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Newly Diagnosed

Oct15

The ashes of memory

Wednesday, 15 October 2014 Written by // Jay Squires Categories // Gay Men, Newly Diagnosed, Jay Squires, Living with HIV, Population Specific

Jay Squires fills in the blanks in his past. “My disease, diagnosed in early 2012, wiped my memory of that time but for isolated, painful events.”

The ashes of memory

In 2010 I was at my personal and professional peak. I closed my third year leading the organization I founded, the Gay Community Center of Richmond, (Virginia) having built what I was hired to build. I was well-paid for this job. In fact I was the highest-paid LGBT professional in the state.  I had a relationship which had lasted 23 years and while it was rocky at times it was stable and comfortable. I had my health, or so it seemed. Then I lost it all and I could not remember why. 

Today the year 2011 is blurred.  My disease, diagnosed in early 2012, wiped my memory of that time but for isolated, painful events. I have worked to reconstruct my past through detective work. I have examined and parsed photos. I have spoken with my doctors, my family and my friends. My goal was to paint a picture of this year, the year I rode a straight downward path to deathly sickness. AIDS was the cause and I was in its grip throughout that year.

Can you imagine how strange it is to have a hole in your memory, one more than 15 months long? How would you reconstruct your past? The hole plagued me, constantly in my thoughts. To clear these thoughts I needed answers.

I went about writing my past like the lawyer I am. I handled the job as I would investigate the facts of a new case to be tried. Investigation, deduction and logic wrote the script.

My work began with photographs. In my position I was photographed regularly. Over a decade I have assembled an archive of over 6,000 photos, many taken by me, others by colleagues, friends, acquaintances or strangers. This cache provided evidence I needed to reconstruct 2011.

When I assembled the photos featuring me in chronological order I could chart my decline. Month to month my image changed. At first robust and healthy, steadily I became a different person. My visage became gaunt. In photos from a trip to Palm Springs I was unnaturally thin. My camera accurately recorded the pallor masking my face. Steadily I became less.

One small set of photos shot in late autumn, 2011 is the most terrible. In six shots, sort of "proto-selfies" taken with the fine camera equipment about which I write so often, I shot full body pictures of myself. First clothed in a T-shirt and a speedo suit, then shirtless and finally nude these pictures leave no doubt of my condition.

What I saw when I discovered these shots shocked me because of their content but more because I had no memory of the shoot. My image was emaciated, gaunt. I most resembled the victims of state-sponsored persecution or of famine we have all seen. But I do not remember and while I certainly must have viewed them they spurred no action. Why did I take them? What did they mean to me? There is no answer.

In August, 2012 about six months into my recovery I visited my GP, Dr. T. As we spoke he told me of another appointment, in January 2012. Then he drew blood for an HIV test, after shaming me into agreement. The results were returned several days later and then he called me back to his office. In that meeting he told me I was HIV positive. I remember neither meeting. Dr. T told me he then he recommended treatment options but I know I took no action, not because I remember but because my decline continued until I was hospitalized in late February, delirious and unable to walk. Why did I ignore his advice? This is a question that I thought would haunt me always.

I mined other clues with the help of Dr. T and my HIV specialist Dr. B. In June, 2012 Dr. B and I discussed the topic of my progress in recovery. After congratulating me on my progress his tone changed. He said that I was doing surprisingly well but then he gently added the statement that frightened me. "When I met you I did not think you would survive."

That meeting is one of my first "new" memories. I have thought often of his blunt, factual statement. Doctors don't mince words I learned. I did not know what to do with the comment, though. It simply simmered in my subconscious.

"He said that when we met for him to give me my diagnosis he believed I would soon die."

Just today I met again with Dr. T. As we have before we reviewed my progress. I was excited to tell him of my latest test results: again undetectable with a CD4 count at its highest since my diagnosis. I believe I am doing well and he agreed. What he said next chilled me to my core. He said that when we met for him to give me my diagnosis he believed I would soon die.

This bare, frank statement shocked me and confirmed Dr. B's statement of more than a year before. I was closer to the truth.

From the moment I regained rational thought I set out on a vendetta against my employer that fired me one month before my diagnosis. I was righteous in my criticism and prided myself on the knowledge that it was strictly factual and provable by objective evidence. I railed against slights I suffered, real and galling. I told myself that by telling the truth, by complaining about wrongs that would offend anyone, I was in the right. I believed I was doing my community a service by telling it of my employer's faults. I rested on my reputation and rode it like a steed.

I knew I had been fired unjustly. I knew my accomplishments through 2010 were real. I disregarded 2011 because I remembered none of it. This was my critical flaw.

As I grew to some understanding of my life in that last year of it I finally came to the truth. The evidence revealed a man in steady, steep decline. By the end of the year it depicted a man who certainly was incompetent to do the work he was paid to do. I realized that by then my employer gained no value from its bargain with me. I surmised this from what I found. The logic was inescapable.

For more than two years following my discharge the Board of Directors that fired me refused to give a reason for their action. In the last six months, I have obtained the first concrete idea of that reason from the two board members who delivered the letter releasing me. After pushing both each said it was "performance based." Of course it was. It must have been.

These pieces- the photos, the comments and the inescapable conclusions drawn from them have answered important questions about my path in 2011. These clues filled in the critical part of my unremembered past. They brought me comfort in knowledge but not absolution. I remain the author of my fall. I remain the cause of my disease. Yet I feel I can now move on beyond the driving need to reconstruct my past. I have learned enough. I am at peace.

I know that many people living with HIV feel that over-examining one's past is counterproductive, perhaps harmful. In general I agree but I had no past to examine. I had to find it before I could put it aside. I am grateful I spent the effort to learn what I did. I needed the truth and I believe I have found it.

From the start of my conscious recovery I have made a vow to begin a new sort of life, different from the one I lost. I believe that through fits and starts I have lived by that vow. I am different than I was and I believe the difference is better, in the main.

My change is continuous. I know now it will never end. This act of discovery has aided me by giving me more knowledge of who I was. That man is dead and unlamented. But the knowing of him has strengthened me.

I am well today. It is time for the next challenge. There are so many. 

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