Learning to Cherish a Room With a View

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by Rick Jobus |

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Last week, I ended this column with a tongue-in-cheek inference that in deference to an improbable ALS curse befalling me, I would not share two near-disaster experiences anytime soon. This week, I am reneging on that prediction with the following disclaimer:

ALS, in the off chance that you possess the power of sorcery, I hereby acknowledge your dominant role in my life. Any inadvertent humor resulting from the recounting of how we spent one of our many days together must not be perceived as being directed at you. Rather, it is my feebleness, of which you are the primary cause, that should be construed as the target.

ALS imposes a Benjamin Button-like regression toward infancy of its sufferer’s physical capabilities. Several birthdays ago, I possessed the ambulatory skills of a toddler. All were on prominent display as I set about finishing my then early morning routine.

Like a crib-bound child grasping the railing to arise unsteadily, I took hold of my locked rollator’s handles and worked myself to my feet. Once up and stable, I laboriously waddled a few feet to my power wheelchair, similar to a baby’s first uncertain encounter with a walker. Then, akin to a novice in potty training, I backed up to my target. After gaining confidence in my positioning, all that remained was a plop onto my awaiting seat.

Unfortunately, the infant analogy continued. As an assuming youngster’s command of spatial relationship occasionally proves faulty, mine did likewise. My gravity-only descent left me teetering precariously on the armrest of the chair. Whereupon fate intervened, crashing me to the floor. There’s no telling if the outcome of the figurative coin flip determining my birthday’s destiny was heads or tails, but both of mine suddenly hurt noticeably.

This was not my first ALS rodeo spill. By that point, I was experienced enough to do what every thrown veteran bull rider does. I checked for serious injury. My finding was of no blood or signs that anything was broken.

As I savored that blessing, an ominous thought interrupted. I was flat on my back, having insufficient core strength to rectify my upended tortoise predicament. My wife wouldn’t return from work possibly for 10 hours. So, two concerns raged: What if I had to pee? Would an unelevated head allow a mucus plug to compromise respiration?

To address the bladder-voiding potential, I managed to tip my rollator over. This maneuver gained me access to the contents of the pouch. Included therein was an empty urinal container.

Surreptitiously, there was also a face towel and a copy of C. S. Lewis’ “Mere Christianity.” In Rube Goldberg fashion, I was able to wrap the towel around the book. The result was a makeshift pillow.

With those two potential problems addressed, I then lapsed into the exact opposite of the stiff upper lip stoicism that I admire in others who endure duress. I grew angry and silently groused. What a way to spend a birthday. The world is against me. Life is unfair.

The crash had left me angled toward a sliding glass door, affording a partial view of the lanai. In the midst of my mental carping, I spotted a gecko engaged in a peculiar trek across the concrete. It would sprint a bit, then freeze for a minute or two. This behavior was repeated four times until the lizard was out of my sight. Given its place on the food chain, I reasoned it was constant prey.

Then it hit me: Shame on me for all the woe is me! There are far worse existences than life with ALS. Take, for example, living in a war zone, like a gecko must. And supposing ALS was the worst hardship a human might ever face, relatively speaking, I am among the most fortunate. Then, as now, my gifts include wonderfully supportive family and friends, a superb care team, and ample creature comforts. 

As that epiphany was settling in, a quote from the Lewis book came to mind: “God has infinite attention to spare for each one of us. You are as much alone with him as if you were the only being he had ever created.” I spent the balance of my supine time delighting in that thought.

Thankfully, the local fire station has the same affection for me as they do for any spinster whose cat occasionally gets stuck in a tree. Once contacted by my wife, they dutifully rescued me, yet again.

In the months that followed, some lessons were learned and countermeasures implemented. I acquired a transfer lift. I signed up with a medical alert company, making emergency assistance just the push of a button away. 

But by far the most impactful consequence was from that birthday forward, I always treasure the view.


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.


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