Stumbling Upon the Sublime in a Minefield of the Ridiculous

Rick Jobus avatar

by Rick Jobus |

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“Well I don’t know how to tell the weight of the sun,

How the home computer has me on the run, …

Of all the Nobel prizes that I’ve never won, … 

Please be upstanding for the Mayor of Simpleton.”

In the song “Mayor of Simpleton” by the legendary English band XTC, an enumeration of personal shortcomings and indignities is presented. The contents are impressive for their mediocrity. Despite that, the singer exalts in a position of self-proclaimed honor. However dubious, there is comfort and pride to be found in his station in life.

ALS offers similar opportunistic possibilities, with two notable differences. The list of limitations is never a steady state, but rather perpetually being added to. And subpar at anything is an unattainable overreach. Still, instances arise during which a status of relative prominence may be enjoyed.

The other day, my morning aide anticipated a problem with my daily routine. Upon discovery, she said, “We will have to figure out another way.” Given that whatever workaround implemented involved the use of some trial-and-error fine motor skills, I replied, “We?” To which she answered, “In this operation, I am the labor, you supply the brains.” For that moment, I was the CEO.

I manage the household budget. My stepchildren seek my input on weighty fiscal decisions. I prepare everyone’s tax returns. For matters financial, I am treasury minister.

Brief ascendancies can also occur by default, in the company of strangers. It’s a phenomenon I dub “infirmdynamics.” There are two inherent premises. The first is that most people will defer to the infirm. The second is that the amount of deferential treatment imparted increases proportionally as the visual evidence of infirmity is more apparent.

For example, early on in the ALS ordeal, I walked with a cane. In response, doors were held open, shoulders offered, and smiles of encouragement shared. After I “graduated” to a rollator, preferred seating was made available, front-of-the-line access granted, and paths were cleared. Upon my “upgrade” to a power wheelchair, complimentary food and beverages were forthcoming, attempts to maximize my comfort were made, and traffic at intersections would stop. When crossing the street in my chair, I was a presidential motorcade.

Oceanside in Florida, sitting high atop a gratis beach wheelchair equipped with flotation-friendly balloon wheels, deference became admiration when a youngster mistook me for a lifeguard. Europe did one better for my seascape experience. There, my beach transport resembled a chaise lounge on wheels, requiring someone to pull it from point to point. For an afternoon, I was an Egyptian pharaoh being attended to by the royal litter staff.

There are times when the visual-only impetus behind “infirmdynamics” is paired with situational awareness for more dramatic effect. If someone learns about my “Red Badge of Courage struggle with ALS, their compassionate overtures are apt to be redoubled. A case in point included my periodic interactions with a patron of a restaurant that my wife and I once frequented.

The gentleman was large in body and personality. Much like the Norm Peterson character that George Wendt portrayed on the sitcom “Cheers,” he was a presiding regular, affectionately known by all. On our second visit, Jim began a tradition of greeting us at the door, escorting us to the table most compatible with my chair, if available, and leading us out when we were ready to leave. That level of attention, from someone unknown, was unprecedented for me.

It turns out he was motivated by a misconception. During our first time there, a golf tournament was shown on the nearest television. Jim overheard my garbled reaction to a golfer’s horrible explosion shot, out of a buried lie, in a bunker. His takeaway from my gobbledygook was that I was an injured veteran, perhaps from the first Gulf War. 

When I embarrassingly explained that ALS was the cause of my disability, the expectation was that his attention would wane. Instead it intensified. From that point forward, he made sure that “my” table was always available, bought the occasional drink, and encouraged the kitchen to have an ALS-friendly selection on the specials menu. Suddenly, I was the founder of the feast.

I prefer to equate such random acts of kindness not to a sense of pity, but rather recognition of my effort to, in the words of Curtis Mayfield, “keep on keeping on.” Perhaps that’s an “Emperor’s New Clothes rationalization, but one I reckon I’m entitled to. The highway of life has more than a few exits leading to an identity crisis abyss, or worse yet, a self-loathing black hole. ALS multiplies those interchanges. Feeling purposed, valuable, and important helps me navigate around such dangerous detours.

Jesus said, “Love your neighbor as yourself.” I am much better able to fulfill that command when my self-esteem is on solid footing. Which is why I’m the mayor.


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.


Ellyn Maloney avatar

Ellyn Maloney

You are one clever guy and I suspect you were just as talented before ALS. I would like to think ALS has given you new opportunties to exhibit your writing talent. How is that for trying to find the positive in the beast of ALS?
Thanks for entertaining and enlightening me.

Rick Jobus avatar

Rick Jobus

You are too kind, but writing certainly is therapeutic for me.

Alex Williams avatar

Alex Williams

Thanks for these positive notes! And congratulations on surviving 13 yrs!

Rick Jobus avatar

Rick Jobus

Thanks....I wish that I had an explanation.

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