Awaiting the ‘Hope Begets Hope’ Aria

Rick Jobus avatar

by Rick Jobus |

Share this article:

Share article via email
Main graphic for

“Just what makes that little old ant

Think he’ll move that rubber tree plant

Anyone knows an ant can’t

Move a rubber tree plant

But he’s got high hopes …”

— Frank Sinatra, “High Hopes”

Recently, I watched the movie “A Hole in the Head” for the first time since my ALS diagnosis. The film stars Frank Sinatra, so, no surprise, it puts his crooning skills on display. I found one of the songs, “High Hopes,” particularly relevant to the many predicaments that ALS has put me in.

More than a few times I’ve found myself up fecal creek without a paddle. When stranded in those daunting currents, I endeavor to remain positive. Like the underdog ant that Sinatra sings about, I am optimistic that an idea for a makeshift oar will come to me — perhaps I’ll even fashion one from an unlikely source, like a figurative rubber tree plant.

During my dance with ALS, no potential countermeasure has been considered, at first blush, to be too outside the box, kooky, or ill-advised. Admittedly, my zeal to remain viable in ALS’ perverse modification of Chutes and Ladders has led me to race past some ladders of modest height, only to encounter a long, injurious chute. That said, I’ve had enough reprieves during my day-to-day struggles that hope, while not always high, at the very least has a pulse.

Recommended Reading
C9orf72 gene in ALS | ALS News Today | zebrafish model shows research potential

Loss of C9orf72, ALS-linked Gene, Affects Motor Skills in Early Study 

With the Shakespearean quotation “What’s past is prologue” as a backdrop, I steadied myself to resolve a recent dilemma ushered in by ALS. Additional context was that the challenge occurred on the back end of an uncharacteristic blue period for me. In terms of resources, I was beyond spent.

Admittedly, the source of my vexation would be microscopically trivial to deal with for anyone with a modicum of normal bodily function. Given that I now possess the fine motor skills of a rusty, unlubricated Tin Man from “The Wizard of Oz,” no nearby object is safe when I reach for anything. Such was the case when my quest for a beverage caused the television remote and a stack of paper towels to fall to the floor.

For an ordinary person, the retrieval of both would be an occurrence taken for granted. Likewise, the absence of either, particularly the paper towels, would not be an over-the-top deprivation. But the ALS existence is hardly ordinary.

These days, just extending my arm down to the floor, much less with any directional precision, is a feat of Olympian accomplishment. Beginning with a whisper and ending in a shout, my joints and muscles plead, “Please don’t try to stretch us.” If not for the critical utility provided by “the quicker picker upper,” I’d have acquiesced.

The paper towels are a necessary impediment to my shirt becoming an amateurish, low-brow Jackson Pollock knockoff. ALS has diminished my swallowing to the point that “stuff” — saliva, other secretions, and bits of food and beverage — often sit in limbo on the back of my throat. When the accumulation becomes sufficiently large or ticklish to activate a choking-like cough response, a bolus ends up in my mouth. “Bounty” then martyrs itself, becoming the substitute canvas for the mucous-based abstract.

The motivation to regain ready access to the paper towels prompted me to engage in an exercise resembling a solitaire variation of the parlor game Twister. Just like in the Hasbro classic, my best strategy was a careful consideration of alternative appendage placements, including subsequent repositioning options.

For me, there are two mission-critical imperatives. The first is don’t extend too much torso over my center of gravity. Given my next to nil core strength, I may end up stuck in place, dangling helplessly over my chair’s arm. The second is to maintain sufficient contact with my head pillow, so it doesn’t tumble to the floor. Without it, the most able muscle group of my body — that of my neck — is liable to be seriously sprained.

After fits, starts, cursing, and timeouts, my version of the arcade claw machine was finally overcome. Will power, deliberation, a feeble body, and a shred of hope had triumphed. The paper towels were again by my side. I was as euphoric as I can remember ever being.

Sinatra’s song was later parlayed into a campaign jingle for John F. Kennedy during the 1960 presidential election. “High hopes,” aided by the bankroll of his exceedingly wealthy father, prevailed.

High hopes, plus money, will defeat ALS as well. It will happen.

The song also contained a verse about a ram knocking out “a billion kilowatt dam.” A popular sports adage — “It ain’t over till the fat lady sings” — suggests that even the unlikeliest of outcomes can be hoped for and waited on, and they sometimes happen.

In a similar vein, I anticipate an opera, in which a person of generous proportions musically proclaims the destruction of my one billion kilowatt dam(n) — ALS.

***

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.

Comments

Bob Ives avatar

Bob Ives

Good post Rick! To update the old phrase, I've "Been there, doing that".

Reply
Cate avatar

Cate

Rick, I had a few similar situations over the past couple of weeks. Success for me involved tilting my wheelchair to and fro, making use of angles and gravity to retrieve my item. I’m one case I lost the battle with a bag of cheese, but my loss was my dog’s gain. When I have success, I feel like I’ve conquered the world, or at least, for a moment, ALS.

Reply
Nancy Gilkeson avatar

Nancy Gilkeson

Eager to hear that robust aria proclaiming your billion-kilowatt dam destroyed along with many others! Thanks for your comedic descriptive (abeit very real) story of a day in the life one with ALS, Rick. Thank you for sharing.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.