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.

Elton John AIDS Foundation

US Government AIDS website

Joint UN Programme on HIV/AIDS

Centers for Disease Control

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.

 

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.

 

 

 

 

 

 

 

 

 

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.)

 

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.

Should You Tweet a Friend’s Funeral?

Twitter

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 Gigaom.com 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?

 

 

Big Changes for Friend Grief

UPDATE - 11/1/12

HURRICANE SANDY-RELATED DELAY FOR E-BOOK LAUNCH. DON'T WORRY - IT'S COMING!




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.

 

 

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.