“I am a rock,
I am an island,
And a rock feels no pain.”
In 2020, there have been none of Paul Simon’s “rocks” to be found in the social circles that I inhabit. Everyone that I know has endured suffering of one kind or another. Many folks’ pain is derived from multiple sources.
Tomorrow is Thanksgiving here in the U.S. Looking back on a year in which trials and tribulations were de rigueur, on the surface, finding sincere gratitude may be challenging. For me, a review of the circumstantial storms, with the intent to dislodge some silver linings, often serves to detoxify.
Pain can be physical or emotional. Often damage to the spirit can hurt more intensely than bodily harm. Each year, ALS sufferers hold out hope that this will be the time that the disease will be arrested, only to experience the trauma of shattered dreams.
A recent episode of emotional pain was delivered with the news of BrainStorm’s results from the NurOwn Phase 3 clinical study. The ALS community had been hopeful of an announcement heralding a sweeping breakthrough advance against our dreaded nemesis. Instead, the primary efficacy endpoint was not attained.
However, in a subgroup of patients with less advanced disease progression, statistically significant benefit was demonstrated. This could conceivably mean treatment approval for those recently diagnosed. While not initially pertinent to me, even limited market availability will fuel further discovery, perhaps culminating in a stem cell approach for us ALS veterans. Thank you.
Like any other year, 2020 had multiple tantalizing-turn-bitter ALS disappointments. Unlike other years, 2020 was chock-full of other founts of deep emotional hurt, greater in ordeal.
BrainStorm’s press release followed on the heels of a bitterly contested presidential election. Election Day itself was the endpoint of an excruciatingly divisive campaign that validated Stephen Stills’ lyrical notion that “nobody’s right if everybody’s wrong.” I am reminded that, owing to the Founding Fathers’ ingenious constitutional checks and balances, in my lifetime no administration has fulfilled all of my selfish and naive wish list, or conversely lived down to my worst paranoid fears. Thank you.
Providing a fiendish bookend to the ballot tension and tumult, COVID-19 struck early in the year. Death, financial ruin, healthcare system supersaturation, and societal upheaval have been the painful consequences. Somehow, those in contact with me have remained current with transmission avoidance protocols, and considerate enough to rigorously follow them. I have remained unassaulted. Thank you.
Across the globe, natural disasters have sprung up at an alarming rate. In particular, as a Florida resident, the most prolific hurricane season in recorded history has spawned near-constant vigilance. Seemingly every week, a weather forecast will introduce a newly named storm. That begets the angst-laden ritual of hurricane tracking, and as necessary, the heightened anxiety of strike preparedness. In 2020, we were improbably bathed twice by Eta, but not catastrophically inundated. Thank you.
Humans continue to kill humans for unfathomable reasons. Not a day goes by without breaking news regarding one, or multiple, such incidents. My heart bleeds as each story is aired, even more so when the casualty belongs to an overly besieged demographic. Now, finally, there is growing recognition of the importance of the lives of an historically and systemically disadvantaged and victimized population group. Thank you.
Of course, we all have a unique collection of physical challenges, ailments, and stressors. Not surprising, my most prominent ones come courtesy of ALS. Each year, ALS inflicts physical pain on me. 2020 has been no exception.
The most notable example was a stubborn, never-say-die wound. What began as an abrasion quickly became an infected, pus-spewing, geyser of pain. An appointment with the physician resulted in antibiotics and at-home nursing attention.
Given the location of the sore and my inability to generate positional pressure relief, my care specialist predicted it would require an inpatient stay in order to heal. Despite her pessimism, she dutifully cleaned the wound and changed the dressing thrice weekly. After the better part of three months, it finally scabbed, closed, and generated new skin. An extended hospital stay was averted. Thank you.
2020 also has had the usual suspects of ALS-related choking incidents, cuts, scrapes, bumps, and bruises. But it also brought new friends, and reunions with foundational old ones. Along the way, I’ve become more patient, forgiving, and open-minded. I am more appreciative of, and charitable toward, others. Most importantly, I’ve drawn closer to God. In my estimation, I’ve emerged a better man. Thank you.
“Pain pays the income of each precious thing.” — William Shakespeare
“No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.” — Hebrews 12: 11
I am not a rock. Thank you.
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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