If I could pick one thing that I have always had an abundance of, I would say it is hope. I have left many impressions on those around me, some good and some not so much, but most everyone saw me as optimistic. As life kicked me to the ground repeatedly, often at my own request through stupidity, ignorance and drunkenness, I got up and dusted myself off and looked to tomorrow to be a better day. It wasn’t forced, it was just how I was. My glass, usually containing beer or scotch, was usually half-full and always refillable.
I came to rely on my optimistic nature as I became sick. Despite being diagnosed with a potentially life-altering (and possibly ending) disease in my early twenties I refused to let it define me. I cruised through my twenties at a frenetic, often drunken state and really never gave it a thought. When I had a “episode” of peeing coca-cola colored urine, searing lower back pain, severe fatigue and bedrest I was of course reminded in the starkest of ways. But when the symptoms went away I pushed it to the back of my mind again.
In my thirties my disease progressed. My “outbreaks” were more frequent. I was forced to face up to it more often. In the interest of protecting my family from worry and my employers from firing me, I tucked it deep down inside. I then added denial to the mix, because “not thinking about it” wasn’t doing the trick. I still had so many things to accomplish.
Despite being in crushing debt I was hopeful that a big break would come so I worked crazy hours to make more money. All that I achieved was higher blood pressure and the knowledge that no matter how much I made my wife was spending it as if she was a drunken sailor with a fist full of Viagra.
My higher objective was to make the best possible life for my family. The hours, the career changes, the constant worrying about money was in the interest of making sure that my family had everything they needed. My larger hope would be that I could somehow save something for their future. Alas, that was not to be either.
I cruised through my thirties on my rocket ship of denial, fueled by hope. I even entered my forties with just a few outbreaks. Then, at age 41 I was told that a transplant was definitely in my future, there were no other options. I was initially floored. I will admit that there was a emotional breakdown involved. When you avoid crying most of your adult life you are only sticking your finger in the dyke. Eventually the dyke will burst, and this one did. But just like that, I was over it and I was overcome by a powerful and inexplicable sense that this it work out. I had a deadline, and that was to avoid dialysis at all costs. It was my father’s influence on me, he always, to a fault, said that “everything will work out, it always does.” My Dad had a shit life, but he had an abundance of hope.
In my late 40’s, teetering on the edge of dialysis and in the hospital again with a renal-related infection, I was told by my boss that in my absence from work a co-worker had stepped up and offered to be tested for donation. A girl that I barely knew. I had hope. I was told that the odds of her, my only donation offer at this point, being a match were slim.
She was a perfect match. Hope wins. Despite the odds.
We did the surgery 4 months later. I came out of the surgery like a bull out of the gates. I was full of energy, the desire to be better at what I knew, and to tackle those things that I didn’t. I committed myself to recovery. I was back at work in 33 days, that has to be a record. My doctors told me to take it easy. I told them to get lost.
I mountain-biked with the big boys. I set a personal best on the bench press. I lost weight. I joined a charitable fraternity and paid it forward. I got propositioned by a smoking hot 27 year old Latina at work. Things were great. Well, my marriage was still a train wreck and my finances were in a shambles but I felt great. This continued for 5 years. Then one night, while serving a charity dinner, I suddenly cramped up and was unable to stand. I knew what it was. The next day my doctor confirmed that my new kidney was failing.
I was crushed. I felt betrayed. How could they have not told me that my disease could return? I felt that I had been given false hope. It was only later that I realized that if I was told the potential of failure I may not have tackled life post-transplant as I had. I may have just sat on my ass and waited for it to happen.
When I got divorced, moved in with my mother and applied for disability I pretty much lost hope. The last year has been a year of hibernation. I miss my family, I miss my friends and I miss working. I miss tackling each day like a warrior.
Then, last month I was fortunate to be offered the prospect of another transplant. Again, I have hope. Yet I am cautious. I am nervous. I find myself withdrawing from my friends and family. I am haunted by the prospect of it not happening, or not working out. Every day, every Dr visit is part of the waiting game. I am deathly afraid of false hope.
That’s why I have been posting poetry and dabbling with my “Jack Valentine” saga. I am dabbling in the fantasy world to avoid reality. Writing about my real life, as I have always done with a modicum of success, seems out of reach.
Maybe I need more of the one thing I have always lacked.
Patience
The Tao of Bill 