9/11 or from AIDS or on the battlefield: “Why did they die and I lived?”

It’s the survivor guilt of “Why couldn’t I stop them?”

I’m not going to offer some dime store version of therapy and suggest that if you’d been a better friend and kept in touch with them that that would’ve made the difference. I’m not arrogant enough to believe that I can understand what goes through a person’s mind as they contemplate suicide. But I’m pretty sure the reasons are more profound than “she didn’t return my phone call”.

What I will say instead is this: suicide leaves a long trail of broken hearts – not just family, but friends. It incites grief and guilt and overwhelming anger.

I’m a little early, but September is National Suicide Prevention Month. If you ask me, it should be every month.

There is help out there. There really, truly is help out there. And here’s where you can find some:

Tuesday, August 5, 2014

“Oh, That’s Depressing” – Writing about Friend Grief

I wish I had a dollar for every time I’ve told someone what I write about. “Oh, that’s depressing” is certainly the most frequent negative response. Luckily, I don’t hear it too often.

I was in New York last week at the Writers Digest Conference. Going to this particular conference in January, 2011, was what really kick-started my writing career. I met people there (and shortly after) who are still trusted advisors and friends. I started tweeting on my way to the conference so I wasn’t the only one there who wasn’t on Twitter. This blog began a week later.

Although I haven’t been posting as regularly the past few months, it’s not because I had nothing to say. There were health issues that got in the way, and at times, the self-publication process took precedence. I will be blogging more religiously now, I swear. But I digress.

Writers are supposed to have an “elevator speech”: how do you describe your work in the time it takes for an elevator ride? It shouldn’t surprise you that the reaction varies greatly depending on whether I say “I write about grief” or “I write about friendship”.

If I say I write about grief, there’s always someone who considers that depressing. No, I insist, it’s not depressing. Some of the stories are sad, but they’re not depressing. They’re about the impact our friendships have on us. That usually appeases them, at least for the moment.

Then there are the people who do not have a negative reaction. “I write about people who are grieving the death of a friend.” I used to call it the “You know…” moment. I’d tell them what I write about and there would be a pause, Their eyes never left mine, but I could see a spark of recognition.

Sometimes they nod, sometimes they smile, but the message is always the same: “Yeah, I get that.” More often than not, they’d say “You know…” and tell me a story about a friend of theirs who died.

At the Writers Digest Conference, I spoke with two men: one a former Marine, the other a former Air Force pilot. When I told them I’d written a book about losing friends in the military, they both had the exact, same physical reaction: They straightened up a little more, eyes open a little wider, and nodding slightly they both said, “Yeah…”.

That, as we heard in the conference sessions, is what many writers dream of: making a personal connection to their readers. They don’t want to read something theoretical, something dry. They want to read something that speaks to their hearts: something they can identify with and understand.

It took me a while to accept that I was capable of writing something that appealed to people. The compliments still surprise me. Unlike the publisher’s rep who told me three years ago that “grief is only going to be big for another two years”, the rest of the world knows that there is no expiration date on a universal experience.

There is one thing that’s hard for me. When I’m done with my research, and I’m immersed in putting stories together for a book, there are times when I find myself overwhelmed. It was particularly true with the last book, Friend Grief and the Military: Band of Friends. Although the previous two books (AIDS and 9/11) were also about people who died under horrible circumstances, this one was different. For several weeks, I was grumpy, to put it mildly. I came out of it, and I believe in the end, the book shows not just the unique grief of those who lose friends in war, but how the survivors are able to process their grief, sometimes in very creative ways.

Depressing? Maybe.

Sad? Definitely.

Inspiring? Very much so.

The reactions of my readers – and future readers – here on the blog, on Facebook, Pinterest, LinkedIn, Twitter, Google+, in much-appreciated reviews on Amazon and Goodreads, in private messages and in person – are what keep me going. So keep them coming! And thanks for being part of Friend Grief.

Tuesday, July 29, 2014

Friend Grief and Reunions

Our 2010 reunion
It’s reunion season.

I graduated from Nerinx Hall, a Catholic girls school run by the ever-progressive Sisters of Loretto in St. Louis. Since our 20th reunion, we’ve met every five years.

We’ve met in the school cafeteria, a country club, and the home of one of our classmates. Sometimes we’ve had one event, sometimes two over a weekend. Certain traditions are included at each reunion.

First, no men. We made that mistake at the five year reunion (actually held a year late) and decided it was too much trouble to entertain husbands or boyfriends. We have a lot more fun when it’s just us.

Second, before we meet for dinner or brunch, we have a tour of the school to see the wonderful improvements and bemoan the old days of manual typewriters rather than iPads.

And third, we start with Mass in the chapel at school. We used to have a priest celebrate it, but that became problematic. Now we have our own service, our way. The music changes, the readings change, but one thing is constant.

During the offertory, a rose is presented in memory of each girl from our class who has died, starting with the one who died while we were still in school. The causes of death – cancer, automobile accidents, suicide, 9/11 – are rarely discussed. But the girls themselves are remembered.

There have been times when we’ve gathered to plan a reunion when no one had died since the previous one. That will probably not happen again, though as far as I know, a year away from our next one, there’s no new rose to add.

Sometimes the deaths have been well-known to the class. Sometimes we’ve been surprised because we’d lost touch with someone. But as we age, we know that there will be more.

Maybe you’re one of those heading out of state or just across town to reconnect with old friends. Your focus may be on impressing people or just hoping to not embarrass yourself.

But at most every gathering – no matter the length of time – you will be confronted with the knowledge that not everyone is there. The girl whose locker was next to yours, the one who passed notes to you in World History, the one with the curliest hair - one or more of them have died.

Maybe you were close friends. Maybe you were in different cliques and just never made the effort to get to know each other. It doesn’t matter.

At some point during your reunion, you’ll look around. You’ll marvel that everyone got older except you. And then you’ll remember those who did not make it to their 20th birthday, much less their 50th. They were part of you, part of growing up, even if they’re gone.

So take a minute like we do. Recite their names, or include their pictures in the reunion program. Share a story.

And include all your classmates in your reunion.