JUNE 20, 2018

IN COLUMNS, NOTES FROM THE ALS FRONT – A COLUMN BY RICK JOBUS.

ALS has been a blessing to me.

You read that right — a blessing. Oh, it has been many other things: ordeal, handicap, curse, millstone, scene-stealer, tormentor, humiliator, predator, interloper, income garnisher, bully, danger, satirist, infidel, and terrorist. It strives, ultimately, to be my terminator. But, if not for ALS, I would not have returned to God when I did, and maybe not at all. The implication should be obvious.

For me, faith has been indispensable in my war against ALS. It is, by far, my most potent armament, the one never-failing constant. Both a defensive stalwart and an offensive juggernaut, it is, amazingly, self-replenishing. I cannot imagine staring down a terminal illness without God in my corner. He gives me the “peace which surpasses all understanding.”

Knowing that “peace” greatly aids me in vanquishing anxiety. With ALS, anxiety can be a constant companion. When the accomplishment of anything is not a foregone conclusion; when your safety is in jeopardy with each passing moment; when yesterday’s successful survival tactics can, without warning, no longer be counted on today; when the slightest change in routine can result in traumatic turbulence … angst is sure to come calling.

Our reality is that we are forever adapting to our body’s changing landscape. Yesterday I could make it to the bathroom; today I soiled myself twice. Last week I could grip a glass of water with ease; this week I dropped three of them. One time, I inexplicably sprained my wrist. This morning I transferred myself from bed to wheelchair, this evening, when attempting the reverse, I ended up facedown on the floor in a pool of blood. Our margin for error in completing daily tasks is infinitesimal.

Our reliance on environmental constants is cartoonishly gigantic. One year I changed units within the same condominium complex. The units, built one year apart, had the same floor plan. They had, very nearly, the same dimensional footprint. I found out the (literally) hard way that the shower in my newer condo was four inches longer. With a head full of shampoo, and my eyes closed, my trust in spatial certainty failed me when I attempted to avail myself the security of a grab bar, only to find a handful of air.

Faith can assuage the stress that would normally accompany these real (and fretted about, potential) occurrences. During my run-in with ALS I have suffered four serious falls, and three rather frightening choking episodes, not to mention the various and sundry, less precarious challenges. Through each of them, the moment I remembered that God is with me, calmness overcame me. I gained control over the situation and solutions presented themselves. Faith, and the resulting “peace,” gives me a measure of control.

Faith also provides purpose in an otherwise senseless and unpurposeful time. The emptiness, uncertainty, dumbfoundedness that sets in can at times be paralyzing. There are no answers, not even partial ones. You can’t even lament having put yourself at risk, because the cause is unknown. The temptation to merely acquiesce to your newly dispensed fate, and simply give up, or, worse yet, unleash one’s hidden demons, looms large. What do you do? How do you spend your remaining days, as measured by an uncalibrated, upside-down timeglass?

I ask God that question regularly. Often He will direct me to someone in need. Helping someone may, at the moment, be selfless, but, for me, in the grander scheme, the gesture carries with it a Pavlovian selfishness. I always get back more than I put in. In fact, I’ve received an exponentially greater amount of goodwill in return. By then “praying it forward,” the exponent itself increases. I try to be on a vigilant look-out for those needful of emotional assistance.

God also always instructs me to be an example. What beautiful motivation to strive to rise above the woes of today! I tell myself to, whenever possible, laugh, don’t cry. Be cheerful, not bitter. Exhibit stoicism, not turmoil. Be content, not resentful. Be at peace, not in conflict.

Remember that ALS (as Stephanie Hubach said about disability, in general) “is just a more noticeable form of the brokenness that is common to the human experience.” It’s just a difference of degree, on a spectrum that contains difficulty along its entire length. Due to God’s common grace, no one exists in a state of complete brokenness.

Regardless of your flavor of god, or if you live god-free, a strategy worth considering is this:
1. Find your “peaceful” center
2. Assist others toward theirs
3. Elevate your center despite the disease’s gravity

All that, and identifying and celebrating blessings, have helped to keep me valid and vital.

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