The day things changed

Posted: October 10, 2011 in book, Introduction
Tags: , , ,

It is interesting how some events, some moments are crystal clear 25 years down the road. Yet events from just last week quickly faded and disappear. There is a sign at the gym that reminds us of Cesare Pavese’s quote. “We do not remember days, we remember moments. The richness of life lies in memories we have forgotten.”

In June of 1985, shortly after the test for what was called ARC was developed and available for widespread testing, I decided that I would have the test done.

It was a tough decision on many levels. I felt that if I knew as soon as possible I could start preparing for inevitable conclusion. That I would be able to cushion things for my family and make some preparations that others I knew had neither the time nor physical strength to do when they got sick. More importantly, I had heard that they had begun testing drugs at NIH to treat the disease.

I had the great good fortune to have been born and raised in Washington DC and attending school at the University of Maryland. During my years at UM, I was introduced to NIH by fraternity brothers who would go there during breaks to test whatever drugs they were testing. At one point during this time I was pictured in a Washingtonian Magazine article on How Washington Sleeps. We would be paid $100 a day, meals and bed. Unlimited “PONG” and Space Invaders. The drugs were being tested for side-effects before going to market. By 1985 NIH had blood samples from me dating back to 1978. I thought that maybe if I did have it, I could find a cure first and not have to go through the horrors of an AIDS death. (That is a posting for another time)

The downside to testing were immense. If the people found out you were positive you were an instant pariah. You could/would get kicked out of you house, lose your job, your family and your friends. The cause of the disease and more importantly, how it spread were a huge unknown. That year one of the gay magazines noted the strange illness but said not to worry because it was probably spread by the use of poppers.  The bottom line was that people did not know and the results were often tragic. Although the test were suppose to be anonymous, no one with half a brain ever believed that they would or could stay that way. There was very serious discussions about forced roundups and camps for those with the disease.

I finally opted to have the test. Going into the test I assumed that I was already infected. There was no way I could have avoided it. I was extremely sexually active. (Buy me a few beers one night and I might give up details) (This will be a follow up post sometime). I thought I was prepared for the worst.

The testing was done Tuesdays and Thursdays nights and you were given a number to use when you came back for your results. This was to perpetuate the illusion of anonymity. The reality was that you gave a name and phone number when you registered to get the anonymous number. Two weeks passed and the night I was to return for the results came and went. I could not go back for the results. I knew in my mind what the answer was but I thought not knowing officially know gave me plausible deniability. Two days later the call came. My counselor from WWC called to find out if I was ok and when I could come in to get the test results. I begged and plead for my results over the phone so I could process everything in the quiet of my head and bedroom but he would not give in. After giving every excuse I could think of to avoid scheduling it I conceded defeat and told them I could come back. He said that I must not take that as a sign that I was positive. They just need to counsel everyone. I did not buy it. I “knew” that they called because I flunked and they wanted to make sure I didn’t kill myself right away. I cried all night. Wailing at first, then, when no more tears would come just whimpering. Zack, my ever faithful Rottweiler cuddled me. Climbing on the bed he allowed me to grand hold of him and rock myself into short periods of sleep. Never before and not since has there ever been such an intuitive dog.

The next day I drove to Adams Morgan, to the office on 18th street. Again the memory of the day is etched in my mind. A bright, sunny, warm day with a strong breeze. I was angry at the gods. I wanted rain and gloom and misery. I felt if my my world was crumbling that the world shoud suffer with me. Apparently the gods do not take their cue from Woody Allen movies.

It was closed that day but the counselor came in just for me. My very limited schedule being one of my excuses. To this day I remember the office. Everything in shades of blue. The cushioned vinyl sofa and hard plastic chairs, the rugs and wall, all shades of blue. He bought me back into an exam room with thin shear blue curtain to the outside world. He gave me a little talk about the test and the history of the test and then, after a little more small talk, came the news I was was not prepared for. My results came back a strong positive.

I was sure that this was a scene that he had repeated time and again. Even still, he seemed genuinely concerned for and about me and started telling me the phases I would go through and some of the feelings I would experience. The one thing I had not though of was the feeling of always being dirty. Somehow I wished I could wash this thing away, but I would never feel clean. I asked a few questions about options and treatments and doctor recommendations and then the big question. What’s my time line. He told me that in their experience a healthy person usually has a year to 18 months before the illness first shows itself and another six months after that until it “completes its’ cycle”. For all his practice he still couldn’t say die.

After a little more small talk and assurances that I was not going to off myself that night I stood to leave and promptly passed out. I guess my poker face got trumped by reality. I remember walking past my car and around the corner to a little park and sat and stared. Not sure at what or for how long. I just remember deciding that tomorrow would be no different from yesterday. Nothing had changed in real terms. I went home and laid on my bed with zack and pondered what I would do with my last two years. Zack decided the best therapy was a walk. I grabbed his leash and we walked. We walked from Eastern Market to the Capitol to the Washington Monument and places I don’t recall. We came home and I slept.

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