it is only a diagnosis- it’s not the whole movie
as the 33rd anniversary of my diagnosis and the reality of world aids day move into view, i was invited to attend the national hiv conference in dc this december by a caregiver/colleague. i am humbled by the trajectory and velocity of my personal journey with a diagnosis. i often share with people i encounter who are experiencing the effects of a medical diagnosis , because in the beginning i thoroughly believed it was the end, and as i draw nearer to an end, it continues to feel like the beginning.
in october 1985, during an aerobics class in chicago, i became dizzy and faint, nearly falling over. i decided i needed to go to the doctor and went to dr. bernie blau, a well know gay doctor in the men’s community. he took blood and asked a lot of questions without writing down the actual answers, but only making red check marks in a column below my name. he indicated he was not writing down any possible evidence that could lead to a negative consequence due to the political nature of healthcare for gay men at that time. quarantine was still an urban myth with a lot of mileage.
it turned out that i tested positive for hiv that month. it heralded the striking of a gong which echoed through my head and my life for the next 12 years at least. my life began to fall apart.
it seems so cliche to say “i never expected to live this long”, but that is really an under statement of the actual truth. i am sure i sped up a self-destructive path that had begun in the early 70’s. the volume grew louder and the pathway became more erratic.
here is a repost of a memory of my 1st geographic which took me to southern california in 86. the tale gets more sordid as most dependency stories do, but it also pencils in some of the darkness that was renting most of the space in my head. recovery has brought miracles into my life, mostly by erasing those pencil marks that trauma and diagnosis brought to me. 14 years of recovery and 15 years of consistent medication have backlit the story and changed it completely.
“move this” 2010.
It was unbearable. He had lost himself so often that last year in chicago that he felt spun. Disconnected, suicidal, and wretched were the accessories he pinned over his heart. There had so many lost hours, so many broken promises, to himself and his friends. And his table was set with so much sadness that empty would have seemed a banquet in comparison.
He was packing up a U-Haul full of his belongings in the middle of the night. He was at his wits end and felt like he was running out of options. He had been slipping further and further beyond the lines he swore he would never cross. He had been running in quicksand for a couple of years that seemed like lifetimes.
The death of a mentor and friend, the loss of innocence, the confrontation with morbidity and with his own moral frailty pummeled him with the power of a tsunami and what remained as the tide receded was stuffed into that 12 foot moving van headed for the West Coast. Even though he didn’t know what lie ahead, it had to be better than the hell-hole he had fallen into. He had been having an ongoing midnight ménage-a-trois with cocaine and vodka so often that it had become almost impossible to tell the three of them apart.
There had been so many nightmares that swam past him during that storm in his life. Ghouls and goblins and shadows and monsters were all very integral pieces to this shattered puzzle he had become. He was headed west with no plan other than get the hell away. He had remembered a conversation with his friend Freddie about the onslaught of the virus. As their friends and neighbors slipped into oblivion around them, Freddie had said that the only people he knew that were surviving were the ones that left the city. Freddie’s words might have germinated this escape plan that was hatching.
However it came to be, here he was, standing in the driveway, piling the last of his belongings into the truck when his landlord slipped up behind him and asked if he was going somewhere. When the driver and his bestie rented the place, they had planned on living in that spectacular wicker park brownstone for as long as they could. It had never occurred to them, or their landlords, that one of these young men would fade so early and the other would be so tragically torn between following his friend and changing the odds. He certainly hadn’t wanted to talk with the landlord, but here he was, with terror in his eyes, relaying his plans and assuring that the new tenant would make things good. And the new tenant did.
Our hero remembered standing in almost the spot a year prior when he and his friend were moving into this gem of a place. Paul had been feeling oogie and looked beat. At one point he sat on the rear gate of that U-Haul and tried to catch his breath. He actually never did catch it that day. He went into the hospital and didn’t leave for 34 days. That was how. PCP, thrush, AIDS, Kaposi’s, and candida all became members of their family. Unspoken terror and uncertainty unpacked their suitcases and took up residence, too.
Once Paul died, he unraveled fairly quickly. He struggled with having dreams when his friend could not. He felt survivor guilt even though he hadn’t a clue as to its meaning. Sometimes the only option is to run. It may not make any sense. It may not even work out, but it is the only breaker in the box that hasn’t been pulled. The power is out and something drastic is required. The only glimmer of hope for his scratched up viewfinder was this U-Haul and the change it was meant to create.