Thursday, July 25, 2013

What Could Be Worse Than A Friend’s Death?


Of course we survive. We wouldn’t be here to grieve our friends if we weren’t alive. Sometimes the depth of that grief takes us by surprise, which is one of the reasons why I started this blog and my books.

But when I started writing about grieving the death of a friend, I didn’t expect to find that survivor guilt plays such a huge role in the lives of many people.

While researching the second book in my series, Friend Grief and AIDS: Thirty Years of Burying Our Friends, I learned that one of the biggest issues for long-time HIV+ men is survivor guilt. Like me, they lost a lot of friends: dozens, even hundreds. But because of luck or timing or a miracle, they’re still here today, some of them HIV+ since the 80s. A friend of mine has lost two partners, but he’s still alive and well. Only now are studies being conducted to assess the long-term effects - both physical and emotional – of being HIV+ for decades.

In my next book, Friend Grief and 9/11: The Forgotten Mourners, survivor guilt shows up not only in those who escaped the towers that day, but friends who were hundreds of miles away, on the phone, begging their friends to run up to the roof, or find a way out through the flames. Dozens of first responders and volunteers committed suicide in the first few years following 9/11; no one can give an accurate count.

And I learned very quickly, in preparing for the fourth book, Friend Grief and Community: Band of Friends, that survivor guilt is a contributing factor to the alarming rise in suicides within the military community (including veterans). It is rightly being called an epidemic, when more active duty military commit suicide than die in combat.

In all those cases – and in more mundane ones every day – people struggle to understand why their friend is gone and they’re still here. They are embarrassed, confused and likely to shut out even the most well-meaning family, friends and counselors. They seek the forgiveness they cannot give themselves, for the crime of being alive. Even those who have earned the Medal of Honor speak mostly of the buddies they could not save.

Losing a friend is hard enough, no matter the circumstances. To feel a crushing despair that can only be eased by committing suicide…that’s a double tragedy.

I’ll share more in the coming weeks about people who grieved the death of a friend. Some of them survived. Some did not. But all will touch you.


Sunday, July 21, 2013

Fun at a Death Café? Sure!

On July 15, Dan Bulf and I held our second Chicago-area Death Café. We’d hoped for 20 people, but we were stunned when our lovely room at Curt’s Café in Evanston was filled to overflowing with 40. The poor air conditioning couldn’t keep up. Thank God for iced tea!

There were many there whose work involves confronting death: hospital chaplains, social workers, grief counselors, hospice volunteers. There were men and women of various ethnic groups and a wide age range: 20’s to a self-professed 87 years old. But that didn’t mean they had talked about their own, personal feelings about death.

We broke into four groups for wide-ranging conversations about our attitudes towards death and dying, particularly our own death. I was not surprised to hear quite a few identify the death of someone close to them as a catalyst. Sometimes that inspired them to devote their career to helping others have a good death. Sometimes it caused them to take a hard look at their own lives, including their legacy. There were those who talked about death and dying issues all day, but had a hard time when asked how they felt about their own.

That’s what a Death Café is all about: providing a safe, open, respectful environment for talking about death and dying. You’re with a group of (probable) strangers talking about a subject that’s often impossible to bring up with family and friends. It’s a time to share your feelings and learn that you are not alone in struggling with how to live a life that makes a difference. Because, let’s face it: part of having a good death is realizing that your life mattered.

The evaluations were terrific. When asked to give three words to describe their experience, the top responses were: interesting, comfortable, open, enlightening (yes, I know, that’s four – there was a tie). Typical comments included:

“It reinforced how important open discussions are.”

“I am more at ease talking about my own death.”

“Moving to hear others’ perspectives on death.”

And yes, there was laughter, especially when we talked about what makes up a fun funeral (a good topic for a future blog post). Many there – and since – have asked when we’re doing another one.

We are planning our next Death Café for Monday August 19, also in Evanston. Details will go up on the “Events” page here as soon as they’re finalized. If you already know you can’t attend or want to be on our email list for future Chicago-area Death Cafes, click here.

To those who joined us, thank you. You endured a steamy evening to discuss a difficult subject with courage and grace.

If you want to learn more about the Death Café movement, including how to hold one of your own, check out Jon Underwood’s Death Café website.

Friday, July 12, 2013

Watching Nelson Mandela Die

There are few recognizable names that evoke as much respect as Nelson Mandela. His dignity and sense of purpose in changing his South Africa have inspired millions around the world.

It pains me now to watch the news, not of his failing health, but of his very public, forced lingering. Now on a ventilator, he cannot speak, but also cannot die.

No one wants to think about death. It’s probably the least popular topic of conversation imaginable. But talk about it we must, or risk complications beyond our imagination.

Many people never put their wishes in writing. According to an online legal service, Rocket Lawyer, 71% of adults under 34 do not have a will; 41% of Baby Boomers do not. Another legal service, FindLaw, reported that only 36% of people have a living will. (And yes, I have both.)

A lot of people don’t see the need to go the expense of a lawyer (though that’s not always necessary). A lot of people don’t think they have enough assets to make it worthwhile. Others will say “my family knows what I want”.

But a lot of us have heard horror stories of families fighting over the things left behind. Not all families will honor a person’s wishes when it comes to their medical care. Someone who did not want extraordinary measures taken could be at the mercy of a family member who believes in trying every intervention possible.

So, no, it’s not something we want to talk about. It’s unpleasant. It’s awkward. But you would be doing a kindness to those left behind. You will have taken the responsibility for yourself, instead of leaving it to someone who must not only deal with their grief, but now make financial and medical decisions without your direction.

I purposely did not quote the article below. I want you to read it. Think about whether this is the kind of death Nelson Mandela imagined for himself. Then imagine it’s you.



Thursday, July 4, 2013

AIDS: Mad as Hell. Again.

(This is a little long, so bear with me)

I planned to walk in Chicago’s Gay Pride parade last Sunday. But by the time I got near the staging area to join my group, the pain in my hip was growing worse by the minute. I knew I couldn’t walk, and even riding in the truck would be more than uncomfortable; forget about standing for a couple hours. I bailed just before it started. But before I did, I got mad.

It wasn’t my first Pride parade. I rode on the Chicago House float in 1990, when I was on staff there and the AIDS epidemic was going full force. I’d attended the parade, lived on the route, got caught in the traffic surrounding it many times. It’s always a festive event, one that has grown larger and more mainstream over the years (though the media continue to focus on the most outrageous drag queens in their post-parade coverage).

Politicians – who once avoided the gay community like (pardon the pun) the plague – now marched gladly. Hell, some of them are openly gay. The police superintendent was there, along with a contingent of gay/lesbian officers. Elementary school students, businesses, and church groups marched alongside the requisite gay bars and marriage equality groups: 204 entries. A million spectators.

Progress, right?

Let’s just say it was a glass half full, in my mind.

I fully expected it to be more festive, coming just days after the Supreme Court decisions kicking back Prop 8 to California and repealing the Defense of Marriage Act (DOMA). I was surprised by the rulings and thrilled for my gay and lesbian friends and family members.


In those 204 entries, AIDS was all but forgotten. There was a float for the AIDS bike ride fundraiser, and another for a training program to prepare for it. Both apparently (I didn’t stay long enough to see it) distributed free condoms. (That’s actually a great perk of attending a Gay Pride parade: you can stock up on free condoms.)

The third entry was from a coalition called CommUNITY. It’s made up of several AIDS-service-related organizations: AIDS Foundation of Chicago, AIDS Legal Council of Chicago, Test Positive Aware Network, Chicago House, Howard Brown Health Center and The Center on Halsted. Most of them were founded in the 1980s. They’ve been around a long time and do good work.

Their float consisted of a display of the names/logos of each group. There was no mention of the collective mission of CommUNITY (here is their blog article about Pride). There was no mention of AIDS or the critical work they do. The people on the float and those walking with them threw Mardi Gras beads to the crowd.

The next day, when I was marginally calmer, I sent a Facebook message to AFC to ask why they had missed a great opportunity for awareness. Their response, that I posed “really good questions”, included the following explanation for why their main float didn’t include condoms: “we celebrated the colors and spirit of pride by distributing Mardi Gras beads.”

Well, excuse me all to hell. The parade was festive in 1990, too, but that didn’t stop AIDS organizations from publicizing their mission and services.

According to a report released in December 2012 by the Chicago Department of Public Health, HIV infection among gay men in Chicago was up 20 percent between 2008 and 2011: 35% for African-American gay men.

Some people put the blame solely on the gay community for the rise in infections. Let’s be honest: there are some who take unnecessary risks. Everyone does stupid things, no matter their gender or sexual orientation; that’s human nature. We become complacent, lazy. We believe we are the exception to the rule: I believe it’s called ‘denial’. It’s not limited to gay men.

But I also think there’s more than enough blame to spread around. When the media ignore rising infection rates to focus on dubious “cures”; when the medical establishment promotes the fallacy that living with HIV/AIDS is no big deal because it’s now just a ‘chronic’ disease; when funding is cut on the local, state and national levels; when AIDS service organizations ignore an opportunity to spread the word, that’s worse than complacency: that’s a sin. Maybe a crime.

I suppose there’s an argument to be made that a Pride parade is not the appropriate place to focus on condoms or PEP or PreP or anything depressing like rising HIV infections. Would Pride Fest have been better? Maybe, but AIDS was pretty invisible there, too except for the Trojan™ booth. And even though condoms are not the be-all, end-all of HIV prevention, it seems a waste to not take advantage of your target market, especially on an issue as serious as this.

Like many who were in the trenches at the beginning of the epidemic, I backed off in the 90’s. I was burned out. I kept up with the news about treatments and funding, but I kept my distance. I had other priorities, important ones. And I wanted to forget how many friends I lost. There was no good news in those days, only bad and worse. I assumed if I lost touch with someone it was because he was dead. That was true way too often.

Writing this blog and my books brought it all back. But what I’ve seen, particularly in the past year, has brought back something else: anger, fueled by a renewed and all too familiar sense of urgency.

Some say I should stay out of this discussion completely, that’s it not about me or people like me (straight). They said the same thing thirty years ago, too. Last time I checked, HIV was still an equal-opportunity virus, even though it hits gay men disproportionately in the US. You don’t have to be infected to be affected.

It has even been suggested that people like me are nostalgic for the “good old days”. Trust me, there was not much good about it. I wouldn’t wish that time on anyone. That’s why I find myself angry again: because the complacency I see now is reminiscent of those early days.

My friends at ACT UP NY are experiencing a second wave of activism, and frankly, I find it very contagious. I just hope it’s more contagious than HIV.

Tuesday, July 2, 2013

Evanston's First Death Cafe

Last fall, I co-hosted the first Death Café in Chicago.             


A Death Café is an informal, non-therapeutic opportunity for people to come together and discuss topics surrounding death and grief. The objective of this movement is "To increase awareness of death with a view to helping people make the most of their (finite) lives".

Begun in Switzerland, it spread to the UK and the US. Since 2011, over 1,000 people of all ages have attended a Death Café.

Our next Death Café will be held Monday, July 15 at Curt’s Café in Evanston, Illinois. It’s open to anyone with questions about death and grief, because no one has all the answers.

A Death Café offers you the opportunity to explore topics like:

•What do you consider a “good” death?

•What’s on your “before I die” list?

•How do you open a discussion about final wishes with your family?

•Whose death affected you the most and why?

•How do you convince others to respect your grief?

•Does faith help or complicate your attitude towards death?

•What would you like your legacy to be?

•Can you plan a fun funeral?


As you can see, there’s a lot to talk about – and these are only stepping stones to conversation. It’s not group therapy, but if you feel you would benefit from that, we can point you in the right direction. No one’s there to judge you or criticize you. We’re all in the same boat: just looking for answers.

It’s a relaxed, informal evening for you to enjoy tea, coffee and yummy desserts with a group of people who have questions they’d like to explore.

So, join us on July 15. Maybe we can find some answers to your questions. Chocolate helps.



Click here for more information about the Death Café movement.

Click here to register for Evanston’s first Death Café.