Friend Grief in New York - Part 1

This is the first of two posts this week recapping my experiences in New York City last week. I was primarily there to be part of the Author Hub at Book Expo America (more about that on Friday). But today I want to tell about my first NYC book signing.

Friend Grief and AIDS: Thirty Years of Burying Our Friends grew out of my experience in Chicago’s AIDS community in the late 80s/early 90s. I was a fundraiser, often the only straight person in the room. And though many people asked me why I involved in “that”, I felt a responsibility to do what I could.

An unexpected but remarkable result of writing this book has been meeting men in ACT UP (AIDS Coalition To Unleash Power), some of whom were heroes of mine back in the Bad Old Days. I’ve also met many remarkable men and women who are new(er) to the movement. Their knowledge and passion are humbling.

Sunday night I did a reading at Bureau of General Services – Queer Division, a gay and lesbian bookstore on the lower east side of Manhattan. I put out the word, but you know, it’s impossible to predict who will show up.

At Book Expo, we heard a lot about building a street team: readers who are invested in your success and want to help spread the word about your work. I had that kind of group at BGSQD. Ten men – most around my age – engaged in a deeply emotional, and occasionally funny, discussion.

The premise of my book is that friends made all the difference in the AIDS epidemic (they still do). Friends became the family of choice for those who were abandoned by their ‘real’ families.

The men who joined me were living examples of that premise. They were men who had visited dozens of dying friends in the hospital, papered their refrigerators with photos of hundreds of friends who died, got arrested for demonstrating on behalf of those who were discarded by society.

There were tears and smiles as we discussed the long-term, long-repressed grief that is only recently being spoken of in the community. Why? Why now? I don’t think we came up with a definitive answer. Maybe it’s because many of us are at the age where we begin to take stock of our lives, reflect on what we’ve done and how we got here. Maybe it’s because the increase in new infections has triggered flashbacks of demonstrations and memorial services.

Like military veterans, those of us who were around in the 80s and 90s spoke of it only to each other, and even then, not much. Those on the outside weren’t particularly interested. Just like the VFW and Dryhootch function as safe locations for vets to discuss their experiences, BGSQD served a similar function for those who joined in an almost three hour conversation on Sunday night.

I don’t expect every reading to be so memorable. But I’m grateful to BGSQD and everyone who was there. It was the perfect example of what speakers at Book Expo encourage us to do: build a loyal base of readers who identify with you and want to help you succeed.

Awards are nice, but I’d rather build Friend Grief on events like this one. And I hope you all will come along for the ride.

On Friday: how Friend Grief got noticed at Book Expo

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 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.

Coming Attractions on Friend Grief

I’m in New York this week, for Book Expo America and to meet some writing deadlines that have been hanging over my head. I thought this is a good time to let you know what’s coming up in the next few months here on Friend Grief:

1.      Guests. I’m quite excited that you’ll be seeing a guest blogger once a month. Men and women, their ages will vary, as will their perspectives. One was a caregiver to her friend, another is a grief professional. Yet another will offer a new take on the AIDS epidemic. All are excellent writers. What they share is the experience of grieving the death of a friend.

2.      Book reviews. More than one person has pronounced my subject matter ‘depressing’, and I’m sure it is to some people. I read some books about grief, but not a lot. While I am reluctant to create a hierarchy of grief, I do believe the grief we feel for a spouse or child is different than that we feel for a friend. But I’d like to share some of the books I have been reading, ones that deal specifically with the author’s grief over losing a friend. Some of them are celebrities, some are not. But all have something to say about the experience we will all have some day.

3.      Movie reviews, for the same reason as #2.

4.      Resources. Along with the book reviews, the Resources page will be expanded to include more organizations started by people who wanted to honor their friend’s memory. I’ll also be adding more social media: blogs, Twitter hashtags to follow, and Facebook groups.

5.      And last but not least, later this summer I will be publishing my first e-book on friend grief and anger. It’s a small book, about 5,000 words, and will be available later in print. As we get closer to the publication date, you’ll find out how you can download it for free.

So, get your popcorn and your drink, sit back and enjoy. There’s a lot more to come!

Disenfranchised (Friend) Grief

Last April, I wrote about the concept of "disenfranchised grief". If you've experienced a lack of empathy - perhaps even a callous disregard for your grief - you already know what I'm talking about. On this blog and in my book, I try to shine a light on this kind of grief:

I didn’t know when I decided to write my book that there was such a thing as “disenfranchised grief”, coined by Dr. Kenneth Doka of the College of New Rochelle, in 1989. In the 2002 revision of his Disenfranchised Grief: Recognizing Hidden Sorrow, Dr. Doka observes how the grief a friend experiences can be dismissed:

“Often there is no recognized role in which mourners can assert the right to mourn and thus receive such support.  Grief may have to remain private.  Though they may have experienced an intense loss, they may not be given time off from work, have the opportunity to verbalize the loss, or receive the expressions of sympathy and support characteristic in a death.”

Sometimes the disrespect is intentional, sometimes not. But you’ve probably experienced the following situation:

“The role of the friend or similarly close relationship may simply be ignored – unrecognized or unacknowledged.  Such persons may attend the funeral.  They may even be expected to be there out of respect for the deceased and in support of the family.  But they remain passive participants, their own need to mourn overlooked.”

So, if it makes you feel better, there is a reason your grief felt compounded by the lack of respect you experienced. Grieving a friend is not acknowledged in the same way as grieving a family member.

It’s up to all of us to let those around us know the importance of our friendships and the depth of our grief. Then and only then will grieving a friend receive the respect it deserves.

"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 11^th 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.

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 30^th 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.

Things I’ve Learned Writing a Book about Friend Grief

It’s been five years since I promised my friend, Delle, I’d write a book about dealing with the death of a friend; almost two years since its form finally became clear to me. I’d already spent over two years mulling it over, writing in fits and starts (mostly fits) before hitting the wall. I’d given up, but one day, it was just there like magic; or karma.

I began by researching the whole phenomenon of “disenfranchised grief”: grief that is not acknowledged or respected. Grieving the death of a friend certainly fit the definition. I already knew from personal experience that while everyone at some point will experience the death of a friend, most people are not very sympathetic of others’ grief. The title of my book reflects the most common reaction: “It’s not like they’re family”.

As someone once said, there are things I know for sure, and things I just guess at. The most basic thing I knew for sure when I started out was that everyone has a story. With few exceptions, I get the same reaction from people when I tell them about my book. They might be enthusiastic, or neutral, or sometimes dismissive. But then there’s a pause in the conversation, and they say, “You know…” That’s when they tell me a story about a friend who died. When I realized how universal that reaction was, I knew I was on to something.

I also knew I had to include 9/11 in the book; it’s too big, too unique to ignore. I’ve made several trips to New York, toured every related museum or exhibit, talked to people who were there, and others like me who were affected from a distance. I’ll go back in September for the 10^th anniversary observances, hopefully to hear my classmate’s name pronounced correctly this year during the naming ceremony. The loss of life on 9/11, and the friends left behind, could easily be its own book, but that’s a discussion for another time.

Only one thing has surprised me (other than how long it’s taken to actually finish writing the book), and that’s the willingness of men to tell their stories. I go into an interview with roughly 30 questions, all open-ended, to get the person talking about their friend. One reason I have those questions is because I assumed getting men to talk would be akin to pulling teeth without an anesthetic. I couldn’t have been more wrong.

I’ve asked others why these men have been so willing to bear their souls to me, to share their memories and their pain and their love for their friends. I don’t think it has anything to do with me; I think it’s more basic: someone asked. And I believe I will write another book, just about men grieving their friends.

But first I need to finish this one. I’ve set an arbitrary deadline of Labor Day weekend, to finish all but the 9/11 chapter. I chose the date at random, but in reality, it has great significance. Five years ago Labor Day, I was visiting my friend, Delle, in the hospital. I walked into her room as her doctor walked out, having told her the cancer had returned for what would be the final time. Since I promised Delle I’d write the book to begin with, it seems somehow perversely appropriate.

I’ve learned other things along the way: that there is a market for my book, that people are incredibly generous with their time and their memories, that I have a posse that’s pushing/cheering me on.

“You gotta have friends,” the song goes, and it’s true. What is reinforced for me every day is that even when those friends have left us, they’re always in our hearts.

D is for “Disenfranchised”

I’m on an A to Z blog challenge, and today is the 4^th day of the challenge. That explains the pithy title. ;)

I didn’t know when I decided to write my book that there was such a thing as “disenfranchised grief”, coined by Dr. Kenneth Doka of the College of New Rochelle, in 1989. In the 2002 revision of his Disenfranchised Grief: Recognizing Hidden Sorrow, Dr. Doka observes how the grief a friend experiences can be dismissed:

“Often there is no recognized role in which mourners can assert the right to mourn and thus receive such support.  Grief may have to remain private.  Though they may have experienced an intense loss, they may not be given time off from work, have the opportunity to verbalize the loss, or receive the expressions of sympathy and support characteristic in a death.”

Sometimes the disrespect is intentional, sometimes not. But you’ve probably experienced the following situation:

“The role of the friend or similarly close relationship may simply be ignored – unrecognized or unacknowledged.  Such persons may attend the funeral.  They may even be expected to be there out of respect for the deceased and in support of the family.  But they remain passive participants, their own need to mourn overlooked.”

So, if it makes you feel better, there is a reason your grief felt compounded by the lack of respect you experienced. Grieving a friend is not acknowledged in the same way as grieving a family member.

It’s up to all of us to let those around us know the importance of our friendships and the depth of our grief. Then and only then will grieving a friend receive the respect it deserves.

Types of Grievers

What kind of griever are you?

One of the hardest things for some people to understand is that everyone grieves in a different way.  Throwing yourself back into your “normal” routine may be perfect for some people, but the worst possible thing for others. 

I’m not even talking about gender.  The differences I’m talking about today are personality differences.  Of course, gender, ethnicity, even age may have an influence on these behaviors.  But that’s what they are:  responses to a situation. 

Personality and behavioral assessments are used in business every day: Enneagram, Meyers-Briggs, DISC.  In Dr. Kenneth Doka’s book, Disenfranchised Grief, he offers a description of different types of grievers.  You may see yourself and others in these descriptions:

1.      Intuitive:  Some might say an intuitive griever is typically a woman, and certainly in our society, a woman expressing her grief through crying is accepted.  But this griever can also experience other physical manifestations of their grief:  anxiety, confusion, inability to concentrate, physical exhaustion.

2.      Instrumental: Similarly, an instrumental griever may more likely be a man.  This is someone who is reluctant to talk about their feelings, and anxious to get back to “normal”.  They may also be the person who needs to “do” something: bring food over to the deceased’s family, organize a memorial service, or clean out a closet.

3.      Blended:  You may even be one of those grievers who possess qualities of both the intuitive and instrumental grieve.

4.      Dissonant:  This is a person in conflict: a man who wants to express his grief, but feels like society won’t allow that.  It could also be a woman who feels guilty for not crying a lot.  You don’t feel like those around you will allow you to grieve the way that makes the most sense to you.

I’m not trying to perpetuate stereotypes. 

But I wanted to point out these differences because often those who mourn friends are criticized for grieving.  The people around them don’t understand the depth of the pain they feel, because the person who died is “just” a friend.

Recognize that everyone grieves differently. 

And let them.