On January 2, 2008 a doctor who I had never seen before (nor since) gave me a drug to control my blood pressure. This drug is known to be unstable, full of surprises. On January 3, 2008 I received my surprise in the form of intensely painful, life threatening symptoms that have remained until this day. Like an animal I merely accepted my fate assuming that I would recover being that before January 2, 2008 I was a vibrant, healthy middle aged man. After three years middle age has waved goodbye as I am in the middle of my descent leading to my departure.
When days, nights continued in a relentless agonizing march, I realized that I would need help. And so started my odyssey into my body and soul and through the morass of medicine. I would need several thousand words to describe the absurd, frightening and sometimes humiliating ways that I was greeted by doctors when describing my symptoms that were asymptomatic. At first, after I described what had happened to me, a doctor’s usual response was to stop his monologue that he/she was enjoying, look at me blankly, take a count of maybe 4 seconds and then blithely continue his/her speech. That was in the beginning. As I grew desperate, the medical practitioner would assure me that my symptoms could not exist; others said I was imagining everything and that the drug that I thought caused all my symptoms was an impossible scenario. One even said I should read the “textbook” if I didn’t believe him. Another looked at me when I asked, demanded an explanation and said, “Bad things happen to good people.” I noticed that doctors all had the same business model. See as many insurance patients at one time that they could which usually involved simultaneously placing 3 patients in separate rooms while he/she spoke with the “honored” patient no more than 10 minutes. Most would look at their watches after 5 minutes to make sure they were on schedule.
My body was broken and no doctor could put Humpty back together again. I had to understand. I had to know. I traveled within where it was safe; where I was respected and loved. I found answers if not solutions. This journey I mention is the ride of my life. I am forced to examine every molecule of my breath as I climb down my own rabbit hole, only to reemerge and climb down once again, usually deeper and more painfully. This is what I needed. This is how I live. It is a full-time life in a half-time body. As my physicality withers at a somewhat faster rate than expected, my soul emits blinding sparks of compassion, and in my best moments, clarity. I have fought with God, my friends, my partner who I love dearly, with earth herself and learned about anger’s futility. I have wallowed in profound pity only to dive into daylight thanking life for all it has offered; grateful for my millisecond appearance stage center.
In short, life is brilliant even when I am crawling through its darkest junction.
Slowly competing with time, I walk the streets of Manhattan with my swollen legs and heart fighting to breathe, not knowing if I am living or dying or both. I am on my way to the small job I have been able to procure in a littered landscape of angular dreams that have mutated to opaque, lucky to be earning as old age fuses my cells. Suddenly I hear in the morning, cold December air, “Excuse me! Excuse me!” Your typical New Yorker in a rush to go. Just go. I look around to see who this guy must be and no one is the obvious caller. I look down and see a young man dressed in a suit and tie without legs, stumps for hands, manipulating himself on a primitive skateboard – a brown rectangular board with wheels on 4 sides – zooming down the street, excited to be going to work. “Excuse me! Excuse me!” his lungs joyfully exhaling.
I am reminded yet again that there is no part-time body, just a full-time life powered by an eternal soul and if you play your cards right, you will learn how to happily play the game. Each moment that “woe is me” slips into my lexicon, I remember that businessman on the skate board. He didn’t need any excuses.
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