The view from here

I've always been interested in the "cultural history" of AIDS. It fits in well with my interest in it as a health care professional and general science-head. Many readers will recall that one of my all time favorite books is And The Band Played On... by Randy Shilts, an exhaustive (if biased) account of the early days of the AIDS epidemic. For me, reading it encompasses equal parts fascination and horror. I'm fascinated by the history, but horrified by the inattention that history has received and especially by the inattention that the government at large paid while it was happening.

My friend Jason recommended the documentary Silverlake Life: The View From Here to me a while back based on my interest in AIDS history. He shows this documentary in his Queer Identity class that he teaches and it always ends up being shown right around the first part of December, coinciding with World AIDS Day. For most of his students, this movie (which came out in 1993) is ancient history. Most of them now were just in the process of being born when this movie was released. For them, AIDS has always been a manageable chronic illness. It's hard for them to imagine the time when young men died from this disease every day, often alone, mostly in the prime of their life.

Silverlake Life: The View From Here is the story of Tom Joslin and Mark Massi, two gay men whose 22 year relationship comes to an end in front of a camera for all to see because of AIDS. Having both been diagnosed with AIDS, Joslin (who also taught film at the college level) started to document what would be the end of his life as a sort of "video diary." It is fascinating and heartbreaking. The documentary starts with footage from 1989 and ends mid-1990 following Joslin's death. During that time, his decline is remarkable for its speed and magnitude. He starts the documentary out as a thin, frail looking man for whom most activities of daily living are exhausting, Massi, by contrast, appears relatively healthy, especially when compared to Joslin. But this is belied whenever he removes his shirt and reveals a body covered with Kaposi's sarcoma lesions.

We see them at doctor's appointments. We follow them to an herbalist who grinds up herbs to put in a tea to be consumed every 30 minutes. They consult energy therapists and other alternative medical treatments, all in an attempt to delay the inevitable. It's hard to remember that in 1990, we didn't have the bevy of treatment options we have now. Protease inhibitors were still 6 years off so FDA approved treatments were still pretty slim. But Joslin's decline continues in spite of all of this. When he ultimately succumbs to the disease, in what is probably the hardest scene of the whole documentary to watch, we see just how wasted is body had become, how the disease had ravaged an otherwise healthy body of a relatively young man. His ribs and spine are clearly visible, as is his pelvis. These images, combined with the clearly distraught Massi providing the voiceover on the video tape ripped me in two.

I am so glad that AIDS is not the death sentence that it used to be. It is, in many ways, a more manageable illness than it used to be. It does not inevitably and rapidly lead to death in the ways that it used to. Treatment, while cumbersome, does exist although at times it's a toss-up as to which is worse - the "cure" or the disease. I would never wish for a return to this time. As I (and others) have said innumerable times, a generation of gay men was nearly decimated by this disease. Andrew Holleran compares the AIDS epidemic in the 80s to a "very nice dinner party with friends, except some of them were taken out and shot while the rest of us were expected to go on eating." The improvement in survival and treatment is, however, a double edged sword, as I think it has led us to forget how devastating the disease can be and that prevention of infection should still be the goal.

Subsequent generations would be wise to remember this, lest they be destined to repeat it. Films like Silverlake Life: The View From Here provide us with a sobering reminder of a time gone by. But it also gives us a glimpse into the how AIDS shattered the lives of those touched by it.

I'd advise anyone that wants to watch this to watch it when they can handle the images they will see. No matter how ready you think you are, you aren't ready for this. But it's essential viewing, not just for those interested in the impact HIV/AIDS had on a generation of gay men, but also for those that question the commitment that gay couples can have for each other. You will walk away from it with a much different opinion than the one you went in with.

Chronicle of a Plague

I got one of those Amazon.com e-mails yesterday that I usually trash without even opening. Well, as I was trashing the one from yesterday, I got a fleeting glimpse at the title as it made it's way the garbage. It intrigued me so much I had to go to the trash and open it.

As it turns out, Andrew Holleran is releasing a new book of essays on AIDS, Chronicle of a Plague, Revisited: AIDS and Its Aftermath. Holleran's writings on AIDS are among my favorite, probably second only to Randy Shilts. "Favorite" is kind of the wrong word as that implies that it is enjoyable, light-hearted reading. On the contrary, most of his stuff is quite depressing, as you might expect when writing about the AIDS epidemic.

Holleran wrote Ground Zero, which I have read and now, based on this book might have to pull out again. Published in 1988, it contains essays regarding the AIDS epidemic at the height of its devastation. In many ways, it's like reading horror fiction, only this time, it's not fiction. He also wrote Dancer From The Dance, which I think is pretty much considered to be a post-Stonewall classic in gay fiction. It chronicles the life and times of the gay community in the mid to late 70s, just prior to the ravages of AIDS.

I have blogged this before but it bears repeating: Dancer From the Dance and its companion novel Grief are the bookends to the horrific middle depicted in Randy Shilts' And The Band Played On. I will be picking this up once it is released, but it'll probably have to wait until the economic stimulus package comes.

20 Years of World AIDS Day

Today is World AIDS Day, as it has been every December 1st since 1987. In this day and age, it's easy to just let it go by as yet another day to be aware of something that seems to have long passed its peak. Nothing could be further from the truth. Every December 1st is another reminder to me of what, to me, is a modern day Black Death, only instead of killing in days, it takes much longer. In the early days of the epidemic, sometimes it was days from diagnosis to death, sometimes months, but rarely years. With the advent of anti-retrovirals, the life expectancy was increased. However, once protease inhibitors arrived on the scene in the mid 90's, it appeared that AIDS might become yet another chronic, yet manageable, health condition akin to hypertension or diabetes.

Boy, were we ever wrong about that.

HIV is one smart cookie. It mutates and becomes resistant. Fortunately, 2007 has been a great year for anti-HIV drugs, with new drug approvals coming faster than any year than I can remember. Two new drugs are completely novel - brand new in their class targeting HIV at a spot in its life cycle not previously exploited. This is exciting. Even though they are not cheap and not likely to get to places where they are desperately needed (i.e. sub-Saharan Africa) it is still a step in the right direction.

I've never known anyone personally that has died of AIDS, which is strange but not so much at the same time. AIDS is not nearly as prevalent in Iowa as it is in say New York City or Chicago or any other large urban area. It makes it hard to get involved with AIDS awareness as it is just not at the forefront of people's brains as it is in big cities or more populated states. But all the more reason to keep reminding people that it exists, even though you may not see it.

I will never forget that pharmacy that I drove past in the Lakeview District in Chicago that offered comprehensive HIV care to people. I always think about it when I'm frustrated with my own work and wonder where my true calling is. It keeps coming back to that. I'm in no position to quit my job, sell the house and transplant my family to Chicago, but maybe someday I will be. Certainly, it's something to aspire toward. I sometimes get frustrated with myself because I think to myself "What makes you think that the gay community would care one iota about what a straight guy thinks? And really, what do you know about what those with HIV are going through?" I suppose those are valid questions, but I guess where I come from, compassion is always welcome, no matter from where it originates and regardless of the on-the-job training that it might require. An article in JAMA last week (which I have not yet read, but want to) points to a re-emergence of the HIV/AIDS epidemic among gay men. What I expect to read is that those young gay men now were spared seeing their young, otherwise healthy friends die, which makes AIDS seem like something different than what it actually is.

As is my usual form on World AIDS Day, I will pimp what is perhaps my most favorite book regarding AIDS - Randy Shilts' And The Band Played On. If you're looking for real life horror, one need look no further than this book. If you haven't read it, read it now. If you've already read it, it is always worth a re-read. I wish I could buy a copy of this book for all my friends as it was the book that really brought the reality of HIV/AIDS home to me. I know I've told that story before, but I simply cannot tell it enough.

Another book that I highly recommend when looking back on the early days of AIDS when death came to young men (not just young men, but by an large, this was the largest group affected by it) is Andrew Holleran's Ground Zero which, while I was reading it, I'm sure many people mistook for a book about 9/11. It is basically a book of essays which may be true stories (or may not be) but they all concern AIDS in the early 80s when its diagnosis was a death sentence that would be carried out sooner rather than later. Holleran's book Grief, which he wrote recently, is kind of a view of that time period as well, but seen from the perspective of a survivor of the epidemic at the dawn of the 21st century. Holleran is a great author - I highly recommend all of his books.

But there is hope, that little sprite that flew out of Pandora's box after all the evils of the world had already escaped. And thank heavens for that.

(Note: I had to get up and do this post early as we are expected to get a half an inch of ice today. Living in Iowa for 35 years, I am no dummy. The chances of the power staying on are probably about 40%.)

Re-re-reading

I have read And The Band Played On... twice before, and I picked it up again this morning before I took Anna to dance class. And this is a bad thing because I have a book on hold at the library and a book that I only just started but am abandoning. This is to be expected, as this book grabs you from the very first page and doesn't let go of you until you finish it. I know that I have blogged this book before, but I just don't think enough can be said about this book.

The book opens by describing the death of Rock Hudson from AIDS and how it became a demarcation in American history - before that was America before AIDS and after that AIDS became a part of American history, for better or for (mostly) worse. Of course, this is completely wrong, as AIDS had killed thousands of people before Rock Hudson gave it a popular face and woke the rest of America up to a plague that was killing young people in the prime of their life. The difference is that before, instead of killing a famous movie star, it was killing what was perceived by most people as killing a part of the population that most would have rather had go away anyway.

Reading this book for the first time in 1995 marked a demarcation in my history as well. Prior to reading the book, AIDS was a casual interest in the way that I listened when it came on the news. After reading this book, I was appalled at the lack of action early in the epidemic when something could have been done, the criminal negligence of the blood industry and the unforgivable ignorance of the Reagan administration while people died by the thousands. It marked the first time in my life that I was truly passionate about something and while that passion may have faded over time, it's being resurrected big time these days. I am more convinced than ever that this is where my calling is and I am going to find a way to make it happen. I cannot move from where I live at this point in time, but it gives me something to aim for - and it also helps me deal with the daily drudgery that is what I do sometimes.

As that Post Secret postcard said so many months ago - Fuck convention. I want to make a difference.

This book never fails to get me fired up - mostly because it paints such a vivid picture of the early days of the epidemic. I get almost a visceral reaction to it - I get mad, I cry, I am overjoyed at times. No book that I have ever read has been able to do that to me time and again. (I would have said that John Irving at his best could accomplish that, but I am so over Irving that I'm not sure I'll ever be able to read him again.) What makes this book so powerful is that it is REAL and it actually happened. There is a lot of criticism of the book as being left-leaning and biased and this is inevitable - a human being cannot write about something like this an NOT be biased, especially someone like Randy Shilts who was so enmeshed in the gay community at the time. Shilts suffered hatred from his own community, with his work being characterized as "internalized homophobia." His description of Gaeten Dugas as Patient Zero has also come under considerable fire. But in the end - it's the history of the time period that he documented that remains. And it's a roller coaster ride.

If you haven't read this book, read it. If it doesn't make you outraged, check your pulse.

To say this book changed my life is not an overstatement. It's the truth.

A day late

Yesterday was World AIDS Day. It's been 25 years since the first cases of what would later become known as AIDS were reported in otherwise young, healthy gay men. And while we have drugs to help prolong life, we're no closer to a cure today than we were at the beginning of the epidemic. What a fucking crying shame.

AIDS today seems to have lost some of its status as a disease, now that it has been painted as a chronic condition that you can manage like diabetes or hypertension. Even 10 years ago, I remember some stupid guy in my class telling me that AIDS was a "Hollywood" disease - something trendy to support that wasn't as big of a problem as was being made out. To that, a resounding fuck off! The fact of the matter is that while it is no longer the death sentence that it once was, it's a different type of death sentence. The drugs are not magic bullets. They are not side effect free. I read somewhere online this week that a person who becomes infected with HIV in their early 20s can reasonably expect to live to their early to mid-40s. This reflects an incredible advance in the treatment of HIV and AIDS, but the person still has 30-35 years cut off their life!

And it wouldn't be World AIDS Day if I didn't pimp Randy Shilts' And The Band Played On which will always be the definitive (if biased) version of the early days of the AIDS epidemic. Rather than reading like a boring history text, it reads with the viciousness of a horror novel, one you truly hope is not true, but you know damn well that it is. It captures the horror and disbelief of those days with such crystal clear precision. It shows the criminal negligence of the nation's blood industry. It demonstrates the right-wing hypocrisy of the US government of the time, an administration that put an emphasis on Christian values, all the while averting their eyes from a growing public health issue, because it was primarily affecting a segment of the population they didn't give a shit about. It paints medical science in a very poor light, putting international acclaim above the good of the public.

If you haven't read it, read it. NOW. If I didn't already have two books going right now (well, really three books) I'd pick it up and start rereading it.

And go here to light a candle. Do it. Seriously.

Grief

I took a quick break from Garbageland (which, incidentally, reads a lot like Mary Roach's Stiff: The Curious Lives of Human Cadavers) to read a book that I read about on Salon. It's Andrew Holleran's Grief - and I'm not sure what attracted me to it. To be honest, it was probably its references to AIDS in the 1980s and the survivors of that stage of the epidemic. But nonetheless, I checked it out from the library -- after getting over my inital shock that they actually had something I was looking for. I tell ya, even though the Ames library is way better than the Washington library ever dreamed of being, there are days that I truly miss the Iowa City Public Library. I'm not sure I've ever lived anywhere that had a better library, or had a public more dedicated to it than that one. Granted, I haven't lived in very many places and have never lived outside of the state of Iowa, so that's not saying much.

Anyway, Grief kind of defies synopsis. If I were to try to summarize its plot, it's about a fifty-something gay guy that comes to Washington, D.C. to teach a class on AIDS and literature. He has just lost his mother. In the house where he's living, he picks up a book of letters by Mary Todd Lincoln. The juxtaposition of his grief over the death of his mother, Mary Todd Lincoln's grief (that was apparently lifelong) over her husband's death, and the pall that AIDS cast across that generation of homosexual men was the crux of the novel. Mostly, as Salon said, it was like sitting in a darkened room listening to someone tell their story. And it was fascinating.

I expected it to be a downer, and at times, it was. But mostly, it was just introspective and sedate.

Perhaps my favorite line was uttered by the narrator's friend, Frank, referencing the AIDS epidemic in the 1980s. He said:

"I used to think that the eighties were very like a nice dinner party with friends, except that some of them were taken out and shot while the rest of us were expected to go on eating."

I really enjoyed Grief - in much the same way I enjoyed And The Band Played On. While the latter was a piece of non-fiction about the AIDS epidemic in the 80s (which I'm overdue for re-reading), this was fiction about the aftermath of that. They make good companion pieces. And I have a feeling Holleran's novel Dancer From the Dance is the opposite bookend to Grief, with And The Band Played On narrating the horror of the middle.

World AIDS Day

This is the Obelisk of Buenos Aires, Argentina--and look what they've done to it for World AIDS Day (which was actually yesterday.)

It really is too bad that AIDS has dropped off the radar for a lot of people. It's still killing people, it's still spreading. Bottom line--the drug cocktail didn't put an end to it.

The book that really made the AIDS epidemic real to me was Randy Shilts' And The Band Played On. While not the most unbiased piece of journalism ever written, it is a riveting read and definitely worth the time it takes to read it. I remember how negligent our government was at the time, in large part because the disease was killing the undesirable components of society. And don't even get me started on the criminal negligence of the nation's blood industry. How many hemophiliacs died needlessly because of them? Read it. It's a great book.

In the meantime, head here and light a candle. For every candle lit, they donate a dollar to AIDS research.