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The Private War That Killed Spencer Cox

| 8 Comments
"My most courageous self, the best man that I'll ever be, lived more than two decades ago during the first years of a horrific plague... I miss the man I was forced to become."

- "Once, When We Were Heroes," 2007


AIDS did not kill Spencer Cox in the first, bloodiest battles of the 1980's. It spared him that.

The reprieve allowed Spencer's brilliance as co-founder of the Treatment Action Group (TAG)  to forge new FDA guidelines for drug approval and help make effective HIV medications a reality, saving an untold number of lives.

Spencer Stairs crop.jpgSuch triumph by a man still in his twenties might have signaled even greater achievements ahead. Instead, Spencer found himself adrift in the same personal crisis as many of his contemporaries, who struggled for a meaningful existence after years of combating the most frightening public health crisis of modern times.

Gay activists like Spencer were consumed by AIDS for so many gruesome years that many of them were shocked, once the war abated, to see how little around them had changed. Climbing from the trenches, they saw a gay culture that must have seemed ludicrous, packed with the same drug addictions, sexual compulsions and soulless shenanigans that AIDS, in its singular act of goodwill, had arrested for a decade or so.

They found themselves in a world in which no one wants to see battle scars, where intimacy is manufactured on keyboards and web sites, where any sense of community had long since faded from the AIDS organizations and now only makes brief appearances in 12-step meetings, or as likely, in the fraternity of active crystal meth addicts chasing deliverance in a dangerous shell game of bliss and desolation.

That dark allure of meth, a drug so devoured and fetished by gay men today that it is now a leading indicator of new HIV infections, enticed Spencer at some point along the way. The drug is known to whisper empty promises about limitless power and sexual escape, while calming the addict's ghosts and sorrows for miserably brief periods of time.

When Spencer Cox died on December 18, 2012, in New York City, the official cause of death was AIDS-related complications, which is understandable if post-traumatic stress, despair and drug addiction are complications related to AIDS.

Spencer believed that this connection exists. His own writings for the Medius Institute for Gay Men's Health (an organization he co-founded after his work with TAG) focus on exactly the issues that were distressing him personally: Crystal meth abuse. Loneliness. Risk taking. Feelings of confusion after years of accomplishment and purpose.

In retrospect you can read his work and break the private code written between the lines. It spells out "HELP ME."

Spencer's life during this period and beyond was difficult, by many accounts. The Medius Institute failed due to a lack of funding, defeating Spencer's effort to address mental health issues among gay men. His drug addiction spiraled and ebbed and raged again, until he finally retreated to Georgia to live with family for a few years.

When Spencer returned to New York City last September, many of his closest friends had lost track of him. There is uncertainty about his last months, and no evidence that his addiction was active, but what little medication compliance he managed had been abandoned completely, setting the stage for his final hospitalization.

Spencer Cox died without the benefit of the very drugs he had helped make available to the world. He perished from pneumonia, in an ironic clinical time warp that transported him back to 1985. It was as if, having survived the deadliest years of AIDS, having come so close to complete escape, Spencer was snatched up by the Fates in a vengeful piece of unfinished business.

AIDS has always been creative in its cruelty. And it has learned to reach through the decades with the second-hand tools of disillusionment and depression and heart-numbing traumas. Or, perhaps, with the simple weapon of crystal meth, with all of its seductions and deceits.

Yes. There are many complications related to AIDS.

To consider "survivor's guilt" the culprit behind the death of Spencer Cox is a popular explanation but not necessarily an accurate one. That condition suggests surviving when other, presumably worthier people, did not. Sometimes guilt has nothing to do with it.

For many of our AIDS war veterans, the real challenge today is living with the horror of having survived at all.

Mark



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Comments on Mark S. King's blog entry "The Private War That Killed Spencer Cox"

Dear Mark,

Spencer's death is a tragedy but in some ways I can understand how he succumbed to it. It still saddens me though. I have been living with this disease for over thirty-two years, have been actively taking meds since '87 and received an AIDS diagnosis in '93 when my t cells dropped to 21. My survival has depended on good health, close family and friends, never getting sick even when they were so low and the meds. I was in the first group of people in the AZT study, the first protease inhibitor study (Crixivan) and was also part of the SF Hepatitis Study. But not like him, substance abuse didn't play a part of my life, but what it could be compared to is PTSD. I lived in SF when the epidemic exploded and just about everyone I knew died during those horrible and tragic years. Even worse a government that refused to even act. I don't have 'survivor's guilt' but I do have to admit that the grind year after year of meds, the occasional death, a society that seems to want not to talk about it anymore and a gay community that seems to be more shallow does get disheartening. And the meds which keep us healthy, of which I am grateful, people lose sight of the fact that we still have a fatal disease that is quiet for the moment. Our own local AIDS organization doesn't feel like a place of community or friendliness, but a place where people seem to be more concerned about getting grants to keep a job. Last summer we tried to get another support/social group going, but between feeling like our agency wasn't that invested in it mostly concerning having the office open for our meetings and having a staff person present (the agency wanted the group under their umbrella), to petty personality differences between some of the members themselves, so they wouldn't show up. It collapsed. I do have to say, that other than HIV, former substance abuse was a big factor. One good thing, is that my partner and I made a good friend, so it was successful for us. So I guess I do have to say that yes, I do feel like an AIDS war veteran, sometimes I am tired of it all, was surrounded by so much death and dying that it has little impact on me anymore, and you are right about the real challenge is living with the horror of having survived it so far, but I do have a wonderful life with my partner despite it all.

Paul

Finding meaning in life is a constant for everyone, but especially for those of us who once had such a clear and compelling purpose: to fight AIDS and care for the sick and dying. What exactly do you do for an encore?

Your comment, Paul, touches on solutions: friendship, such as the one that you made in the short-lived support group, and a venue to talk about the past. I just watched "How to Survive a Plague" and despite the grief that overtook me was the feeling I was watching and speaking to old friends. It made me realize how much I need to vocalize these PTSD emotions I am having, either with my therapist or with friends who were there.

And finally, for those of us lucky enough to have it, finding life's meaning in the love of a good man (or woman) sure ain't bad, either.

I'm not a long term survivor, actually it has been less than two years since my diagnosis of aids. With a t-cell count of 9 and pcp pneumonia I discovered what it was like to be different. I'm thankful that my health is slowly improving, but coping with this disease seems to be increasingly hard. I'm a father. who worked and lived a somewhat normal life but my children now choose to ignore my pleas for contact and support. Most of my friends are no longer around because its easier not coping with the stigma attached to my disease. I started a support group that failed and most positive people I know have no concept of the near death experience I had, thanks to the drugs and people before me that fought and died for a right to live. The people today including the gay population still turn their backs on the work not finished. I recently spoke out about my disease in an article published in the local arts magazine and I'm trying to believe I did it for a cause, testing, adherence to a life of drugs, changing your lifestyle and for me going from a successful business person to living on disability. I know wonder if anyone cares? Do people believe there's an easy cure? There's not, this disease is still very real for me and the depression and anxiety is a daily fight. My doctors tell me it looks promising for me with exceptions. My therapists are more at a loss of how to deal with my changes. I seem to go through the motions of life but I'm wondering if and when my energy will give in. This may sound like self pity, but the truth is, life has become difficult. I miss being normal, and wish and hope for understanding to come along. You don't have to be a long term survivor to feel the seperating. It's here today for me and this disease is not over, and the cause is still real for some. Today, I won't give in, I'll be thankful for sites like this, for Visual Aids for allowing me to help raise funds and awareness. Thanks to the few who support us still, and if you know someone living with this disease, give them a call offer friendship and support, it means more than you may realize. Thanks, Patrick

Thanks for providing us with a glimpse of what HIV really is for some. As a long-term survivor for over 25 years , I totally get the feeling of being lost with no sense of future or purpose. I was as sick as you can get with 1 T-cell in 1995 along CMV retinitis.
What is very sad is the emotional isolation that many long term surviviors HIV have. Many I know have turned to drugs (namely meth) and/or practice reckless sex to give brief escapes from their situation. Groups today are scarce (I am just outside NYC) and from my end, a therapist does nothing but get paid to listen to one's complaints.

Thanks Joe, I'm really at the end today. Guess it's time to check into a hospital without any insurance but Ryan White while I wait for my two year grace period for medicare to begin. I understand why so many take their own life. I'm so tired of this disease. I tried Poz Mentors and can't even get a response from one of the four or five I have contacted. I give up.

Please don't give up, Patrick. I don't presume to know what you're going through specifically, but a therapist "at a loss" to help you sounds like an ex-therapist. Depression is a real and treatable condition, albeit a frustrating one for which to find the right drug combo (not unlike HIV itself).

The fact you are still searching for the support you need, and finding it here and there through the sites you mentioned, is quite an accomplishment.

Please keep at it. Yes, it's all exhausting. I hope life gives you enough pleasure, or the hope for it, to make it worth it.

To everyone living with HIV, it's not only depression that we deal with it is isolation and frustration. I have been to several therapists and none of them have had any concept of what I'm going through. It's frustrating to go to a therapist that listens but doesn't help. I've thought of suicide several times and when things have gotten to the point where I'm unsure if I can go on any further I have gone to the ER and have had myself admitted to the Psych. ward. It's a very safe place for a short period of time. I'm not a professional therapist, but I am more than willing to listen and give what support I can. Not all gay men are shallow and I am more than willing to offer support to anyone regardless of sexual orientation. You can find me in Poz personals under 10flyingmonkeys.

I have been HIV positive since 1998 and am a recovering meth addict. Spencer's death is both an irony and a tragedy . As a counselor who struggles with addiction, I can identify with the helper needing help. As Gay men we have so many unresolved issues that I see "us" as hurt little boys trying to resolve our trauma or what i call "the gay pain". Slogans like "it gets better" ignores a whole generation who is painted as having it together. I have seen so many of our community leaders who are suffering with addictions and deteriorating health that it makes me wander if there is a end to all this? It's time for our community to stop stigmatizing our gay brothers and sisters addicted to meth and start doing something about it like funding programs that are taking a realistic view of tis epidemic like Stonewall Project in San Francisco.

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This page contains a single entry by Mark S. King published on January 3, 2013 8:07 AM.

The Night Don Lemon Hugged Me was the previous entry in this blog.

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