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Grief Is a Sword: A Eulogy for Spencer Cox

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This eulogy, and call to action, was delivered at "Spencer Cox: A Celebration of Life," a memorial service held on Sunday, Jan. 20, 2012, at The Cutting Room in New York City.

I want to remember the activist. I first met Spencer when he started showing up at ACT UP meetings in the fall of '88. We were all so young. I was younger than most, but he was seven years my junior.

Spencer started by joining ACT UP's most intimidating committee. The Treatment & Data gang was a pack of know-it-all divas who expected new members to climb the learning curve fast, and burn their own paths. He did both in short order, and quickly earned the respect and friendship of these self-taught expert activists. It didn't hurt that he was one of the few who could out-smoke Mark Harrington, or that he provided a constant soundtrack of dark humor to our often depressing work.

But it's when our activism started to pivot that Spencer really began to shine. AIDS treatment activism began with fury, and blind hope, that if we just pushed hard enough, we could force the system to find the cure or near-cures that were surely out there. But they weren't, and a simple bureaucratic fix wasn't going to save us.

Spencer and the other science geeks led this pivot. We could no longer take short-cuts around the tenets of scientific discovery. We must instead devise new and creative methods to use those basic tenets for our ultimate goals. Spencer, in particular, became almost religious about this new science-driven activism.

He and the other geeks started the pivot by challenging the hard-fought and hard-won orthodoxy of gay men threatened by AIDS from our politically active enclaves in New York and San Francisco, from neighborhoods like Greenwich Village, Chelsea, and the Castro. We demanded and got our quick FDA approvals. We used our often gay and truly heroic HIV specialists, becoming experts together, custom tailoring novel regimens from approved and unapproved treatments alike. Over time, we got more AZT knockoffs approved, with less and less applicable info on how to use them to actually save lives.

That's when the science geeks made their courageous play. Spencer slammed the status quo. He testified before the FDA about the accelerated approval of the third AZT knockoff, d4T, saying:

"The approval of therapies based on inadequate, ambiguous, uninterpretable or incomplete data offers severe and potentially insurmountable difficulties in the future evaluation of new treatments. This is the deck with which the current therapeutic house of cards was built."

It was a wonder watching him wow the FDA, and in meetings with the biggest names in AIDS research, like Anthony Fauci. He earned the respect, and the love, of his fellow science geeks, and those of us lower down the learning curve. We were family, albeit one with lots of incest happening.

Spencer played a key role when TAG launched an audacious campaign challenging Hoffman-La Roche's blatant attempt to get their protease inhibitor approved without providing the necessary real-world data on how to use it. I remember having my doubts at the time. Should TAG really go out on a limb like this, infuriating most of the other AIDS groups that sought to defend our hard-won regulatory reforms?

Spencer patiently walked me through the arguments for challenging the self-help orthodoxy we ourselves had help build. He made his case not with science or statistics, but with ethics. This was about moving beyond a status quo that provided the illusion of serving only a privileged few. This was about serving the greater good. This was about health care for all, built on a democratization of data, not just drugs. We needed answers, not just access. We needed clinical trial data that could be used for standards of care in all resource settings, so that the guessing would end, and clear treatment guidelines would save the greatest number of lives.

He was right of course. And today we have highly detailed treatment guidelines, backed by interpretable data, and adjusted for resource settings around the world. 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?

These aren't just nosy questions by idle bystanders. There are thousands of survivors of the plague years who in small ways and large feel damaged and vulnerable. All of us have felt the pain and helplessness of watching a friend struggle with meth.

The details of Spencer's own struggle with it, or even if there was a struggle this past year, remains shrouded in the wildly divergent opinions of those who knew him. I saw him after his return to New York, and he was the Spencer of old: campily dismissive of almost everything and everyone, cutting in his humor, and with grand plans for the future, including walking the red carpet at the Oscars. He shined at the premiere of HOW TO SURVIVE A PLAGUE; comforted Sarah Jessica Parker after a screening a few weeks later; and wowed a crowd of healthcare workers at St. Luke's Hospital during a post-screening panel we did together just a few weeks before he died.

What we do know for sure is that a great deal of his life came crashing down in 2008 because of his struggles with addiction, and he was still far from rebuilding that damage. The debate that has ensued since his death between frustrated community activists and harm reductionists is worth having. We need to find some common ground that is neither complacent, nor stigmatizing.

Given Spencer's activism, his treatment interruptions were confounding. There were at least three over the last decade, all resulting in dangerous hospitalizations. When asked why, he would evade, probably realizing that the answers would be too painful to explain.

His last burst of activism was explanation enough. He 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 circumstance, have landed on our feet, all of us in some way have unprocessed grief, or guilt, or an overwhelming sense of abandonment from a community that turned its back on us, and increasingly stigmatized us, all in an attempt to pretend that AIDS wasn't its problem anymore.

That is Spencer's call to action, and we should take it on.

Maybe we've over-analyzed his death. The "why's" might be better explained by this young man's complexities, his genius and wit, and the flip side of that coin, his very human imperfections. The larger issues his death raised for our community should be explored, but not manipulated, from what was, in the end, a man's uniquely beautiful, courageous, and fallible life.

It is his activism I will remember.

In Paul Monette's Last Watch of the Night: Essays too Personal and Otherwise, he writes of his lover's death from AIDS and his own imminent one in the essay "3275," which is the plot number of Monette's gravesite with his lover's on Revelation Hill at Forest Lawn Cemetery:

"We queers on Revelation Hill, tucking our skirts about us so as to not touch our Mormon neighbors, died of the greed of power, because we were expendable. If you mean to visit any of us, it had better be to make you strong to fight that power. Take your languor and easy tears somewhere else. Above all, don't pretty us up. Tell yourself: None of this ever had to happen. And then go make it stop, with whatever breath you have left. Grief is a sword, or it is nothing."

Spencer Cox Playbill




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Comments on Peter Staley's blog entry "Grief Is a Sword: A Eulogy for Spencer Cox"

How moving.

I have been infected sine the beginning of the epidemic, and have found the time since HAART to be the most perplexing for me. I have been lucky: I have a career, good friends, and have had few untreatable medical problems, but I feel profoundly alienated in a culture has already forgotten the terror we lived through. I feel that my ongoing struggle has become very solitary and that the damage incurred is no longer acknowledged by a culture incapable, still, of grasping its tragedy.

Thank you.

I think we HIV + men have come a long way but we still lack an accepting society and we ourselves sometimes forget about our friends living with the disease as well. Although I like events such as NIN and the Ritz on Thursdays, we have to come up with other means of support that doesn't involve going to a bar or night club to mingle with other poz guys. We need events were other guys feel like they have a voice and feel at home. I'm forever grateful to the work ACT UP has done since the beginning of this epidemic but now we have to become activists to a different cause, and that is to keep those of us still on this earth safe from our two worst enemies, loneliness and our own minds. I want to say I love you Peter Staley, and I'm glad to see and hear from you through poz.com.

am soo excited to read ur news , i am a positive gay from ghana , and i want to learn and know more about act up , we have a alot of positive gays in ghana and we have a big problem , so i hope u will keep intoch so i can give u all the informatiom and the problem we positve gays are faceing here , thank u my e mail rexguy2@yahoo.com

facing death right in the eye is like going inside a new ample vast corridor, some people are afraid of
it, some embrace it dearly. May our ticket once it has been put on our fingers, turn into a joyous and mellow undertaking.

The Meth epidemic is killing our communities.

Meth creates a hyper-creative, hyper-sexual, initial phase
that "gives you the most incredible feeling you will ever have"
-- a feeling that lasts for a long time. The only thing that
lasts longer is the period of lack of enjoyment that follows --
of all things that used to bring joy. All your old depressions
and anxieties return, along with the guilt and shame that you
cannot admit to anyone.

As the addiction runs its course, the creative periods shrivel
up, and what is left is a joyless gray existence punctuated with
highs that become shorter and shorter.. and never reach
the "greatness" that you remember. Eventually, money dries up.
If you start out with lots of it, it may take longer, but it will
happen.

There is no surprise that the recidivism rate for meth addicts
trying to recover is higher than with any other stimulant drug.
The funds to fight the meth epidemic is going to imprison users,
not to find effective treatments. Instead of fighting for our
brothers and sisters, we ignore it, adding to the shame and
guilt. In a 2006 San Francisco study, 19-39% of pozzers reported
using meth the previous year. This isn't unique to SF, and this
affects all of us.

How long are we going to watch our brothers die before we fight
back?

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This page contains a single entry by Peter Staley published on January 25, 2013 12:59 PM.

Spencer Cox Memorial was the previous entry in this blog.

The Cure Baby, The Berlin Patient, And A Cure For The Rest Of Us is the next entry in this blog.

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