When ALS Cuts In on the Dance

“If we’re treading on thin ice, then we might as well dance.”

That is a line from a song, “Do It,” on Jesse Winchester’s second album, “Third Down, 110 to Go.” The album’s title depicts an impossible situation. The referenced lyric prescribes a nonchalant, if not joyful, response.

In the face of many ALS-related challenges such as the “cockroach incident,” second-guessing a painful decision, or dealing with the vagaries of handicapped travel, I typically err on the side of optimism. The adage, “When life gives you lemons, find some tequila and salt,” is one I strive to figuratively comply with. Worry, stress, and anger serve only as accelerants for the ALS firestorm.

That said, there are times when a cheerful reaction is impossible. The interludes in which the tentacles of ALS infiltrate life, ubiquitously in both dramatic and subtle ways, are downright insufferable. Thursday night was such an occasion.

The evening was expected to be a respite. My wife and I had tickets to enjoy a concert headlining one of our favorite musicians, Joe Bonamassa. Contending with the rigors of transferring me seemed like a reasonable trade-off. With that mindset, we embarked.

We use a van converted for wheelchair access. The front passenger seat is removable and I ride shotgun in the vacated spot. My power chair’s weight has proven sufficient for securing me in place, though sharp turns or urgent braking can result in minor repositioning. My wife, ever mindful of that vulnerability, is a most delicate driver. Unfortunately, some others do not possess that skill.

Midway through the journey to the concert, a car cut us off. Inexplicably, it then stopped, forcing my wife to slam on the brakes to avoid a collision. Our van obediently stopped. My chair continued traveling 30 mph, propelling me headfirst into the dashboard. Miraculously, I exhibited no outward evidence of the impact, proving once again that I have a face only a boxing promoter could love. I took on the trait my father often warned me to avoid: I became a literal “numbskull.”

Upon arrival in the parking lot, we encountered our sometimes finicky wheelchair van’s abject refusal to automatically open the sliding side door and lower the heavy entry ramp. So, my fashionably dressed, petite bride had to operate both manually. Worse yet, once I was out, she had to batten down the hatch, this time with gravity in opposition. The most zealous gym rat would get a workout of the deadlifting, bending, and pushing of the hinged, two-piece, unwieldy assembly. The prospect repeating this labor two more times before our night was over was not lost on her.

Once inside, we solicited one of the ushers, confident that he would have a scripted response to our need for wheelchair-accessible seating. His reply of “it depends on the venue and performer” made us think we’d be on the main floor and close because that was the case during our previous experience with that exact pairing of arena and artist. Ultimately, we were seated in a skybox-like location. Not terrible, but since Bonamassa is much more a genius guitar technician to be appreciated more keenly via close proximity, and much less a showman and pyrotechnics wizard, the vantage point left much to be desired. Plus, the best way to sample the performance was to stand so the plexiglass enclosure would not obscure the view. Alas, I cannot.

The infernal adventure was punctuated when my wheelchair became stuck on the access ramp of the van. Much like extricating an automobile from a tractionless predicament, my wife had to rock the chair backward and forward until it was finally free. Adding injury to insult, she had to complete the ramp manipulations with a sprained wrist.

Those were the major ways in which ALS exacted its dominance, but there also were the usual plethora of more minor reminders. Every time we thought we’d caught our breath, ALS would rear its ugly head and make for a diabolical excursion.

Thankfully, the bright times far outnumber the dark ones. Still, when ALS unleashes its fury, the tsunamic aftermath makes finding emotional high ground again exhaustively daunting. That the process repeats time and again makes one wonder, “Why even bother?” But as the French say, “C’est la vie” —  such is life.

Or, as the stanza goes in the aforementioned Winchester song, “Do it till you’re sick of it. Do it till you can’t do it no more.”

I hope never to be sick of life, and I can still do more. That’s why I bother.

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