Living with ALS and the gravity, darkness and varying elevations everyday
CHARLOTTE: Odd as it may sound, it seems I live with some sense of Easter every day since being diagnosed with ALS. Each morning when I quite literally “roll out of bed” I am greeted with the victorious sounds of George Friedrich Handel’s “Hallelujah Chorus” ringing in my head. Because living with ALS means living with the challenges of gravity, darkness and elevations that continually change.
Hallelujah, a new day has come
I’ve been using an iron bar for leverage to manipulate my way to sitting up at the edge of the bed before heading to the shower. As such, I abbreviated Handel’s title to “The Handle Mess” which more accurately describes my situation.
Once on my feet, I then yell to my wife, “I am risen” for which she fails to find the humor after being aroused from her blissful repose.
Three important factors which I never truly considered in the past have played a significant role in my new life.
The first is “gravity.”
While most people think of it as the means by which everything is anchored to the earth, it can be a major nemesis for those of us who prefer remaining vertical rather than horizontal.
In recent years, Hollywood has glamorized death scenes or tragic events as happening in slow motion. Let me be the first to say that gravity has other ideas. It is truly amazing how quickly the ground can rush up to meet your head and other flying body parts during a fall.
Next comes “darkness.”
When Simon and Garfunkel wrote “Hello, darkness, my old friend” in the first line of their popular song “The Sounds of Silence” they obviously were unaware of how a shroud of total blackness can be detrimental to your health.
To begin with, there can be unknown obstacles which may cause someone to trip or bump into. Beyond that is balance disorientation which, if not taken into consideration, can also lead to bumps, knocks, trips, and falls that are immediately halted by old Mr. Gravity.
Perhaps the least likely candidate in all of this malaise, though not necessarily the most frightening, is changes in elevation.
This is not so much a reference to height as it relates to steps and stairs, but to everyday activities which are second nature to anyone who is not aware of such slight alterations.
One morning while sitting at my computer, I realized I could no longer reach the most distant letters on my keyboard due to an additional loss of dexterity in my arms.
Solutions to living
The ultimate solution was to get a flat lap-board that I can rest on my thighs so that I no longer have to elevate my arms to type.
What I quickly discovered, however, was that I could no longer reach my cell phone without difficulty because it was simply too far away. Even though it was less than two feet from my hands and only a couple of inches higher, it seemingly took forever to get to the device.
I later experimented with the idea of using my manual wheelchair to access the keyboard because the seat is higher, but that elevation was too extreme. What I needed was something more level, so I went back to the lap-board.
Duck, Duck, Goose
Though I never thought about it previously, chairs, sofas, and tables are not constructed with a uniform height. If I sit down on a soft low sofa, I immediately know that I will need assistance getting up.
On the other hand, if I sit on a hard chair that is slightly higher than usual with armrests, standing up almost feels as normal as it used to be.
The real dilemma arises in restaurants and other sites where people gather to sit and use a table. A mere two inches of difference in the height of one table and/or chair can make a world of difference in my ability to function.
The pain of taxes
With tax day just around the corner, the challenge of making sure Uncle Sam gets all the money he needs has become even more tedious than ever.
Without having the ability to pick up a single piece of paper and turn it over, I have had to rely on placing the computer keyboard on my desk and standing up to type. Then I must sit down to get to the proper documents in order to locate the numbers required to fill out the form.
Remember the old high school football cheer, “Sway to the left, sway to the right, stand up, sit down, fight, fight, fight?”
That’s what filing my 2017 tax return has been like which is largely due to slight alterations in the height of things.
When you combine the additional frustration of dropping thousands of scraps of receipts, 1099’s, W-2’s and other assorted documents tax season requires, the process has become even more nightmarish than ever. All primarily because of minor differences in elevation from one piece of household furniture to another.
That said, so long as I can arise to the sound of Mr. Handel’s “Hallelujah Chorus” echoing in my head, I will thankfully greet a rich new day filled with hope and blessings. After all, it sure beats Mozart’s “Requiem.”
”Hallelujah” chorus, from Händel’s Messiah – Mormon Tabernacle Choir
Lead Image: By Cees de Boer – wikiportret.nl, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=57992909
About the Author:
Bob Taylor is a veteran writer who travels throughout the world. Taylor is an award-winning television producer, reporter, and broadcast anchor who now focuses on writing about international events, people, and cultures around the globe.
He is the founder of The Magellan Travel Club (www.MagellanTravelClub.com) with the goal is to visit 100 countries or more during his lifetime
Editors Note: Support Bob’s GoFundMe to give him a hand up