In the ‘Way Back Seat’ with ALS: Learning to Live on Autopilot

“Baby, you can drive my car …”

I was reminded of that Beatles lyric last Sunday while listening to my pastor’s sermon. Titled, “Taking the Back Seat,” the sermon’s theme was about subordinating our desire for control in favor of God’s will.

The accompanying image introducing the topic was that of a “way back seat” in a vintage station wagon. The subtext of the message was the difficulty in handing over the keys to life’s journey. Regardless of your position relative to the “God created man” versus “man created God” debate, if you have ALS, the back seat’s a-comin’.

Surrendering the ability to command an automobile is but one in a series of steadily occurring forfeitures that a person with ALS encounters. The culmination is an eventual ceding of all driver-like control as we stumble onward. But while we may no longer choose life in the fast lane, that doesn’t mean we’re on a road to nowhere. Clearly, ALS mandates that we trek on the road less traveled. With that acknowledged, kicks still remain to be had on our figurative Route 66.

Even when not driving the car, life offers an infinite kaleidoscope of sensory stimuli to be explored and savored. The curiosity itch can always be scratched. Take heart of the words of Dr. Seuss: “So … / be your name Buxbaum or Bixby or Bray / or Mordecai Ali Van Allen O’Shea, / you’re off to Great Places! / Today is your day!” And remember, “Onward up many / a frightening creek, / though your arms may get sore / and your sneakers may leak.” (From “Oh! The Places You’ll Go!”) 

Enjoyment, fulfillment, and peace need not be in short supply. The weekly CBS series “On The Road” is illustrative. The show uncovers touching stories from unique people and special places around the country. Even from the vantage point afforded by a wheelchair, a no less meaningful cornucopia of encounters can be experienced. 

When the overwhelming trepidation that ALS invokes begins to set in, the example of the “Road” films starring Bob Hope and Bing Crosby may be instructive. Across seven films, with character names changing from picture to picture, the films nearly always portrayed men who didn’t take even the direst life-or-death situation too seriously. The plots openly mocked the notion that anything that happens has to make sense. 

An argument can certainly be made that contentment, while in the way back seat of an ALS station wagon, is easier described than found. As a rebuttal, I offer a beautifully supportive example, whose timing was eerily coincidental with my pastor’s sermon.

Recently, I wrote about the “rare” qualities that my cadre of ALS sufferers embody. A week prior, I touched on my reaction when one of them dies. Fittingly, on Rare Disease Day, both of those themes were manifested in a bittersweet manner when a friend concluded his wrestling match with ALS.

Gary Geheire and I were sort of kindred spirits. On the surface, that may seem strange. The list of our known commonalities was short — ALS, married, and of the Christian faith. We never met in person, and our interactions were brief and infrequent. Yet I counted him as a good friend whose upbeat perspective has been additive to my life.

He was so cheery that I was completely taken aback when he informed me of his imminent death, just two days before the occurrence. I had no clue as to how aggressively ALS had besieged him, or how ominous his health status had become. Clearly Gary was no complainer. Suddenly I wanted to know more about him. With no better source material available, I resorted to perusing his Facebook page. 

What I found cast a portrait of an avid naturalist enjoying his surroundings in spite of his affliction. He had posted videos of a giant swallowtail butterfly cavorting in his garden, a sunrise from his deck, and the first snow squalls of the season. He also had shared various photographs of breathtaking flora, further demonstrating his love of nature and his delight in capturing it.

More telling were the comments in response to the announcement of his passing. Further corroborating his fondness for wildlife, was the suggestion that Gary “is already discussing the various birds of heaven with those around him now.” Numerous mentions of him being an inspiration and mentor were made. These are not words used to depict a bitter, sulking back seat passenger. Several comments lauded Gary’s certainty that, once concluded, his journey would leave him “whole.”

The news of Gary’s death stirs conflicting emotions in me. Selfishly, I am saddened. However, when I think of his  radiant behavior while relegated to the “back seat,” and when I imagine him entering heaven, joyously singing the last refrain from the aforementioned Beatles song, “Beep beep’m beep beep yeah!!!!“,  I can’t help but smile.***

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