Tuesday, December 1, 2015

World AIDS Day Review - Friends Grief and AIDS by Victoria Noe

One of my favorite AIDS activists. Laverne Holley. RIP

I have a candle on my bookshelf from the October 11-13, 1996 display of the AIDS memorial Names Quilt.  Every once in a while I walk up and look at the candle, wondering about the people whose names we marched for that weekend.  I have another pin that says: “I’m voting in memory of…”  with the words “Rob” scribbled in marker. Looking at the candle holder I remember the flame that once burned in that candle light march.  ACT UP was there to drop the ashes of loved ones in front of the White House.  I was there just to remember everyone, the clients who had become my friends, the friends who were everything.  I walked by my godfather’s AIDS quilt piece, along with the quilts from Freddy Mercury and the people I knew in San Francisco who were no longer with us.  The world was changing right there in front of me, with friends passing through my fingers.  For a while there, loss was everywhere, and then the problem of remembering and learning a few of the lessons of the epidemic, before its lessons were consumed in a vast cultural amnesia.

This feeling was very much on my mind during my recent talk at the Bureau of General Services – Queer Division talk last weekFriends from all over the activist world were there, including Vicki Noe.  She gave me a copy of her book Friends in Grief: Thirty Years of Burying Our Friends. Like my Rebel Friendships book, hers is a story about the transformative qualities of friendships and AIDS work.  This short book offers a brief history of this relationship between outsiders, stars, mothers, neighbors and  our friends relegated to the cultural margins by this epidemic.  It was our job to bring them back, to care for them, laugh, to bury them, remember them and bring them back whenever we could.

Andrew, James, Jim, Jay, Jim, Jamie and Vicki Noe. 

“Because of discrimination  - whether  against homosexuals, drug users,  prostitutes, or just anyone diagnosed with the virus – friends replaced the families that abandoned them, as caregivers and support system,” writes Noe early in the story (p.16).

Noe writes about AIDS work as a heterosexual woman who worked in Chicago raising money for AIDS groups such as Chicago House, an AIDS housing program there. For a brief while I worked at Chicago House back in 1997, a year after effective AIDS treatments had  become a reality.   But the lethal disease did not seem to know that.  Deaths were still everywhere there.  And the death of Chicago House residents still brought a sensation of hollowness I can still feel today, all these years later.  We knew treatments would change this dynamic, but the virus did not seem to know that.  They were not able to save everyone.  While Lazarus Syndrome brought people back from the dead, countless others were too forgone. Their immune systems were too damaged.  And so we had to stick together, even when it felt impossible.  At Chicago house there was always a feeling of togetherness, accompanied by a complete sensation of separation. The paradox was always a part of AIDS work.

Noe writes about this loneliness as an AIDS activist.  “I didn’t feel special , or that I was worthy of attention. I felt like an outsider; like I lived in some kind of alternate universe where my friends were dying and the rest of the world didn’t see.”

She is not alone in feeling that way.  A year before that final display of the full Names Quilt, Cleve Jones, the founder of the project, suggested to me that:

Names Quilt founder Cleve Jones through the years. 

And so out of AIDS came the friendships.  They were there before and they follow the epidemic, helping to transform the lives of those of us still living.  Noe describe Elton John’s friendship with Ryan White.  “It  wasn’t easy.  But ultimately  it was his friendship with Ryan White – unlikely though genuine  - that has guided him…. It is not exaggeration to say that Elton John  turned his life around… because of that friendship.  ‘I’m here  today because of Ryan.  He inspired me to fix my life and start my AIDS foundation.  He continues to inspire me  each and every day. I know that he looked up to me and the thought of disappointing him now, even his is long tone, makes me shudder.  I try to honor his memory by living the way he would want me to live, by being the person he thought that I was,’” writes Sir Elton, quoted by Noe.

“What  has guided Elton John is what guides many of us after the death of a friend: the desire to give back, to make the world a better place, as they make it for us,” confesses  Noe. “Their lives and deaths are a part of us.”

She is quick to point out that remembering is hard.  Sometimes it is easier to forget. But that won’t help us out of this conundrum.  AIDS is still with us.  And probably the most important step we can take in coping with this epidemic, is remembering, and from there being inspired to push forward.  “Its not over till its over for everyone,” Housing Works declared after the 1996 treatments.  The point rings true today.  Its not over till its over for everyone.  Hopefully those in power can find the will power, we can push those in power to end the epidemic and finally make this a part of our past.

There is no doubt, AIDS made us more human, more open, more willing to see through our differences, just as the epidemic reminded us this is an equal opportunity affliction.

“When the story of the AIDS epidemic is written (in the past tense) will be of friendship: of the men and women, gay and straight , of all racial and ethnic groups who  tended to and buried their friends, who marched and demonstrated and testified, who raised  money and awareness – all in the names of their friends…. Just give of yourself.  And that after all, is the true meaning of friendship.”

So on AIDS day,  take a minute to remember our lost friends and the friends still with us, helping us fight this thing till it’s over for everyone.  I remember Laverne Holley, the AIDS activists from NYCAHN, CitiWide, and VOCAL.

The hardest working activist in NYC, Laverne Holley. 

On World AIDS Day, lets remember the stories of these friends, some gone, many still living.  Early in the interview process for my first book, I talked to a man whose dementia intensified between interviews.  At the end of the final interview he stopped, got up and vomited.  When he sat back down he stared earnestly and told me, "Ben, if you can do anything, tell the world this isn't a joke."  He died two months later.  Art, Marija, Phillip, Mike (and others) all died after their interviews. On Chistmas eve 1994, Fenton Johnson addressed the need for our secular culture to allow itself room to ponder the mysteries behind these deaths and lives.  His call for memories of lost friends and a place for story-telling speaks a great deal for what is missing in our reified, celebrity-obsessed culture:  "I remember a story of someone gone from my life, and tell it to somebody else, and in the telling of that story take my proper and necessary place in the chain of being."  Through the story-telling process, the grieving, the laughing, this cycle of being, we preserve memory of the quieter voices behind this, one of the most important social histories of our time.  

My friend, artist Hunter Reynolds posted a tribute to these friends for World AIDS Day.


Dear Friends,

As I reflect on World AIDS Day coming up in three days I take 
this time to reflect on the friends I have lost in the last two years. 
 Friends who have all had profound meaning to my life.  
Friendships that have spanned decades though laughter, 
 fun and parties, art and creativity, the beautiful things that 
we do to support each-other through hardships pain and suffering
 that life throws at us, often struggling to make sence of it all. 
 I honor their lives today. So beautiful and full of life is how I 
remember them the pain grieving is never really gone but their
 lives filled me with love and that I am eternally grateful for.  
I share them with you! 

World AIDS DAY December 1st 2015

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