Oh My God — I Have ALS

The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test Dummies, portray God as indifferent to our struggles. When he speaks of someone perhaps having “some strange disease,” the people didn’t know if it was “a parable, or a very subtle joke.” But “God said nothing.”

I periodically mention the impact that my faith has had on coping with the terrors of ALS. The reaction from some folks is one of incredulity. It may be that this type of response is, in part, prompted by a Dummies-like view of God. 

Regardless, a similar question is forthcoming. Just how can I believe in a God who, seemingly contrary to an all-loving nature, allows devastation like ALS to be possible? The answer is found in a combination of my simplistic world view, my engineering background, and the benefit that faith has had during my journey with ALS.

First, it’s easy to get trapped in the vacuum that ALS misery inexorably pulls you toward. The reality, of course, is that we all die. Be it from ALS, another disease, homicide, natural disaster, accident, or old age — life is a death sentence. The relative difference, from person to person, in the creature comfort enjoyed or pain suffered in our nanosecond of existence, is infinitesimally trivial compared to the finality of that sentence.

Second, I once was an engineer. That vocation cultivates a disciplined certainty that nothing happens by chance. Some force flipped the creation switch. That “big-bang” moment ultimately culminated in the only species capable of entertaining the notion of God. Common to all humanity has been “a basic belief in one’s own objects of worship.” Logic tells me that is not the byproduct of the tickings of an arbitrarily random cosmic clock. A “higher power” must be causal.

Lastly, there is the “what’s in it for me?” Besides the debatable premise of salvation, not a day passes in which my faith doesn’t pay psychological dividends.

ALS is a purveyor of paralyzing loneliness. Even in a roomful of people the isolation from normalcy is often painfully palpable. When I was diagnosed I was living by myself in a new state, between jobs, and with only a few local acquaintances. The news sent me into a dreadful tailspin. I had never felt more alone, naked, and afraid. Amid this crushing angst, my mind heard a voice: “I am with you.” Over time, and after receiving that message multiple times, I came to realize that God is always by my side.

That awareness not only assuages loneliness, but also it serves to tamp down the anxiety caused by ALS’s myriad precarious predicaments. My initial reaction to ALS havoc is often pure panic. Frantic agitation transforms to calm the instant I realize that no matter the outcome, as long as my faith remains intact, my place at God’s banquet is reserved. 

That confidence has served me well. From a four-night stay in the intensive care unit, to laying in a pool of my own blood, to choking, to second-degree frontal asphalt burns, I am eventually at peace with everything that ALS has served up. For me, “Thy name is as ointment poured forth” (Song of Solomon 1:3) rings true. 

Faith also occasionally allows me to construct a cocoon of sorts, which is impervious to all things ALS, for the duration of my stay. In the book “Experiencing the Depths of Jesus Christ,” by Jeanne Guyon, the process is described. By following the precepts offered by Guyon, I sometimes achieve complete rest before the Lord, which nothing can disturb. Perhaps the psalmist had that in mind when writing “Be still, and know that I am God” (Psalm 46:10). The delight, contentment, and love that I experience during these interludes is profound. The spillover lasts long after. 

I fully appreciate that faith in God is not everyone’s preferred vacation destination. But everyone, believers and nonbelievers alike, crave shelter from any storm. John Lennon’s song “Imagine“ begins with “Imagine there’s no heaven.” Sometimes characterized as an atheist anthem, it then goes on to describe some of the promised aspects of a heavenly afterlife. 

Faith allows me to imagine that there is no ALS. If I am wrong about God, then upon my death, I return to oblivion none the wiser. But I will still have been blessed. For even in the face of ALS, my faith has afforded me serenity and joy as I traverse this vale of tears. Minimally speaking, via a virtual shuffling of feet, I enjoy a slice of heaven on earth.

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