Tag Archives: Spencer Cox

“You Keep Going”

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It’s turned into “Spencer Week” here on Baddest Mother Ever.  That’s the cool thing about writing my own blog–I never know on Monday where I will have written to by Friday.

One of his friends told the story of a time Spencer brought an actual Tony Award to work.  He went from office to office and had each of his coworkers hold the award…so that they could then hand it back to him and he could practice reaching out for it and cradling it while he said “Thank you!”

Thank you, bright boy, for these words you left with us.  Click on the photo to hear Spencer’s own words about what it’s all about.
Spencer Interview

This next clip is from the memorial service.  It includes the above footage of Spencer’s interview in the documentary followed by an emotional performance by Kathryn Kitt of her brother Tom’s song “I Miss the Mountains.”  The song is from the Tony Award winning musical “Next to Normal.”  It’s sung by a woman who’s living a “normal” life thanks to mental health medications, but she misses the highs and lows of her old life.

But I miss the mountains
I miss the dizzy heights
All the manic magic days
And the dark depressing nights
I miss the mountains
I miss the highs and lows
All the climbing, all the falling
All the while the wild wind blows
Stinging you with snow
And soaking you with rain
I miss the mountains
I miss the pain
 

As Kathryn sings, a photo montage of Spencer’s life plays in the background.  I must have been sitting by the sound guy because I can hear myself laugh at a couple of points.  A couple of sobs, too.

Spencer Cox – A Celebration of Life – Kathryn Kitt Accompanied by Tom Kitt from LIPTV 5 on Vimeo.

Eight Million to One

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Yesterday, I told the story of the chalk portrait of Spencer Cox, drawn with such skill and love by Jose Luis Silva.  I’d tell you where to find it so you can see for yourself, but it’s already gone.

Why sweat over art that will be washed away before you lie down to sleep that night?  Why write stories and fling them into the digital winds?  What remains of the work we do?

I am a storyteller (genetically, historically, unabashedly) so I tend to attach roles to the people in my life.  (You’ve met Fartbuster, right?)  Spencer was “the AIDS activist.”  I know other people who are HIV positive or who have AIDS, but Spencer was “my friend who lives with AIDS.”  I remember where I was sitting back in the early 1990’s when I heard the news that he had the virus.  I was sitting in a dainty mahogany armchair with Queen Anne legs, mother of pearl accents and a pink taffeta seat that my mother had covered with scraps for my graduate school apartment.  That was the same year that Arthur Ashe revealed he had AIDS.  So Spencer was dying, then.   I filed that away.  I hadn’t seen him since college.  I didn’t see him again for years.

Then came the 20th year since we all met at the Governor’s Honors Program in 1985.  We had email by now and a reason to get back together.  I had a freshly broken heart from the death of my husband from leukemia.  Spencer knew a lot about watching people die, so we began to talk about grief and surviving and getting back to living.  I remember a time when he compared grief to the silt at the bottom of a lake–sit still and it will clear, let it sift down and you will see the glints of gold.  Grief will rest after a while.  Mud distills into gold.  He didn’t make it back to Georgia for the 20th reunion, but we were connected again and I was grateful for his wisdom about dying.  And I was grateful that he was still alive.  I had no concept of how much he had done to make life available to people living with HIV.  Really, no idea.  I thought he was a fundraiser or something in New York and wore an ACT UP t-shirt on weekends.

Then came Facebook.  The years collapsed into nothing and we were all back together again.  My Vivi stories convinced Spencer that they were soul mates and he looked forward to serving as her Auntie Mame.  We got together a few times and I joked that he was the only friend of mine who doesn’t get a lecture about quitting smoking.  He barked out a sooty laugh and said, “The cigarettes will NEVER have time to catch me!”  Oh, how we laughed.  Twenty years and he was still here.  I told him that he was the most interesting person I knew and he snarled, “Jesus, I’m a 40 yr old man who lives with my mother.”  He was 43, by the way.  What a luxury, to outrun AIDS long enough to lie about your age!

Spencer cox ACT UP marchWe did get to praise Spencer’s work before he died–there was the movie, the Oscar-nominated documentary “How to Survive a Plague.”  We who had loved him at 16 began to learn what a giant contribution he had made to the fight against the plague of AIDS.  Spencer had always been larger than life and now he was getting to tell his story on the big screen.  He changed his Facebook name to “Spencer Squeaky Cox” after meeting Sarah Jessica Parker at a showing of the film and deciding that he needed a catchier triple moniker.  He was so alive in those heady days of interviews and panels and premieres.

I knew it was bad when I didn’t hear back from him for a week.  Then I got two phone calls at work within minutes–Bryn and Debra.  I answered the second one because I knew.  He was gone.  I didn’t have a “friend with AIDS” anymore.

At the memorial in New York, the eulogists spoke in chronological order:  his brother, his GHP friends, a college buddy, early NYC friend, ACT UP comrades, his ex, his broken-hearted and furious apologist.  Spencer’s magnificent work unfolded before us.  I couldn’t wrap my mind around it.  The video tributes from Anthony Fauci, Anderson Cooper, Larry Kramer–talking about that boy I met in Valdosta.  Tony-winning composer Tom Kitt played the piano as his sister, Katherine, sang “I Miss the Mountains” and I sobbed.

It began to sink in that even as Spencer was gone, there were people in that theater who were alive today because of him.  The face of AIDS that I had attached to one person in my life was all around me.  Many men who sat there in the light from the stage and nodded with an understanding that glowed from their sharp cheekbones and careful eyes.  Spencer’s drive.  His passion.  His pig-headed genius.  He did it.  He got protease inhibitors pushed through.  He found a way to fight the plague.

I heard the eulogists say “eight million people are alive because of Spencer,” several times but that number is so large that it is impossible to envision.  Then the man sitting beside us turned and said, “I’m one of them.”  Eight million people living.  One man, living.  I could touch this man.  I did.  Not a handshake or even a hug.  With some reflex that came from deep in my heart and overrode all my polite training, I reached out and stroked his fine cheekbone.  I cupped his aging face like I was his mother.  I wanted him to know I was happy he was here.  Eight million….to one.

Dust to Dust

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On Saturday morning, over 800 artists met under the live oaks in Forsyth Park to draw.  Each artist was given one square of sidewalk, one box of chalk and three hours–the rest was up to them.  The Sidewalk Chalk Festival is hosted by the Savannah College of Art and Design, so the quality is astounding.  Undergrads, grad students, high school hopefuls, alumni, faculty all drawing their hearts out as we stroll by or picnic on the grass.  In the mid-afternoon, judges judge, prizes are awarded, thousands and thousands of pictures are snapped.  Then as the sun sets, it’s all washed away.  It’s just chalk, after all.early portrait

 

Jose Luis Silva spent the day drawing a portrait of our friend, Spencer Cox, who died in December. Luis had been working on the portrait for an hour when we showed up. The grinning mug that he had summoned to life there on the sidewalk was already stopping traffic. People paused silently to watch him work with just black chalk, white chalk, his fingers and a watery brush.

Luis paused long enough to share hugs with me, with Brantley, with Jill. We three had loved Spencer when he was a bold boy at Governor’s Honors and again as a wizened man. In the interim years, most of us were unaware of Spencer’s work to get AIDS drugs approved by the FDA. He had disappeared on us during those New York years. At his memorial in January, many of Spencer’s dearest friends had commented on his chimeric habit of disappearing, of slipping away then reappearing years later. We started saying goodbye to Spencer when he was diagnosed with AIDS in the early 1990s. Hell, Spencer was supposed to have been dying for twenty years but he never did. Then he did.  It was hard to believe he was gone gone.  

in progress

 

Thanks to the work that Spencer did to get protease inhibitors approved by the FDA, eight million people around the world are living with AIDS today. Living. Today. Yet he’s gone. I can’t find words for the….irony? Pathos? Tragedy? I can’t, so I’ll quote from Peter Staley’s eulogy, “Grief Is a Sword”:

Eight million people on standardized regimens. Eight million lives saved.
 It’s a stunning legacy, and so bittersweet. How could that young gay man, confronted with his own demise, respond with a level of genius that impacted millions of lives but failed to save his own?
This death hit us hard. We have grappled to make sense of it. Why did he stop his meds? What role did his struggle with crystal meth play? Was this a failure of community? Are there lessons we can learn?
  

The first lesson for me has been about impermanence–Spencer is gone.  Yes, it was complicated.  Yes, he did great things with his genius.  Yes, he did horrible things to his health.  Yes, we can learn things from his life.  Yes, there are things we will never know.  No.  He is gone.

 

adding the ribbon

 

But there he was again, emerging from the sidewalk beneath Luis’ fingertips. Luis drew the figure first. Then he added texture to the shirt and the hands. He added highlights. A couple of strokes from a stick of chalk and the distinctive patch of white in Spencer’s beard came back to us. A little bit of chalk dust and there was my friend.  

When he was diagnosed with AIDS in his early 20s, it seemed foolish to dream of living to 30. Miraculously, he made it to 44. It was still miraculous for a man with AIDS who had survived the plague years to die at the advanced age of 44; it was still tragic for a man in this day to die of AIDS at 44 when drugs are able to offer many more years.

Luis surrounded his black and white portrait with a vibrant pink and purple background. Colors are never as simple as “pink” and “purple.” It took yellow and brown and gray to make the pink and purple work.

He added Spencer’s name and the years of his birth and death in the top left corner. That’s when the passersby started asking each other, “Who is that?” In the top right corner, Luis added a red ribbon for compostional balance. Once they saw the red ribbon, fewer people asked who Spencer was. Oh, AIDS. Another one bites the dust.

reference portrait

 

The dust.  Saturday’s weather couldn’t have been more pleasant–warm spring sun, dappled shade, light breeze. Even in that idyllic climate, every motion–from the breeze to the sighs of careful crowds–took its toll on Luis’ creation. Near the end of his three hours of allotted drawing time, he turned to me and said, “That’s the thing about chalk. I use the water to make it stick better, but the face is already changed from when I drew it. Just in a few hours.” His hand fluttered between the photocopied picture of Spencer that ran with the New York Times obituary and the chalk portrait there on the ground before us. Chalk art changes as you make it. It can’t be anything but impermanent. 

When Luis declared that he was done, we sat under the oaks and we didn’t talk about Spencer. We played with the tired baby. We drank beer and iced coffees. We sent the big kids on errands. We packed up and headed home at a sensible hour, like grown ups do.

I wonder what it would have felt like to stay there until the park emptied out and the cleaning crew came through with their hoses. I wonder what it would have meant to me to watch that patch of white in Spencer’s beard wash away into nothing as it joined with everything around it.

An artist creates a portrait that changes as he draws. A musician plays a note that fades at the same instant it is born. Eight million people breathe in; eight million people breathe out and the dust shifts around them. Before we can know a thing, it has moved on.