CHARLOTTE, NC: One lesson ALS quickly teaches is that each day is a new experience. If “variety is the spice of life” then ALS has to rank among the “spiciest” diseases in existence. Comedian Redd Foxx would tell this one joke. Foxx would say his uncle had two regrets in his whole life. One that he had to wake up to eat. The other that he had to stop eating to sleep.
Depending upon the state of progression an ALS patient is in, Foxx’s joke is 180-degrees from that reality.
Both eating and sleeping can be, and eventually will become, major consumers of energy for a person dealing with Lou Gehrig’s Disease.
For me, sleeping has become a nightly excursion into a world of being partially suspended between deep slumber and restless awareness.
I suspect that one of the symptoms of my current condition is not common with other ALS sufferers, but, if it is, I would like to know about it.
When my nightly pillow fights began, and I literally do mean pillow fights, I would awaken and, for some strange reason, I would hear the theme music to the James Bond film Live and Let Die.
Given the title of the picture, it did seem appropriate.
However, it is also an odd choice since I have never paid attention to that particular score unless I was actually watching the movie.
Now something even weirder has happened. I no longer hear the Bond music during my attempts to return to my reverie in the land of nod. Instead, I inexplicably hear a medley of Australian folk songs.
Is it any wonder that sleep is the best way out of that dilemma?
An Octopus with ALS
Other unusual images infringe on my psyche during the hours between dawn and dusk as well. The other night I dreamed I was an octopus suffering from ALS thereby making my condition four times worse than it already is. I have no clue as to the source of that ridiculous scenario. But having four limbs that do not work, I can’t imagine, except in my dreams, having eight.
Many people who are unable to sleep speak of “tossing and turning” all night. For me, ALS has removed all traces of turning, leaving tossing as my only option.
The problem lies in the fact that since it is difficult to roll over, I am attempting to sleep on my left side in one position. That only works for about an hour. However, then my left arm gets cranky and the remainder of the night revolves around finding some relief.
In the process, the covers get rearranged in all sorts of odd patterns which can be difficult to return to their proper place. At that point, my mind says maybe if I had been an “undercover” cop, I would know how to adjust.
Dancing Kangaroos and Jumping Koala Bears
Sometimes the road to “recovery” can be tedious, especially when there are dancing kangaroos and koala bears jumping around in your brain.
Pillows have become an added burden. In the dark, without the use of my arms, a large pillow feels as though it weighs a ton, and there is no good way to rearrange it. Smaller pillows work at the outset, but they fail to provide the requisite softness to keep my arms from falling asleep quicker than I do.
On occasion, I am able to roll over to my back and lie flat in the bed facing the ceiling. At this point I can rest my useless arms at my side, but the comfort is short-lived since back-sleeping is not in my nocturnal playbook.
So then it’s back to repositioning my arms and head while attempting to figure out how to get those blasted sheets back into line.
Among the more inconvenient interruptions in the process is the random itch which never occurs in a spot that is accessible. Now the decision regarding which problem to tackle first becomes entirely determined by the strength of the itch, the position of the covers and/or the comfort level of my arms.
It’s all part of the process, you never quite get used to it.
Odd as it may sound, during my 30-plus years of traveling, I have, for whatever reason, always been fascinated when I am in another country to hear 3-year old children speaking fluent French or Italian or German.
I have no explanation as to why this should seem so remarkable to me being that they are only speaking their native language just as American kids speak English.
I mention that because ALS has, in its own way, provides a corollary to that observation in that now when I watch children playing it is their freedom of movement that fascinates me.
Perhaps it is some small form of jealousy that I can no longer relate to such simple everyday tasks, but time has eroded any personal recollection of such freedom.
The perceptions and struggles of an ALS journey are constantly in motion.
I have now written enough of the Living With ALS columns to have the foundation for a book which might, hopefully, help others in their battles.
As a working title, considering the loss of using my arms is the biggest offender, I think I will call it, “Living with ALS: A dis-arm-ing leg-acy’.”
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