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Apr01

The final word

Wednesday, 01 April 2015 Written by // Jay Squires Categories // Gay Men, Newly Diagnosed, Jay Squires, Living with HIV, Population Specific

Jay Squires and the long road in search of three things. Safety, Security and glorious Peace

The final word

One step at a time

I started the dance with HIV in 2012. When it happened I was desperately ill but somehow - I don't know how - I was revived. That is to say I was discharged quickly, living but broken.

I call the date I regained rational thought “Day 1" Before Day 1 I woke, I saw and I heard (I am told) but no lasting impression was made. I fancy that each moment was fleeting, soaring briefly before disappearing in flame. I have none of that time now and I may as well have been dead. I surely had no effect on the world.

When the light shone my calendar began again. I had hard work to do - I could not walk. The disease killed the portion of my brain that set me on steady legs. To step was to fall and I did that so often. My first job was to learn to walk.

How absurd! - a fifty year old man learning a toddler's skills. In April help arrived in the body of Tony, my partner's personal trainer. Tony introduced himself as the one who would make me walk. He insisted he would succeed if I cooperated. His stress on that point told me Tony had spoken with David. After decades David knew me well and he knew I was arrogant, obstinate and controlling. Could I take orders from Tony?

My $2,500 investment convinced me to try. We started so slowly. Tony stood me behind a kitchen chair, not moving, just supported in place. For a few minutes I would stand and then he would wrap his arms around me and lead me to the sofa. There he would kneel before me and take my right leg then my left, telling me to push hard against his hand to build ruined muscle. With his friendly guidance I gained strength every day.

That old ladder-back chair became my rock. In my living room, twenty feet from the door, Tony placed me behind the chair and I gripped hard. He told me to walk and I did. I took one halting step then the next, feeling a little better with each. It was not all joy. The turns at the end of the run troubled me as did Tony's demand that I walk a course that was straight and true. I stumbled and weaved. I grew frustrated and threatened to quit.

The worst was his insistence that I perform a heel-toe walk. I knew all about this from many years representing drunk drivers. A chair is no defense when the body will not cooperate. I kissed the floor many, many times.

Tony worked me three times a week. As I thought about those sessions I realized that after each I was improved, a little bit or more. Sometimes I had breakthroughs like when I first left the chair behind to walk unaided, Tony close at my side. When I reached the end of that 15-foot track I cried with happiness, convinced at last that I would walk again.

The summer of 2012 was glorious. Richmond weather can be oppressive but in that summer temperatures rarely were more than 85 degrees. Skies were crystal and the mornings were crisp. Tony decided it was time for me to step out.

I remember my first trips "off the leash" as comical. I weaved like a drunken man, I stumbled like a fool. Tony was near to keep me from severe injury but bumps and scrapes were unavoidable. I think, once or twice, I caught a grin on his face as I took a header. We must have made a sight for my neighbors.

It was July and Tony and I had been at work for twelve weeks, thirty-six sessions. I was walking distances now. I weaved still, but less. Strangely I only went right, never left. This was one the growing number of strange artifacts of my disease.

I was excited and pleased by my progress which caused my native arrogance to surface. Tony, David and I never spoke about me leaving the house alone. Driving was merely a fantasy but it was one I engaged regularly and one day I made it reality.

David was out of the house. I found my keys and swayed to my SUV. The step into the seat seemed far too tall but I made it inside. No problem now I told myself. I can’t fall if I’m sitting down. I started the motor and drove. off.

I am sorry but there was no grand adventure, no total loss accident. I drove very slowly around the block and was careful to park just where I left. It was uneventful and momentous. I won mobility. Jay was back.

The outward signs of disease faded. I regained the fifty pounds I lost. My gait became strong and I walked for miles in the summer sun. I felt good, great even. I began to consider myself healthy, “except for one thing” as I said. It seemed I had accomplished much and that I was ready for the next step. But what was it?

Understanding myself

Each day in this endless summer I would sit in my green chair on my back steps, for a while or for hours. Enforced idleness grated at first, but I came to accept it as a necessary stage. I could not expect to return to normal life immediately. I was not fully recovered after all.

Sitting quietly for hours, music in the background and no one to talk to but the dog, prompts one to thought. In those days thinking was my occupation. I thought of so many things:  world events, gay politics, the Presidential race, the farm report I heard every day on WRNL. I thought most about me.

I became my favorite topic of consideration. I ran carefully through my life, not in order but by summer’s end completely. When I settled clearly on a distant memory I examined it carefully, mining it for links to other remembrances. I wrapped myself around the story and considered not just the “what” but also the “why.” I looked at my past critically, interested but distant. I found I was forming opinions about my conduct and my life. As would be true for most people I think, many opinions were critical. No one leads a faultless life. I was invigorated by the process and looked at myself as an examiner dissecting a corpse to find the cause of death. In each dark corner hidden truth could be found.

This examination, this reflection and judgment exhilarated me. I had never done this. In my past, before Day1, I was not introspective. I led life reacting to the moment’s stimulus. I rode life like a roller coaster: up and down, fast and slow. I did not control the coaster’s power. I was along for the ride.

Now I was looking at the past to learn who and why I was. This, I thought, will show me my future. At least I could prepare for that future by learning what to avoid.

I could not latch onto one theme, one overriding goal. Now I see this as an inevitable result of this comprehensive review. I was throwing so much into the mix that it was impossible to whittle it down. Fifty years of experience overwhelmed me. 

I grew frustrated, afraid I was missing my opportunity. I thought that if I could not find my purpose and my goal this time on my ass would be wasted. My life, inexplicably given me again, would be wasted.

These thoughts ran in my mind’s background. For years I’d known that when I was searching for a word or the solution to an intractable problem my mind would shuffle the issue back where my mind would continue its consideration quietly while life moved on. Without notice the solution would eventually surface into consciousness, surprising and pleasing me.

Finding the goal

This must be what occurred in the summer of 2012 because one day, I cannot remember just when or how I was engaged, a simple thought flashed into my mind. Safety. Security. Peace. These words stayed with me and in time I realized their importance. They were my goals and they were my mantra.

It seemed the perfect solution to my quest. These words were simple, generic nearly. They could be molded to fit many meanings. They would mean different things to each person. To me they summed the whole of my new life.

Safety represented success in my battle against my disease. In that summer, despite my growing strength and feeling of well-being, I was still very ill. My viral load was only slowly responding to ARV medication. I was nowhere near undetectable status. My CD4 count stubbornly refused to top 200 - what I called the “Goddamn AIDS Line.” Winning this battle would require changes in my life as well as hard work. It must be a priority and because my disease was forever it would be a lifetime’s toil.

I understood security to fundamentally mean a life where I was protected. In summer 2012 security meant regaining my lifestyle.  My leadership position in Richmond’s LGBT community was the focus of my life before. Having lost it I was resentful and aimless. That summer I plotted and schemed. I used knowledge gained over years of work to malign those who I saw as my opponents. In retrospect I acted poorly and I was unsuccessful. My position and influence faded away.

Security has been a fluid goal for me. Today it means what I believe it always will. Security means having a home, a place that is protected and to which I have a claim. For most of these three years I did not have such a place. I do now. I am secure.

Peace. What an ideal! It is what scripture promises and what the world strives for. It is a huge concept and at the same time as small as a single man. It seems to me to be the capstone of a life, the thing most desired yet the hardest to gain and to keep. For me peace was my real goal. All else was contained within it. Peace was the freedom of a mind without pain.

Through the depths

In summer 2012 I had only begun to experience the pain that would become my life. My body was compliant if slow. My mind was troubled but seemed to be healing. If I had been asked I would have said, “No, I do not have peace. But I think it is not far away.”

This foolishly optimistic view would shortly be proved very wrong. My body managed its struggle against HIV in a way that seemed beyond my control. Bored perhaps, it began to rebel in a variety of new ways. Amazingly malignant gastrointestinal issues fought with crippling muscle failures for the title of most obnoxious. I once again had trouble with my gait and weaved so that I feared I would step from the sidewalk into traffic. These problems and others exhausted me and every day my energy would fade in the afternoon until finally I could only sit and stare.

My mind rebelled and became something I could not recognize. Thoughts and calculations once routine became impossible. I became sullen, moody and distant. My days were taken with useless lazing, my nights with frightening, endless reviews of my plight. I was convincing myself I had failed and would continue to do so. My life became a pale approximation. Dark thoughts intruded and I fought them but the fight was so tiring. Often surrender seemed the choice. I do not know why I did not make it. So often I wanted to..

I knew this was sickness and I knew my doctors were working hard to gentle it. But progress seemed impossible, happiness a goal I decided I had never met. The worst was the unremitting pessimism. I knew in the past I had been hopeful, cheerfully accepting long odds in the good fight. Now the odds seemed impossibly stacked against me. I came to know despair.

This was the baseline against which I fought. The contest pushed the line back and forth. Looking now, not then, I can see the trend was positive even with daunting setbacks. My will was strong and I willed myself to be the same. This strength won in the end.

Hope

In the last month I have reached a milestone. Today, for today, I can say my goals, all three, are met. This happened by what seems to me to be a mysterious congruence of unrelated events. Or instead perhaps my peace was planned.

Angelo and I have had a troubled married life. He has been out of control. He has physically assaulted me three times and verbally abused me dozens more. Three times I separated from him, each time meaning to make it permanent. Each time I recanted because I could not stand the man I would be if I abandoned him.

At last we found the cause for Angelo’s troubles. It was not his diabetes as we thought. We came to understand that Angelo was an alcoholic and very depressed. He swore off alcohol and I believed he would try to succeed though I am well aware of the dismal success rate for recovering alcoholics. Much more important, he was prescribed Citalopram, an antidepressant I take myself. When I began it cleared my depression. For Angelo it performed a miracle.

From time to time I have used the phrase “like a switch being thrown” to describe a sudden, abrupt change. It has always just been a figure of speech. Angelo’s reaction to Citalopram made it real and the truth. Nearly immediately after he began taking the medication his mood, attitude and outlook improved dramatically. He became consistently friendly and cheerful. He became again the man I married and not the man I’d lived with since.

We became happy, a nearly new feeling. It seemed like a miracle. Perhaps it was.

In May 2014 my father began to experience what became a series of extreme gastrointestinal attacks. The syndrome bloated his abdomen grossly. His plumbing did not flow. It was terrifying for him and me.

He was hospitalized four times before the last during January into February. During that ten day confinement we took the final step that we were told would end this trial. Dad had a colostomy.

This surgery was discussed throughout his multiple admissions but he and I resisted the idea. The idea of this surgery that would re-route his bowel outside his body was terrifying, the post-surgery implications hard to imagine. In the end we had no choice. Repeated hospitalization, physically and emotionally exhausting, would have killed him.

Today this horrible situation has given Dad and me a tremendous gift. Today he lives with Angelo and me in a wonderful house I selected for him. We will care for him in a way no stranger could. We will bring him health and strength and we hope happiness.

For me I will have a place to live that will be mine in time. My needs and Angelo’s will be met. At last I will have something useful and important to do after three years of disease-bred idleness.

On a day after I moved into our new home I woke to the sun streaming to the window. In my mind a thought formed. I had succeeded. For now at least I had achieved my goal. At the same time I had all three, Safety, Security and glorious Peace.

I have an idea how all this came to be and I will write of it in an article having a different tone. Whatever the cause of my amazing good fortune and my family’s I can do nothing but be grateful. Each day God receives my prayers of thanks with a wish for continued blessings. I have the idea these prayers may be granted.

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