One of the dictionary definitions of karma is an “action, seen as bringing upon oneself inevitable results, good or bad, either in this life or in a reincarnation.”
After my ALS diagnosis was rendered, and then confirmed, I went through the agonizing process of trying to understand why. Given that the causality remains a mystery, one is left with suppositional rabbit holes to explore. I needed something — be it a genetic defect, behavior, lifestyle choice, toxin exposure, or geographic anomaly — to regret. When nothing singularly plausible was forthcoming, I recounted every significant sin I had committed, questioning whether the cumulative tally might justify my newly dispensed punishment.
Eventually my desire for the “why” answer abated. I may never know the reason that ALS chose me. That’s OK. There are bigger fish to fry. By replacing the “why me?” with “why do I still have it?” my Holy Grail-like quest was redirected. On the surface, the lack of a cure appears reasonably obvious.
- The complexity of the disease necessitates an immense research and development effort.
- The anticipated profits don’t attract the required large-scale investment.
- No one is willing to forgo personally profiting from the discovery. The days of a Jonas Salk type of heroically altruistic approach to disease eradication are long gone.
- We are left with a scattered “catch-as-catch-can” approach to thwarting ALS.
But I believe the inherent obstacle to be systemically much simpler to identify, yet paradoxically, far more challenging to overcome. As a society we accept ALS. Just like we do cancer, Parkinson’s, Alzheimer’s, multiple sclerosis, and any other condition that defies arrest. Culturally, we could demand that cures be found. And if we were serious, they would be. Just like we did when we decided to intervene in the wars in Europe, win the arms race, and land men on the moon. When America is truly determined and focused, the daunting is achieved, and even the seemingly impossible is made possible.
Pondering this notion of the collective tolerance made me recall a “Saturday Night Live” episode from 1978 that introduced the character Theodoric of York, played by Steve Martin. The skit was done twice, with the same premise. It was about a man working in a more primitive time, relying on superstitions, but the joke was that it was the most up-to-date technology available. The skits ended with Theodoric wrestling with enlightenment, whereby he would be on the cusp of changing the tack of humanity for the better, only to consider that too far-fetched.
My favorite of the two had Theodoric as a medieval barber. Medieval barbers were also the forerunners of today’s physicians. Liberally employing bloodletting, augmented by elixirs whose constituents might include powder of staghorn, gum arabic, sheep’s urine, and boar’s vomit, Theodoric would “practice” medicine. He would dutifully treat ailments caused by an imbalance of bodily humors, perhaps brought on by a toad or a small dwarf living in the stomach, as indicated by the state-of-the-art diagnostic tool the Caladrius bird. The outcomes, like the age they spoofed, were hilariously dark. As were Theodoric’s aborted attempts at renaissance thinking.
Indulge me, as I borrow from SNL’s brilliance and morph into my version of TheodoRic(k), and explore a societal paradigm shift.
Maybe there is a way to heal the previously unhealable. What if we diverted a tiny portion of the U.S. discretionary spending request for 2020 of $1.4 trillion toward curing a heretofore mysterious neurological disease? What if we reallocated 1 percent of the 2019 military budget of $716 billion toward the effort? That would be $7 billion this year alone, and over $60 billion over 10 years, given our historical spending of $7 trillion from 2007 through 2017.
Then, when we identified the mechanism to restore health, we could export it around the world. Might that gesture serve to reduce tensions with other countries and ideologies, bolster sentiment toward the U.S., and safeguard the world order we attempt to influence? Is it possible to simultaneously lessen human suffering and reduce the need for defense? If so, wouldn’t it be wonderful for us to recapture the mystique and prestige of the Greatest Generation?
Naaaaahhh! Maybe I’ll think about it again tomorrow. Today I’ve got a Netflix series to binge watch. Ain’t life grand?!
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 Services, and are intended to spark discussion about issues pertaining to ALS.
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