Search Results For how to survive a plague

How To Survive A Plague, Ctd

Andrew Sullivan —  Jul 7 2012 @ 7:32am

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. Glazek, who began the project [NYT], was inspired by the memories of those who had lost friends to AIDS, as well his own bewilderment at the sheer magnitude of the disease's impact:

He began researching the history of the epidemic and revisiting his Yale major. "A big part of my work involved the study of collective memory, particularly surrounding the Holocaust, where you had 20 years of silence and then an explosion of interest, a memory boom," said Mr. Glazek, who in his earlier years attended the Roeper School, a progressive private school founded in suburban Detroit by Holocaust survivors. "Now the Holocaust is a standard unit of American secondary education. I started to wonder how the same thing might be accomplished for AIDS."

Espinosa adds, "What we want to make is much larger than Yale: our Web site will be a proof-of-concept model that other colleges can use." At some point, perhaps, we will find a way to commemmorate and honor the enormity of the tragedy.

Previous posts in the recent AIDS thread herehere, here, here, here and here.

How To Survive A Plague, Ctd

Andrew Sullivan —  Jun 27 2012 @ 3:37pm

A reader writes:

My friend died of AIDS on April 25 this year. Unlike 2008-taking-medsthemselves 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 much in question today, because they are poor. A decade ago life saving ARV’s were finally produced for the poor, and today they are still taking the same drugs. There are only two levels of treatment available for them. I hate to think what will happen when the kids on second level treatment start failing, and the time will come. They are dying because their medications are toxic and time limited. A new ARV option would be a major gift for them.

Now that people in the developed world have Complera, will there be another great campaign to provide similar treatment in generic form for the poor?

More on the life and death of our reader’s friend here. Previous posts in the AIDS thread here, here, here, here and here.

(Photo by Andy Gray)

How To Survive A Plague, Ctd

Andrew Sullivan —  Jun 26 2012 @ 12:15pm

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.

Another reader:

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.

I first came out in 1979, well before anyone knew what was going on. As I watched the horrific stories unfold in the early '80s, I quickly adopted safer sex practices. But I was terrified about what I had done unknowingly in the years before. I finally worked up the courage to get my first HIV test in 1990. That was back in the day when you had to come back several weeks after your blood draw to get your results. The wait was agonizing. Thankfully, I was negative.

I would get tested again in 1994, 1997 and 2002. Each time: negative. Now this schedule may not have been as regular as experts would have recommended but it was better than most people I knew. HIV testing and status disclosure might be topics at dinner parties or gyms on the coasts, but here in the fly-over state where I live, I can assure you it rarely comes up, even between the best of friends. In my entire life, I’ve only had this conversation with five people. Most only admitted to having one test. Two actually said they had never been tested at all. And this is not a small town. About 3 million people live here. It’s a very easy place to be open about your sexuality. But not about your status. The stigma is overwhelming. I can’t even repeat the awful comments that I’ve heard from friends over the years about those few other "poz" guys in our city.

In 2006, I developed a persistent skin infection. I had several office visits to my long-time primary care provider to determine what was happening. Lots of exams and lab work. On the last visit, he tested me for HIV without my consent. His assistant summoned me to his office without any explanation. Once there, he handed me a piece of paper. The test was positive. He said, "I’m sorry. I can’t treat you anymore. You need to find a new doctor." My family physician for over 20 years shook my hand and said goodbye. I never heard from him after that day.

I spent the next two months dodging the State Health Department. My state, like many, has mandatory reporting procedures. Ours is called the "STI/HIV Surveillance Program" and boy, is that an accurate name. They left messages on my home phone and sent letters to my address. The last straw was when they started coming to my house to tape letters to the door. Luckily I was able to intercept them all before my roommates saw them. I finally agreed to meet with them in order to get them to stop (but that’s an entirely different story I won’t go into).

It took six months before I had the nerve to find a new doctor and start treatment. The good news: my CD4 count jumped into the 400s and I became undetectable. The bad news: my numbers for cholesterol, blood pressure and liver were off the charts and they continued to get worse. After two years of sneaking away from work for increasingly frequent medical appointments, I finally decided to file for FMLA so I could fit them in comfortably. I emailed our HR department asking for the forms. Within an hour, my boss sent a short email asking me to meet with her and our CEO the next day. At that meeting, I was laid off on the spot. "Budget cuts," I was told. I never even got to fill out the form. Now who knows what was really going through their heads but I always thought that it must be pretty obvious when an openly gay may in his late 40s comes in and tells you he needs some time off for a bunch of doctor’s appointments and exams. (I can’t share the name of the place I worked at but let me just say you’d be shocked if you knew. You’d recognize it right away as a major nonprofit organization.)

It took me awhile but eventually I found a great new job, with amazing insurance. I’m mostly healthy these days. No one knows about my status except my partner (who is also positive). Our families don’t know. Our friends don’t know. And more importantly, our co-workers and bosses don’t know. Based on the few incidents above, we will probably keep it that way.

None of our friends, or even just the people we see socially, will admit to being positive. Although surely the odds are that some of them must be. Have they still not been tested? Or are they like us, positive but terrified to disclose to anyone.

This Wednesday is National Testing Day (June27). I wonder how many people in my city will participate. One thing’s for sure: no one will talk about it.

More stories from readers at our Facebook page. For instance:

I remember visiting my only sibling in NYC when I was in my late teens. I was living in a small New England town and didn't know anything about AIDS – guessing this was around 1986. Suddenly I was meeting all these young men that were talking about the disease, talking about bath houses closing, talking about friends getting sick. I borrowed my brother's razor to shave my legs one day and he screamed that I shouldn't ever touch his razor. Took me some time to realize why he freaked out.

Over the years I became aware that these friends of his were dying or had died. I watched my own brother go undiagnosed for the next 10 years, getting thinner and thinner and blaming his health on everything from radical diets to parasites. He was diagnosed in 1997 and at that time could count the number of remaining T cells on one hand. Drugs have saved his life, have made him able to work, travel, fall in and out of love and get ready to turn 50 in a couple of weeks. My family didn't think he would make it to 35. Of course, without healthcare and suffering from this disease makes things tough. He has chosen to live in Brazil and receives all medical care and medicine for free.

Another:

I've known several people with AIDS. I have friends from London who asked me to host a friend who was was diagnosed in the late eighties. He had never been to America and wanted to visit before he died. I was scared. I called my doctor and asked for advice. My friends flew over with their pal. We gave him the royal treatment, saw NY, Phillie, & DC. We had an absolutely wonderful time. He put a human face on something I'd only read about in the newspapers. He died less than a year after he visited.

Less than a year later a very dear friend of mine died from AIDS. He had to come out to his family at the same time as telling of his prognosis. He died before he signed his will. Even though his wishes were clearly stated that his half of the house go to his partner, his family wouldn't hear of it force him out of the house. For me that was the cruelest act of bigotry I'd personally witnessed.

I separated myself from somebody I considered a good friend because she insisted, back then, that 'the gays' brought it on themselves. In a full-throated confrontation, I told her she was wrong … that these were people's children, brothers, uncles, nephews; people who were loved and contributed to our society. This woman, who was my parent's age, glanced at them and they shook their heads no and agreed with me. One of the proudest moments of my life, that my deeply conservative parents stood up for the side of compassion and dignity, not the flaming rhetoric of the day.

Yes, my life has been affected by AIDS. It took dear people out of my life way too young. It made me a grown up. And it made me stand up for my ideals and principles in a way I'd not done previously.

The rest of the "How To Survive A Plague" thread here, here here and here.

How To Survive A Plague, Ctd

Andrew Sullivan —  Jun 22 2012 @ 2:20pm

Plaguesend

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.

Another:

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.

When there was nothing else that could be done in the hospital, my grandmother brought him home to die in his childhood bedroom. He had very strange symptoms – almost like a chemical burn from the inside out over his entire body – that may or may not have been related to the alternative treatments he pursued out of desperation. His skin was so thin and fragile it couldn’t hold an IV for the morphine drip. I was a freshman in college. I went back after the winter break and told very few people – not out of shame but because I was burning with so much anger that I feared what would come out if I opened my mouth.

And then, within a year, it was over. People just stopped dying. Former boyfriends of my uncle who had seemed to be on death’s door for longer than he had even been sick started to put on weight and make plans for the future. I saw one of them a few years ago on a visit home. He looked great. It’s hard, even so many years later, not to think about what might have happened if he’d held on just a little more or not gone to that quack or, or, or … But that’s not the way it happened.

Another:

I got to come out in those years of fear of sickness and death. I made many mistakes because of that fear, like rushing into a long-term relationship I was not ready for with a guy I was not quite compatible with, then being promiscuous enough to get Hepatitis B (probably by oral route). I joined ACT UP/Boston for a while, but got annoyed with the group. I felt like they were pushing the drug companies and FDA too fast and beyond good scientific practice. This resulted in some drugs causing harm rather than helping (like ddI and neuropathy due to too high doses).Pj36

I was struck by the second image you picked, which was clearly from the same ACT UP protest at Astra Pharmaceuticals in Weston, MA, that I first went to as a photographer for Boston’s BayWindows in 1989. I remember being astounded that the cops were all wearing latex exam gloves, even though by 1989 we knew HIV was not transmissible by touching an infected person’s skin. The protesters chanted to the cops, “Your gloves don’t match your shoes.” One of the writers on staff at the paper was dating the protester raising his arms in the picture, who subsequently died of a Hepatitis B opportunistic infection.

I’m now married to the same fellow I have been living with since 1991 (second boyfriend, hitched since 2007) and turn my cameras more often on peaceful landscapes than on protests.

Another:

I’ve been following your discussion about AIDS with interest. Some of us in the younger generation (I’m 35) were affected by it, too. My husband, who is now 30, lost his favorite uncle Ricky to AIDS in 1994, when he was only 12 years old. Ricky was charismatic and flamboyant (I’m sorry, there’s no other word) and ran an African dance school on the south side of Chicago. His sexuality was never discussed openly, though it must have been understood that he was gay – but his “lifestyle” was shrouded in shame and silence. My now-husband got his first introduction to dance through Ricky’s school, which opened up an entirely new world to him, and eventually led him out of the urban ghetto of Chicago and into a career as a professional ballet dancer. I will forever be grateful to Ricky, who I never had the chance to meet, for opening up this world of opportunity to him.

We met in 2005, when he was 23. In 2009 we were married, legally, in Massachusetts – with both of our families in attendance. Our wedding was a mixture of black and Jewish traditions, and we constructed a chuppah out of garments that had belonged to departed loved ones from each of our families, including a piece of clothing that had belonged to Ricky. As we stood under that chuppah, affirming our love and commitment to one another in front of our friends and family, I couldn’t help but think that we were fulfilling a dream that Ricky hadn’t been able to realize; that he had died – that he had been killed – by the shame and silence that we were seeking to banish; and that his family has gotten a second chance, with us, at redemption – to accept us, affirm us, love us, and not exile us to isolation and shame.

More stories from our readers at our Facebook page. The Dish thread so far is here, here and here.

(Photo by Steven Keirstead)

How To Survive A Plague, Ctd

Andrew Sullivan —  Jun 21 2012 @ 2:41pm

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:

I first saw the AIDS quilt three years ago, on its last trip to Washington, when it was only a few thousand panels in size and fit comfortably in the Ellipse in front of the White House. Last weekend, at 26,000 panels (one-sixth of the number of deaths in the United States so far), it filled most of the vast space between the Washington Monument and the Reflecting Pool. Neither experience was forgettable; and neither Aidsquilt1still even faintly morbid. Like the Vietnam Memorial, a few minutes’ walk away, the quilt has to be entered in order to be understood; a piece of interactive architecture of both public and private space.

But unlike the Vietnam Memorial, the quilt is a buoyantly colorful, even witty, monument. It doesn’t immortalize its commemorated in regimented calligraphy, its geography is not the remarkable, black snowdrift of casualties, but a kind of chaotic living room, in which the unkempt detritus of human beings—their jeans, photographs, glasses, sneakers, letters—are strewn on the ground, as if expecting the people to whom they belonged to return. People walk over this cluttered landscape, looking like tourists, caught between grief and curiosity, saying little, peering intently down at the ground. As you approach the quilt from the rest of the Mall, toward a place where tens of thousands of people are congregated, noise actually subsides.

The panels themselves are tacky and vital, and therefore more chilling: you are invited to grieve over faded Streisand albums, college pennants, grubby bathrobes, cheesy Hallmark verses, and an endless battery of silk-screen ‘70s kitsch. Unlike the formulas of official memorials, each panel manages to speak its own language in its own idiom; you have to stop at each one and rethink.

Camus suggested in La Peste that the most effective way to conceive of large numbers of deaths was to think in terms of movie theaters, but the quilt dispenses with such mind games by simply reproducing shards of the lives of the fallen, like overheard, private conversations.

Some panels are made by lovers, others by parents, friends, even children of the dead; and some are made by those whose names appear on them and speak with uncanny candor. “Life’s A Bitch And Then You Die,” quips one. Even the names themselves rebel against any attempt to regiment them. In the program, some people are identified with full names, others with first names, others with nicknames. There are sixteen Keiths; and one Uncle Keith; twenty-eight Eds; one Ed & Robert; eighty-two Davids; one David Who Loved The Minnesota Prairie; one mysterious David—Library of Congress; and one David—Happy Birthday. Some go only by two initials—T.J.; others spell it out in full—Dr. Robert P. Smith, Arthur James Stark Jr., HM1 James T. Carter, USN; others are reduced to symbols—five stars (unnamed) “commemorating five theater people who have died”; still others are summoned up by nothing but a baseball cap and an epitaph. Celebrities, of course, creep in—I counted four Sylvesters and twenty-nine Ryan Whites—but they are scattered randomly among their peers. The most piercing: Roy Cohn’s. A simple inscription: “Bully. Coward. Victim.”

The democracy of the plague is enhanced by the unending recital of names over the loudspeaker, as friends and relatives and strangers read out the death roll. The names resonate with metronomic specificity, adding an aural dimension to the visual litany. “Patrick J. Grace, Dan Hartland, Ron Lopez, Edwina Murphy, Mark Jon Starr, Billy, Kim John Orofino, Frank, Bob Flowers, Sergeant Rick Fenstermaker, U.S. Marine Corps …” Many of the two-minute recitations end in “and my brother and best friend” or “my sweet little sister” or some such personal touch. From time to time, a mother’s voice cracks over “my precious son and best friend,” and the visitors to the quilt visibly stiffen at once, their throats caught in another, numb moment of unexpected empathy. I bumped into an acquaintance. “What’s going on?” I asked, lamely. “Oh, just looking for friends.”

Just when you’re ready to sink into moroseness, however, the panels turn on you. Since this act of remembrance is one our public authorities have not sanctioned (neither President Reagan nor Bush walked the couple of hundred yards to visit the quilt), it is mercifully free of decorum. Drag-queen creations—taffeta, pumps, and pearls embroidered across silk—jostle next to the overalls of manual workers and the teddy bears of show-tune queens. There’s plenty of bawdiness, even eroticism, and a particularly humanizing touch you don’t find in cemeteries: a lot of the spelling is wrong. Many of the epitaphs have a lightly ironic edge to them, coming close to a kind of death camp: “The Fabulous Scott Tobin”; “Dennis. We Didn’t Get To Know Each Other Very Well, And Now We Never Will.” My favorite panel ornament was a Lemon Pledge scent furniture polish can.

Others simply shock you into reality: “Hopefully the family now understands” inscribed beneath a pair of someone’s jeans; “For the friend who still cannot be named—and for all of us who live in a world where secrets must be kept.” And another: “You still owe me two years, but I forgive you and will always love you. I never located your parents. Maybe someone will see this and tell them.”

The point of it all, of course, is not merely to release grief, but to affirm the dignity of those who have died so young and in the face of unique public disdain. For many of the families who came to D.C. last week-end, the event was the end of an extraordinary journey to grapple not simply with their loved ones’ deaths, but with their lives. A few short years ago virtually everyone I saw at the quilt was gay. This time the presence of families—predominantly heterosexual—was overwhelming. These were ordinary people who through their loved ones’ deaths were asserting, beyond their own sorrow, the overcoming of their own shame. Being there was a catharsis not simply of the horrors of the disease, but of the bigotry that stalked so many of those on the ground and, by association, those who reared them.

This is one way in which AIDS has surely changed America. With the collapse of the closet, a collapse accelerated by HIV, attacks on gay people are now attacks on our families and friends as well. They will no longer go unanswered. “I have done nothing wrong. I am not worthless. I do mean something,” as one panel put it. “This is my beloved son,” echoed another, “in whom I am well pleased.”

How To Survive A Plague, Ctd

Andrew Sullivan —  Jun 20 2012 @ 2:40pm

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.

Another:

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:

I’m sitting at my desk at work with tears streaming down my face.  Your words have such power and beauty.  I’ve been reading your stuff for years – I have a battered hardback copy of Virtually Normal that I bought a few weeks after it was published – and you still have the power to surprise and move me and this is some of the best writing you’ve ever done.  The line “the great horizontal cathedral of the AIDS quilt” is going echo in my head for days.  That’s what it is.  A fantastic, unexpected cathedral that is a space of sacred grief.

I visited the AIDS quilt once.  That was enough.  It’s overwhelming.  When one friend Quiltdied, his partner put together a display of all the artwork he’d done.  Pictures of my now-dead friend, young and handsome with his other young and handsome friends, playing and enjoying life and with notes of how many of them had died.  AIDS was a horror.

I’m a few years younger than you and I still recall the bone-deep terror of AIDS in those dark days of the 1980s.  As a gay teenager in a small town in Utah, all I knew was that I would die of AIDS because that’s the information we got – gay men got AIDS and died.

When I was first-year high school student, a neighbor came home and announced he was gay.  The town agreed his father and brothers were right to beat the crap out of him and send him away – after all, the people around me said, who knew who he’d infect with AIDS.  And when he came home in the 1990s with AIDS, the town agreed his parents should throw him out. When they didn’t, no one knew how to react.

As first-year college students, my friends and I discussed in whispered voices “How do you stay safe?”  “What do you do when . . . ?”  “Where can I get condoms without having to answer some nosy pharmacist’s questions?” “Who can I talk to?”  The terror was almost too much – we all wore our Silence = Death shirts on campus.  It seemed like such a daring act at the time and maybe it was.

I’ve lost only a few friends to the plague.  But it marked all of us with an inescapable belief that sex could be deadly and that fucking is an act of incredible courage.  So many lives lost.  So much suffering.  I am weeping.

How To Survive A Plague

Andrew Sullivan —  Jun 19 2012 @ 11:00pm

[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.

How To Survive A Plague” is the first documentary that I have seen that does justice to this story of a civil rights movement rising from the ashes of our dead.

It gets the chronology just right – with the false hopes and then the real progress and then the crushing news of bad drug trials. The worst years were 1992 – 1995. That was when the deaths were always at your door, when our local gay paper, the Washington Blade, had up to a dozen pages a week just for obituaries, and when I lost my friends who just missed the miracle of cocktail therapy. 1996 was a real nail-biter. Everything was a race against time; some won that race; some fell before the finish. “I just got out from under the barbed wire,” said one friend who lived just long enough to get the treatment. But he left many behind who had been hanging from the same length of string.

ACT-UP begat the research citadel went on to help guide and revolutionize it. The whole concept of being a patient was turned from being a passive recipient of authoritative men in white coats to being an aggressive interrogator with any medical doctor who didn’t know his shit. Almost all of us were certain we’d die of it. And almost all of us mastered the science because we didn’t trust anyone else to help us.

The film gets this; it shows us what today’s generation never saw: the extreme suffering of agonizing and terrifying deaths, compounded at times by ostracism, shame and family betrayal . It shows the women who helped lead the movement – Ann Northrop and Garance Franke-Ruta (now an Atlantic blogger) among many others; and it beautifully captures the manic passion of Mark Harrington and the sharpened lead at the end of the activist pencil, my old friend Peter Staley. There’s one moment in it when you forget and forgive all of Larry Kramer’s occasional excesses because of the look in his eyes. The look was determination to live. And he lived.

If you want to understand the gay civil rights movement in the last twenty years, you need to see this film. None of it would have happened as it did, if we had not been radicalized by mass death, stripped of fear by imminent death, and determined to bring meaning to the corpses of our loved ones by fighting for the basic rights every heterosexual has taken for granted since birth. No spouse was ever going to be turned away from his husband’s deathbed again, as far as I was concerned. Never. Again. For me, marriage equality is not an abstract concept. It has always been my attempt to make my friends’ deaths mean something more than tragedy. And it is non-negotiable.

I was there in Ptown at the film festival with some of my generation of survivors – Peter Staley, Kevin Jennings, David France, Tim McCarthy, whose videos of throwing the ashes of loved ones over the White House gate cannot leave my mind. We hugged afterward, my face blurred red with sobbing. It felt a little like a veterans’ get-together, we older men remembering our salad days of terror and combat. We are not free of health issues as older HIV-positive men. But they are nothing compared with the past. In that sense, we are all children of the plague, forged by it, tempered by it, and, in the words of Mark Helprin, I doubt we will ever be anything else …

… for soldiers who have been blooded are soldiers forever… That they cannot forget, that they do not forget, that they will never allow themselves to heal completely, is their way of expressing their love for friends who have perished. And they will not change because they have become what they have become to keep the fallen alive.

How To Survive A Plague, Ctd

Andrew Sullivan —  Jun 19 2012 @ 12:16pm

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.

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 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.

[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 brought up a lot would be an understatement. Maybe one day I’ll write the story of my life, and how I went from being a high school drop-out who left home two months after turning 16 to a magna cum laude college graduate and journalist after a years-long interlude devoted to fighting pandemic death. But I doubt it.

ACT UP made me and then ACT UP unmade me; it taught me to write and argue and speak and know that the world is full of exceptions and you just have to decide you are going to be one of them. But life on the other side of the knowledge of life and death meant also that by the time I was 21 I had seen and felt and experienced so much I became convinced that if I had to process one more thing —one more awful thing—I would just keel over and die. I had reached my limit, which might have been lower than that of some of the group’s other members, because I had no well of fortitude built up over time to fall back on, because, again, I’d barely had any “before” years. What I did have though was health and youth and what too many of my friends did not—a future.

And so at a certain point I made a decision to go on with my life. Because I could. But also because I had to. As Ingrid Bergman famously quipped, “Happiness is good health and a bad memory.” Most days I do not at all mind that I have forgotten as much as I have.

Love And Hate In Uganda

Andrew Sullivan —  Jun 27 2012 @ 2:22pm

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.

It is about gay rights activism in Uganda and tells a highly personal story of the people there facing incredible (and indeed life-threatening) odds to live their lives and try to prevent a legal and cultural regime from growing even worse – especially the so-called homosexuality bill that would create a capital offense for LGBT activities and also outlaw providing HIV/AIDS treatment to gays or even knowing someone is LGBT and not reporting it within 24 hours.

I saw this film last night, and it moved me to tears. It raises so many issues, including the role of the US in spreading this type of hate. It is the most powerful film about love and hate that I have seen. I cannot imagine facing the type of oppressive hatred that the subjects of the film must wake up to every day.