This Year – and Next - in Friend Grief

Those of you who have been following my blog for a while know that this has been quite a year. I think we all have the tendency to look back in late December, and cringe at the thought of all we’d planned to do but didn’t. I started to do that not long ago, but had to stop myself.

I was looking at only one part of my goals for this year, and in that category I definitely came up short: I self-published three books instead of six. Yeah, I know, I was a bit too optimistic. But what surprised me more than anything was what I accomplished that was not on my list. And I’ll tell you right now, most of these things were not anything I planned on:

1.      Published three books: Friend Grief and Anger: When Your Friend Dies and No One Gives A Damn; Friend Grief and AIDS: Thirty Years of Burying Our Friends; Friend Grief and 9/11: The Forgotten Mourners.

2.      Kept this blog going, as well as my Facebook, Twitter, Pinterest, Google+, LinkedIn and Goodreads accounts.

3.      Appeared on blogs such as DIY MFA, The Writer’s Guide to E-publishing, Choices, and Memoir Writer’s Journey.

4.      Became a Huffington Post blogger

5.      Did my first blog talk radio show (you can listen here.)

6.      Reviewed a dozen books for BroadwayWorld.com.

7.      Participated in Printers Row Book Fair and Chicago Book Expo, as well as the annual ADEC (Association for Death Education & Counseling) Conference book fair.

 

 

Along the way, I met some remarkable people. Some of them were people I interviewed for my books. Some of them were personal heroes, like the guys who started ACT UP in 1987.

And while a recurrence of symptoms from my concussion four years ago was not in my plans, the forced slow-down (which you probably noticed from my less-frequent posts for the past couple months) has given me a chance to catch my breath.

What can you expect from Friend Grief in 2014? More. A lot more:

1.      Three more books in the Friend Grief series. One is on the military; one on grieving friends you work with. The final book will be stories of people (like me) who made major life changes at the death of a friend.

2.      More posts here and on all the social media sites listed above.

3.      More book reviews here and on BroadwayWorld.com.

4.      More blog posts on Huffington Post.

5.      More terrific guest bloggers here talking about how they faced grieving a friend.

6.      More related content, like free lesson plans/discussion guides for all the Friend Grief books.

7.      A completely redesigned website.

 

I couldn't have done it all without you, my readers. Your comments - on and offline - have kept me going when I was most frustrated. You are in my thoughts every time I sit down at the computer. I appreciate your support more than you know.

And believe it or not, I already know what comes after those next three Friend Grief books.

But you’ll have to stick around to find out what else is coming. J

See you next year!

 

Friends, Calendars and Facebook

Happy birthday, Mare

I used to be very diligent about recording birthdays on my calendar. Every year, I’d get a new datebook and wall calendar, and the first thing I’d do is list birthdays of friends and family. Somehow I got out of that habit.

When I was addressing Christmas cards the other day, I paged through my address book (yes, I still have an actual address book). Every time I turned to a new page, I said to myself “he’s dead” or “she’s dead” or “they’re both dead”. I don’t know about you, but I can’t bring myself to get a new address book. That would mean not putting in names of friends and family who are no longer with us. Stupid, I know, but I guess I like the reminders when I open it up. This year, though, it seemed like there were a lot fewer people getting cards from me.

Facebook has been a great help, for those times I’ve forgotten about someone’s birthday. In “Events”, the birthdays of my Facebook friends are listed. I’m warned a week in advance and the day before. Sometimes I’m ahead of the game, sometimes I have an “oh, shit” reaction to having forgotten.

The day before, I get a reminder that the next day is someone’s birthday. That’s what happened yesterday, when Facebook reminded me that Christmas Eve is Mary Ellen’s birthday. I didn’t need reminding; it’s not the kind of date that anyone’s likely to forget. The problem is that Mary Ellen died in February.

Why did I get the reminder? Because her Facebook page is still here. No one had posted on it since right after her death, but this morning, the page is filling up with birthday wishes. The grief felt by those left behind is obviously still very raw, but the love is stronger.

The holidays are a time of reflection, no matter your religious persuasion. Take a few minutes this week and drag out that address book (or check it on your phone), scroll through your friends list on Facebook. Raise a glass to those who died recently or those who are long gone. And vow to keep their memory alive for another year.

Friends and/or Loved Ones

If you’re like me, you’ve been through your share of wakes and funerals. Although every culture has their own traditions, one is universal: the role of a friend.

Family members are typically at the center of the grief universe. They’re the ones notifying the world, making arrangements, dealing with logistics. But I think we can all agree on what most people expect friends of the deceased to do: support the family. Just support the family.

I saw a lot of exceptions to this when I worked in the AIDS community. People, whose families had rejected and abandoned them, even as they were dying, relied on their friends for everything. But generally speaking, if a friend of yours dies, you’re relegated to a supporting role.

You do as you’re told, or asked. If you’re lucky, the family asks you to be a pallbearer, or say a few words at the service. You keep your mouth shut when the family does things that your friend would’ve hated, telling yourself that funerals are to comfort the living. You listen while people with tenuous connections to your friend exaggerate their importance in the life that you are trying to celebrate.

And you wonder who came up with the phrase “friends and loved ones”.

I’d like you to think about that phrase the next time you read an obituary or listen to a eulogy. Think about the separate designation for friends, as if you weren’t loved.

You don’t have to file a formal protest or create a scene – just make a promise to yourself to refer to all mourners as “loved ones”.

Because it’s true.

#ThrowbackThursday

I know today’s Wednesday. Bear with me.

For those not on Facebook, the online community has embraced a couple of day-specific rituals. One is “Hump Day” on Wednesdays (admit it – you’re thinking about that commercial with the camel in the office, aren’t you?). Fridays, of course are “TGIF”. One that is relatively new is reserved for Thursdays.

#ThrowbackThursday is devoted to recalling the past. On that day, you will likely see people posting photos of themselves and people they know. Sometimes they post pictures of themselves as children. Sometimes they post old family photos. But what I’ve noticed is that most of their pictures are of friends.

Sometimes it’s a photo of just one person, a friend from their childhood, their neighborhood or school. Sometimes it’s a photo of themselves with a group of friends. And very often, the friend in the photo is dead.

This is the photo I posted on the Thursday before World AIDS Day. It was taken in September, 1990, at a black-tie fundraiser that my assistant, Steve Showalter and I worked on for months. Our reward, at the point in the evening when that picture was taken, was to have one dance together. He was a hard-working, sweet guy, who later died of AIDS.

Sometimes people will post a photo of a group of friends – from work or school, on vacation or at a rock concert – and mention who in the group is still alive. Others will weigh in with remembrances of those who have died.

“If you still remember them, they’re not really dead,” Doctor Who once said. That’s where the internet – sites like Facebook and Pinterest – give us the ability to remember our friends, and share them with others.

So, if you’re on Facebook tomorrow, join in the #ThrowbackThursday remembrances. Post a picture of a friend, with a story of why they were so important in your life.

“Gone, but not forgotten.” That’s the beauty of the internet.

 

World AIDS Day 2013

In his November 4 review of Time Line Theatre’s revival of The Normal Heart, the Chicago Tribune’s Chris Jones attempts to put the play in historical context: “AIDS is no longer a death sentence.” If only.

While it is true that those newly diagnosed are not given a prognosis of, say, thirty days (like Ron Woodroof in Dallas Buyers Club), in the fourth decade of the epidemic, there is still no cure and no vaccine.

According to the Joint United Nations Programme on HIV/AIDS (UNAIDS), new infections are on the rise in Eastern Europe and Central Asia: 13% since 2006. In the past 12 years, new HIV infections have doubled in North African and the Middle East. Worldwide, 1.6 million people died from AIDS last year.

But, that’s not us, right? That’s not the demographic so powerfully depicted in Larry Kramer’s play. Except it is.

The Centers for Disease Control reported this year that there was a 22% increase in new infection among young gay/bisexual men in the US between 2007 and 2010. They estimate that this will translate to 1 in 2 young gay men becoming infected by the time they reach the age of 50.

According to a December, 2012, report from the Chicago Department of Public Health, the city’s infection rate for gay African-American men is 35%; gay white men 16.8 percent; gay Hispanic men 12.5 percent.

As my friends in ACT UP know all too well, AIDS is not history.

And, as I knew 30 years ago, when I began volunteering, donating and raising money in the AIDS community in Chicago, everyone is at risk. Young straight women are now relying on apps to tell them when it’s “safe” for them to have unprotected sex. They define “safe” as avoiding pregnancy, without considering the risk of being exposed to HIV or other sexually-transmitted infections. Older straight women, past menopause, feel no need to use a condom because they can’t get pregnant.

There is a frightening level of denial out there. Some of it is ignorance: when we limit sex education in schools to abstinence-only, we can’t be surprised that people have incorrect assumptions about HIV transmission.

More troubling, at least to me, is the attitude that Jones alluded to: AIDS is not a death sentence. A generation has grown up being told that AIDS is “no big deal”. It’s “like having diabetes”. It’s a chronic disease – just take a pill every day and you’ll be fine.

A recent study by Case Western Reserve University of HIV positive gay men found that “those younger than 50 suffered from greater disconnection from family and friends than the older cohorts. HIV stigma played a major role; the peers of the younger group apparently don’t identify as well with someone who is living with a chronic condition. The blame game is also at play: Young people with HIV may feel that others both fault them for acquiring the virus and try to avoid them because they perceive them to be sick.” Those who are over 50 tended to have stronger support networks.

I don’t long for the “bad old days”, when memorial services and fundraising events constituted most of my social life. But the immediacy of the crisis created a sense of community that is largely gone. Other issues have stolen our attention. Our lives went on, even if those of our friends did not.

The 26^th annual World AIDS Day is December 1. The theme this year is “Shared Responsibility: Strengthening Results for an AIDS-Free Generation”.

Shared responsibility, to me, begins with the widespread dissemination of accurate information on HIV/AIDS prevention and treatment: in schools and colleges, bars and homeless shelters, clinics and churches. There is shocking ignorance, particularly among young people, of their options for avoiding infection (not just condoms, but PrEP) and emergency treatment after possible infection (PEP).

Education is just the start. Funding has leveled off or declined at the federal, state and local levels: not just for prevention and treatment, but for the complicating issues of poverty, homelessness, drug abuse, mental health. Those issues represent high-risk populations that are not getting the focus they deserve.

For those living with HIV/AIDS, there is a need for more effective coordination of services: food and housing, medical treatment, mental health or drug counseling, employment, peer support. And now, thirty-plus years after the beginning of the epidemic, we have a new demographic we never anticipated: long-term survivors.

I have friends who were diagnosed in the 80s, who, thanks to the introduction of anti-retroviral medications in the 90s, are alive and reasonably well. But their HIV status – along with the previously unknown long-term effects of these powerful drugs – creates new issues for an aging population.

Over 1.1 million Americans are living with HIV/AIDS. It’s estimated that almost 20% don’t know they’re infected because they haven’t been tested. Even now – over thirty years after the first documented cases – we see 50,000 new infections a year: more than the number of people diagnosed each year with ovarian or pancreatic cancer. And people are still dying, so yes, AIDS can still be a death sentence.

If we truly believe in shared responsibility, then it is up to us to change that. Move AIDS education, prevention and treatment to the front page. Get tested and educate yourself first, and then spread accurate information to others. Demand increased funding at all levels of government. Volunteer for an AIDS-service organization. Join PFLAG or ACT UP. Include HIV and AIDS in any discussion about poverty, drug abuse or healthcare.

The title of Elton John’s memoir is Love is the Cure, and it’s true. Until we eliminate the stigma surrounding HIV/AIDS, until we embrace groups of people with whom we may have little in common, until we pull together, there will be no AIDS-free generation, here or anywhere else.

I have a daughter, niece and nephews who have never known a world without AIDS. But if we can find that sense of community again, if we can commit to widespread, accurate education about HIV/AIDS and take care of those already infected, then maybe, just maybe, their children will finally be able to say “AIDS is history.”

 

 

To learn more about HIV and AIDS prevention and treatment, click here.

For information on ACT UP, and what you can do to work towards an AIDS-free generation, click here.