CHARLOTTE, NC, November 26, 2017 – As one of the newest members of the “unarmed” forces, I have acquired a new BFF named “Murphy.” ALS victims and Murphy are intimate companions because the adage “if something can go wrong, it will” was never truer or more relevant.
ALS and Murphy’s Law in Action
Shortly after being diagnosed with ALS my son-in-law asked me if I was angry. At first, I thought he meant “angry” in the sense of being upset at learning of the ailment. Since then I have come to realize he was referring to anger in the context of frustration.
As time, and ALS, progresses and everyday skills diminish on a daily basis, the cumulative effect eventually takes its toll. Dropping pills, bumping into furniture, spilling food and all manner of trivial events have personally made my tolerance levels considerably shorter.
At first, I accepted the struggles as part of the process, but as time wears on, I am discovering that lashing out at my own inadequacies is becoming more frequent.
The Little Cripple of Ouro Preto
Years ago, while traveling in a small town in Brazil called Ouro Preto, I went to a nearby cathedral which was famous for its sculptures. The artist was a man named Antonia Francisco Lisboa, a 19th-century artist and architect whose crowning achievement is known as the “Twelve Prophets of Congohas.”
In 1777, Lisboa began to show signs of a debilitating disease which most experts believe was leprosy. Despite his affliction, Lisboa continued to work as a sculptor. Though disfigured and disabled, he would strap a chisel and a hammer to his fingerless hands to carve out his masterpiece.
As word spread of Lisboa’s work, he became known as “Aleijadinho” which in Portuguese means “The Little Cripple.”
As time passed Aleijadinho became increasingly reclusive, doing most of his work at night. When he did go out, he traveled through the streets in a covered litter with either slaves or paid assistants to carry him.
Aleijadinho was known for his foul temper and angry outbursts which were most certainly a result of his inability to work at the level of perfection he desired.
When I heard the story at first, his level of anger and frustration, though understandable, also seemed incomprehensible.
Today, I empathize completely with the little man who earned the reputation as being the “Michelangelo of Brazil.”
Though Aleijadinho’s figures may at first appear to be somewhat crude and unrefined, when you consider his handicap combines with the tenacity and determination to complete them, they represent a truly remarkable achievement.
Armless but not unarmed
In my own world I have reached a point where I am basically a torso with hands. I know that secretly I am not known as “Aleijadinho” but more likely as “Spongebob Squarepants.”
There remains a wanderlust spirit in my soul to travel to every nook and cranny of the planet seeking out interesting people, history, culture, art and any other curiosity that comes along.
As a sidebar to the travels is photography which was once a hobby of mine. With the inability to use my arms, today I now take pictures mostly of feet and the ground. They are actually not bad, but hardly defining of a particular destination. After all, a cobblestone street is nothing more than a cobblestone street when viewed from ground level.
Therefore from a creative sense, I can now readily imagine the frustration Aleijadinho experienced, though certainly not on a similar scale.
For me, writing has also changed in the sense that I must now use a tray with the keyboard on my lap in order to reach the letters and the mouse. The process takes a little longer than usual because there is a tendency to hit buttons or keys which force me to go back and clean up the mess.
It has, in its own way, become the ultimate “laptop” computer.
ALS and an everchanging future
In the process, it occurred to me that perhaps the ALS has changed my perspective on future projects. After publishing my book called “The Century Club” about my quest to visit 100 countries or more in my lifetime, it had always been my intent, if successful, to write a sequel titled “Turn of the Century.”
With the added maladies I have developed a new philosophy as I rethink titles for a different book. The philosophy is something I like to call “wake up and adjust” which, by the way, would also be a good title.
On the other hand, some of the more interesting classic books literature might also lend themselves for consideration.
Three that come to mind are “Great Expectations”, “From Here to Eternity” and “Les Miserables.”
After careful thought however, much anguish and a few bouts of ALS rage, it occurs to me that the perfect title for my sequel is “A Farewell to Arms, Part II.”
Could it be that one day they will call me “Aleijahpeabody”, otherwise known as the “Hemingway of North Carolina”?
Not likely. Not if Murphy has his way.
About the Author: Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up