CHARLOTTE, N.C. One ALS patient recently described his affliction as “walking drunk while sober.” It’s a great visual for anyone struggling to deal with someone battling ALS ambulation. Which at some point involves ALS Russian Roulette. Let me explain.
All about ALS Russian Roulette
Last weekend, I found myself face-to-face with the floor in my office on three separate occasions. You would think the first incident would be enough to tell me to move a little slower, but as the other two tumbles quickly reminded me, I am hardheaded.
I prefer to call this condition ALS Russian Roulette. Every fall has the potential to be the last, depending upon what hazards are in harm’s way on a rapid gravitational drop to encounter something solid.
I have become so aware of the condition now that I have begun walking like Tim Conway’s on old man character on the Carol Burnett Show. I am thus bringing new meaning to the term “shuffle off to Buffalo.”
More about how ALS Russian Roulette works
The difficulty for me, individually, is that my right leg has a mind of its own. Both legs remain strong, though the left does retain slightly more muscle than the right.
What happens is, if I turn to the right too quickly and stumble just a little, I automatically try to compensate with a cross-over step from the left. Bad strategy. That’s when the earth rushes up to greet my head and any other body part that is in the way.
So far I’ve been lucky, but it is a serious condition to consider.
In which I encounter the Pillow Fight Hazard
Believe it or not, there are also hazards in bed. I recall how much fun pillow fights were when we were kids. No more. These days, a pillow for me is like a wrestling match with a one hundred pound marshmallow during the night.
Sometimes, if I get up to use the restroom, I try to push the pillow out of the way, but without any arm strength it can, and often does get into an awkward position that becomes a ready hazard for a successful escape from the bed.
Upon my return, it can take as much as 15 minutes to maneuver that pillow into a position conducive to sending me back to the Land of Nod.
Initially at least, most ALS patients strive to retain their dignity as long as possible. In other words, it all boils down to social upbringing and awareness of certain standards of courtesy and manners.
Emily Post and ALS
One of leading experts on proper etiquette, Emily Post, once wrote that, “Manners are a sensitive awareness of the feelings of others. If you have that awareness, you have good manners, no matter what fork you use.”
People coming in contact with someone with ALS may not understand at first how desperately we want to conform to proper social mores. Unfortunately, it’s not always possible.
For me, one of my primary difficulties is eating. Just getting my hands to my mouth can be a hassle. Especially with soup.
At other times, small grainy foods, such as rice, can be treacherous, often causing me to cough at the most inopportune times. Hot drinks can have the same effect.
People in the know simply go about their business and let the situation take care of itself, but for those who are unfamiliar with ALS, it can be embarrassing for both parties.
Mouth-watering treats take on a sinister dimension
Another common condition with ALS is increased saliva, which can add to the swallowing dilemma. As the disease progresses, this can lead to drooling, which is particularly discouraging in the presence of others. I call it “Komodo Dragon” syndrome, and though I have not had serious bouts as yet, I am anticipating the future and hope that I will arrive at a solution by the time the challenge arises.
At least I will not have to worry about walking with bow legs, sharp claws and dealing with lizard-like skin.
As Emily Post noted, using the wrong fork is not something that should be frowned upon. However, in the case of ALS, it is frequently easier to use a spoon than a fork with certain foods that are typically “stabbed” rather than “scooped.” That way, one avoids the utensil version of ALS Russian Roulette.
ALS sufferers commonly deal with such faux pas. The best solution involves simply overlooking them.
I mention all of this as a means of preparing those who read this to be alert to potentially unwary encounters with ALS patients.
Time to get less self-conscious
As time goes on, I am becoming less and less concerned with the ways in which my affliction affects others. Not because I don’t care, but because I do. There is simply nothing I can do to prevent it. Dignity be damned in many ways.
Years ago, the Smothers Brothers sang a little folk song that I thought was very clever. Its title: Crabs Walk Sideway and Lobsters Walk Straight.
The story centers around a crab that fell in love with a lobster while walking on the beach one night. The infatuation was love at first sight. But when the lobster told his parents she intended to marry the crab, they informed her that this would be impossible because “crabs walk sideways and lobsters walk straight.”
Heartbroken, the lobster informed his beloved that the marriage could never happen, and the two parted ways.
Then one night, a happenstance encounter took place, and the lobster noticed that her one true love was walking in a straight line. Figuring he had been taking walking lessons, she was thrilled, quickly clawing up to him with joy in her heart to tell him that NOW they could, indeed, get married.
To which the little crab replied, “Thash wha’ you think, Busta. Witch it cood be true but I’ll be soba in da mornin’.”
End of saga.
Walking drunk while sober
It’s a comfort for ALS patients to realize they are not alone in their dilemma. They all encounter some form of ALS Russian Roulette. As Mephistopheles once noted, “misery loves company,” but not in the sense most people think about it.
When you know that “you’ll never walk alone,” there is a sense of optimism that others share your plight. In its own strange way, it is a feeling of buoyancy for the victim.
In the Bible, Isaiah 58:10 tells us to “satisfy the desire of the afflicted, then shall your light rise in the darkness.”
In that sense “walking drunk while sober” can be a powerful reminder for us all.
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