I have ALS. That awareness has prompted a series of rapid-fire questions.
While many of us would describe existence as being comprised of multiple chapters, I now have two distinctly different lives. Prior to ALS, I had led an unremarkable life largely characterized by good fortune. Some of my successes turned out better than they should have, and many of my mistakes had results not near as bad as could reasonably be expected. Work challenged me appropriately and rewarded me fairly. My leisure time was filled with enough activity, in the form of travel, cultural sampling, golf, and basketball — a fulfilling balance was maintained. My health — as evidenced by my weight, blood pressure, and critical blood analysis — predicted many robust years ahead.
Twelve years ago this week, I was ushered into my second existence, persona non grata, with the following words:
“I am afraid that you have ALS.”
The words were an assassin’s bullet, causing my mind to explode.
No more walking, no more talking, unable to carry my own load.
Until death do us part, l became its minion,
Was the unanimous medical opinion.
What will its effects be on my body and mind?
There are no dull days when the prior breath may be my best.
Finding safety in life’s scaling became my constant quest.
My body, once my shrine, now a prison with ever-shrinking walls.
But my mind, once finite, now lets me roam an endless maze of halls.
Sleep, once an abstract master, became a colleague, my dearest reality.
A reminder of who I was, and foreteller of the healing yet to be.
How? Why? What did I do wrong?
I cursed the world, screamed at God, drank a bit, and cried a lot.
Perhaps I have that backward, my memory serves me not.
I sought wisdom from the scholars, a course of action from my docs.
All answers were defeating, no keys to open the many locks.
The confounding nature of the ailment is that it’s an evil mystery.
Not a single felon, but a cowardly band daring to terrorize me.
Shall I just give up?
In time there came acceptance, a softening of my view on life.
Aware of my body’s death arc, but pledging no spiritual strife.
With crystal clarity, I realized that abject surrender wasn’t right.
Vowing to savor the journey, not rue the destination, I would fight.
Are there essential components in the battle?
The trick is how to thwart an adversary chosen special for one man.
Disarming a stealth combo of factors calls for a highly daunting plan.
But “hope is the thing with feathers” a famous poet once said.
I surround myself in “feathers,” letting them flourish and spread.
Not content to be the sole donor to my feathery array.
Adding hope, not pity, from others yields a more potent bouquet.
What perspective is to be had?
I put the event behind me, chose carefully my ensuing path.
Selecting healthy, productive ways to channel all-consuming wrath.
Know the enemy, what may weaken or slow its progress.
Time gained, and well spent, is a true measure of my success.
What is my, post-ALS, purpose?
Every day that I rise, I’m prepared to do battle; attack, never hide.
For that may be my victory day, with new ammunition at my side.
Small and large, I savor all moments, cherish every circumstance.
Believing with pure conviction that I still have a puncher’s chance.
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 Services, and are intended to spark discussion about issues pertaining to ALS.
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