Nice Article on Sean Strub and Longterm Survivors of AIDS
Sean Strub is featured in the NY Times. He created POZ magazine and was an early AIDS activist, one of the few who survive, and I met him a couple of times during the New York/TLS days. POZ did a really nice feature story about me, "Living in the Bonus Round" (both as the title of my online diary and as a phrase I coined) and The Last Session, which was making its New York debut. (And then, in the next issue, the critic panned us. Oh well.)
If not for people like Sean, I wouldn't be alive today. He retired from activism shortly after receiving the Bonus Round diagnosis that he would live. (Every issue used to feature a report from Sean's doctor. It was one of the most educational and illuminating parts of the magazine).
From the article by Michael Winerip:
...by the time he was tested and his disease formally diagnosed it was 1985. “The doctor held my hand, looked into my eyes and said, ‘Sean, these days you can have a good two years.’ He was trying to cheer me up.” That doctor, Nathaniel Pier, died of AIDS, as did another who treated Mr. Strub, Dr. James Nall.I was on the road as a musician in those days. The "gay cancer" wasn't really on my radar. All I knew was hotel rooms.
Five of the six men he had roomed with in New York City during the 1980s, including Andre Ledoux, Michael Misove, Bob Barrios and Paul Friedman, died of AIDS.Early on, Mr. Strub helped support himself by building mass mailing lists of people involved in gay causes. (“If a gay travel agency went out of business, I’d buy that list.”) In those pre-Internet days, his lists made him invaluable for fund-raising and political activism as he joined groups like the Gay Men’s Health Crisis and Act Up.
This moment for me happened in real time during the writing of the original online diary, which you can access from this blog. I believe the drug arrived, for me (late because of a screw-up in some office -- almost too late) in May of 1996.
And then in January 1996, protease inhibitors that stopped H.I.V. from replicating were approved by the Food and Drug Administration; Mr. Strub started on a daily dose of 16 pills.
In one week, he felt better. In a month, others noticed.
Then, I began documenting when I'd gain a pound. The transformation was almost immediate.
Funny, before I read this article I thought of a song I hadn't sung in a very long time. It was called "Lazarus," but it's not the "Lazarus" from New World Waking. It's on the "Bonus Round Sessions" CD. It's about feeling betrayed by death, after it had soothed me for so long with his promises of sweet comfort and respite from the pain.
“For the first time I thought I’d be alive in a year,” he said. “My planning window changed.” He bought a new suit, visited the dentist again.
He worried that the drugs, like others he had taken, would stop working. But as lesions disappeared, the weight returned, his energy remained good and time passed, “I crossed the line.” He grew accustomed to good health, though he’d changed. “I was more reflective, grateful, guilty, thinking about the ones who were so close, who’d made it to ’94 and ’95 and just missed being saved.”
Sometimes it felt as if he was the last one out before the building collapsed.
The first "Lazarus" was written shortly after I received my "you're gonna live" diagnosis in the summer of 1996, just as we were finishing up the last performance of the month-long workshop here in Los Angeles. I remember I stood on the stage and revealed that I had pulled the I.V. tube out of my arm that very day.
Sean Strub, however, at just about that time, retired from the scene. Ironically, he moved to Milford, Pennsylvania, a place Jim and I lived right after we decided to make a life together. Stunningly beautiful but economically depressed, Milford is a town up in the Poconos. Sean bought an old hotel there and began promoting the area as a bed and breakfast haven for people who love trees and fresh apples and all the lovely things one finds in forested hills. (We left there in the late 80s to come to Los Angeles).
You know, it just occurred to me that someone from the town told us that "some gays" had bought the place. I never put two and two together. Isn't that funny.
But now Sean has moved back to Manhattan.
That's probably natural. When you share things in common, especially a disease, you have instant common ground.
So many longtime advocates he’d known from the ’80s and ’90s now suffer from substance abuse and mental health issues like depression, that he has come to think of these problems as a form of post-traumatic stress caused from being so immersed in death.
The book that most brings back the feeling of that time to him is not about AIDS, but about Vietnam: Michael Herr’s “Dispatches.”
“You lived never knowing who would die next, where the next bomb would go off,” Mr. Strub said.
It’s probably a sign of his own trauma that as bad as things were then, “I miss the camaraderie the epidemic created,” he said. “An incredible clarity of purpose. An incredible sense of community.” He finds making new friends easier if it’s someone H.I.V.-positive.
Having moved back to Manhattan, he's witnessing the aftermath of the war. He's working with people again and giving them the benefit of his experienced life.
When we get to New York next month, I'll try to hunt him down, cuz it occurs to me that I owe him a great, big hug. Glad to have you back on the scene, Sean.