“Reports of my demise have been greatly exaggerated.” —Mark Twain, in a letter to The New York Sun
I spent the better part of November under the weather. I am always taken aback by the “uncommon” havoc the “common” cold can wreak on someone with the deficit baseline that ALS creates. Weakness, shortness of breath, and general discomfort made writing anything, to anyone, an unrelenting burden. So, I chose not to compose anything until the bug’s influence subsided.
When I returned to a hale and hearty state of health (as much as one can fairly expect deep into an ALS ordeal), it was my laptop that had taken ill. After a series of fits and starts, erroneous theorized causalities, ineffective interventions, and false hopes, the diagnosis by exclusion (actually eerily similar to ALS determination) was that its condition was terminal. Consequently, my nearly two months of radio silence was, finally, unceremoniously ended by the purchase of a new computer. Unexpectedly, the involuntary communication sabbatical provided some insights.
First, in the case of ALS, the presumption that “no news is good news” is not extended. Since telephone utilization for me long ago became nonproductive, the only means of remote communication is via my PC. Without that medium, for anything other than face-to-face interaction I descend into a veritable “Get Smart” cone of silence. Upon my return to the 21st-century information superhighway, I learned that unanswered emails and a dearth of any social media postings from me had some fearing the worst. Although unintentional, my thoughtlessness had caused others anguish. This is a mistake that won’t be repeated. In the likely event that health challenges or a technology malfunction temporarily silence me, I will rely on the kindness of a caregiver to get the word out.
Second, it took the tech-deficient portion of this incommunicado period for me to fully appreciate my rather titanic reliance on computer-availed internet access for edification, entertainment, vicarious amusement, companionship, and comfort. Devoid of it, not only can’t I capture a thought on virtual paper, but I am also shut out from reading any books, magazines, or news, as well as researching anything and listening to music. In short, how I spend 90 percent of my solitary waking hours.
When our cable TV feed coincidentally went down for an eight-hour span, I was forced to “return to the thrilling days of yesteryear” in order to pass the time. I had to think, meditate, and pray in an unassisted manner. (Oh! The humanity!) But I survived. And by the end of the “ordeal,” I was positively thriving. What’s more, I regained a measure of the skills necessary to achieve self-contentment. So much so that I am now “fasting” from all external inputs for several hours each day.
Third, I missed writing. I have, for as long as I can remember, harbored an itch to write. Being an engineer by degree and vocation offered little opportunity to scratch that itch. Engineers and easily digestible prose have had a Hatfield and McCoy feuding relationship that predates the invention of the wheel. Occasionally, peace treaties are struck, affording enough time for a scientific journal to be written or a patent to be issued. My singular published work prior to ALS News Today had been US 6,370,841 B1: “Automated method for dispensing bulk medications with a machine-readable code.” Don’t be fooled. It’s not the page turner that the title suggests.
The authorship void, owing to (at various times and varying dosages) lethargy, apprehension, competing priorities, subject matter confusion, lack of discipline, and overall indecisiveness, was never close to satisfactorily filled. Until ALS. Ironically, I finally was able to overcome all those mental obstacles, coincidental with ALS robbing me of the physical ability to properly do precious little else.
Upon first reading them, I found Jill Briscoe’s words, “Go where you are sent, stay where you are put, and give what you’ve got until you are done,” to be inspiring. Since I am not “done” yet, my “giving” can be whatever portion of what I’ve “got” that another person finds useful. My “got” nowadays is primarily my thoughts and experiences, captured in written word. That was my rationalization last May, when I originally approached ALS News Today about becoming a contributor.
The agreed-upon premise was that I would offer periodic “stream of consciousness” observations about wrestling with ALS. It was anticipated to be a blend of advocacy issues, intervention considerations, and the interjection of some “life-in-the-trenches” current events. Notable only for the pleasure I would derive from writing it, the hope was that there would be enough points of intersection with whomever may choose to read it that it be topical and, perhaps, beneficial.
In that spirit, and being of sound mind, body (ALS-adjusted), and machine, I wish everyone a peaceful 2019. Godspeed.
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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