How To Survive A Plague

Saturday night, the pups and I sat on the sofa wrapped in a quilt my dad's wife made for me and queued up the Oscar-nominated documentary How To Survive A Plague on Netflix. I was in for a ride down memory lane.

The film, like my quilt, was pieced together - from news clips, archival footage, and personal videos, tells the story of AIDS Coalition To Unleash Power... ACT UP. Although the story starts in 1987, a few years before HIV entered my life, after watching the film, there's no doubt it tells a story of a life lived by many, including myself.

"It's like living in a war. All around me, friends are dropping dead. And you're scared for your own life all at the same time." - Peter Staley

The Old Executive Office Building in Washington D.C.

I was never a member of ACT-UP. Only participated in one group sponsored event - a Kiss-In on the MAXX in Portland. I was less an "activist" and more an "educator." The closest I ever came to being an activist was meeting with Diane Feinstein and making a "statement" by wearing my wrinkled white oxford shirt, 501's and black Doc Martens. You see, I worked within the system. In many ways, with the path I'd set out on, I couldn't take the chance of creating public disturbances, working on the fringe, or getting arrested. My work was within the public school system and they often frown on allowing people with arrest records speak to their students about controversial subjects. And one year, after being invited to a cocktail party with U.S. Senators, Congressmen, and the country's first AIDS czar, I saw many invitees fail to pass the security clearance necessary to gain entrance into the Old Executive Offices - the Vice President's Offices - where the party was held. As we mingled with the leaders of our country, many of our brothers & sisters in arms were barred from the event and gathered out front in protest.

"As difficult as the time is for us, I like being alive." - David Barr

Me, a phone, and an Apple IIE, trying to save the world
at my desk at Cascade AIDS Project in 1995.

Although I wasn't active in ACT-UP, I still lived a life similar to that portrayed in the film. A young man, infected with HIV, working with friends to fight a battle we never asked for. As I opened doors in the community and did what I could to prevent others from being infected with HIV, ACT-UP took things to the next level and fought the bigger fight - working with, and against, the government, the FDA, the CDC, and the pharmaceutical companies for funding, treatment and official recognition of this disease. But watching this documentary, what surprised me the most were the little things about that time which may not mean much to you. Things I haven't thought much about in many years. Like PWA's. Back then, we were surrounded with People With AIDS (PWA's). Now, maybe because I no longer work in the field or because that phrase isn't used much anymore, I was taken back when the acronym popped up in the film. Then there's the scene of a man utilizing his Hickman Port - a chest catheter implanted to deliver IV medications. Haven't seen one of those since 1996 when my friend Paul passed away. And the illness - the frail bodies - the blindness - the KS lesions - the dementia. I guess there's a reason I haven't thought about all that in a long, long time.

"It ends with everybody dying. Will the last person alive in Chelsea please turn out the lights." - Spencer Cox (1968-2012)

(Gay, my mentor, talking about the work we did in the early 90's - and giving me a shout out around the 1:30 mark)

"Ninety-three to '95 were the worst years. It was a really terrifying time....And then we got lucky." - David Barr

But this isn't about me. It's about the movie. Which, in a weird way is about me. And us. Those of us who lived through that time. And I don't know how to describe it. Y'know, I have to fall back on that old saying, "You had to be there." Far too much to explain. Too many stories to share. Memories to recall. Lives to honor.

"Y'know, like any war, you wonder why you came home." - Peter Staley

This is a crappy blog entry. Sometimes emotions take over and the stream of consciousness makes it too difficult to write anything coherent. But if you want to know what it was like for us, and you have Netflix, queue it up. How To Survive A Plague. No amount of blogging will be able to communicate what was presented so well in this film. It's only a small part of what happened back then but take a step back in time, and view the world from my perspective - the world I lived in in 1991... '92....'93....'94 - all the way through 'til the Lazarus Effect brought to us with the introduction of the Protease Inhibitors in 1996. Just watch it. Share it. Talk about it. Keep the conversation going. Back in those early days, we worked hard to start the dialogue - and we can't let it end until there's a cure.

"I still find it very difficult to plan for the future and/or accept that I will have a long life. Which is unfortunate because I've had a long life and have been living with AIDS for 20 years." - Gregg Bordowitz



"There are heroes. There are legends. Then there are these people who saved my life." - Me