Life After Death
December 2, 2011 5:48 PM Subscribe
"The best way I can describe our predicament to someone outside our culture is to call up the sensation of orgasm. You lose control of your destiny, and you are grateful for the loss. Time dissolves. Nothing that came before matters. You lose all sense of consequences and would sacrifice anything to safeguard the moment.
Then, just seconds later, the blighted past and an uncertain future rush back in to drown you."
Michael Harris writes in Walrus Magazine about coming of age in the long shadow of the AIDS epidemic. via utne.
[...]
“You have to understand,” he said. “AIDS was gay culture. All the big events were AIDS fundraisers. All the plays, all the movies were AIDS plays and AIDS movies. It was a complete and total obsession, driven by a barely managed hysterical fear on everybody’s part.” The rallying call was simple: “Silence equals death.” The woefully inadequate response to AIDS in the early years was due largely to the invisibility of gay culture. AIDS forced its prey to fight for their lives and dignity, which in turn spurred a rapid acceleration of gay rights.
I nodded quietly as Bryan told me about friends he had buried, as one must when hearing other people’s war stories, attention being the only appropriate contribution. One of his greatest friends had died just weeks before the drugs became available. “What happened in 1996, then? ” I asked. “How did things change when the drugs came out? ”
Bryan sputtered, the way he does when three books are trying to exit his mouth at once. “Everything changed! The whole body of assumptions everyone carried around was gone. The death sentence was gone, virtually overnight, and the disease immediately went underground. Within a breathtakingly short period, it went from being a thing everybody talked about to a thing nobody talked about.”
[...]
“You have to understand,” he said. “AIDS was gay culture. All the big events were AIDS fundraisers. All the plays, all the movies were AIDS plays and AIDS movies. It was a complete and total obsession, driven by a barely managed hysterical fear on everybody’s part.” The rallying call was simple: “Silence equals death.” The woefully inadequate response to AIDS in the early years was due largely to the invisibility of gay culture. AIDS forced its prey to fight for their lives and dignity, which in turn spurred a rapid acceleration of gay rights.
I nodded quietly as Bryan told me about friends he had buried, as one must when hearing other people’s war stories, attention being the only appropriate contribution. One of his greatest friends had died just weeks before the drugs became available. “What happened in 1996, then? ” I asked. “How did things change when the drugs came out? ”
Bryan sputtered, the way he does when three books are trying to exit his mouth at once. “Everything changed! The whole body of assumptions everyone carried around was gone. The death sentence was gone, virtually overnight, and the disease immediately went underground. Within a breathtakingly short period, it went from being a thing everybody talked about to a thing nobody talked about.”
For another narrative concerning the onset of the AIDS epidemic, I highly suggest Abraham Verghese's My Own Country : A Doctor's Story, which tells of Dr. Verghese's experiences as a foreign doctor treating the first AIDS patients during the onset. It's an interesting tale, telling of how his status as a foreigner actually helped him bridge the gap to homosexual patients, also considered outsiders in that time.
posted by kurosawa's pal at 7:43 PM on December 2, 2011 [1 favorite]
posted by kurosawa's pal at 7:43 PM on December 2, 2011 [1 favorite]
Thanks for posting this. I remember, when I came out to my parents one of the first things my mom said to me was "I don't want you to get sick." I was 11 in 1984; by the time we were covering STDs in health class two years later, I think AIDS was mentioned as a threat, but without any context that would scandalize suburban sensibility. I've never really thought about it before, but I wonder if I would have kept my sexuality so repressed, and stayed in the closet so long, if it wasn't for AIDS.
I saw Larry Kramer's The Normal Heart recently. It's like there was a war that everyone has tried to forget or cover up. A couple of weeks later, I did something stupid, and now I'm waiting through the window period until a test will tell me if my life is going to change.
posted by sevenyearlurk at 7:45 PM on December 2, 2011 [1 favorite]
I saw Larry Kramer's The Normal Heart recently. It's like there was a war that everyone has tried to forget or cover up. A couple of weeks later, I did something stupid, and now I'm waiting through the window period until a test will tell me if my life is going to change.
posted by sevenyearlurk at 7:45 PM on December 2, 2011 [1 favorite]
Great article. I'm not surprised to see it in The Walrus, as they do get some pretty amazing writers in, and their awards are well-deserved.
Two immediate thoughts right after reading it.
Silence STILL = Death.
"He doesn’t have to pay for his meds, but the price is still printed on them. We count them up and find that his pills cost more than $8,000 a month. He rubs the back of his neck and says, “People will hate me if you put that in your article. I’m a drain on the system.”" I live in Vancouver, and work and pay lots of taxes, and the answer to this non-question is No. This is what I pay taxes for. So No. In fact, fuck No. You keep on living.
posted by Zack_Replica at 8:14 PM on December 2, 2011 [14 favorites]
Two immediate thoughts right after reading it.
Silence STILL = Death.
"He doesn’t have to pay for his meds, but the price is still printed on them. We count them up and find that his pills cost more than $8,000 a month. He rubs the back of his neck and says, “People will hate me if you put that in your article. I’m a drain on the system.”" I live in Vancouver, and work and pay lots of taxes, and the answer to this non-question is No. This is what I pay taxes for. So No. In fact, fuck No. You keep on living.
posted by Zack_Replica at 8:14 PM on December 2, 2011 [14 favorites]
call up the sensation of orgasm. You lose control of your destiny, and you are grateful for the loss. Time dissolves. Nothing that came before matters. You lose all sense of consequences and would sacrifice anything to safeguard the moment. Then, just seconds later, the blighted past and an uncertain future rush back in to drown you
Sounds exactly like unprotected straight sex.
posted by pianomover at 8:55 PM on December 2, 2011
Sounds exactly like unprotected straight sex.
posted by pianomover at 8:55 PM on December 2, 2011
Sam called his mother and told her he couldn’t make it home, but refused to tell her why. He didn’t want his dad to die knowing that his son was dying, too. So in a final, desperate act of familial protection, he kept the unhappy truth to himself and left his parents wondering.
God. This part is absolutely heartbreaking. I can't stop thinking about what I would have done, had I been in that position.
posted by suedehead at 9:25 PM on December 2, 2011
God. This part is absolutely heartbreaking. I can't stop thinking about what I would have done, had I been in that position.
posted by suedehead at 9:25 PM on December 2, 2011
“I’m unlovable,” he replied.
This is where I had to stop and take a little break. This is so not true, to anyone who sees this and feels this.
I took my best friend as my husband in 1988. He was positive, I wasn't. We took the precautions but I was sure I'd die young and I was OK with that. We did good works in the community, Scot put together the first AIDS walkathon in Salem OR, we worked our asses off. It's true the focus was a death sentence, and we were trying to help prevent that however we could. Scot died in 1991, but somehow I survived.
I tried to trade my life for my love for a man who was destined to die. I'm OK that it didn't work out that way. Sounds dramatic, I know, but it wasn't at the time, it just seemed like a fact. So to anyone who fears falling in love versus HIV status, its OK, its doable, just take good care of yourselves.
posted by wallabear at 9:28 PM on December 2, 2011 [20 favorites]
This is where I had to stop and take a little break. This is so not true, to anyone who sees this and feels this.
I took my best friend as my husband in 1988. He was positive, I wasn't. We took the precautions but I was sure I'd die young and I was OK with that. We did good works in the community, Scot put together the first AIDS walkathon in Salem OR, we worked our asses off. It's true the focus was a death sentence, and we were trying to help prevent that however we could. Scot died in 1991, but somehow I survived.
I tried to trade my life for my love for a man who was destined to die. I'm OK that it didn't work out that way. Sounds dramatic, I know, but it wasn't at the time, it just seemed like a fact. So to anyone who fears falling in love versus HIV status, its OK, its doable, just take good care of yourselves.
posted by wallabear at 9:28 PM on December 2, 2011 [20 favorites]
I'm not gay, but I came of age sexually in the age of HIV. I can remember checking out And the Band Played On from the new book section of the library when I was 12 or 13, and crying while reading it. I've never had sex with someone new (or probably, in the back of my brain, with someone familiar) without thinking about HIV. And I don't think I could even begin to count the artists, writers, friends of friends, and all the other people who have touched my life who have died of AIDS.
So if HIV has framed my life in this way, I can only imagine how much more intense and visceral that framing is for someone who is gay. The shift in the late 1990s when effective treatments became available is a really important moment, and is probably at the base of why funding in the US for both treatment and prevention keeps being cut. But I think a lot of people who, like me, came of age before those treatments existed will never really believe in them, and will always live with that fear, despite (or because of) the risks we sometimes choose to take.
posted by Forktine at 11:38 PM on December 2, 2011 [5 favorites]
So if HIV has framed my life in this way, I can only imagine how much more intense and visceral that framing is for someone who is gay. The shift in the late 1990s when effective treatments became available is a really important moment, and is probably at the base of why funding in the US for both treatment and prevention keeps being cut. But I think a lot of people who, like me, came of age before those treatments existed will never really believe in them, and will always live with that fear, despite (or because of) the risks we sometimes choose to take.
posted by Forktine at 11:38 PM on December 2, 2011 [5 favorites]
When the first article appeared in the NYT about "purple spots" on gay folks, I had just moved to New York City. I was 24 and gay. Some how, I managed to have a life and lots of sex, and not get HIV.
What was really weird, no one special to me got HIV, either. A friend's partner got it, and the friend of a friend. No one I knew, as far as I knew. But still, IMO, the weirdest thing was that I didn't get it.
Only recently I did a routine search of the internet, looking to find mention of someone from my remote past. Someone I'd liked a great deal. This time, I found mention. Tragically, the mention I discovered was of his passing due to AIDS. His business partner has a site, and mentioned how his passing effected their business. A part of my heart is forever broken over this. We were in our 20's when we met. Call me silly, but I feel I could have cemented that relationship, and he'd be alive today...in spite of the near-certainty we were a bad match in the long term (he was an extremely high-end successful decorator).
Hippybear, I'm sorry, but you're mistaken. AIDS was the "entirety" of the gay community at a time, to the extent that any one thing could be. Really, it was. I lived in NYC at that time. Gay identity became so much about AIDS that I was happy to be hitched and out of the scene.
posted by Goofyy at 2:24 AM on December 3, 2011 [2 favorites]
What was really weird, no one special to me got HIV, either. A friend's partner got it, and the friend of a friend. No one I knew, as far as I knew. But still, IMO, the weirdest thing was that I didn't get it.
Only recently I did a routine search of the internet, looking to find mention of someone from my remote past. Someone I'd liked a great deal. This time, I found mention. Tragically, the mention I discovered was of his passing due to AIDS. His business partner has a site, and mentioned how his passing effected their business. A part of my heart is forever broken over this. We were in our 20's when we met. Call me silly, but I feel I could have cemented that relationship, and he'd be alive today...in spite of the near-certainty we were a bad match in the long term (he was an extremely high-end successful decorator).
Hippybear, I'm sorry, but you're mistaken. AIDS was the "entirety" of the gay community at a time, to the extent that any one thing could be. Really, it was. I lived in NYC at that time. Gay identity became so much about AIDS that I was happy to be hitched and out of the scene.
posted by Goofyy at 2:24 AM on December 3, 2011 [2 favorites]
When I was growing up in the suburbs, I knew that I was queer and left wing, and back in the day before the internet when you had no connections to anything, ACT-UP and Queer Nation were all the activist stuff you'd ever see in the papers. AIDS novels were the only novels you'd see about queer folks at the library. It's so strange because I was socialized into this activism, this worldview right in the early nineties before the drugs came out, and then everything changed, it's true.
I think my political worldview was shaped (and this has just occurred to me) a LOT by those first years where AIDS activism was this big thing and where there was this pervasive consciousness that everyone was dying, everyone's friends were dying. (And the loss to the left - it was as bad as McCarthyism, no one talks about that factor. Honestly, I wonder about those losses and the necessary focus on AIDS and the rise of the right - the loss of committed smart people obviously isn't the only factor, but we are totally down so many amazing people.)
posted by Frowner at 5:52 AM on December 3, 2011 [2 favorites]
I think my political worldview was shaped (and this has just occurred to me) a LOT by those first years where AIDS activism was this big thing and where there was this pervasive consciousness that everyone was dying, everyone's friends were dying. (And the loss to the left - it was as bad as McCarthyism, no one talks about that factor. Honestly, I wonder about those losses and the necessary focus on AIDS and the rise of the right - the loss of committed smart people obviously isn't the only factor, but we are totally down so many amazing people.)
posted by Frowner at 5:52 AM on December 3, 2011 [2 favorites]
I was in college in the early 80s. coming out and graduating from UT-Austin in 1984. I moved to DC and shortly after met several people with AIDS. One of them was one the first people to publicly identify as a PWA in the Washington Blade and Washington Post. I had this consciousness that this was what it was about: The disease and the danger were an overriding threat which, for years, in some ways, stunted my sexuality. It took a lot of work to get over that. I didn't get to see and enjoy the pre-AIDS Dionysian excess; I came out right into the heart of the storm.
Sometimes I feel that I missed out, Maybe that's bad. Maybe that's good.
There are things in this story which bring it all back to me, much like this AskMe from a couple days ago. I get the sense that for some young gay men, the sense of fear, even doom is still present; for others, maybe not.
I do believe that the 80s and early 90s were a unique time in our community. The plague years: I am glad the overwhelming emotional power of HIV is lessened now, even though there is no cure.
Now I live near Houston. My partner is currently in the hospital recovering from a quadruple bypass surgery. He has been in poor health for much of our eleven years together. How much is due to HIV? How much to side effects of the meds? How much to his lifelong Type 1 diabetes? How much (we are in our fifties) to the early-old-age symptoms some HIV+ people have? I don't know, don't know how or who to ask. His doctors cannot say. Perhaps it does not matter.
What counts, I think, is every day we are still being challenged to struggle. We still have to work hard for what we need. Yesterday he was able to walk 100 feet around the hallways of the hospital. Today he was able to walk 125 feet. Tomorrow he will walk further. Whatever the struggle, with HIV, with surgical recovery, with fear, or with any oppression, it's a matter of one step in front another. Day in. Day out. Hard. Work.
posted by Robert Angelo at 8:51 PM on December 3, 2011
Sometimes I feel that I missed out, Maybe that's bad. Maybe that's good.
There are things in this story which bring it all back to me, much like this AskMe from a couple days ago. I get the sense that for some young gay men, the sense of fear, even doom is still present; for others, maybe not.
I do believe that the 80s and early 90s were a unique time in our community. The plague years: I am glad the overwhelming emotional power of HIV is lessened now, even though there is no cure.
Now I live near Houston. My partner is currently in the hospital recovering from a quadruple bypass surgery. He has been in poor health for much of our eleven years together. How much is due to HIV? How much to side effects of the meds? How much to his lifelong Type 1 diabetes? How much (we are in our fifties) to the early-old-age symptoms some HIV+ people have? I don't know, don't know how or who to ask. His doctors cannot say. Perhaps it does not matter.
What counts, I think, is every day we are still being challenged to struggle. We still have to work hard for what we need. Yesterday he was able to walk 100 feet around the hallways of the hospital. Today he was able to walk 125 feet. Tomorrow he will walk further. Whatever the struggle, with HIV, with surgical recovery, with fear, or with any oppression, it's a matter of one step in front another. Day in. Day out. Hard. Work.
posted by Robert Angelo at 8:51 PM on December 3, 2011
Fantastic documentary chronicling this time in San Francisco: We Were Here.
posted by ao4047 at 10:23 PM on December 3, 2011
posted by ao4047 at 10:23 PM on December 3, 2011
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posted by PinkMoose at 7:33 PM on December 2, 2011 [3 favorites]