“It’s hard to make predictions … especially about the future.” –Yogi Berra
Gamblers and non-gaming speculators fervently seek out “sure things.” In the absence of that, both groups attempt to identify situations where probability weighs heavily in their favor. Some may conspire to unscrupulously influence the odds in their favor by employing techniques like stacking the deck, loading the dice, accessing inside information, or bribing officials.
Risk-averse folks likewise gravitate toward certainty. Almost universally, humankind will opt for a guiding light versus complete darkness.
ALS offers only one given. Death. Outside of that, it renders you completely blind. About 90 percent of those afflicted never see the locomotive hurtling toward them. Given that the cause and risk factors remain unknowns, pre-emptive preventive action is not a possibility.
Even those aware of the potential peril — the familiarly predisposed — never know, until after the fact, whether they will be heredity’s victim. The diagnosis is just an educated guess. There is no definitive test, only a battery of examinations to exclude all other explanations for the symptoms. In the absence of an assignable cause, ALS is assumed to be the culprit.
As if all of that weren’t bad enough, the pronouncement that you are likely to have ALS includes no accurate foretelling of what lies ahead, only broad generalities. One study suggested a predictive method with the following caveat: “The model may predict a median survival of as much as 4 years or as little as 8 months, and even less in patients with respiratory involvement. The true survival time falls between half and twice the median in about half of the patients.” Clear as mud. That analysis is either not well known, or not explicitly trusted by clinicians. In visits to six ALS clinics in four states, a prognostic has never been shared with me.
You cannot even turn to a fellow sufferer for a reliable rendering of what to expect. The heterogeneity of ALS precludes that. What one has experienced does not fully translate into a meaningful fortunetelling for anyone else. In many cases the disease progression will be vastly different: “With profound clinical, prognostic, neuropathological, and now genetic heterogeneity, the concept of ALS as one disease appears increasingly untenable.”
Among the few similarities to be counted on are the devastation when the damnable news is initially presented, the constant self-surveillance for signs of deterioration, and the coping with the loss of all semblance of a hoped-for destiny. To again quote Berra, “The future ain’t what it used to be.”
ALS is wicked.
Last week a couple of folks judged my article to be of the “feel-good” variety. Nothing could be further from my intent. Like many of my columns, it was merely an example of trying to cope. Not in any “here’s how” sort of way, but rather as acknowledgment of the importance of the effort, no matter the method one chooses. Suggested coping strategies abound. From general listings to specific ones, poignantly penned by people in the throes of a terminal illness, the menu options for distraction, diversion, channeling, and purposeful life are plentiful.
Admittedly, I do tend to be an optimistic sort. My default glass is half-full. Of course there are the unavoidable instances where the barkeep leaves my container half-empty. Not surprising, more so after the advent of ALS. Recently my pastor offered advice. Regardless of how the meniscus level is perceived, always strive to make the glass larger. Consciously increase the capacity to take in life. That is now a go-to weapon in my coping arsenal.
Plus, there is the matter of the promise I made to a man, Randy Watkins. Introduced at work in 1980, we became friendly hallway passersby and later genuine friends via a shared fondness of golf. He was diagnosed with ALS after I was, knew of my condition, and sought my advice relative to my atypically slow progression. We compared notes, commiserated, and dreamed of tee times upon the return of our health. In short, we propped each other up. For over three years, we were in contact at least once a week and often daily. Our friendship deepened immensely.
When he sensed that his days were dwindling, he asked that I make a pledge to his memory. His request: Keep battling, stay upbeat, and always seek the good.
He passed like he battled this horrid disease — determined to prevail, yet at peace with the timing and the adjudication of the outcome. Every day I celebrate the existence of a man who exemplified that triumph in life may be gauged by strength of character, resolve to do what is right, love of others, and coping with all that life deals you. Randy is the epitome of a winner.
His example of courage, graciousness, persistence, and perspective helps me cope.
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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