Murphy’s Law and ALS: Plan for Things to Go Wrong and Pray that They Don’t

“If anything can go wrong, it will.” — Murphy’s Law

That adage could be the ALS anthem. From the onset of mysterious symptoms to the serpentine-like diagnostic process and worst-case outcome, and by watching your body unfailingly obey his maxim, the prophet Murphy is seemingly ever-present.

The gist of this saying has likely been expressed in innumerable variations by countless people before being associated with Capt. Edward A. Murphy. As the story goes, Murphy was an engineer working on a military project at Edwards Air Force Base in California, in 1949. One day, after the project was temporarily waylaid due to a transducer that was improperly wired, Murphy uttered his now infamous declaration. His project manager dubbed it “Murphy’s Law.”

Fittingly, this transpired during an experiment designed to see how much sudden deceleration a human can withstand in a collision. Talk about an eerie parallel. ALS is a catastrophic crash, resulting in life as we knew it coming to a complete halt.

Ultimately, the Air Force project successfully concluded. Prior to a follow-up press conference, Dr. John Paul Stapp rode a sled on the deceleration track to a stop, pulling 40 G’s. He credited the good safety record on the project to a firm belief in Murphy’s Law and in the necessity to try to circumvent it.

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Stapp’s insight punctuates the metaphor. Given the ALS treatment vacuum, our only recourse is to anticipate each nuisance, pratfall, tribulation, and disaster with the goal to avoid, forestall, or minimize them.

With that mindset, my wife and I went through a preemptive checklist as we prepared to embark on a recently planned Saturday outing. The occasion was an annual charity hockey game known as “Guns ‘N Hoses,” pitting the local police and fire departments out on the ice. The proceeds were earmarked for the Muscular Dystrophy Association (MDA). ALS is one of the diseases for which the MDA provides patient support and research funding. Time and again, they have been a ready resource for me. Along the way, special friendships have evolved. I was fully expecting a festive reunion.

Checklist completed, we were excited to get off. Except we could not. Our van — my only means of automobile transport — belligerently refused to start. Lately, it had developed the annoying habit of going through batteries like salsa chips evaporate before the arrival of the entrees when enjoying Mexican cuisine. Mindful of that possibility, we’d had it serviced just weeks before the event. Our hopes to “chill out” ice-side were now dashed.

Disappointed, but not despondent, we regrouped. Taking advantage of me already being in my power wheelchair, we decided to journey out sans van. Our revised destination would be a nearby restaurant for lunch and the next door salon for a much-needed haircut for me. At a round-trip distance of 2 ½ miles, the trip was well within my chair’s normal range. Given it was an abnormally hot day in southwest Florida, my wife decided to travel by bike. All straightforward enough, or so we thought.

Instead, we encountered a flat bike tire and an AWOL air pump, whose whereabouts were unknown in our entropy-on-display garage. Undeterred, my wife agreed to proceed on foot. Then, 80 percent into the commute, we came upon the work-in-progress demolition phase of sidewalk repair. Meaning that all northbound traffic had to patiently wait behind, or deftly navigate around, a chair traveling at 4.5 mph. Finally, when we reached our eatery of choice, we were greeted by a “VACANT — Space For Rent” sign.

Thankfully, nothing untoward transpired during my time in the stylist’s care. That respite was short-lived. As my wife was paying the bill, I happened to glance at my chair’s battery charge gauge. Its feedback proved mission critical. Only the tiniest of slivers of remaining battery life was indicated. We didn’t know whether that meant 3, 30, or 300 feet of additional transport was possible. In any case, a return trip home was not in the cards.

Like wounded dogs, we entered a backup dining venue and limped to a table as my chair gasped its last breath. As we contemplated our marooned plight, the proprietor overheard us and offered to drive my wife to pick up the battery charger. Minutes later, rather than digesting a fecal sundae, my wife, myself, and my chair were joyously enjoying sustenance of a much higher order. After a day spent yielding to Murphy’s wisdom, angels intervened to invalidate the “anything” aspect of his absolute.

We had the last laugh. In hindsight, the van not starting was an example of something right happening. Had we made it to the MDA event, we would have been stranded, with a comatose wheelchair, 26 miles from home.

My takeaway? Plan for Murphy’s Law and pray for Yhprum’s law (“Murphy” spelled backward), which is “Everything that can work will work.”

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