Living with ALS: Life, living, according to John Lennon and Woody Allen
CHARLOTTE, NC: In the midst of the coronavirus pandemic I, like so many other people, have had time to reflect upon any number of things that might have gone unnoticed in the pre-virus world.
During that time I was reminded of two quotes that have always struck me as brilliant in their simplicity and their truth.
The first was the wisdom of the great musician John Lennon who once quipped that
“Life is what happens while you are busy making other plans.”
The second comes from the prolific mind of comedian and movie author/director Woody Allen who remarked
“Showing up is 80 percent of life.”
For many of us who battle daily with the never-ending consequences of ALS, the COVID-19 sequestration was not the same as it was for those who live in a healthy world.
With ALS, most of us are already, by definition, sequestered… permanently.
The biggest difference is that in order for us to go anywhere or to participate, most ALSers must rely on others to take us and bring us back. In that sense, sequestration is even more severe because we must yield our independence to inconvenience someone else. And in the process, infringe upon their freedom.
That’s not a complaint, merely an observation; a new reality.
Accepting new ALS normals
Until recently I have begrudgingly accepted the gradual loss of personal freedoms because there was always a workaround. A way to become accustomed to my new environment and adapt to the changes of ALS. As the changes continue, however, I become increasingly more dependent upon others just to accomplish routines that everyone else can do in mere minutes. The frustration grows incrementally.
Add in the loss of personal dignity, it is easy to understand how depression can evolve in the mind of the patient.
Shaving is a good example. Though not the favorite aspect of my daily ablutions, it was a necessary ritual and, the best part was that I controlled the extent of the closeness of the shave.
Today my caregivers do it for me and, while it’s not their fault, I daresay that when they are finished, if my face feels as soft as a modern baby’s bottom, then I bare witness to the fact there are a whole lot of scruffy little butts out there right now.
Eating is another loss of independence that no healthy person would ever consider a problem.
Having to be fed is not the source of the dilemma. The difficulty lies in eating at someone else’s pace, other than your own.
It’s usually not so bad when it is one-on-one although allowing for chewing and swallowing, depending upon the texture of the food, can only be conjecture on the part of the feeder.
It can all go haywire, and usually does, in a social situation, especially if your food is delivered by someone who likes to talk. That’s when the rhythm changes completely. That warm piece of French toast dripping in syrup and butter may indeed make it to the fork but beyond that, it’s anybody’s guess as to when it will arrive at your mouth.
As the talk-feeder speaks, that delicious little morsel of sustenance dangles before your eyes. The feedee feels not unlike a newborn bird in the nest with its tiny helpless beak agape and raised toward the sky in search of the worm.
When the ALS victim eventually does receive his food, more often than not, it’s cold. But at least the conversation was good.
Finally, there’s the matter of dressing.
Undressing is faster but, either way, it’s a process that takes between 15 minutes and a half-hour.
To begin with I throw all my traces of dignity out the window. I lay face up on a mat looking toward the ceiling waiting to receive my instructions. Without the use of my arms or legs, there’s very little else I can do anyway.
So I lie there in the middle of my human “blob mat” awaiting my dresser to give the command, “Fido, roll left” or “Rover, get on your right side.” I close my eyes trying, usually unsuccessfully, to think of more glorious moments in my life. There are many, of course, but they never seem to come to mind when I need them.
For quite some time now my last two sources of sanity have been my power wheelchair and the computer.
My PC has not only been a source of information but also a resource, a link to the outside world, and access to the written word.
My chair, though limited in range, is my only personal source of mobility. Lately, the chair has become more and more prohibitive to control however, so it is now my number one priority to get adjusted.
As for the computer, using my eye-gaze writing is a true blessing that I must become proficient with sooner than later. You see, as sequestration slowly disappears for others, my goal is to prevent it from becoming isolation.
John Lennon would be happy to know that I have lots of plans which means there’s still plenty of life to live. As for Woody Allen, I fully intend to participate.
In closing I would like to add my own ALS quote as it relates to shaving and other complications;
“Nobody knows the stubble I’ve seen!”
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.
He is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
His goal is to visit 100 countries or more during his lifetime.