Opinion : The Return of Spencer Cox - by Carly Sommerstein

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April 25, 2013

The Return of Spencer Cox

by Carly Sommerstein

A friend of the late activist invites you to a community discussion on improving the mental health of AIDS survivors.

Spencer Cox
Spencer Cox
Carly Sommerstein
Carly Sommerstein
My friend Spencer Cox could see into the future. In his work for the Medius Institute for Gay Men's Health (started with his good friend John Voelcker), Spencer was acutely concerned with the profound psychological impact of the AIDS epidemic and the short- and long-term effects of depression on the lives of survivors.

He wrote two fascinating white papers—The Legacy of the Past: Gay Men in Midlife and the Impact of HIV/AIDS and Living on the Edge: Gay Men, Depression, and Risk-Taking Behaviors—that artfully addressed the issues of depression, post traumatic stress disorder (PTSD), loneliness, drug use and unsafe sex practices in gay men.

His conclusions: Our brave surviving brothers (and sisters, because I believe Spencer would have expanded his research and studies had he had the chance) who are struggling need more and more-effective mental health programs to address depression not as an isolated concern, but within the larger and complicated arcs of gay life today.

His recommendations: "Improved access to mental health specialists is specifically needed for HIV-positive gay men....Unmet health-care needs are helping to create [a] cycle of crises. Longer-term solutions are called for." Though Spencer anticipated and wrote beautifully about the need for AIDS survivors to have access to specialized mental health care, he was not able to clearly see in his own life how necessary this help was.

We know this because he made a conscious decision to go off his antiretroviral (ARV) medications, tragically leading to his final hospitalization with pneumonia. And I know this because we had spoken about depression in the months before he became ill and because I spent the last days of his life with him.

Spencer loved New York City with all his heart. Upon his return after many years in Atlanta, when once again forced to smell that all-too-well-known pee odor of our subways, instead of complaining, he once exclaimed: "Ah, l'eau d' urine—bitches, I am BACK!"

He was purely happy to be "home," but that did not mean he did not have some real struggles, emotional, physical, and financial, to name but a few. He was not well enough to work yet, but his generous mother had filled a little bank account for him, so he did not have to go without food, and his meds were being paid for, yet he felt bad about not being able to treat his friends when going out.

Speaking for myself, and I know for all who knew and adored him, we were absolutely delighted to pay his way. And that boy did love a good steak dinner. But he felt he should be able to shell out even a little money. (If I had ever called Spencer "a Southern gentleman," he would have verbally thumped me, but he was that.)

The Sunday before Thanksgiving of 2012, I took Spencer out for lunch (to Chat 'N Chew!) and a movie (the Hitchcock biopic; Vertigo was his all-time favorite movie, but we were kind of "meh" on this one). Over burgers, he asked me how I was feeling and I asked him the same. We were both having health struggles and so we both answered each other the same way: Not so great.

Spencer intuited that I was struggling with low-grade depression, which he called "situational," and suggested that I seek help. (If my darling Spencer had trouble seeing clearly for himself, he could always see things clearly for me, and found me the right doctors so that I would eventually recover.)

We talked a bit about how hard it was to live "with all the veils removed," which was his way of explaining what it was like to live knowing that your health might never totally improve, that your struggle with physical pain and exhaustion may end only with your death. Spencer was struggling but he wanted to go on, most sincerely so.

The disconnect between intentionally going off his ARVs and the note of frustration and hope he wrote me the first day he was hospitalized is heartbreaking (writing was necessitated by the breathing mask he needed for pneumonia; I wrote him back as a matter of privacy as a nurse was entering the room):
Spencer: It's been such an awful 2 wks. Nothing that happens makes sense, I feel awful...

Me: How can I help you? Should I contact your mother or brother? I cannot make medical decisions for you but I will help you in any way I can. (Spencer did designate me as his health-care proxy after this conversation.)

Spencer: Not Mother yet. I will give you her #, though.

I am
Whenever I try to do something good
He stopped there. It was too great an effort for him to continue to write, so I finished his thought for him aloud: "Whenever you try to do something good, you get sick over and over again and it is so, so hard. I know, sweetie." And I held his hand for a long while.

(The piece of paper Spencer wrote this note on? An article from The Atlantic that I had printed out for him, planning to read it to him that day: "The Sex Lives of Conjoined Twins" by Alice Dreger: "Why does the topic 'defy imagination'?" I did read it to him and he loved it, of course.)

Lee Raines, a dear friend of Spencer's, told me the last time they were together, they were walking along East 14th Street in Manhattan and Spencer was belting out a show tune: "I Have Confidence" from The Sound of Music. I love the memory of that display, courageous and fun-loving Spencer all the way (he always called himself a "show mo").

I have so much rachmones [Yiddish for compassion] for his tough, long fight for health. "Unless you've been taking the full battery of HIV medication, you don't know how hard it can be to stay on your protocol," is how one friend has explained it to me. And another friend, no stranger to profound depression, explained it to me this way: "Carly, you have no idea, in the fight against depression, how easy it would be to just GIVE UP. To stop fighting."

Spencer should have grown old in the city he loved, but he needed more help. He needed more advocacy, and he had a right to that advocacy, and not only because he was a national treasure. As his obituaries state, with his work in ACT UP and the Treatment Action Group (TAG), Spencer helped push key drugs into the world, saving myriad lives.

Spencer was proud of his work, and with the Medius Institute, he sought a way to address important issues, but he could not find adequate funding to continue his work. That was something that broke his heart at the time, he would later confess to me. He was a man who in 2006 proactively saw a need, who was loved by many and whose memorial was attended by hundreds of people, but who could not find a way to reach out for the help he required.

The Bette Davis of the World of HIV did not get to live as long as he should have, and not nearly as long as Bette herself (with whom he shared an incredible toughness and with whom I know he is now smoking a cigarette and snort-laughing).

At the end of 2012, we lost Spencer Cox. I lost my darling.

Do you know someone from the AIDS Generation, perhaps your darling? Your national treasure? Are YOU that person? In losing someone dear to you or so many dear ones, is the hard lump of grief you carry some days too much to bear?

Many of our friends and loved ones may today find themselves in the same place as Spencer. We don't know nearly enough about an entire generation that lived through the Plague Years—the righteous, the joyful, the struggling as well as the thriving—and it's time to hear from them and to address their issues.

Please join us May 9 at Baruch College in New York City for a community discussion. You have a right to more and better advocacy. We are the Medius Working Group—we seek to revive Spencer's work and we seek forward motion always.

Carly Sommerstein is a senior production editor at Simon & Schuster and a freelance writer.

Search: Spencer Cox, Carly Sommerstein, Medius Institute, mental health, depression

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  comments 1 - 14 (of 14 total)    

Trey Rucker, Houston, 2014-05-28 13:36:51
I can't believe that Spencer is dead. I feel so badly about his death. I can't stop thinking about it. We had been FB friends for years, but somehow, the knowledge of his passing slipped through the cyber cracks. I have personal messages from him, asking if I knew of affordable places to live in NY because he knew, I too, was planning to move to NY at the same time as he was. And the saddest part is that we ended up living one neighborhood apart. He lived in Inwood and I lived in Hudson Heights

David, Phoenix, 2013-05-11 05:08:21
Thank you for having this event. Is there a podcast, or dvd, or streaming video available for this event. Thanks

Stephen Puibello aka Bipolarbear., Cliffside Park, 2013-05-09 11:26:02
"Spencer RIP, also know that your activism continues this Thur. as our community rally again but this time on improving mental health of AIDS survivors. I know depression very well as I dual diagnosed HIV & Bipolar.

dave, , 2013-05-07 19:02:58
God Bless you for this great work that must be done. I wish I could have known Spencer -

shortdistanceman, Atlanta, 2013-05-07 13:38:02
Spencer worked hard for as long as he could, but the disease ravages our cognitive ablities in ways no one seems to get. I have been living with it for 30 years, and I sense the ebbing of my own will to keep fighting. As finances get squeezed, and the brain slows to a slow thought every other hour, we are left to wait for the summons to the next level of being, without our failing bodies to hold us back. Optimism eventually gives way to a tired, mournful gaze into the night, remembering...

Mark S. King, Atlanta, 2013-05-06 12:53:28
Your piece is gorgeous and haunting and as relevant as Spencer's work itself. He was a man sounding the alarm about issues we weren't yet ready to face. I want very much to know how the Medius event went and how I can help going forward.

Poz since 1983, , 2013-05-02 15:00:49
Thank you for this wonderful article. I am a long term survivor, and made it through the plague and now part of "the walking dead". Most, if not all my peers have passed. I wish I could attend your meeting, but I am too far away. I wish you all well. Thank you

Michael, , 2013-05-02 09:49:34
to Mark from NYC, you're comparing apples to oranges though. Starting with AZT monotherapy and taking meds for 20+ years (often vile-tasting liquids meds in the start reformulated through the years, and lots of meds like 28-32 pills/tblspns throughout a day on crazy schedules, with lots of side effects) is vastly different from taking the improved better-scheduled meds of the last decade. Trust me, if you had to live thru the 1st 30 yrs of this epidemic with AIDS, the meds play an important role

JLW, Palm Springs, CA, 2013-05-01 14:16:55
An article about Spencer Cox's passing a few months ago caught my eye, as did this one. As a 30 yr. long term survivor of HIV/AIDS, I've suffered with depression (mild to sometimes severe) the past 15 yrs. Now 60, I struggle with issues of aging on top of the physical, mental/emotional & financial havoc from AIDS. I too contemplate giving up the fight by discontinuing ARV as I find minimal support or understanding for what I've been through & live with. Thanks for continuing Spencers's work!

tony, New York, 2013-04-30 21:39:27
I have been living with HIV over 3 decades now and now it's getting to me..don't leave the house except for MD appts ..many things it has affected..I spoke to my shrink and am willing to see others in group that are also long term ..just to see how they cope..thanks TC(NYC)

Neil MacINNIS, Toronto, 2013-04-30 12:45:30
Thank You Carly - you have no idea how much your words mean to me - there is an alarming and conspicuous absence of debate in HIV/AIDS communities concurrent with enormous pressure on gay men and women to conform to the dictates of big pharma & big gov't. (including medical doctors) who ultimately direct and control the flow of services and who receives them through the ASOs - it is my observation that many HIV+ persons are living/hiding in fear for their very lives.

Frederick Wright, Coachella Valely, 2013-04-25 21:27:32
I am thankful for this man's works. I had never heard of him before his death. Being of the HIV generation for 25 years I did not live in the Plague Years of Knowledge for I was merely 25 when I learned of AIDS at my initial testing and first gay partner experience in 1986, so a HIV generation man. This helped me a lot in my walk for I merely had to experience the last wave of deaths, although I experience the nasty opportunist in action as one by one of the older men died of AIDS. Still Sad.

Mark, NYC, 2013-04-25 19:43:48
Thanks for organizing this - it's an important discussion we need to have. I do want to comment on this statement, however... "Unless you've been taking the full battery of HIV medication, you don't know how hard it can be to stay on your protocol" That's not true for many people with HIV. I've been on HIV meds for six years, and other than the hassle of having to remember not to miss a dose, there's nothing hard about it for me. So it's not always about the meds themselves.

Dianne McGee, Glasgow,UK, 2013-04-25 17:11:35
Was very moved by this personal testimony to a friendship. Was aware of Spencer because I am a Facebook friend of Abby Tallmer. What a wonderful, life-giving image to think of him walking on east 14th street, was it? Singing "I Have Confidence In Me" from The Sound Of Music. Everything I have read about him makes me feel some empathy. He must have been so vivid in life.

comments 1 - 14 (of 14 total)    

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