Please bear with me today, but this is written for someone I dearly love. The ALS diagnosis and news of my first child fell in the same week. After recovering from the shock of the death sentence I was more gung-ho than a Marine fresh out of Parris Island to conquer this disease. My resolve would soon be tested. I was not immune from the disease progression.
While my body deteriorated into a useless hulk I fostered an extremely dangerous and foolish thought. This perspective ripe with peril was if I used adaptive equipment, leg braces, canes, crutches, wheelchair, I would give into the disease. Looking back I was desperately hanging onto a familiar way of life.
I allowed self-pity to take control wishing I was anyone but me. Watching buddies take tremendous strides professionally as I sat at home with my thoughts was the bitterest of pills to swallow. Retiring from Domino’s Pizza Inc. and having watched the parade of incompetent boobs in upper management be discarded I knew I could run the company was salt on the wound.
It was not long before self-pity morphed into anger. The anger is more regrettable than the disease. I entered the disease with an extreme type A personality so determined not to become dependent on anything I did not allow myself to drink coffee regularly. On top of this need for humbling, I was an impatient ass especially when I could not do for myself.
I had reached rock bottom struggling to breathe, eat, unable to speak and my personal life was a disaster mostly of my own doing. I had to find comfort in my skin. Probably my lack of patience was the main motivator. I did not like who I had become. I had to change and work with the tools I had remaining or go insane. I was a recluse embarrassed by my skin and bones appearance that inspired looks of pity, but most humiliated by my unintelligible guttural utterances.
This time I got angry with myself instead of the world and started liking who I am. I began making mental changes and physical adaptations improving quality of life as well as restoring a fair amount of independence. Mastering patience was the most time consuming challenge, years. I knew I arrived during a press conference with Senator Bob Dole. At the time I accessed the laptop with a switch and a finger. During my remarks the finger stopped contracting on demand. I did not become angry or panic; I did get tickled inwardly by the extended dead silence as I waited for the finger to function again. It did.
In 1996 I met Heather Rose Brooks, a young woman with severe Cerebral Palsy. I was teaching Heather how to use her communication system. She thought I hung the moon, but the truth is this brave young woman saved my life by her full embrace of living and teaching me you never have to look far to find someone with a heavier burden. Thanks for reading. Have a great day! dj