Spencer Cox, HIV and the Problem of Memory

        

 

            The violence of waking life disrupts

            The order of our death.  Strange dreams occur,

            For dreams are licensed as they never were.

                                   

                                       from Louis Simpson

 

            If I have one piece of advice for young, aspiring activists, it is to always hold on to           the joy, always make it fun. If you lose that, you have lost the whole battle.                                                                       

                                                            Spencer Cox

 

 

           After hearing about Spencer Cox passing, several of us starting chatting and dropping notes on Facebook.  Eric Sawyer suggested a few of us meet at the Stonewall to hang.   Long time AIDS activist Spencer Cox was gone after a long battle with pneumonia.  Some said he stopped taking his HIV meds.  Praying for the dead and fighting like hell for the living are one thing.  But sometimes just living is hard.  Primo Levy could survive Auschwitz but living with the memories, the reality that he had survived but others had passed, that was another story.  He ended up throwing himself down an empty elevator shaft, a painful long fall.  Cox was one of the veterans of the famous Treatment and Data group from ACT UP who helped push parallel track and an effective research agenda to get drugs into bodies, the right drugs which would help those who had survived the plague at that point have a fair chance of living.  And then he stopped taking his own medications.  It is one thing to fight for the living, another for us to live ourselves.

             At the Stonewall Inn, those of us in attendance, talked about living, losses, trauma, frienships, and ACT UP.  Some of the naked protesters who had zapped John Boehner's office were on hand for a fundraiser to pay for their still mounting legal costs.  

 

The naked activists still have legal fees to be paid.
 

 

 

We talked about Occupy, Queerocracy, AIDS activism, kids and surviving.  Cox had pointed out that those who survived AIDS would have to live with memories of those who had fallen, even as they tried to live.  "All I do is work," explained one activist.  Another noted that the stress of coping with those years just had just kept on.  Memories fade but the pain still lingers.  So we talked about living and friendship. Eric noted that many he knows have worked so hard on living and fighting that they can no longer take care of themselves or move beyond the epidemic or the traumatic stress of the pent up pain. 

 

Jon Winkleman posted on facebook:

 

 

‎"Spencer Cox, an ACT UP veteran who founded a think tank called the Medius Institute for Gay Men’s Health, suggests that anybody who lived through the worst of the AIDS crisis has lasting trauma and tends to suffer elevated levels of drug problems, starting later in life. “These aren’t people who were ticking time bombs to begin with and then skidded off the road. They’re our best and brightest. I can’t tell you how many terrific, smart, hardworking, amazing people I know hit middle age and just lost it,” he says."- Spencer Cox, NY Magazine 2008.
In a very painful irony I found this while re-reading David France's articleabout the self destruction Dr Gabriel Torres. Between the 25th anniversary and the 2 documentaries, I've been hearing a lot of my ACT UP sisters and brothers talk about the catastrophic long term serial grief, post traumatic stress and shell-shock from living through the worst years of the plague. For years I thought I was alone. Now I know many of us have similar struggles.  There seems to be barely any discussion of and no support for the emotional, psychic and spiritual injuries many of us live with today. How can we come together, talk about it and find a way to support and heal our survivors.

 

As the conversation continued at the Stonewall Inn, several talked about the need for old school support for people living with both HIV and the memories of those no longer here, as well as the psychic scars we still carry, just like anyone who has survived a war.  Others recalled the old HIV widower groups for survivors.

             "Aren't those support groups, weekly meetings still going," I asked.  

            "Not really."

Well, maybe we need to get them back, those old school mutual aid groups, those spaces where people practice care and non alienating humanity with each other.  Maybe we need a few more of those public spaces where people run into friends, those Zuccotti Parks, Charas community centers, those ACT UP meetings, those spaces where people practice being kind to each other.  We desperately need those spaces to meet and talk, connect and care.  The pain of living, of alienation is part of what drives people to violence, to hurt themselves, and others, to neglect themselves and others.

Michael T and Eric S. hanging out.

            Leaving the Stonewall, I started to unlock my bike.  A friend from ACT UP asked where my light was.  Stolen, I told him.  He said that he hoped I would get a light for my bike so I make it home ok.  We need you to be around for years and years, he explained. Quite a compliment.  Later on my ride home, it was not a problem with a light that stopped me.  I got a flat.  "I would know that hat anywhere," my friend Josh pointed out at the bottom of the bridge .  He was going to Barbes but slowd to to walk me home.

            Arriving my house, I thought about the pain of surviving with the bittersweet reality that so many others have not or are not making it - whether they are on the Rockaways or on the streets, or long passed from HIV.   I thought of an article I wrote in late 1999 for POZ.  It never ran at the time.  But the issues it talks about in terms of HIV and memory, seem as present today as they did back then, over a dozen years  ago when we were first grappling with protease inhibitors and the reality some of us would actually survive this thing, physically. But only then we would have to reconcile ourselves to the memories of what had come before, the decade or so of living with the reality that many of our friends, they, we might not survive. And now we were going to have to, they were going to have to, or so we thought. 

 

            " We’re very focused on living with AIDS. ..." noted Spencer Cox in another blog post. "And most of the time, that’s how it should be. But maybe once in a while, we need to stop and remember what happened to us. Maybe if we made some room for our sadness, we wouldn’t be so depressed."

 

            In honor of Spencer, here are a few ideas about what those memories mean for the living, even a dozen years later.

 

            ...the mind and its relation to the body, I will never understand.  Today, as we face the dilemmas of Lazarus Syndrome, so called "bare backing," and the complexity of prevention strategies, HIV has become an epidemic facing a problem of memory.

            At this point, AIDS has become the View Nam of the 1990's, its grip on our culture and psyches still eludes explanation.  The problem is we are still walking in the midst of this conflict so its difficult to step outside and fully observe it.  The legacy of this war is, to borrow the words of literary critic Paul Fussell, one of innocence savaged, and if not destroyed, transformed.  It is "the total cultural form of our present life..." as Frye wrote after WWI. "The cultural form of our past is not only the memory of mankind, but of our buried life... Study of it leads to a recognition scene, a discovery in which we see, not our past lives, but the total cultural form of our present life."  Below the surface, AIDS informs countless ways we have become what we are.  Today, it becomes another permanent fixture on the American political landscape.  The violence of HIV and the national drift toward criminalization over prevention is omnipresent.

 

Forgetting

            Bruce Woods Patterson, a New York psychotherapist, has suggested that even if we found a cure today, its would take a generation to clean up the mess.  I still remember when the San Francisco AIDS Foundation published its report on, "The Epidemic of Grief" taking hold of the psyche of the city.  In The Great War and Modern Memory,  Paul Fussell addresses the persistence of grief on a culture.  Many  thought they could just leave the war behind.  Stanley Casseon recalled his years after WWI:  "I was deep in my work again, and had, as I thought, put the war into the category of forgotten things."  Life and memory tend to be a great deal more porous.  "The war's baneful influence controlled still all our thoughts and acts, directly and indirectly."  Whether we say it or not, HIV still pervades a great deal of our worlds.

            Today, I worry we are facing a third epidemic - one of forgetting and the indirect ways this plays on people's lives.   There are powerful reasons why people would want to forget the epidemic.  Many lost as many as a friend a week for some 15 years.  Of course, they would want to close the door on that ugly place and feeling remembering AIDS represents. 

            When I was conducting oral histories of survivors, there was often a point in interviews when interviewee would glimpse out their eyes leaving the room, recalling the strange silhouette in their mind of the scene, the feeling of the first days HIV entered their lives.  Given the profound level of pain resulting from the virus, its easy to see why people would want to forget.   The problem is, we may never get out of this if do not learn how to remember and honor what happened. 

 

Silence No Longer Equals Death?

            Quite obviously, our political culture has a huge steak in forgetting HIV. 

Bill Clinton campaigned on the pledge that HIV will be an obsession of this administration.  He would just assume leave behind that broken promise.  More to the point, HIV represents a series of cultural failures.  Lack of a cure represents a failure of science.   The snails pace recognition of women's opportunistic infections, a failure of sexism in medical research.  HIV represents a failure of policy. Its continuing effect on poor people  - a result of our continued failure to handle racism in America. 

            Today, as HIV transforms, continuing to attack more and more invisible, socially vulnerable populations - IDU's, low income women, and queers of color, we are now facing an epidemic of amnesia.  The lessons "SILENCE = DEATH" taught gays -experiencing the inequalities of access to health care and social injustice outsiders face every day in our culture  - today these lessons are being blurred within the epidemic's transformations.  I think this problem can be traced to a very specific source. 

            I will never forget that strange Sunday in the fall of 1996 when I awoke to find Andrew Sullivan's essay, "The End of AIDS?" had been dropped off at my doorstep.  While elaborately detailing the resurgence of circuit parties, Sullivan's essay diminished the impact of those hardest hit by AIDS - the urban poor.  It was as if he was suggesting their plight was less significant than those in the gay ghettos.  Would history record that gay communities walked away from AIDS once it stopped disproportionately effecting gay men?  Writing AIDS is over and then - five pages later - offering a caveat, except for poor people, is forgetting silence equals death.

            Sullivan's essay speaks to the problems of memory.  Which lessons would be learned from the AIDS crisis years?  Would the notion that 'queer sexuality equals contagion' and everyone needs to get married be the legacy of the pandemic?   In the following years, would the queer movement divide into the radical gay liberationists and the assimilationist homophiles?  Sullivan's essay illuminates the first phases of a national moral panic unfolding around the shifting AIDS pandemic.  Preserving cornerstones of queer culture and public sexual space during a time when it is being taken away under the auspices of public health is remembering.  Savonarola said the Black Plague for punishment from God.  The English used the Contagious Disease Act to punish women and did little to stop the spread of Syphilis.  Bath houses have served as a shelter from a world which considers queers not fully worthy of rights as citizens.  As Allen Berbube has always warned, bath house closures represent thinly veiled covers for anti gay, sexphobic political encroachments. 

 

Impediments to Future Organizing

            Paul Fussell notes, "Everyone fighting a modern war tends to think of it in terms of the last one he knows anything about.  The tendency is ratified by the similarity of uniform and equipment to that used before, which by now has become the substance of  myth." 

            So many people have been burnt by AIDS.  A whole generation of activists is gone.  Many fear getting back into the political arena after the difficulties of AIDS organizing, not the least of which is trauma.   Many associate activism with despair.  There is a profound anxiety about getting stung by that pain again.  This plays in countless ways.  Powerful anxieties, defensiveness, even attacks on other activists which seem to come from nowhere.  People do not want to get burnt again.  Many of these past traumas stem from people's very real difficulties in facing the AIDS catastrophe.  The result you get is more barriers to organizing. 

 

Trauma          

            Fear plays on memory is strange ways.  Oliver Lyttelton suggests:  "Fear and its milder brothers, dread and anticipation, first softens the tablets  of memory, so that the impressions which they bring are clearly and deeply cut, and when time cools them off the impressions are fixed the grooves of a gramophone record, and remain with you...." 

            Trauma is a vivid.  I know PWA's who would rather not leave their homes than walk outside and face the difficulties of being a person with AIDS in our culture.  The motivation to avoid pain becomes  powerful.  Aspects of trauma lie below the surface of so many of the lives of those who have experienced the epidemic.   Again, there was a 15 year period there when people were never really allowed the psychological space to say goodbye to the lost friends and cultures.   Many never found a place to grieve.  Whenever they started, someone else would die, and that old grief was put on hold.  What ensues is described as multiple loss syndrome.  The lingering result is psychic numbing. 

            Trauma grips at people in profound ways.  People fear feeling that that loss again.  So they hold it together.  The problem is, the grief never really goes away.  It remains in back of the mind, below the surface.  But it still has an influence on the way people behave, in neurotic behavior.  As long as our anxiety around the plague and its effects on our sexualities remains unconscious, people will play out grief in ways that have nothing to do with the original subject.  I remember starting to cry when I opened the paper and saw a photo of the photo of the ruins of a Chimabue destroyed during earth quakes in Padua in 1997.  I do not really think it was painting I was grieving.  But there had been another client who had died. 

            Trauma and loss often have as much to do with loss of a notion of self, order or meaning in the universe as they do with loss of people or things. As long as disease remains a part of sexuality, there will be trauma.  When world views are decimated, often the case with those who experience trauma, the world appears a meaningless place.  A state of disequilibrium may follow.  The self is a life story.  After trauma, the life story is broken.  Wall and Levy note, "a lack of narrative coherence  can have devastating consequences.   Such an experience usually results in a lack of interpersonal security, self fragmentation, and a loosening of ties to the social environment." 

 

Unsafe Worlds

            But for many, risk may be part of the disequilibrium or lack of coherence Wall and Levy speak of above.  Walt Odets suggests that unsafe sex may, in part, stem from feeling of survival guilt.  Its a difficult feeling to be the last one in the room to turn out the lights.

            Some suggest, the only way to recover from trauma is to find a space place to slowly learn how to handle the feelings of remembering.  This is made particularly difficult because the epidemic is still amongst us.  Many survivors of trauma may be coping with extreme forms of grief.  One part of this grief may stem from a feeling that one's sexuality is dirty.  I do not know if this city has found a way to incorporate the experience of HIV into its history.  Others simply do not want to talk about it.

            A primary component of treatment trauma involves integration of the  event, changes in status, and feelings that were engendered by this loss into a new coherent narrative.  When the traumatic event, however painful it might be, can be incorporated into the individual's story, then this creates meaning and order.  Wall and Levy suggest, "Narratives are used to evaluate the past in the light of the present, as models to guild current behavior, as models to guide future events and experiences."  The life story may have components of a tragedy but when they are brought into the individual's story, this engenders control.  The individual can then go on with her life. 

 

Remembering and Prevention

            Of course, there is a powerful longing inside to forget about HIV, to put it behind us.  Unsafe, in my life, has always been about  forgetting (or choosing not remember).  Certainly, there is powerful impulse to forget.  Getting an HIV blood test at 17 robbed me of a kind of innocence I was never going to get back.  The subtext of such gestures is that sexuality is stigmatized; sex was bad was the message, desire dirty. 

            Real HIV/AIDS education and prevention can help people incorporate risk reduction into a whole picture of critical decision making for people's lives.  If properly incorporated, then sex, disease, and trauma can be delinked.  But we have got to stop treating sex, even kinky promiscuous sex, like an unrealistic part of people's lives.    To the extent we over identify with persona which is only interested in marriage, the promiscuous shadow gains strength.  As long as that other desire is left out of community, then we will continue to eroticize what we are told we cannot have. And HIV rates will continue.  A holistic vision of health in which the full person can be embraced breaks this dichotomy. 

            Remembering is prevention.  All queers were once treated like outsiders.  This is not us and them.  If people are allowed to remember, this community can grow from the AIDS experience.  And we will not have to watch another generation get sick.  Freud notes, "You're not cured because of what you remember, you're cured because you can remember."  The time has come for us to learn to remember.
 

            RIP Spencer Cox, thanks for reminding us to remember. "What I learned from that is that miracles are possible, miracles happen, and i wouldn't trade that for anything. I wouldn't trade that information for anything. I don't know what's going to happen. I don't know what'd going to happen day to day. I don't know what's going to happen next year. I just now, you keep going. You keep evolving and you keep progressing, you keep hoping until you die. Which is going to happen someday. You live your life as meaningful as you can make it. You live it and don't be afraid of who is going to like you or are you being appropriate. You worry about being kind. You worry about being generous. And if it's not about that what the hell's it about?" Thanks for reminding me to try to be not only an activist but a good person.