Enjoying the Vagaries of Life’s Carnival Ride

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by Rick Jobus |

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relationships, ALS Awareness Month, life lessons, anniversary, the plague, movies, aging, bucket list, treatment, extraordinary, carnival ride, living, what's next, train, sweetness, support groups

“Run away, run away/ It’s the restless age/ Look away, look away/ You can turn the page/ … Take away, take away/ This house of mirrors/ Give away, give away/ All the souvenirs.”

The other night, I awoke to a profound sense of sadness. My initial reaction was, as is typical, to quickly extricate myself from the realm of despair. Just like the lyrics from The Band’s “Life Is a Carnival,” I wanted separation.

For whatever reason, I couldn’t shake the doldrums that night. When morning came, still accompanied by a decidedly blue emotion, I became motivated to launch some introspection. What made me sad? If I couldn’t beat it, at least I could maybe understand it.

Lisa Firestone, PhD, makes a case for the value of sadness. She advises that letting “ourselves feel our real sadness about real things” is healthy. Among the generic sources of sorrow, she includes “the pain of existential issues, loss, diseases and deterioration and, ultimately, death” — exactly the world that ALS invites us to inhabit.

Regret can also play a role in promulgating sadness. Per Psychology Today, “feelings of regret are more likely to occur and more prominent under situations when there is no opportunity to rectify the decision or action.” ALS is a rapid opportunity window closer. Unless one emulates the Edith Piaf song “Non, Je Ne Regrette Rien” (“No, I Don’t Regret Anything”), rumination-driven funk is a possibility.

In my case, sadness may also be stirred by what Rolling Stone magazine characterized as the major theme of the album “Cahoots,” which includes “Life is a Carnival.” Observing, from a helpless vantage point, the growing disappearance of societal standard operating norms, without noble replacements, troubles me.

With all of that kindling at the ready for a remorse bonfire, it still required something to set it off. In this case, it was my stepdaughter’s assimilation into a new job that provided the match. It was my inability to assist her in that transition that struck it. As all categories of emotional tinder were ignited, it smoldered for hours.

It began with my stepdaughter sharing the challenges associated with beginning a new job, functioning remotely, and reporting to a manager located three time zones away. The conversation transpired on one of my bad intelligibility days. My feedback was limited to shaking my head, grunts, frowns, and smiles. It was loss, disease, and deterioration reinforced with Louisville Slugger-to-the-forehead-like impact.

The entire episode is a byproduct of part of the world, as I knew it, vanishing before my very eyes. Granted, COVID-19 has been an unforeseen accelerant, but in a work-from-home environment, the synergistic energy derived from in-person interaction is lost. In particular, the warm honeymoon onboarding period, sure to include empathetic communal breaks, has been replaced by the stark, cold-shower reality that you’re on your disposable own. 

I anticipated the unevenness of my stepdaughter’s career change. I regret not discussing it as she was contemplating her move. Not that it would have necessarily altered her course, but forewarned is forearmed. Perhaps some angst could have been averted.

My sadness in question sprung from a complex, multilayered ball of confusion. It was real by any measure. Per Firestone, I should allow it to move wavelike: peaking, dampening, and eventually dissipating. Cue my version of “Surfin’ Safari.”

With regret, that is fairly straightforward. Unlike Piaf, my past is littered with longed-for mulligans. I assuage related guilt by affording my imagination some open-field running. I envision the replay of select inglorious behaviors and indelicate decisions. In a parallel universe sort of way, outcomes are improved.

In similar fashion, I attend to my nostalgia for eras bygone. I’ve come to realize what I long for is the higher quality social interaction of days of yore. My pastor defines righteousness as maintaining proper, loving relationships with God and fellow man. In that vein, I don’t desire the benefits of today’s age be vaporized. Instead, I conjure up ways for the righteous void, left in the wake of progress, to be filled.

I never consciously dismiss ALS. My nocturnal world does that plenty. In my dreams, I don’t have ALS, am well on the way to full recovery, or am far less symptomatic. However, when awake, I do utilize the faculty that ALS can’t impinge upon. I pray. For me, the everlasting comfort that flows from communicating with God outweighs any short-term suffering.

At the end of the day, it’s not about fairness. A friend of mine was prone to say, “A fair is the place you go to ride the rides.” Rides have unexpected ups and downs, sudden twists and turns, and movement forward and backward. With luck, tomorrow is another day, offering a new ride. 

After all, life is a carnival. Enjoy!


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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