Yale alumni Christopher Glazek and Richard Espinosa were too young to experience the AIDS epidemic but they have been trying to help their alma mater remember the nearly 450 members of the Yale community who did not survive. Their Yale Aids Memorial Project started as a published journal and will move to the web this fall. … Continue reading How To Survive A Plague, Ctd
A reader writes: My friend died of AIDS on April 25 this year. Unlike themselves were attacking his organs over time. He was only nine. He is survived by his older sister and many friends who are also living with HIV. The long term survival of all my young friends living with HIV is very … Continue reading How To Survive A Plague, Ctd
More readers share their stories:
The picture one of your readers submitted, of a section of the AIDS Memorial Quilt, had one of the panels I remember seeing the first time I saw the quilt, when I was 18 and I volunteered at the quilt's exhibition in Houston during the first national tour. It's the one with the Edward Gorey quote, "Last night it did not seem as if today it would be raining." That couplet stuck with me, usually making me think of the waves of grief that came with deaths of my fellow ACT UP and Queer Nation activists, my own partner in 1994, and a dear friend who survived to the age of the triple cocktail but who experienced nothing but complications from one combination to another until he died in 2000. It's only been lately that I've been able to see that the rain that comes upon us unexpectedly can also be a good thing, washing away pain and fear that we've carried too long.
What a great thread. However, there is one notable group that you won’t be hearing from: the people that are HIV+ and don’t know it yet. The CDC says that 20% of those infected aren’t aware of it. (How do they know that?) I was one of them for awhile and thought I’d share my story.
A reader writes:
I just read your post about surviving the plague and thought of your 1996 NY Times magazine cover for "When Plagues End" that starts in a fuzzy font and becomes clear and talks about a plague where survivors had contemplated their own mortality but survived. (paraphrased). I wish you would post it on your blog.
I had torn this off and framed it for my office years ago, as it really spoke to me. I had been a 3rd year med student in 1986 at Roosevelt hospital in NYC where every abnormal chest Xray was PCP, former models were distorted by KS lesions all over their faces, AIDS dementia and continuous diarrhea made others a difficult challenge for partners who loved them still. I had also been an infectious disease fellow in 1993-5 when suddenly my patients' Tcells were magically going UP on new combinations of AZT and 3TC and to zero once we had saquinavir. I've trained younger docs more recently who hadn't ever seen PCP. A miracle.
I hadn't looked at that framed cover since a move several years ago. When I unpacked some things from storage recently I was surprised to see it had been written by you! I started being a regular Dish reader about 4-5 years ago, long after that article was written. Anyway, just wanted to say thanks to you and the graphic artist. I loved that cover.
Chip Kidd designed it. It's worth recalling that the piece was arguably the most controversial thing I'd ever written. The response was immediate and extremely hostile from within the gay community. I was wrong, I was irresponsible, etc etc. Alas, the piece didn't say what many who didn't read it assumed it said. I was fascinated by the psychology of grappling with the end of plagues – not of diseases. A plague is a widespread virus for which there is no cure and which is close to 100 percent fatal. A disease is something that can be treated. HIV went in America from being one to being the other as suddenly as in La Peste. Another reader:
We are blood brothers. I'm from NYC originally, and before my 30th birthday I had attended 19 funerals of friends who succumbed to AIDS, including my first partner. I left corporate law practice to spend most of my career managing AIDS service programs, and expected to die there. Science trumped the virus and here I am, healthy as a horse and impoverished. Except the strength, passion and friendships I developed in the AIDS community is a wealth of sorts. If there is a God, and I doubt it, he owes us an apology.
The line "1996 was a real nail-biter" hit me in the gut. My uncle died an agonizing death in January of that year after a very rapid decline in the preceding months.
A reader writes:
Whenever I see images of the Quilt, I always look for my friend Fernando Delgado, who was one of the first of my friends to die of AIDS, in 1986 or '87. Your post had an image of eight quilt panels – and one was Fernando's! This is not the first time I've seen his panel in a news story. But it's never really surprising when I do, since the man had at least four different panels! Fernando was larger than life, a beautiful San Francisco man who was still running around Castro Street and having fun long after his OIs would have forced a more timid soul (like me) to become housebound. The man was so loved, and so heroic, people couldn't stop making him panels. We've all known so many heroes. Thanks for reminding me.
The quilt is coming again to Washington next month for the first International AIDS Conference in the US in decades. Why America now? Because we repealed the HIV travel ban (thanks to Bush and Obama), and the specter of Jesse Helms' hatred was finally wiped from the law. I knew I wrote a little essay on the AIDS quilt for The New Republic. Zack Beauchamp dug it up and transcribed it. It was written in 1992. It's not available online, so I thought I'd add it to this thread at the risk of self-plagiarism, because it reveals what in retrospect was a tipping point – for heterosexual involvement in gay rights and equality. Because in family there is no gay or straight; there is simply family. Herewith a blast from the past:
A reader writes:
Had not planned to burst into tears this morning. Thinking of those early days reminds me of those first obituaries with no mention of AIDS, just the OIs which did in fact kill the person – that cynical and convenient way of avoiding, even in death, the sexual identity of the person who had died. And no lover, boyfriend, or spouse however significant was generally mentioned. Eventually the phrase "longtime companion" crept in, which seemed to me then a monumental breakthrough. Now we have marriage and a president who speaks of it. This unthinkable (to me) chapter of my generation's gay experience fills me with hope and pride. And yes, tears for those who left too soon. Thank you for posting this.
Our reader's mention of the ghastly euphemism "longtime companion" reminds me of the under-rated movie of that name and its emotionally overwhelming ending (see above). Another writes:
Your blogging on the subject of "The Plague Years" makes me mad at myself that I haven’t written more about those I lost. They all deserve that from me – the last one – but those memories hurt, as you well know. And I did not come out unscathed; while not having to deal with HIV issues, I am dealing with other health issues.
The thing is, I can’t even really talk to my partner about those times, as he didn’t come out until I met him, nine years ago. He was 34, and pretty much was the only person on the planet who DIDN'T know he was gay. So he saw nothing of the Hell we, the survivors, lived through, and only has an intellectual knowledge of that era. It is a time that has no relation to him, even though he was an adult then.
I'm not much for support groups and the like, and, while I am thankful to be alive, I owe it to my old friends to take to the keyboard and write the damned thing! Thank you for the tears and the swift kick in the ass.
Another sends the quilt image seen after the jump and writes:
I normally would have avoided this movie so as to avoid reliving the pain of losing my brother, Donald J. Morris. But you have 99% convinced me that – because you were in the mix, taking notes, and saying that this film gets the chronology right – I can trust it to help me get back some of those foggy lost years.
I tested positive for HIV a month ago. I suspected I had it, I've had several inexplicable illnesses the last six months including ear infections, tonsillitis, random fevers, anal redness and most recently shingles – which finally got me to the clinic. I'm 37 and knew that I wouldn't have shingles at this age unless my immune system was compromised by HIV. When I received the initial news "your test came up reactive" my head began swelling and felt like it would pop. I've a few ideas how I might have gotten infected, but I've never consciously had unprotected sex, and always thought I was safe. Must have been a drunk one, I guess.
I'm writing to you because I feel like apologizing. Getting infected now feels disrespectful to everyone that has worked so hard to fight this. I had all the information, I know the history, but I was reckless. It's been two weeks that I've been on Complera. One pill. Every morning. Forever. And I'll be fine. I already feel better. A lot better. My issues are whom to tell, will I be rejected by other men, making sure I never lose insurance, getting the refills in time. You've experienced things I will never know, and thanks to you and all the soldiers of the plague years my HIV status is reduced to simply a pill a day and a stigma, maybe. I'm not ready to watch that documentary, everything is a bit too fresh and I'm not so solid emotionally. I didn't mean to do this to myself and never thought it was ok to be unsafe, I have always tried to be careful. Maybe an apology is appropriate, maybe not. It happened and I can't change it now. I'm going to live. And I'm going to be fine. So I guess more importantly, I want to say thank you.
A couple of thoughts: enough with the apology and shame. They are the things we were most adamant about defeating, and I have to say that the biggest surprise of my HIV-diagnosis for me was discovering how much shame I still carried. I told my nephew once: "I'm so sorry I let you down." No one would say that with a diagnosis of, say, diabetes or cancer, even though they may be connected to behavior. So no shame and no thanks needed either. We were fighting for our own lives, as well as others'. This was not an unselfish act. Another writes:
[Re-posted from earlier today]
I've seen and read and written a lot about the AIDS plague in America, fifteen years of mass sickness and death that killed five times as many young Americans as the Vietnam War in roughly the same period of time. I was a volunteer "buddy" to a man dying from AIDS before I tested HIV-positive myself. I lost my dearest friend, who found out he had AIDS at the very moment I found out I was HIV-positive, and countless others as well. I was scared shitless for years. I remember one night talking on the phone to an old boyfriend who was in the same mess as I was: "One thing we need to remember, if we survive this," I said. "We must never forget how fucking terrified we are."
I channeled that fear into my books, Virtually Normal and Love Undetectable. I wrote the first because I didn't expect to live to write the second. The date on the preface is the day I was diagnosed. I wrote the bleakest essay of my life in 1990 for TNR: "Gay Life, Gay Death." I went to ACT-UP meetings in New York City to absorb the scene and to Harlem's projects to see a dying gay man whose main worry was that a white guy like me on his doorstep would out him in front of his entire community. I watched young, vibrant men in their twenties turn into skeletons in a matter of weeks. I wandered through the great horizontal cathedral of the AIDS quilt on Washington's Mall, and saw a wave of grief that reduced the entire scene to an eerie silence.
People forget that HIV decimated the immune system – but people actually died from the opportunistic infections. These "OI"s were something out of Dante's Hell. So many drowned to death from pneumocystis. Or they would develop hideous KS lesions, or extremely painful neuropathy (my "buddy" screamed once when I brushed a bedsheet against the tip of his toes), or CMV where a friend of mine had to inject himself in the eyeball to prevent going blind, or toxoplasmosis, a brain degenerative disease where people wake up one day to find they can't tie their shoe-laces, and their memories are falling apart. Within the gay community, 300,000 deaths amounted to a plague of medieval dimensions. Once you knew your T-cells were below a certain level, it was like being in a dark forest where, at any moment, some hideous viral or bacterial creature could emerge and kill you. And for fifteen years there was nothing to take that worked, just the agonizing helplessness of waiting to die, and watching others get assaulted by one terrifying disease after another.
In this immense catastrophe, you had an almost epic tale: no sooner had a critical mass of gay men actually come out, established themselves in urban ghettoes, and finally celebrated their humanity and sexuality than they were struck down in droves. But the next part of the story is the most amazing. We could so easily have given up in shame or self-hatred or exhaustion. But somehow, we found the internal resources to fight back. We knew that the federal government would refuse to react as they would have had this disease occurred anywhere but among homosexuals. And so we were almost a model of self-help, activism and empowerment. We had nothing to lose any more – and that unleashed a kind of gay power that is the most powerful reason, in my view, for why we have made so much progress so quickly since.
ACT-UP had its problems. It would alienate people unnecessarily; it would polarize; it would disrupt religious services; it could be a parody of p.c. claptrap (some meetings were interminable victim-fests), and tiresomely accuse almost anyone not in ACT-UP of being a murderer (yes, I was busted more than once). And yet all of this was a function of rage and will that was and is inextricable from defeating the plague.
A reader writes:
I tested positive for HIV a month ago. I suspected I had it, since I've had several inexplicable illnesses the last six months including ear infections, tonsillitis, random fevers, anal redness and most recently shingles – which finally got me to the clinic. I'm 37 and knew that I wouldn't have shingles at this age unless my immune system was compromised by HIV. When I received the initial news, "your test came up reactive", my head began swelling and felt like it would pop. The volunteer who tested me was so sweet, couldn't have been nicer. He pummeled me with info and resources and really I just wanted to get out of there and breathe, but I appreciated it and accepted everything very matter of fact.
I'm cute. I live in West Hollywood and have been quite active sexually (though dismally unfortunate romantically). I've a few ideas how I might have gotten infected, but I've never consciously had unprotected sex, and always thought I was safe. Must have been a drunk one, I guess.
I just read your post on the documentary How to Survive a Plague. I'm old enough to remember the plague years quite well. I've known people who have died. I'm writing to you because I feel like apologizing. Getting infected now feels disrespectful to everyone that has worked so hard to fight this. I had all the information, I know the history, but I was reckless.
[youtube http://youtu.be/LQbM4bb6Zpk ] Garance Franke-Ruta reflects on her formative years spent as an AIDS activist: The first time I saw How to Survive a Plague on the big screen was at its premiere at Sundance in 2011, where it was a selection in the documentary competition. I was a wreck the next day. To say that the movie … Continue reading Coming Of Age During The Plague
A reader writes:
Thank you for the How to Survive a Plague recommendation. I have tickets to see it tomorrow. I want to strongly recommend the documentary Call Me Kuchu in case you have not already seen it or covered it.