Reblog: ALS Cannot Change Who I Am

ALS Cannot Change Who I Am



“You just got lesson No. 1: Don’t think; it can only hurt the ball club.”

That was the advice that Kevin Costner, who portrayed baseball player “Crash” Davis, dispensed to Tim Robbins, who portrayed rookie pitcher Ebby Calvin “Nuke” LaLoosh, in the 1988 film “Bull Durham.” Ordinarily, I opt for the cognitive approach. Being an engineer and a fan of the rock band Devo, I invariably feel that, “When a problem comes along, you must whip it.”

The other day, I would have benefitted from being less Devo and more Crash.

I have two choices for where I spend most of my days. On the majority of days, I remain stationary in a recliner. But when the allure of ambulation outweighs the hassle of additional transfers, I choose a power wheelchair. Regardless of my selection, I am similarly plagued by the byproducts of ALS, one of which is the coughing of partially swallowed saliva.

When I get to coughing, there are times when my legs may involuntarily splay violently. For that reason, when I am in my recliner, I have an enclosure around my ankles, lest my legs end up off the footrest, where they will awkwardly remain until someone replaces them. The occasion is not as dramatic when in my power wheelchair, but foot movement is still prone to happen. Plus, I have nothing holding my legs in place.

Sure enough, that morning I had a coughing spasm, sending my right foot to jump to a supination angle of about 20 degrees, balancing on the right edge of the footrest.

Determined not to spend the day that way, I devised a method (ingenious, to my way of thinking) to restore proper positioning. I maneuvered the chair so that the right side was parallel to an unobstructed junction of two walls, only millimeters away from touching one of them. (A side benefit of not being personally ambulatory is that I have become rather adept at joystick navigation.) From that position, I moved the chair slowly and slightly to the right, confident that this minor collision with the wall would inch my foot back to its proper place.

It accomplished that and then some. Upon the plan’s completion, I now had my right foot securely wedged in a 30-degree pronated position between the two footrests. Now out of remedies that I could exercise on my own, I resigned myself to remaining that way until my afternoon aide’s arrival. As I was only wearing sandals, the frictional pain was not trivial. After being rescued hours later, the resulting crease on the top of my foot and general edema from ankles to toes had me ruing the outlandishly ambitious interventional thought process.

What is the lesson learned? That ALS sucks? Obviously, I already knew that. That my thinking is sometimes flawed? Countless examples demonstrating that fact have previously been registered. That some problems are “unwhippable?” For me, that is an unlearnable lesson. Armed with a “catch-as-catch-can” mantra, I never believe that a solution is beyond my grasp. I suppose that I never will. It’s who I am.

That, then, is the fundamental. ALS may chop off my legs, garble my speech, and place a piano upon my chest. But it cannot change who I am. It cannot alter my essence. It cannot conquer my spirit.

With apologies to the ballclub, I’ll go right along thinking.


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