CHARLOTTE, NC: Every day with Amyotrophic lateral sclerosis or ALS is an adventure. Most of the time it’s not pleasant, but there are exceptions now and then. Sometimes, there are actually benefits, though I can’t think any at the moment. As I have mentioned on several occasions, sleeping can be one of the most challenging parts of the day because it is so often difficult to find a comfort zone.
To begin with, my mind runs amok with crazy, often goofy ideas as my brain settles in for a rest and my subconscious takes over.
The always entertaining ALS Night Dreams
For example, one night early last week, I had a semi-dream that occurred somewhere in that brief transitional stage where you are partially awake but just on the cusp of deep sleep.
I plodded (plodding is how I walk these days, and with each passing day, naturally “the plod thickens”) into a mattress store wearing formal pajamas. In case you’re wondering, formal PJ’s have a bow tie.
“May I help you, sir?”, asked the clerk. I knew immediately it was a dream because he used the proper word “May.”
“Name’s Bob,” I replied. “James Bob. I’m looking for a hard mattress.”
“Any particular brand?”
“No,” I answered, “Just one that can be tossed, not turned.”
And so it goes. From “shaken, not stirred” to “tossed, not turned.”
One night, I did manage to roll over to my right side, but not far enough to extend my left hand completely. While reaching for the metal bar at the head of my bed to pull myself closer, the silhouette of my left hand, which was positioned somewhere near my left cheek, appeared directly in front of my line of vision.
I freaked. All I could see were stubby dark groping fingers reaching out in front of me with a hand literally protruding in front of my eyes. It was like being in some weird Alfred Hitchcock movie.
The long and eerie ALS night
My room is dimly lit at night thanks to a trilogy machine which I use to bolster respiration. The best way to describe a trilogy is to define it as a C-Pap on steroids.
At night, the trilogy generates just enough light to establish an eerie glow in the surroundings, thus creating the sinister aura I encountered.
Somehow the events of any given day can, and frequently do, creep into my dreams. One aspect of ALS that happens first to patients and later to those around us, is that we naturally forget that certain things are no longer possible.
The Heart is a Lonely Hunter
Just before retiring the other night, we settled in to watch an old Alan Arkin movie titled The Heart is a Lonely Hunter.
The story revolves around a gentle, caring deaf-mute who is always doing kind things for other people. Halfway through the picture, my wife has an epiphany.
“I know,” she said excitedly, “when you get to a place where you can no longer speak, maybe you can learn sign language!”
I just turned and gave her a blank stare until she remembered that I no longer have the use of my arms.
In an odd way I felt a bit like the medieval Black Knight in the movie Monty Python and the Holy Grail. The knight who became a talking torso after losing both arms and both legs in battle.
They sleeping Pythagorean Position
In the process of seeking nighttime comfort, I have finally discovered a new sleeping position which does allow my arms a few minutes of reprieve every couple of hours.
I call it, for lack of a better term, the “Pythagorean Position” and it works like this. I grab the right side of the mattress with my right leg and roll onto my back. Once there, I use my left leg to establish balance and then, with some effort, pull the covers back over me with my hands.
Though I am now temporarily “recovered” because there really is no recovery with ALS, at least I am laying on my back in a diagonal position.
Though it may sound odd, it’s actually quite relaxing.
The name derives from the fact that my body has now become the hypotenuse of a human/mattress triangle. (Hypotenuse — Now there’s a word I never thought I’d use again after graduating from high school)
The solution is only a temporary mind you, but it does provide enough relief to allow me to get back to sleep more quickly.
Sleeping Ear Worms
A few weeks ago, I mentioned that during some of these nocturnal processes I hear recurring music in my head in my own personal radio station I call WALS. Given the current border debate, I rarely mention that, however, out of fear it might be politically misconstrued.
Now that Tie Me Kangaroo Down Sport is no longer a part of my nightly musical mental repertoire, the piece I hear most often is Frank Sinatra singing My Way.
And so the adventure continues.
Personally, I really don’t much care what music I hear in my head, just so long as it isn’t Taps.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is anaward-winningg television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up