Thursday, December 20, 2012

I Might Want to Interview You

Despite the holidays, I'm currently researching the third and fourth books in the Friend Grief series. One is on the experience of grieving the death of a friend in community, the other in the workplace. Part of that research is interviewing men and women who have gone through this.

There are several demographics I’m interested in:



Medical personnel (all levels, but not those who work in a doctor’s office)


Performing artists (musicians, actors, dancers, singers)



Senior citizens

The criteria for all demographics are the same:

They must have experienced the death of a friend they worked with (except senior citizens – for that group it’s a friend they lived with in a retirement community).

They need not be currently working at that job.

They must be willing to discuss that experience.

Interviews will be conducted from January-March, 2013 (by phone, email, snail mail, in person)

If you fit the criteria, or know someone who does, I’d love to hear from you! Please email me at If you’re in Chicago, St. Louis, New York, or Los Angeles, I’ll be doing face-to-face interviews as much as possible.

Thanks in advance for your help!




Tuesday, December 18, 2012

Where Do You Go to Grieve Your Friends?

Student at fork in the road
I was raised Catholic, though I probably don’t fit the definition of what some people consider a “good” Catholic. But I assume God and I will discuss the finer points of that topic at a later date.

So I was brought up going to funeral high masses, listening to “Dies Irae”, coughing from aggressive use of incense. Before the funeral was a wake at a funeral parlor, sometimes lasting several days. Flowers sent by friends and family were delivered as people gathered before the dead person in their coffin.  Mass cards were left, and everyone signed the condolence book so that thank you’s could be sent in the weeks ahead. There was a little room where family could escape for coffee and food. After the funeral, the family often hosted a gathering, in their home or at a restaurant, for extended family and close friends.

Those were our rituals. Every culture has their own. But there is comfort in those rituals. A large part of that comfort is physical: you have a place to go in the immediate aftermath of someone’s death.

There has been much talk since the murders in Connecticut last week about community, and that’s good. There is no more appropriate time for people to come together than after a tragedy.

But though we can all connect online, watching live broadcasts and following tweets, those are not a substitute for being in a particular place.

Memorial services – sometimes months after a death – are now commonplace. The kind of wake I’m used to is not the norm any more.

The beauty of those kinds of traditions was in the ability to gather together right away. We knew where to go to grieve, to support, to remember.

But now we improvise. We leave tons of flowers and candles in front of Buckingham Palace after the death of Princess Diana. We go to a bar with friends. We create shrines on the roadside after traffic accidents.

The events of last Friday have convinced me more and more that often when people say “I don’t know what to do” after a death, what they really mean is “I don’t know where to go.”

I talked to first responders on the 10th anniversary of 9/11 who traveled from as far away as Australia to attend the ceremonies. Why? “I needed to be here,” they all explained.

The need to share your grief with others in a place that has meaning is stronger than we think. That’s why Facebook tribute pages have become so popular: people who could not attend a funeral or memorial service can share their grief in a particular place (albeit online) with others who also grieve.

Does it help your grief to have a place to go, a place to share your grief for your friend with others?

Does the lack of such a place make it harder to grieve?

I’ll be interested to hear your experiences.



Friday, December 14, 2012

Grieving for Friends You Never Met

Jessica Hill, AP
I had a blog post ready for today, but it will have to wait until next week.

I turned on my computer to see “Breaking News” screamed in big red letters across the screen: shooting at a Connecticut elementary school.

At first, I didn’t realize the magnitude of the story: was it a domestic dispute? An angry student? A disgruntled former employee?

But then I read a little more, and the tragedy in Newtown, Connecticut revealed itself to be more horrible than anyone could have anticipated.

I can’t watch the news about this on TV. I check on Facebook and Twitter, and now and then on news websites, but that’s the extent of what I’m capable of doing right now.

My daughter in college texted me: did something happen in Connecticut? We talked on the phone about it, but only a little, preferring to change the subject as soon as we could.

Social media is exploding with news and comments, and already some people feel the need to reaffirm their support of gun ownership. Talk about an inappropriate moment.

I’m not going to get into the gun control debate, other than to say I don’t believe mass shootings of kindergarten students are what the Founding Fathers had in mind with the 2nd Amendment.
What I am going to say is that right now, millions are grieving for people they’ve never met – the adults and children who were murdered today.

They’re grieving for the victims’ families and friends whose lives have been changed forever.

And they’re grieving for their country. Because a tragedy like this reflects on us all.

Let’s put away the posters and rhetoric and join together to find a way to avoid these kinds of senseless tragedies.

This is supposed to be a season of peace and love.

Let’s make it so.


Thursday, December 6, 2012

The Luxury of Grief

“You have to get over it.”

“It’s time to move on.”

“They wouldn’t want you to be sad.”

I’d like to call for an immediate, international ban on all of the above.

Grieving your friends is hard enough. A lot of people – even those closest to you – just don’t get the depths of your sadness. While they may cut you some slack if you lost a family member, the death of a friend doesn’t usually inspire a lot of compassion.

You may even agree with those pious words of “support”. You may convince yourself that you’re too busy to grieve, especially during the holidays when our busy lives get even busier.

Denying yourself the time to grieve is an invitation for complications down the road. You pat yourself on the back for moving on, for getting over it, for putting on a happy face when others are around.

I think of this kind of denial as an unnecessary challenge to God, who eventually will say, “You think you’re done grieving? Trust me: you haven’t begun to grieve.”

When you avoid or minimize your grief, you’re leaving yourself open for a return visit, when you least expect it.

Maybe you run into a mutual friend, and begin reminiscing about the friend you both lost. Maybe you’re flipping channels and come upon a movie or TV show that your friend loved. Maybe you’re having a bad day and want to pick up the phone to call them, but you can’t.

I deliberately used the word ‘luxury’ to describe grief because that’s how many people think of it: as something we can’t afford to indulge in. But it’s not.

If grief is the price you pay for love, and you loved your friend, then why wouldn’t you grieve? You let them into your life, you loved them, loved your friendship. After all, you are who you are today because of them.

Make a promise to yourself. During the holidays – and all year round – give yourself the luxury of grieving your friend. Honor their absence as you honored their presence. And don’t listen to everyone else. Someday they’ll be in your shoes, and understand all too well.


Tuesday, December 4, 2012

Thoughts on World AIDS Day

AIDS Memorial Quilt
National Mall, Washington DC
In all honesty, it was a week of AIDS.

Early in the week I completed the first draft of the second book in the Friend Grief series: Friend Grief and AIDS: Thirty Years of Burying Our Friends. As the week progressed, that high was sustained by anticipation. I was going to a screening of United in Anger and then to a memorial service, organized by a friend and led by my former pastor.

But in between the book draft and Saturday, that anticipation became tempered with frustration. The first World AIDS Day was in 1988: why are we still commemorating it? Why do we still need to commemorate it?

By Friday, my frustration had hardened into anger. I wanted to scream at news people who talked about “celebrating” World AIDS Day. “Celebrating”? What exactly are we celebrating – 34 million people infected and another 30 million already dead? Little children in Africa who are raped because superstition holds that having sex with a virgin will cure AIDS?  Young gay men getting infected on purpose, to access social services and the sympathy of their peers?

On World AIDS Day, I sat through United in Anger, an excellent new documentary about ACT UP, still angry.

At the memorial service that evening, I calmed down a bit. The opening hymn was one that always makes me cry, so perhaps that was all I needed to get rid of some of that anger. I listened to testimony from people living with AIDS, men who, years ago, would have never willingly offered their full names.

What I ultimately took away from the service – and the documentary – was that AIDS is one of those issues, one of those moments in time. It brought out the worst in a lot of people, and still does. It seems inconceivable that it could bring out the best in people, too.

The professor who led the Q&A after the film looked remarkably unremarkable. But this gentle man had been a member of ACT UP Chicago, demonstrating and sitting-in to demand better treatment for his dying friends.

The priest who led the memorial service admitted his homophobia and fear when the epidemic began: attitudes that changed when he witnessed the bravery of friends taking care of their friends.

And that is, finally, what I took away from the day: the bravery of friends. Abandoned by families, many people with AIDS had/have no one left to turn to.

Their friends fought for them, cared for them, buried them. And some have been doing it for decades.

Perhaps what we really need is a World Friends Day.



To learn more about United in Anger, click here.


Friday, November 30, 2012

World AIDS Day 2012

Despite the fact that my production schedule has been blown to hell, this week I managed to finish the first draft of the second book in the Friend Grief series: Friend Grief and AIDS: Thirty Years of Burying Our Friends.

It’s not the book I thought it was going to be. Whether it is any good at what it is remains to be seen.

But what came up time and again – as I re-read classic books by Randy Shilts and Larry Kramer and watched new documentaries on the history of ACT UP – was the frustration and anger that still exists today. And it exists because AIDS still exists.

Even the victories have unintended consequences. The AIDS cocktail of drugs that has saved so many? Can you afford it? Can you tolerate the combination of drugs? Can you even get it? If you’re one of the 69% of those living with HIV/AIDS, that means you live in sub-Saharan Africa, so the answer to these questions is ‘probably not’.

Do you live in a country that considers AIDS a health crisis? Despite the focus on it here in the US, there has been – due to medical advances – a change in thinking that is both heartening and disturbing. AIDS is now considered a chronic disease – like diabetes: something that is treatable, if not curable. Getting infected is “no big deal”. People even get infected deliberately.

But it is a big deal. Thirty-one years into the epidemic 30 million people have died, and another 30 million live with AIDS. In the US, 1.2 million people live with HIV/AIDS…but 230,000 don’t know it because they haven’t been tested.

We’ve come a long way, but we’re not done yet. People are infected every day – sometimes deliberately, sometimes unknowingly. At the beginning of the fourth decade of the epidemic, superstitions still abound, including one that insists that sex with a virgin will cure you of AIDS.

If you want to know more about AIDS – both here and around the world – here are some organizations that will help.

And take a minute tomorrow, December 1 – World AIDS Day – to remember those who died and those who have fought for 31 years to wipe AIDS off the planet.


Thursday, November 29, 2012

George Harrison's Friends

If you’ve read this blog for any length of time you already know I’m a huge Beatles fan. What I didn’t expect was that they’d actually give me something to write about here, something important about grieving your friends.

Today is the eleventh anniversary of the death of George Harrison. It’s also the tenth anniversary of The Concert for George, a superstar musical event produced by his friends in his memory. You can watch it all day today on the George Harrison YouTube channel.

What struck me the most about that concert film – and the emotional documentary Living in the Material World – was the willingness of his friends to talk about their love for George.

In the former, Eric Clapton freely admits that putting the concert together was a way to work through his grief – a way for most everyone involved to work through their grief.

In the latter, the impact of George’s death was felt deeply by all who spoke, but perhaps most surprisingly by former race car driver Jackie Stewart. He talks about how he’d lost a lot of friends in his race career – watched many of them die – but no death had affected him, even ten years later, like George’s.

So, here are some links for you. Enjoy the music (I’ve included the music video of one of my favorite George Harrison solo efforts, “Got My Mind Set On You”). Watch the concert and look at this scene from the documentary, where Ringo recounts his last minutes with George. When it’s over, you’ll probably have the same two reactions I had:

What a good friend he was.

I hope my friends think the same of me.








Friday, November 23, 2012

Getting Through The Holidays After Your Friend Dies

I hated the holidays – Thanksgiving through Valentine’s Day – when I was single and not dating. I felt like it was the annual reminder from the universe that I was alone. Everyone had someone during the holidays except me. At least that’s what it felt like.

It’s hard to lose a friend, whether they were our best friend, a co-worker, a neighbor, the girl whose locker was next to ours. The holidays are hard after you’ve lost a family member. But what about for those of us who have lost a friend?

I’ve been reading articles about coping with grief during this festive time of year. Without exception, they focused on grieving a family member. Nothing wrong with that. I’ve had a couple of bad Christmases myself. The one after my uncle died in a car accident earlier in December was horrible. We went through the motions, but it wasn’t the same.

So it is when our friends die. Maybe there were special things the two of you did together during the holidays: Thanksgiving Day football games, shopping, office parties, afternoon tea, organizing mini-class reunions, baking cookies. When they’re gone, those activities lose a lot of the happiness they brought you.

You may find yourself shopping and thinking “oh, they’d love that,” only to realize that there’s no need to buy it. You may find yourself avoiding the holiday rituals that had been a part of your friendship, making excuses that no one – including you – believes. You may find yourself, like me, just wishing you could hibernate during the holidays.

Taking care of yourself is paramount. Too many of us who grieve our friends are encouraged, coaxed and otherwise told in no uncertain terms that we need to “move on”. And all that does is create resentment and stall our healing. So – always with the disclaimer that I’m not a therapist – here are some things to consider while you grieve a friend during the holidays:

1 – Get some sleep. No, seriously, get some sleep. No one gets medals for being sleep-deprived, and when you’re grieving, your body is under additional stress. Do whatever you have to do to get more rest – naps, earlier bedtime, meditation. A few minutes a day can make a big difference.

2 – Don’t over-indulge. We hear it all the time during the holidays: don’t overeat or drink too much. But again, when we’re grieving, we’re often less self-aware of what we’re doing. It can be easy to eat and drink more than we should. Neither one will help you get through the holidays with any semblance of peace of mind.

3 – Find a buddy for your journey. It might be a mutual friend of the one who died. It might be a therapist. It might be group therapy. Someone you can talk to about what you’re going through, someone who understands and won’t pressure you to go back to “normal” as soon as possible. Talk to your dog. Write in a journal. But find a way to express your grief.

4 – Revisit or create new rituals. Maybe doing the things you did with that friend give you comfort; make them feel close to you. If they don’t, do something different, maybe something your friend was not interested in doing.

5 – Honor your friend’s memory during the holidays. Make a donation to a cause they supported. Gives gifts to needy families or deployed soldiers in their memory.

None of these things will change the reality: your friend died and you miss them. But they may help you get through a challenging time of year with your sanity intact.

In the end, Scrooge talked about “keeping Christmas every day.” May you find a way to keep your friend’s memory every day.

(And if you have any suggestions to add to the list, feel free to share.)


Thursday, November 15, 2012

Setting Up A Facebook Tribute Page for Your Friend

Families have an advantage when someone dies. It sounds weird, doesn’t it? But it’s true.

They have legal rights. Society views them as the primary mourners. Most people will take their cues from the family, as far as appropriate ways to mourn.

But what about you? What about the friends?

Social media – Facebook, Twitter, Google+, LinkedIn – are part of our lives. Some people are more invested in it than others, for social and/or business reasons. But it affects most of us in some way.

So it stands to reason that the subject of expressing our grief online would be a topic of discussion and controversy: Should a death be announced online? That debate has been brewing for a while and won’t go away anytime soon.

The issue is a touchy one, especially for those unsure about how to use social media in a respectful way.

Facebook and Twitter in particular are great for spreading information quickly. I’ve learned about friends who were in accidents, had surgery, and yes, who died. And while seeing the news on my computer screen was jarring and upsetting, it would have been jarring and upsetting had I found out by phone, mass email, or in person.

So I was delighted to read an article that actually gives thoughtful guidelines about setting up a Facebook tribute page. That’s a page devoted to a person who has died – often a friend – giving people a chance to express their feelings in a safe group setting.

As Steve Jacobsen, Executive Director of Hospice of Santa Barbara acknowledges:

“These online tributes can be powerful tools for bereaved people to communicate with each other and to act as a bridge with others.”

But how to do that in a way that respects your friend, as well as their friends and family? Among the “do’s and don’ts”, Jacobson’s organization offers these tips:

Post a link to your loved one’s memorial page on your page. Sometimes it can take a while before news reaches people’s ears, so posting the link to their memorial wall will let you sensitively announce their death and encourage people to express their grief. (A terrific solution to the shock of seeing the announcement pop up in your news feed)

If the deceased had a friend or relative you did not get along with, do not make rude or aggressive comments towards that person on your loved one’s Facebook wall. (Seems obvious, but in our grief, we can say things we shouldn’t)

There is definitely a generational issue here, as far as deeming this appropriate. But online grieving – including Facebook memorial pages – is not going away anytime soon.

Where do you stand?


You can read the entire article, with more thoughtful suggestions, in the Santa Barbara Independent.

And here are a wide range of opinions on online grieving from USA Today, Mourning Becomes Electric.

Wednesday, November 7, 2012

Should You Tweet a Friend’s Funeral?

In the interest of full disclosure, I have texted from a funeral. I sat by myself in the last pew, at least five rows away from anyone else. I was texting my girlfriend two states away who couldn’t attend. I figured if I didn’t disturb anyone and God didn’t strike me dead, my good intentions were sufficient to justify my behavior.

But I have to admit that when I read Matthew Ingram’s article What I Learned While Live-Tweeting a Friend’s Funeral on that it gave me pause.

Ingram felt that live-tweeting was a tribute to his friend, a long-time user of Twitter who was interested in social technology. He also felt it fit his friend’s sense of humor, and the family agreed. And the funeral was already being live-streamed online.

There have been instances before of reporters texting and tweeting from funerals they’re covering. Is that worse than filming? Is tweeting different than taking notes by hand?

As you might imagine, the comments on Gigaom were passionate on both sides of the appropriateness of Ingram’s actions. “Disrespectful” and “Brilliant” were typical responses, and everything in between.

What do you think?

Is nothing sacred? Are we truly obsessed with sharing online?

Or is Twitter an opportunity for friends and family around the world to connect to the final tribute for someone they love?



Monday, October 29, 2012

Big Changes for Friend Grief

UPDATE - 11/1/12


If I’ve seemed quiet lately, there’s a reason. I’ve been attending a conference and doing research, which took a lot of time. But November will be a big month for Friend Grief.

On November 2, the first in a series of small books on the topic of grieving your friends will be released. Friend Grief and Anger: When Your Friend Dies and No One Gives a Damn will expand on a few earlier blog posts on anger. It will be available on all e-book platforms, and the links will be posted here as soon as they’re available. For my followers in the UK, Canada and Australia, you’ll be able to get it right away, too. If you’re keeping score, November 2 is Day of the Dead.

The print version (about 60 pages) is targeted for release on November 19, which was Delle Chatman’s birthday. I felt it was appropriate, since I wouldn’t be doing any of this without her. I’ll be doing a book signing/launch at the coffee house in Chicago that was our hangout.

My plan is to release the second book, on grieving friends who died of AIDS, on Dec. 1, with subsequent titles in the series released every other month through 2013.

As soon as they’re confirmed, I’ll list additional information – reviews, book signings, etc. – here on this blog. New resources – on and offline – will also be added in the next few weeks.

And after the first of the year, there will be a redesign of the whole blog/website, but let’s get through the holidays first. J

Your feedback is always welcome and appreciated. If you have an opinion about something I wrote, please comment. If you’d like to share a story about a friend of yours who died, email me. If you know of someone who would benefit from what we discuss here, share this link. As always, remember that I’m not a medical professional, and this blog is never intended to be a substitute for therapeutic help.

One of the terrific aspects of this new career of mine is that I believe I have a deeper appreciation of my friends. I find myself reaching out, sometimes self-consciously, in ways that often surprise me.

For example: I don’t have a picture of myself with Delle, just the two of us. I have pictures where we’re with a group, but no picture of just us. We were always the ones taking pictures and never thought to include ourselves. I regret that a lot.

Last Friday I asked the wife of a friend of mine to take my picture with him. I have lots of pictures of him, but again, none of just the two of us. I was a little embarrassed to ask, but I got over it.

I don’t know if anyone can live their life without regretting things they didn’t do. But I’m trying more and more to risk that momentary embarrassment: to pose for that picture, to make that phone call, to say ‘I love you’ while I can.

Try it. You’ll be glad you did.



Friday, October 19, 2012

A Look at “Love is the Cure”

From the 12 Steps of Alcoholics Anonymous:

8. Made a list of all persons we had harmed, and became willing to make amends to them all.

9. Made direct amends to such people wherever possible, except when to do so would injure them or others.

If you or someone close to you has been in a 12-step program, you’re familiar with steps 8 and 9.

Singer/songwriter/philanthropist Elton John’s new book, Love is the Cure, documents his climb out of addiction and how he continues to make amends, most importantly through his AIDS charity.

If you’re a fan of his, like me, you probably wonder how he managed to come out of the 80’s alive and healthy. So does he.

Honestly, the book was a surprise to me. I expected it to be mostly about the important work of the Elton John AIDS Foundation, and how it came to be. It is, but it’s much more. It’s about him working those steps every day.

Elton John cruised (pardon the pun) through the 80’s and into the 90’s, a privileged gay man whose addictions were hurtling him towards an early, inevitable demise. But he came out of it HIV-negative. How the hell did that happen? Luck, he’ll tell you, pure luck. By all rights, he should’ve died a long time ago.

But he didn’t. Deep in the fog of those addictions he knew he was killing himself. It wasn’t until he heard about the horrific treatment of Ryan White, the Kokomo, Indiana teenager who’d contracted AIDS from tainted blood products to treat his hemophilia, that the change began. It was a slow change, though; even White’s death wasn’t enough. People who loved him were scared.

It wasn’t until his lover checked himself into a treatment center, and Elton raged for a while, that he himself faced reality and got the help he needed, too.

What followed was survivor guilt. He knew writing checks to AIDS charities wasn’t enough. He knew he’d spent over a decade watching his friends die (there’s a plaque for each one hanging in the chapel he built at his home): watching, but not helping, not using his celebrity to help others.

And so EJAF was born, and it is the greatest passion of his life. He has surrounded himself with the best and the brightest in the international fight against AIDS. He’s not just a name on the letterhead; he is involved in a hands-on way.

But it is that first experience, the sweet friendship between Elton John and Ryan White, that drives him most of all. His life has changed completely, and he knows exactly who to thank:

“I miss my friends Elizabeth (Taylor), (Princess) Diana and Robert (Key) more than you can imagine, and every single day. I think about them constantly, and EJAF would not be here but for their herculean efforts, inspiration and support. With their help – and David’s (his husband) – and thanks to John, our small but dedicated staff , and our wonderful board of directors – within only a few years, we were becoming a major player in the fight to rid the world of AIDS. There was much work to be done, huge mountains to climb. But wherever he was, I hoped with all my heart that another dear and departed friend, Ryan, was proud. Indeed, I felt a sense of pride in myself as well. I was sober. I was giving back. I was alive. For the first time in years, I was really, truly alive.”

And we’re glad he is.



For information on how you can support the Elton John AIDS Foundation, click here.

Monday, October 15, 2012

Death Café – There’s a First Time for Everything

Last Tuesday evening, I co-hosted the first Death Café in Chicago. A phenomenon that began in Switzerland and spread to London, a Death Café provides a safe, non-judgmental and non-therapeutic setting for people to come together and talk about death and grief.
Our group was all men (except me, lurking on the edge). Although the seven men did talk about friends – and even animals – there happened to be an unusual situation: one man’s mother was actively dying. As befitting a supportive atmosphere, most of the conversations had to do with family dynamics and relationships.
The feelings associated with grief are common, no matter the relationship to the person who died: sadness, guilt, anger, regret, gratitude. All of them were on display Tuesday as these men came together for two hours.

The one emotion that may have surprised them all was relief. As I’ve written before, men are frequently locked into a cultural stereotype after the death of a friend or family member. They’re expected to be the ‘strong, silent type’. They’re looked to by others as leaders, in control of their emotions.
More than one tear was shed, and more than one man was surprised by how much he felt comfortable sharing, even with strangers.
As it turned out, the timing was a blessing: the one man’s mother died very early Thursday morning.
We all – co-hosts and participants – learned a lot. Plans are already being made for a second Death Café, this one for men and women. It’ll be interesting to see if and how that changes the dynamic.

One thing’s for sure: this is a conversation that will continue.

Friday, October 5, 2012

Chicago’s First Death Café

Sounds weird, doesn’t it?

Death Café

I guess the first question is, ‘what and where is it?’

Well in this case, it’s in Chicago next week.

A Death Café is an informal, non-therapeutic gathering of people who want to discuss their experiences grieving. Death, as we know, is a subject that can put a damper on most conversations. But here, it is the conversation.

Therapy is great, whether individual or group. But that’s not what this is. Many people just need a chance to talk about what they’re going through: without judgment or diagnosis. And as it turns out, a lot of those people are men.

Like it or not, men are still expected to be the “strong” ones when someone close to them dies. They’re expected to take care of others, get things done, hold it all in. But what I’ve found in my interviews is that men are not just willing but eager to talk about losing their friends.

So on Tuesday, October 9, the first Death Café in Chicago will be held for men grieving their friends. We hope this is the first of many (and not just for men), so that others have the opportunity to finally talk about a loss that is sometimes difficult to explain.

When people hear it’s called “Death Café”, there’s also a second question: ‘what’s on the menu?’ Well, besides conversation, we’ll have coffee, tea, and goodies.

Space is limited, so go to Events for more information. We look forward to seeing you on Tuesday.




To learn more about hosting a Death Café in your community, click here.



Tuesday, October 2, 2012

"How to Survive a Plague"

Art by Keith Haring
There’s a moment near the end of How to Survive a Plague, the powerful new documentary about the AIDS epidemic, and specifically, the role of ACT-UP in changing the way drugs are tested and made available in the US.

There’s a contentious meeting of ACT-UP New York going on, and playwright/activist Larry Kramer is shown, his face tightening in frustration. Finally he explodes: “Plague! We’re living in a plague! Listen to yourselves!”

Living through the beginnings of the AIDS epidemic was like living in a plague, or in a war, because it was both: a health crisis that became a desperate war to save lives.

The truly remarkable thing to me about this film is that it exists at all. Much of it is archival footage from 1986-1995, shot by members of ACT-UP.

So you actually see the demonstrators lying prostrate in the center aisle of St. Patrick’s Cathedral in New York, protesting the cardinal’s condemnation of the use of condoms to prevent the spread of AIDS.

You see the unfurling of the Names Project AIDS Memorial Quilt, covering the National Mall in Washington for the first time.

You see speakers at the International AIDS Conferences in San Francisco and Montreal, as well as those at NIH meetings, interrupted by chanting demonstrators.

You see executives at drug companies confronted by dying men who demand to know why their clinical trials and testing  - for drugs sold over the counter in other countries - drag on for years.

Act up.

Fight back.

Fight AIDS.

And perhaps most remarkably, you see videos of ACT-UP meetings, where members – some still alive, many long dead – debate and strategize, self-educate and threaten, laugh and cry and scream as they create a new model for fighting an entrenched bureaucracy. The willingness to show this footage – warts and all – is brave, fascinating and instructive. “They knew as much about this as we do,” admitted more than one medical professional.

We forget now that there was a time when people suffering from diseases did not show up by the hundreds at drug companies or government offices demanding funding and new treatments.

We forget that people with AIDS were left to die in emergency rooms. Afterwards, their bodies were stuffed in big, black garbage bags, and left unclaimed by disapproving families.

We forget that for every right we enjoy, there is a battle that went before, a battle to earn that right: a fight, at times, to the death.

The next big crisis may not be a disease or a virus. It may be environmental. It may be a war. But the lessons in this film apply to all those situations and more. In demanding fairness and hope for those you love, you can save millions.

It’s possible that, watching this film, you will disapprove of ACT-UP’s tactics. You will believe that there is a more conventional, less confrontational way to get your point across.

But until – and unless – you fight for your life or the life of someone you love, only to face indifference, discrimination and hatred, you don’t really know what you’d do to save a life.

How to Survive a Plague shows us all how to do just that.

Thursday, September 27, 2012

Friend Grief as Pinball Game

Most people are familiar with Elisabeth Kubler-Ross’s famous stages of grief: denial, anger, bargaining, depression and acceptance. She herself acknowledged that those who are dying (the original study members) and their survivors may not follow these stages in exact order.

But as time has passed since her 1969 book On Death and Dying, society has adopted these five stages as gospel. They’ve been co-opted to explain the feelings of fans after their favorite sports team is eliminated from post-season play, or a TV show is cancelled. It’s only recently that the medical community has questioned those stages.

From my own experience, I’d say they’re pretty accurate. But grief – mine included - is rarely neat and linear.

Baylor University’s press release this week explains a refreshing challenge to that long-held definition of grief:

"For some, grieving is complete after the loss is accepted. But for others, such events as the anniversary of a death or a scene that jogs the memory can send them slamming into grief again, according to a case study by Margaret Baier, Ph.D., an assistant professor in the family and consumer sciences department at Baylor and a marriage and family therapist, and Ruth Buechsel, a psychologist at Brooke in San Antonio. Their study appears in the September Mental Health Practice nursing journal."

Anyone who has grieved a friend or family member knows about being blindsided. Some things – like anniversaries – can be anticipated. You expect to feel bad that day. Other things cannot: the song that plays on the radio while you’re driving, the smell of bread baking, or the old photo that falls out of a book you’re reading. These things and many more can trigger an emotional reaction that takes you by surprise.

It would be a normal reaction to be upset by pinball machine grieving. After all, you were told about the five stages, and you went through them. You’re done, right?

“You don’t get over it, you just get used to it,” a friend’s recently widowed mother said after my father died. She was right. Time passes and you get used to your friend being gone. But then something happens, something completely unexpected, and you realize you’ll never get over it.

Six years after my friend Delle died, there are still times when the sight of a grey PT Cruiser (her car) will bring me down.

And maybe that’s the lesson from the Baylor/Brooke Army Medical Center study.

You get used to them being gone, but at any moment, you can be reminded of the love you shared.

Why would that be a surprise?



Read the entire press release at: Stages of Grief Likened to Pinball Machine