The Soulful Benefit Arising From Punching a Clock
“‘There must be some way out of here,’ said the joker to the thief,
‘There’s too much confusion, I can’t get no relief.'”
When I first heard “All Along the Watchtower” by Bob Dylan, I thought, with my 9-year-old sensibility, that the song referred to a monolith of timepieces. The source of the confusion, I reasoned, was that the stack of clockwork wristbands were all set to different times. Now, 45 years later, watches again infiltrate my thoughts in an equally obtuse manner.
Watches are the “modern” gift choice for a 15th-anniversary commemoration. Today marks 15 years since my ALS diagnosis was rendered. That’s nearly a quarter of my life that I’ve been toting ALS on my back. I’ve had many moments since diagnosis of crippling confusion, during which relief was unimaginably elusive. Thankfully, those interludes haven’t predominated.
Like many, my early symptoms were mildly irritating, gradually becoming a tad limiting, before I sought medical attention. I naively figured that the worst case would require corrective ankle surgery to reestablish middle age normalcy. Instead, I was told that neurological Armageddon had begun inside my body.
That news prompted questions. Some were existential: Who will I be? What will I be? How long will I be? Some were practical: Where will I be? How will I afford to be?
In hindsight, those sets of questions really needed to be asked across two subcategories, as the changes would occur both physically and soulfully. They were profound, but trended in opposite directions.
Eleven months and three neurologists later, I was told that I likely had the “slower” form of ALS.
“What’s that mean?” I asked.
An expert in her field responded that they didn’t really know, but given that the average life expectancy was three to five years, I might outlive it.
At that point, I was walking with a cane and wearing an ankle-foot orthosis (AFO). In the ensuing desultory period, I graduated from cane to walker, to a pair of industrial-strength AFOs on steroids, to being unable to walk at all. That took slightly longer than my optimistic life expectancy prediction.
During the time between my “slow-progressing” estimation and forced wheelchair reliance, nothing was deemed too outlandish in my attempts to slow the beast down. Having thrown caution to the wind and scientific method to the gutter, I have no idea what, if any, effect the various and sundry ALS-mitigation attempts had on my arrival at the other end of the average survival statistic. Glancing at the largely dysfunctional half of my body while performing a quick and rudimentary extrapolation, I calculated that another five years might be in the cards.
During my first half-decade with ALS, I focused primarily on its bodily toll. Despite my vigilance, it continued to advance. Curiously, as my body weakened, my faith grew stronger. Physically, I was playing catch as catch can while simultaneously playing with house money mentally.
That acknowledgement sparked a coming-of-age awareness. Everyone, no matter how generously fortune has outwardly smiled upon them, faces interludes of despair. We all are just a waiting room away from disaster. As an interim survivor still on the safe side of a foreboding precipice, it is my responsibility to offer support to anyone having to step over whatever harrowing threshold they’re confronted with.
Relative to the anti-ALS crusade, that has meant advocacy and fundraising. As a statistical outlier — having come first — it also means providing thoughtful and timely feedback to those coming after. In part, it’s one of the reasons I write this column.
For those outside the jaws of ALS, I lend an empathetic ear and, as requested, provide opinion. Occasionally, words come to me in a rhyme scheme. Often they are reflective of inner discord and my effort to subdue it. When potentially relevant to others, I share with friends.
And I pray.
When I was diagnosed, I wasn’t much of anything spiritually. The jolt of the news sent me scurrying back to the God of my youth. I would incessantly plead, “Heal me, Jesus.”
And he has. Not of ALS, but of something far more life-threatening: He has restored my faith.
I still pray for ALS abatement, but when doing so, it’s in the context of service. Could I serve others better with a voice and able-bodied legs? Fifteen years after he was largely an afterthought during my diagnosis, now in God I trust. Period.
My favorite aide recently told me that when she and I meet in heaven, we won’t recognize each other. She’ll be young and thin. I’ll be standing. Then we’ll laugh about the times we couldn’t communicate.
Until then, I’ll punch the clock. I live for that day.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.