Wednesday, January 29, 2020

A Lifelong AIDS Walk and Picnic

I didn’t go to the AIDS picnic in Seattle this year. Or to the Florida AIDS Walk and Music Festival. Or to the Louisville AIDS Walk & Pet Walk. Or to Dining Out for Life. Or to the AIDS Foundation of Chicago’s “World of Chocolate.” I didn’t even make it up to Canada to sing with my chorus at the sparsely attended Vancouver AIDS Walk. 

I intended to go. But I’ve already been to a lifetime of AIDS fundraisers, conferences, protests, and rallies. 

The celebrated 2012 documentary How to Survive a Plague tells the story of ACT UP – the “AIDS Coalition to Unleash Power” – during the late 1980s and early 1990s. A generation of gay men and their allies responded with unprecedented passion both to a fatal pandemic as well as to unconscionable societal neglect. The movie combines archival news footage with contemporary interviews.

I was worried the film might be triggering, so I watched it at home on the couch with the dogs. We were fine. It looked like history  preserved in newsreel amber, just like the recent documentary about Apollo 11’s trip to the moon. Most viewers of How to Survive a Plague would never guess that people are still living these stories.

The director of How to Survive a Plague, David France, was a young gay journalist in New York who witnessed ACT UP’s heyday. A few years after completing the documentary, France published a book with the same title. 

When I encountered his book in an enticing display at the library, I expected something similar to the film – lots of pictures and nostalgic anecdotes. Instead, France 513-page narrative is a detailed account of medical, political, and personal developments at ground zero of the AIDS epidemic. France relies on both meticulous research as well as his close relationships with the larger-than-life figures at the center of the movement.

The book begins with a prologue describing a memorial service in 2013, two decades after the ACT UP era. Spencer Cox became a key figure in ACT UP’s treatment advocacy when he was barely twenty years old. Here’s how France describes the attendees at Cox’s funeral: 

“Even the nimble among them wore haunted expressions. If you knew what to look for, you saw in their faces the burden of a shared past, the years and years of similar services. This was what survivors of the plague looked like.”

ACT Up is not my story. 

I was in Utah, New Haven, Seattle, and Chicago during the plague years – not New York or San Francisco. 

And I’m not that kind of activist. While I was in law school, one of my openly gay classmates was arrested at ACT UP’s most notorious protest – after accosting Cardinal O’Connor during communion at Saint Patrick’s Cathedral. That’s definitely not my scene. 

Instead, I was a suit-and-tie guy. I’ve repeatedly described myself as a longtime LGBT rights lawyer. In the early years that mostly meant I was an AIDS lawyer. My first pro bono cases as a young attorney came from VAPWA – the local bar association’s “Volunteer Attorneys for People With AIDS.” When I moved to Chicago to work for the ACLU, I was the Director of the AIDS & Civil Liberties Project. I’ve been doing this work for a long, long time. 

My contemporary Andrew Sullivan reviewed How to Survive a Plague for the New York Times. Sullivan observes that France’s “granular” account “feels so real to someone who witnessed it that I had to put this volume down and catch my breath”:

Here again are the manifestations of terror: the purple cancerous lesions of Kaposi’s sarcoma, fatal when they migrated to your lungs; toxoplasmosis — a brain disease that turned 20-somethings into end-stage Alzheimer’s patients; pneumocystis carinii, which flooded your lungs until you drowned; cytomegalovirus, which led to blindness, so that young men in AIDS wards were “hugging walls and scraping the air to find their nurses”; molluscum contagiosum, covering the body in “small, barnacle-like papules” that oozed pus; peripheral neuropathy, with which a mere brush of a sheet against your skin felt like an electric shock; and cryptosporidiosis, a parasite that took over people’s gastrointestinal tract, slowly starving them to death. It’s been over a decade since those Latin nouns were household words in gay life, and reading them still traumatizes.

Ultimately, however, How to Survive a Plague is an epic, not a tragedy. Here’s how Sullivan concludes his review:

What lingers in France’s book is the toll that memory took and still takes. These young men both witnessed their friends and lovers dying excruciating deaths, knew that they were next and yet carried on…. This is the first and best history of this courage, and a reminder that if gay life and culture flourish for a thousand years, people will still say, “This was their finest hour.”

France's detailed account of the ACT UP era concludes in 1996, at the community meeting in New York where doctors and scientists described patients’ astonishing response to the new combination therapy. That same week I attended the Chicago version of this meeting.

This is France’s description:

             When the room emptied out, I found myself standing in the sun-creased lobby watching the men in the audience exchanging hugs and tears. I noticed how incongruously young everyone looked. Most were, like me, not yet middle aged. I was thirty-five years old. I’d lived my entire adult life in the eye of unrelenting death. We all had. The feeling of relief overwhelmed me….  It was not over. It would never be over. But it was over.

I was thirty-one years old.

In an epilogue to How to Survive a Plague, France returns to Spencer Cox’s 2013 memorial service. He reveals what subsequently happened to the band of brothers at the center of the book’s narrative – my near-contemporaries and fellow survivors from the trenches. Some moved on to new types of activism. Others retired to the country. Many descended into substance abuse and depression. Some of us had kids. One guy my age got busted for falsely claiming to be HIV-positive all along – he just wanted to be part of something important.

Spencer Cox himself choose to go off his meds and die. According to France, in his final months Cox “spoke out forcefully about the depression and PTSD that the surviving generation of gay men from the plague years often suffered from, regardless of HIV status. While many of us, through luck or circumstances, have landed on our feet, all of us, in some way, have unprocessed grief, or guilt, or an overwhelming sense of abandonment.”

That’s what happens when you survive a plague.

Previously:  “OK Boomer

Next:  “Set Theory

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