Friday, December 30, 2011

Friend Grief and Closure for 2011

In my last blog post of this amazing year, I thought I’d revisit a topic that came up a few months ago. Last May, after the death of Osama bin Laden, I wrote about what I called “the myth of closure”. It’s supposed to be something you aspire to, but it often feels just out of reach: because it may never be possible.




“Closure: the sense of finality and coming to terms with an experience, felt or experienced over time.” – Encarta Dictionary

“Closure” is a word frequently invoked in grief-related literature. Events are said to bring “closure” to people who grieve: discovery of remains, burial, 1st anniversaries, etc.
But the news of the death of Osama bin Laden may only be initially considered closure.
Certainly, the death of the most wanted terrorist in the world is a cause for celebration, even not knowing how other terrorist organizations will respond.
But for those who lost family or friends on 9/11, there is no closure.
Osama bin Laden is dead, but so are their loved ones.
Don’t assume everyone is happy and “all right” now.
Don’t assume the grieving is over. In fact, this news will likely re-open painful memories for all of us who knew someone who died that clear, blue September morning. My first reaction on hearing the news last night was, “but Carol’s still dead.”
“I hope it brings some comfort to the families. No closure. That word should be stricken from the English language.” - Lee Ielpi, whose son, Jonathan, a firefighter from Queens, died on 9/11 (quoted in the May 3, 2011 New York Times).
The death of Osama bin Laden has been heralded as closure for those who lost family and friends on 9/11, the end of the grieving. Now we can finally get back to normal and forget about what happened.
For some people, death is closure, after a loved one has suffered a long illness. For some people, getting to the first anniversary of someone’s death is closure, proof that you’ve survived your grief. Others can point to specific “signs” that made them feel better.
But for society to imply that one event – dramatic though it was – can end anyone’s grief is simplistic.
At my father’s wake, my girlfriend’s mother, who had lost her husband the year before said, “You don’t get over it; you just get used to it.”
For many people, bin Laden’s death will ease their minds. “Justice” has been served.
But make no mistake: their grief has not ended. For them, there can be no real closure.
At least not in this lifetime.

Best wishes for a safe “closure” to 2011!

Wednesday, December 28, 2011

Friend Grief and Laughter

This post originally appeared last March, about one of my favorite TV series, The Mary Tyler Moore Show. Although something very tragic had happened, the resulting humor is something we can all identify with - for better or worse.
Laughing at funerals is generally frowned upon (Irish wakes notwithstanding).
People are expected to act a certain way: maybe not grief-stricken, but at least respectful of those who are and the person who has died.  You get a lot of dirty looks if you’re the only one laughing.
In recent years, there has been a movement to make wakes and funerals and memorial services more of a celebration of life.  Laughing – in the context of shared memories – has become appropriate. 
Considered by the Chicago Tribune to be the funniest TV comedy episode of all time “Chuckles Bites the Dust” on The Mary Tyler Moore Show concerned the death of Chuckles the Clown.  Dressed as Peter Peanut, he was trampled by a rogue elephant during a parade.  Mary’s coworkers immediately began to make jokes, and she was horrified by what she saw as nothing less than cruelty.
But at the funeral, she suddenly finds herself unable to stifle her laughter.  Now it’s everyone else who’s disgusted.  And in a complete reversal, as soon as the minister encourages her laughter – because Chuckles hated sadness - she breaks down in tears.


Have you ever been the one to laugh when no one else did?
Maybe your memories of your friend made you giggle.
Maybe something absurd – something your friend would have thought funny – happened during the wake or funeral.
Everyone grieves differently.
Sometimes they even laugh.
Don’t be afraid to laugh, even in the midst of your tears. You can probably hear your friend laughing right along with you.

Monday, December 26, 2011

Friend Grief and the Holidays

I wasn’t going to write about grief and the holidays. There’s a lot out there already, by people much more knowledgeable than myself.
But there’s not a lot out there about dealing with friend grief during the holidays.
Is it different? Is grief just…grief?
The thing that complicates friend grief at this time of year is the same thing that makes the holidays - at least theoretically - great: family.
We are in the midst of several holidays - Thanksgiving (in the U.S.), Christmas, Hanukkah, New Year’s, and Valentine’s Day - that are family/romance oriented. These holidays are defined by family gatherings and traditions.
Many of us take time during these holidays to remember family members who are no longer with us. In fact, the holidays may be incredibly difficult if that loss is recent.
So where does that leave us when it is a friend who has died?
It leaves us…nowhere.
It leaves us with a sense of profound loss, a loss that is sometimes magnified by the lack of rituals surrounding our friendships. Where do we go and what do we do, during this very family-oriented time of year, to remember/grieve/celebrate our friends? And how do we excuse ourselves from our families to do so?
Even those lucky enough to have Norman Rockwell-style holiday celebrations can find themselves in need of time apart from family. So here are a few suggestions, if you haven’t thought of them already:
-          Was there a place you and your friend liked to hang out - a park, a café, a neighborhood, a bar? Go out, even for an hour or so, and revisit that place.

-          Was there something you and your friend enjoyed doing - shopping at a particular place, jogging, going to the movies? Do it alone, but “take them” with you.

-          Seek out a mutual friend: call them, meet them, tell stories and raise a glass in memory of your friend.
It may be difficult, at least the first time, to be there without your friend. But it may be surprisingly comforting. You may feel their presence.
Two years ago, I went to Christmas mass at an Ecumenical Catholic Church (Sts. Clare & Francis in Webster Groves, Missouri), one that welcomes women priests. My friend, Delle, was called to be a priest, but the Roman Catholic Church does not allow that (at least not yet).
I sat in the pew, watching a woman concelebrate mass, and couldn’t stop thinking about Delle. That should be you, I thought to myself, tears overflowing. That should be you. Suddenly, I felt arms around me, as if someone was kneeling behind me and leaned forward (no one was there). And I heard Delle’s voice: “it’s okay.” My tears ended, and I felt a wave of peace.
So, I felt both reactions: pain and joy. And as this holiday season continues, my wish for you is to feel the joy along with the pain, for that is what makes it bearable.

Friday, December 23, 2011

Friend Grief and "The Concert for George"

This post originally appeared in February, but I’m quite partial to the documentary of this concert. At first I was drawn to it because I’m a huge fan of George Harrison. But as I watched the special on PBS, I became more and more entranced by the commentary from Eric Clapton and others. You’ll see why:
“All I wanted to do was really share our love for George and his music with the people.  I need to do this for him, but it’s for me most of all – I need to be able to express my grief in this sort of way.” – Eric Clapton
How do we memorialize our friends?  How do we show the world how much that person meant to us, how much our lives changed for knowing them?  There’s more than one way to remember your friends, just as there is more than one way to grieve.
Some people give eulogies.  Some people donate money to causes that were important to their friend.  Some people have the opportunity to do something a little bigger.
One year after George Harrison died, a group of his friends gathered at The Royal Albert Hall in London for a ‘memorial service’.  It was called The Concert for George, an evening to celebrate the music and the life of the “quiet Beatle”.
People came from all parts of his life: his wife and son, the two surviving Beatles, his favorite comedy troupe (Monty Python), musicians he’d played with and admired.  They shared his music and entertained an audience not just in attendance that night, but around the world via PBS and a commemorative concert DVD.  Their efforts supported the Material World Charitable Foundation, established by Harrison in 1973.
There were no eulogies, in the traditional sense.  But as you listen to them talk between songs and during rehearsal you realize the true meaning of that night for his friends:  to work through their grief while honoring their friend. 
“A lot of our grieving has been dealt with by playing this week,” Clapton said.  “This is a blessed occasion for me because I can share my love of George with you…and I think most important of all is that his wife Olivia and his son Dhani can experience and witness how much we loved him, through his music tonight.”

Most of us don’t have the chance to memorialize our friends in this way.  But the sentiment Clapton expressed is universal.  We want the world to know and love that person who meant so much to us:  who they were, why they were important to us, and why the world is a sadder place without them.
And as we close in on Christmas, perhaps now would be a good time to let them our friends - the ones still here - know how much they mean to us.
Singing is optional.

Wednesday, December 21, 2011

Your Own Personal "Big Chill" Moment

This post originally appeared in February. I think it’s a good reminder to not wait until it’s too late to re-connect or keep touch with our friends. The holidays are a perfect excuse, don’t you think?


Karen: “You'll never get this many people to come to my funeral.”
Michael:  “Oh, Karen, I'll come. And, you know... I'll bring a date.”

You’re going about your day – conference calls, grocery shopping, carpool – when you get a call, a text, maybe an email with the subject line “sad news”.  Someone you know – a friend – has died.  And the world stops.
It happens to us all eventually.
The iconic film about this experience is The Big Chill, the 1983 film about a group of people who reunite for the funeral of one of their college friends.  It was a blockbuster, and not only because of the soundtrack (who can forget JoBeth Williams playing “You Can’t Always Get What You Want?” on the organ for the funeral recessional?).  It was something everyone can identify with:  the death of a friend.
Not all of us will spend the weekend with our friends in a sprawling Southern mansion: playing touch football, getting high, or having sex with our best friend’s husband.  But reconnecting with friends on such a sad occasion can still have a profound effect.
Sometimes – too often – you lose touch with those friends.  Life gets in the way: jobs, families, living hundreds of miles away – all prevent you from keeping in touch with the people who at one time were the most important people in the world.  Still, you wonder how and why you let it happen.
Like the characters in The Big Chill, that gap in contact can create terrible guilt.  You may think that somehow your presence could’ve saved your friend’s life or made it easier.  Pretty egotistical, huh?  But human. 
These characters were all extraordinarily lucky:  they were all able to come to that funeral from their homes around the country.  Not everyone can even get off work to attend a local funeral for a friend, never mind one that is hundreds of miles away.
And most importantly, they were notified.  Sometimes friends – particularly far-flung friends – do not learn of a friend’s death for months or even years.  The friend’s family may not have liked you or even known about you, but to find out after the fact compounds your grief.  And even though the point where you can “do” something is long past by then, the feeling of helplessness can be overwhelming. 
One of my high school classmates, Carol Demitz, died on 9/11.  We’d celebrated our 30th high school reunion the year before (although she didn’t attend) with the usual ‘we should get together more often’.   But it took Carol’s death – not the first in our class – to put those words into actions: a class gift in her memory, a Yahoo group that’s still going strong more than 9 years later, occasional informal dinners, and a bond that has grown stronger each year.  Her death, I suppose, was our Big Chill moment:  our wake-up call to nurture the friendships that sustain us, and stop relegating our dreams to the “someday” pile.
Take a moment today to contact a friend – just one; it won’t take long – who you’ve lost touch with.  Catch up on news and gossip, reminisce, and make real plans to get together.  Don’t wait until you get that call, that text, that email.
“In a cold world, you need your friends to keep you warm.” – Big Chill poster
What are you waiting for?

Monday, December 19, 2011

Why We Miss Our Friends During the Holidays

We are in the final stretch now, before Hanukkah and Christmas. Many of us are running on adrenaline as we race to get everything bought, wrapped, cooked, served, addressed and mailed. We wonder sometimes why we’re making ourselves crazy for festivities that are over so quickly.
We do it because…well, we’ve always done it, or we’ve let it get out of control. We do it for our families. We do it for the kids. And possibly, we’ll be able to stop and remember the true meaning of the holidays.
Yes, the holidays are about family, no doubt about it. Friends are often pushed aside (family comes first).
I remember coming home for Christmas or Thanksgiving and spending more time with my friends than with family. Friends never seemed to make demands, or expect presents (although they were infinitely easier to buy for). We could just relax and catch up and enjoy ourselves.
I loved the first day back at school after Christmas break, because we’d hug and squeal as if we hadn’t seen each other in decades, when in fact it had been less than two weeks.
Now some of those friends are gone; one even died during the holidays. I knew she was dying, but it was still a shock.
What I miss this time of year about my friends who have died is the absence of pressure: pressure to give them the perfect gift, to make sure everyone gets along all the time, to pretend we’re in the middle of a Hollywood movie.
I miss those friends, no matter how infrequently we saw each other. I miss being able to call them up and say “let’s meet for lunch” or “I can’t wait to give you your present”. I miss catching up and solving the problems of the world (or just our love lives). I miss knowing we didn’t have to “behave”. I miss their friendship and I miss their love.
And after all, that is what the season is all about.

Friday, December 16, 2011

No One Expects Their Friends to Die

I’m reposting again, a blog entry from last March, originally titled “Let’s Be Careful Out There”.
Last night I had dinner with a few of the classmates referred to here. Most of us hadn’t gotten together in over a year, at our last reunion. But thanks to one persistent woman, there were about 20 of us, laughing and catching up. It was, again, as if no time had passed.
We noted several who weren’t there: one woman whose mother died a few days ago, another whose husband is ill, still another who has MS. We’re at the age when we get paranoid when someone’s a no-show.
So for all our friends, enjoy:

At the end of the morning roll call on the 80’s hit Hill Street Blues, Phil would always remind his comrades “let’s be careful out there.”
They were cops. They knew every day could be their last.
Not everyone lives that consciously, certainly not when they’re younger.
But the truth of the matter is, the world is a dangerous place. Stuff happens, no matter where you live.
We can eat healthy foods, exercise every day, do all the things that are supposed to “guarantee” a long life and still not reach that goal.
This photo is from my 40th high school reunion. Each rose represents one girl from my class of 122 who died; there are 9. One died our senior year, the most recent, two years ago.
As we age, we lose more and more friends. It’s just the law of averages, and not unexpected. What we don’t expect are the “before their time” deaths.
We don’t expect to experience a friend’s death before we’re old enough to vote.
We don’t expect to experience a friend’s death before our hair turns grey.
We don’t expect to experience a friend’s death, period.
So when it happens, we can become skittish, paranoid about our remaining friends. We pester them to lose weight, exercise more, or have that mammogram. We probably annoy them beyond words, and they might even tell us to back off.
Too damn bad.
The price of being a friend is that you are loved.
And you’ll just have to live with that.

Wednesday, December 14, 2011

Friend Grief and Guilt - “My Name is Alex”

This blog post originally appeared last February, titled “My Name is Alex”. I think it speaks to another one of those uncomfortable emotions that can complicate grief: guilt. Sometimes there’s just no logical reason why one person lives and another dies. But that doesn’t make us feel any better.

It didn’t help Alex, either.

Family Ties was a successful sitcom in that ran on CBS from 1982-1989  A family led by parents who’d been hippies in the ‘60’s included one son, a conservative Republican, played by Michael J. Fox.
Arguably its most famous story is “My Name is Alex” from the fifth season.  Performed live in two back-to-back episodes, the second with no commercial breaks, it opens with the Keaton parents and their two older children returning from the funeral of Alex’ best friend, Greg.  The parents are concerned about their son’s reaction to what has happened.  Indeed, Alex is a model of forced cheerfulness.
When he’s alone, Greg appears to him – a real, physical presence, cracking jokes about how being dead is a great excuse for missing his economics test.  Alex apologizes again and again, because there’s more than grief at work here: there’s guilt.  Greg had asked Alex to help him move furniture, and because Greg had shown up late, Alex had refused.  “I couldn’t be bothered,” he tells his sister.  “Selfishness saved my life.”  Minutes after that refusal, Greg died in a car accident caused by trying to make up for lost time.
“I was supposed to be in that car,” he screams, finally falling apart.  His parents send him to a therapist, and Alex is resistant, to say the least. 
But as he begins to talk about his family and his childhood, he becomes less cynical and condescending, especially when it comes to his memories of Greg.  Greg’s willingness from their first meeting to treat the brilliant Alex P. Keaton as just a regular guy was something Alex cherished. 
Whether, as the therapist insisted, it all came down to whether Alex believed in God, is debatable.  What was clear as the episode drew to a close was that Greg’s death – and life – gave Alex a new perspective on his own future:
“Greg’s dead and I’m alive and I can’t change that.  But I can keep his memory alive.  I can take his sense of humor and his energy and his warmth and I can make it my home. I can be the best Alex Keaton that I can be and I can use the gift that I’ve been given and I can take time to appreciate the beauty in this life.”
Maybe you are one of those people:  someone whose life changed dramatically when a close friend died. 
Maybe you became a “different” person. 
Or maybe you just took the best parts of your friend and made them your own.


Monday, December 12, 2011

When Your Friend is Trashed in the Press

The combination of anger and grief stirred up a lot of interest here recently. It comes up occasionally in my book. Honestly, it could probably be a book all on its own. You’re expected to be sad when a friend dies. But angry, too?
You’re grieving…maybe feeling guilty…and now you realize that the world has a completely distorted view of your friend.
Mike Pfeifer and Cliff Kearney were held at gunpoint by three masked men who broke into their home. While Kearney was beaten, one of the robbers fired his sawed-off shotgun to intimidate Pfeifer. When the weapon was pointed at Kearney, Pfeifer grabbed the barrel, and was shot multiple times. The burglars ran, but by the time paramedics arrived, it was too late.
Eight hours after the shooting, the local sheriff’s office released a statement saying the shooting was drug-related. Kearney insisted no drugs were involved, that it was a straight-up robbery by young men who were grabbing TV’s and demanding money. But, you know: young men with guns stealing from other young men. What else could it be?
We’ve all seen retractions in the papers and on websites. Or maybe we haven’t seen them, because they’re buried in 9-point type below the underwear ads on page 17. We live in a 24-hour news cycle that demands instant information. The problem is that the desire to break that story first doesn’t always square with accuracy. “Corrections” are made days or even weeks after the first misinformation was shared. And since that headline isn’t nearly as titillating as the original one, the truth is lost.
So, what’s left to do? You know the truth, and in the end, that’s what matters. But knowing the world has an impression of your friend that is completely wrong…and knowing you may not be able to change anyone’s mind…that takes a toll.
Maybe all that we can do is rein in our natural tendency to believe those first broadcasts. It’s not just the lawyers who make them say “alleged” or “appeared to be” or even “presumed”. They don’t know for a fact, and that means neither does anyone else. Sometimes the facts take time to make themselves known.
So when you’re watching the news, reading a newspaper, or surfing the internet…and you come upon a story about someone’s death…and you are tempted to rush to judgment about that person…stop. Stop and give them the benefit of a doubt. Stop and consider for a moment how you’d feel if that were your friend.

Thursday, December 8, 2011

Finding the Words to Grieve Your Friend

Thirty-one years ago today, John Lennon was murdered in front of his apartment building in New York.
I love this picture of him: confident in his own skin. “This is who I am, and if you don’t like it (fill in the blank).”
Lennon had millions of fans and a lot of friends. Many of them spoke to the media after his death. Some were very eloquent. Paul McCartney was not one of them.
Their relationship as members of the Beatles was one of incredible creativity. But their friendship was volatile. They’d been estranged for years after the break-up of the group, and John had made some very critical, very public remarks about Paul’s solo efforts. But in December, 1980, they were speaking again, tentatively re-establishing their friendship.
In In Other Words: Artists Talk about Life and Work, Anthony DeCurtis recounts an interview with Paul McCartney in 1987. They covered his years with the Beatles (it was the 20th anniversary of “Sgt. Pepper’s Lonely Hearts Club Band”). The discussion took a turn when he began to talk about the breakup of the group, segueing into the topic of Lennon’s death. McCartney received a firestorm of criticism for his initial public comment, “it’s a drag.”
“But I said ‘it’s a dra-a-a-ag,’ and meant it with every inch of melancholy I could muster. When you put that in print, it says, ‘McCartney in London today, when asked for a comment on his dead friend, said, ‘It’s a drag’.’ It seemed a very flippant comment to make.
“…All these people who were supposed to have been John’s friends. The rest of us were just gaga with grief and sitting at home crying, watching all the news and watching all the telly, watching anything we could gather, and listening to every bit of radio. It was just like Kennedy dying, only worse for us, and that had been bad enough.
“The pundits come on, ‘Yes, so John was the bright one in the group. Yes, he was a very clever one. Oh, well, he’ll be sorely missed, and he was a great so-and-so.’ I said, ‘Bloody hell, how can you muster such glib things?’ But they were the ones who came off good, because they said suitably meaningful things. I was the idiot who said, ‘It’s a drag.’
I’ve always been a huge Paul McCartney fan, but I remember being taken aback by what appeared to be an almost callous response.
In retrospect, and with the benefit of experience, I know now that he was in shock. Now, when I see “friends” of people who have died waxing eloquent on cable news programs, I’m a little suspicious. I think McCartney’s reaction is probably much closer to what you or I would be able to immediately say to the media.
So don’t feel bad if it’s difficult to put your grief into words. The words will come, eventually. Console yourself with memories. And in the case of John Lennon, maybe a song, too.

Tuesday, December 6, 2011

Did Your Friend Die This Year?

As 2011 draws rapidly to a close, we turn our thoughts not only to the holidays, but to remembering those we've lost this year.

It seems every media outlet - TV, radio, magazines, internet - compiles a list of people who died in the past year. We even see this on awards shows, like the Academy Awards.

Below you’ll find a link to the New York Times, asking for photos of people who died this year. You can give a brief (200 word) description when you upload your photo.

Why not submit a photo of your friend, a photo that expresses one aspect of their life? Don’t delay: photos will appear on their website and the Dec. 25 Magazine.

Share your friend with the world.


The Lives They Lived

Saturday, December 3, 2011

A Request about Friend Grief

As you probably know, I’m writing a book about people’s experiences grieving the death of a friend. ‘It’s Not Like They’re Family’: Mourning Our Friends and Celebrating Their Lives is a look at the phenomenon of friend grief: the lack of respect for that kind of grief, and how it’s often a catalyst for major life changes.
I’m looking for stories for several chapters in the book:
Workplace grief: when the friend who died is a co-worker.
Community: when the friend who died is a member of a community (religious orders and first responders in particular).
People who were shut out by their friend’s family, either while the friend was dying or afterwards (not notified of the death or banned from funeral).
And always, what life changes you made after your friend died.
If you have a story you’d like to share, don’t leave a comment here. Email me at VictoriaNoe@FriendGrief.com. I will email you a survey to complete and follow up for additional information.
Feel free to share this request with anyone you know who may be interested in sharing their story.
Many thanks in advance!


Wednesday, November 30, 2011

"Forming Community" - AIDS@30



Steve & I at the Drake

"Forming Community" first appeared in April in Windy City Times. I was honored that publisher Tracy Baim asked me to be part of her series on the history of the epidemic. For tomorrow, World AIDS Day, here it is:
The first time I remember being conscious of the effects of AIDS was March, 1983. My girlfriend was in the hospital, after a difficult labor and delivery that called for a transfusion. She worked in the lab at that hospital and knew the blood supply wasn’t safe. When I visited her there, her sheets had more color. But she still refused the transfusion.
Sex in the 80’s – gay or straight – was a challenge. I was tested twice (once a requirement by a prospective lover, once to ease my own mind). I demanded the men I slept with wore condoms, and it was not always well received. There was much grumbling and insisting they were ‘all right’. But that was a deal-breaker, and no one talked me out of it.
I was volunteering occasionally, mostly to help raise money until 1989, when I took a job at Chicago House as development director. I was the only straight person in the office, something that did not meet with great approval.
The animosity I faced as a straight woman in the AIDS community surprised me. AIDS was still considered a gay issue, and there was a bit of territorialism. I suppose I was naïve. I had no agenda; I just wanted to help.
I came from a theatre background, so I’d had gay friends since high school (even wound up dating a couple, unintentionally). However, I’ve never been to a college reunion because so many of the guys I went to school with have died, many of them from AIDS. I found out one of them had died when I saw his panel on the cover of a book about the Names Project quilt.
I got a phone call from my mother one day, also in the 80’s. She had that “someone died” tone in her voice. When I asked her what was wrong, she said she called to tell me that Richard was gay. “And…?” I asked, fearing the worst. “That’s it,” she insisted. I couldn’t believe she didn’t know. Richard was my father’s best friend then, and remained so until the day my Dad died. Their friendship didn’t change because Richard came out; if anything they grew closer.
The work at Chicago House was challenging and exhilarating and sometimes frustrating. The mission statement read: “Chicago House provides residential and support services for people living with HIV & AIDS.” The problem, as it turned out, was the word ‘people’. Everyone assumed we only served men.
So I did something that was, well, wrong. I didn’t ask permission, and I certainly had no right to do it, but I changed that word in the mission statement. I changed ‘people’ to ‘men and women’. It was as if a light bulb went on, the reaction I got now was so different. “You have women living there?” And just like that, funding organizations looked at Chicago House differently.
While I was there, we opened the third house, which was a hospice. I remember it was a very cold Chicago winter day, with wind chills well below zero. Mayor Daley was coming to see the house, along with some media to record the visit. Now, relations were quite strained between the Mayor and the gay community at that time. In fact, he was coming to the house in Edgewater from a meeting with gay leaders at Ann Sather’s.
As usual, he was running late, but when he got there the schedule was forgotten. He went upstairs, with Tom Dombkowski and John Chester (the executive director and board chair), but without the media. I stayed on the first floor, but after a few minutes, he appeared at the top of the stairs and told the media to grab their cameras. “Come up here; you need to see this.” When the tour was finished, he sat in the living room and answered questions for some time.
There was a constant stream of fundraisers: bar events at Little Jim’s and Roscoe’s, drag shows, a dunk tank at Halsted Street Days, and our first black-tie event at the Drake. I was in London the year before on the first World AIDS Day, and a collection was taken up at curtain call in the West End theatres. I stole that idea the following year, and we sent volunteers to theatres to collect money for Chicago House. Some of my most dedicated volunteers have remained friends to this day.
I left Chicago House after a year (I’ll leave it at that), and continued to raise money in the AIDS community as a consultant with groups like Bonaventure House and Stop AIDS. But there was a price to pay, and it was an emotional one.
A year or so after I went out on my own, I went through as stretch of 11 weeks in a row, where someone I knew died every week. Only one was really close, Steve Showalter, who’d been my assistant at Chicago House. But all were men I’d known around the community, had worked with on projects, or just knew socially.
When I heard about the 11th one, I called my former acting teacher in L.A. and asked if I could visit. I booked a seat on Amtrak: two days with no phones, and no contact with others unless I wanted it. By the time I got there, I was able to hold a coherent conversation; by the time I came back a week later, I could work again.
I bought a copy of And the Band Played On, Randy Shilts’ indictment of pretty much everyone in the 80’s. I remember very clearly throwing the book across my living room several times. I’d read about government inaction, or medical fraud, or politics, and I’d have to stop to…throw the book. I considered at one point buying a copy that wasn’t so beat up, but I think I want to hold on to that reminder of my anger. My best friend asked recently why I read it when I’d already lived through it. The anger: that’s why.
Now and then, I’d mention going to a memorial service, visiting someone at Illinois Masonic, referring someone to Herdegen-Brieske (a funeral home that would take AIDS victims), and I would be asked “how did they get it?” There were few things – then or since – that could instantly infuriate me like that question. My responses were not exactly polite. The nicest I could come up with was “what the hell difference does it make?”
Looking back on that time, I was angry a lot. I felt as if I were living in London during the Blitz: never knowing where the bombs would drop, only that someone I knew would die. And most people didn’t care.
In 1993, I married a man who welcomed my gay friends. He had to: it was non-negotiable. Our wedding flowers all had red ribbons, and our reception was in the Gold Coast Room, the location of the first Chicago House black-tie dinner. One of my former volunteers, Russ Glidden, designed my invitation; another, Fred Eberle, sang at the wedding. We remembered those lost to AIDS during the ceremony.
My late father wanted our first dance to be “Wind Beneath My Wings”, but for possibly the only time in my life, I refused to do something he asked. I couldn’t do it, I told him, because virtually every memorial service I’d ever been to – and there were many – used that song. It was just too sad for me. So we danced to “Sunrise Sunset”. “Wind Beneath My Wings” was the only song played at his funeral.
There are those who feel an ownership to the AIDS crisis, and I understand that. There was certainly a lot of suspicion and occasional antagonism towards any “breeders” who joined the efforts. The gay community was devastated, and my losses pale in comparison.
When asked what I’m most proud of in my life, the little bit I was able to do for the 10 or 12 years I was involved in fundraising for AIDS organizations is close to the top of my list (sorry, my daughter’s at the top).
I wonder if what I did made any difference. Thirty years later I worry about my gay nephew, even though he assures me he practices safe sex. I worry about my gay friends, even the ones who I know are HIV-negative, because I’m used to worrying about them.
I remember a moment in the early 80’s. I don’t know where I was, or what I was doing, I just remember the moment. I thought to myself: “I don’t want to look back and be ashamed I stood by and did nothing.”
What I did wasn’t much, and it may not have changed anything. But I’d do it again, gladly, even knowing I’d lose so many people I cared about.

Monday, November 28, 2011

World AIDS Day 2011 - 30 Years of AIDS

“Disenfranchised grief” is defined as grief that is not socially accepted or acknowledged. I learned a lot about it in the AIDS community.
Thursday, December 1, is World AIDS Day, this year marking the 30th anniversary of the pandemic.
I worked in the AIDS community in Chicago in the late 80’s/early 90’s, after volunteering for a while to raise money for much needed services.
If you had told me in 1981 that 30 years later we’d have no cure, I wouldn’t have believed you. Scientists always seemed to be “closing in on” a cure.
If you had told me in 1981 that in addition to having friends who died within weeks of their diagnosis, that I would also have friends who have been HIV+ for over 25 years, I wouldn’t have believed that, either.
No one lived that long - months, maybe years if they were extraordinarily lucky - but decades? I would’ve thought you were nuts. Or just cruel.
The current state of AIDS (as of October, 2011) is grim:
  • More than 33 million people now live with HIV/AIDS.
  • 2.5 million of them are under the age of 15.
  • In 2009, an estimated 2.6 million people were newly infected with HIV.
  • 370,000 were under the age of 15.
  • Every day more than 7,000 people contract HIV—nearly 300 every hour.
  • In 2009, 1.8 million people died from AIDS.
  • 260,000 of them were under the age of 15.
  • Since the beginning of the epidemic, more than 60 million people have contracted HIV and nearly 30 million have died of HIV-related causes
Sub-Saharan AfricaMore than two-thirds (68 percent) of all people living with HIV, 22.5 million, live in sub-Saharan Africa—including 92 percent of the world’s HIV-positive children. In 2009, an estimated 1.8 million people in the region became newly infected. An estimated 1.3 million adults and children died of AIDS, accounting for 72 percent of the world’s AIDS deaths in 2009.
Asia and the PacificIn Asia and the Pacific, more than 360,000 people became newly infected in 2009, bringing the total number of people living with HIV/AIDS there to more than 4.9 million. AIDS claimed an estimated 300,000 lives in the region in 2009.
CaribbeanAn estimated 17,000 people became infected with HIV in 2009 in the Caribbean, bringing the total number of people living with HIV/AIDS to 240,000. An estimated 12,000 people died of AIDS in 2009.
Central and South AmericaThere were an estimated 92,000 new HIV/AIDS infections and 58,000 AIDS-related deaths in Central and South America in 2009. This region currently has 1.4 million people living with HIV/AIDS.
North Africa and the Middle EastApproximately 460,000 people are living with HIV in this region and an estimated 75,000 people became newly infected in 2009. An estimated 24,000 adults and children died of AIDS
Eastern Europe and Central AsiaSome 130,000 people were newly infected with HIV in 2009, bringing the number of people living with HIV/AIDS to 1.4 million. HIV/AIDS claimed 76,000 lives in 2009.
Western and Central EuropeIn 2009, there were 31,000 new cases of HIV, bringing the number of people living with HIV in Western and Central Europe to 820,000. An estimated 8,500 people in these regions died of AIDS in 2009.
Source: UNAIDS Report on the Global AIDS Epidemic 2010; Kaiser Family Foundation.
On Wednesday, my post will be unusually long. I’m sharing the article I wrote in the spring for Windy City Times, Chicago’s largest publication serving the LGBT community. Their series, AIDS@30, recounts the history of AIDS: its impact on politics, civil rights, culture, medical research and treatment not just locally, but globally. You can follow the series at Windy City Media Group
Perhaps you know people who have died of AIDS, or are living with HIV. Take a moment on Thursday to remember them, and how the stigma of this horrible disease added to their pain, and maybe yours, too.

Friday, November 25, 2011

Being Thankful for Our Friends

I don’t think it was intentional, but I seem to have spent a good part of November connecting and re-connecting with friends.
I’m sure the fact that this month was the 5 year anniversary of my friend Delle’s death had something to do with it, at least subconsciously.
So I began to be very assertive about the time I spent with friends. It began with a trip to New York:

Several days there seeing shows, eating and drinking with Eileen, who I’ve known since…well, a long time.
A relaxing lunch on an unseasonably warm day in Union Square Park with an old boyfriend.
Reconnecting with two friends from college (after not seeing either for 30+ years), for a catching-up, laughing lunch on the Upper West Side that we plan to repeat in January.
After I got home, phone calls and emails to five to six people I haven’t talked to in weeks, making solid plans with most of them to get together in the next week or so.
Yes, as I blogged about recently, it’s often easier to make time for a funeral than for lunch. It’s a sad indictment of ourselves and our culture. But it doesn’t have to be that way.
Don’t set yourself up for guilt on top of grief, guilt brought on by your very human failure to make time for your friends.
I’ve had some touching responses to this idea, from people who have made a renewed commitment to their friendships. Now, they do run the risk of being rebuffed, because their friends don’t have the time or inclination to see them. But that’s the risk we always take with relationships.
The holidays are upon us now, a built-in excuse for…excuses. But it doesn’t have to be that way.
So, while you’re being thankful for your friends, take that extra step. You know: the one that comes after “we should get together soon.” The one where you say, “okay, how about next Friday after work?” It’s not so hard. You can do it. Just give it a try.

Wednesday, November 23, 2011

Giving Thanks for Missing Friends

“As long as you remember him, he’s not really dead.”
I’m paraphrasing a line from Doctor Who, but that’s certainly the intent of the Doctor’s message.
As Americans pause to celebrate Thanksgiving Day, and even those in other countries mark the day with giving thanks by volunteering, it’s a sentiment worth considering.
Holidays - like anniversaries and birthdays - can be painful for anyone who’s lost someone they love. We are haunted by memories of time spent together, and I use the word “haunted” deliberately. The memories don’t necessarily make us feel good.
But as we give thanks, let us remember - without being haunted - our friends.
I’ll remember laughing on the phone with Carol, who watched the Iran-Contra hearings on C-SPAN as she lay dying from breast cancer.
I’ll remember dancing with Steve, so handsome in his tux, in the Gold Coast Room of the Drake Hotel, just months before he developed full-blown AIDS.
I’ll remember sitting at Academy of the Sacred Heart’s Prize Day with Delle, taking pictures of our daughters and making plans for the summer.
I’ll remember conversations with Chris in the cafeteria, full of teenage-angst and solutions for the world’s problems.
They’re not big things. They’re ordinary: dancing, talking, and laughing. But the little things make up our lives: those simple, everyday, sometimes boring things that mean so much to us later on.
My daughter once asked me why grownups don’t just hang out like kids do: they always seem to need an excuse to get together (a meal, a movie, a special occasion). I guess we get so busy we feel we have to make formal appointments, do specific things, because just “hanging out” isn’t important enough.
This holiday I’ll most likely be remembering those times I hung out with friends: in dorm rooms, the basement of my parents’ house, school cafeterias, apartments. I won’t feel haunted, though I may feel a little sad that those friends aren’t here anymore to hang out with.
How about doing the same? Remember the friends who are no longer with you: the little things you did together that cemented your friendship. Feel sad if you want, but not guilty, because even though there weren’t enough of them, those moments did exist.
And while you’re at it, call up a friend who’s still around. And just hang out.