With ALS, Picture Perfect Days Are Hard to Come By — But I Had One

It began with an unwanted, mildly disturbing occurrence. In the wee hours of the morning, I was tactilely made aware of the presence of a cockroach in my midst. (Lest anyone infer that to mean our abode is hovel-like, these evolutionary wonders seek water during drought, and refuge during periods of heavy rain, as southwest Florida is prone to. Despite our constant perimeter pest defense, an occasional rogue “Rambo” makes it across the border. Typically, the entry struggle is enough to do them in, their harmless remains a surprise discovery, post-mortem. But I digress.)

Awakened by the sensation of my hair standing on end in a bodily location where none exists, and with the aid of my nightlight, I witnessed the pest frolicking over my appendix.


Given my ALS-limited hand-to-eye coordination, reaction time, and core strength, the pathetic swat I mustered merely served to cause the varmint to scurry for shelter on my right calf. Now, unable to reach the interloper, and having no discernible movement in either of my legs, I was relegated to feeling it aimlessly wander all about my right lower appendage. When the cockroach finally decided to end its carefree exploration by leaping off my big toe, I thought things could only improve. And they did.

When my transfer from my infinite position lift chair to my bathroom wheelchair, via a Rifton TRAM, was accomplished without muscle cramping or skin-pinching, my blessings counter began taking note. When I saw no sign of pressure sore weepage on the disposable liner that my back, butt, and underside of my thighs had just spent 23 consecutive intimate hours with, the trespassing roach faded into distant memory.

The brushing of teeth passed without incident. Shaving was completed without any facial spasm-induced blood loss. The cherry was placed atop my personal hygiene sundae when my aide decided to trim my nose hairs (she has executive branch-like power in all matters related to nose hair and nail length, plus ear wax buildup). I was as good as I get!

My aide then selected my two shirts for the day. One, I wear. The other is draped over me, from mid-abdomen to just above my knees. Shirt two serves to prevent the wrestling match (which I too often lose) with underwear and pants when nature calls my table-side urinal to be employed. Consequently, on most days, I am sans bottom clothing. Unbeknownst to my aide, she had chosen my two favorites. Another harbinger.

The denouement to this interlude of perfection was bestowed, fittingly, as I typed about it. These days find me typing quite slowly, solely with my most responsive digit — ironically, my right middle finger. My right palm, particularly as I tire, will occasionally drop on the keyboard, repositioning the cursor to a random, mystery location. This frustrating variation of “Where’s Waldo” forces my focus to be interrupted every sentence, in a paranoid attempt to minimize paragraph-tectonic shifting. Then there is the collateral damage aspect of so slowly committing thought to figurative paper. When my mind is often sentences ahead, passages get left behind. And when I lapse into muscle fasciculation, or a choking-on-saliva-induced coughing fit, well … all bets are off. Except, consistent with the theme that was now over six hours in duration, none of that happened.

P.S. The aura of perfection finally broke at lunch. I fumbled my sandwich, dropping the bottom slice of bread and ham and cheese to the floor. I was left with a balled-up handful of bread, hummus, and mustard. Oh, and quite the mess between my feet. But wait, our dog “mysteriously” appeared and graciously (and rather thoroughly) took on clean-up detail … perhaps the perfection streak was intact … nah, that would be fatuous rationalization.

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