I’m Craving a Measured Change of Seasons

Rick Jobus avatar

by Rick Jobus |

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“When she walks, she’s like a samba,

That swings so cool and sways so gently,

That when she passes,

Each one she passes goes, ‘Ah.'”

One day last month, if the “tall and tan and young and lovely” striking presence of “The Girl from Ipanema had “passed me by,” I would have missed out on the communal tribute described in the “Getz/Gilberto” album. On that morning, I awoke unable to move my neck without incurring tortuous pain. Not only was panoramic visual surveying out of the question, but also the torment-free zone was restricted to my chin rising no higher than 10 degrees below a level parallel to the ground.

All standard attempts at relief proved futile. Massage and ibuprofen were powerless. Topical lidocaine and mint packed no punch. The only treatment that even hinted at suppression was equine liniment gel. But the dermal irritation it produced caused my skin to strenuously cry out a veto. 

Unfortunately, in this case, Geoffrey Chaucer’s words from the poem “Troilus and Criseyde” proved prophetic: “As tyme hem hurt, a tyme doth hem cure.” It would be a full week until unfettered neck movement was possible again. For that duration, the interconnectivity of my body’s function was amply illustrated.

I was painfully reminded that my neck is an involuntary participant in many of the remaining functions I can still attempt to carry out. It is a silent partner in chewing, swallowing, yawning, and forming facial expressions. It is violently engaged in reflexive coughing, which I erupt in often. It is even notified when a distant cousin acts up, and mysteriously made aware when a finger strikes a keypad or a leg muscle twitches.

Ever since my diagnosis, the temptation to lay blame for any trial or tribulation at the feet of ALS has been pronounced. And it’s often correct. Relative to this episode, I wasn’t as inclined to make that indictment. 

I no longer am able to do anything at “breakneck speed.” My core strength is so meager that the posturing required to kneel before a chopping block is an impossibility. Hence, my neck is stuck out for no one. In the absence of obvious causality, what was behind my prolonged whiplash-like symptoms?

When folks of my age demographic attempt to explain similar confounding occurrences, they often grudgingly conclude that the culprit is the ravages of growing older. Hmmm, ALS or advancing years? Therein lies one of ALS’ nasty hidden truths: We are robbed of the aging gracefully experience. Instead, we are jettisoned forward, one dismal quantum reality at a time. 

The Merck Manual, a go-to medical textbook, notes that beginning at around age 30, muscle mass and strength drop an aggregate of up to 15%. That suggests a healthy person will exhibit a gradual erosion of physical prowess with the passage of time. For someone stricken with ALS, it’s more like a free fall.

I was an avid golfer prior to my diagnosis. Shortly before that fateful day, while undeniably already beset with ALS, my golfing skills decreased precipitously. Over the course of two consecutive rounds — using the same clubs, brand of ball, and technique, and while playing the same course in identical weather — my shot distance became 25% shorter.

That stark contrast was a harbinger of other rapid output reductions. Once, in the span of two months, my ability to independently transport myself changed dramatically. I went from being able to walk to my heart’s content (albeit at a snail’s pace and aided by a rollator) to being wheelchair-bound during any excursion outside the predictable confines of my home. 

And I am among those that the medical community defines as progressing slowly.

ALS masks other losses felt while maturing. The Merck publication cites, among other slowly diminishing functions, that:

  • After urination, more urine remains in the bladder. (Given that I never benefit from the gravity assist afforded by upright standing and sitting, my bladder never empties.)
  • The spectrum of discernible tastes narrows. (I can’t tell, as my constant choking threat has led to draconian dietary restrictions.)
  • Flexibility lessens. (My flexibility flew the coop long ago. I can’t comb my hair, play air guitar, or scratch either shoulder.) 
  • Weight increases, prompted by metabolism decreases. (I’ve dropped 30 pounds since ALS onset.)

In the Bible, Ecclesiastes 3 states that, “To every thing there is a season,” including “a time to lose; … and a time to cast away.” For me, that is a soulful treatment of the prospect of normal aging.

Typically, I am not the whining sort. But today, if pressed for a complaint, I have one at the ready. My grumbling would be that I am unable to grouse about my creaky joints, rickety bones, muscles in malaise, shortened stature, and expanding paunch — all solely brought upon by Father Time. It’s impossible for me to relate.

I mourn over my lost seasons.


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.


Twila Thalberg avatar

Twila Thalberg

You have every right to mourn & grieve your losses. I am reminded to be thankful for my age related osteoarthritis pain. May God bring you comfort today Rick!

Ellyn Maloney avatar

Ellyn Maloney

Your article, although I wish it wasn't so, makes those of us who are aging (maybe gracefully) more grateful for what we can experience. You made me realize that my little aches and pains are quite bearable. Thank you for sharing and you have every right to whine (all the way home)

In faith and hope!

Dave Reckonin avatar

Dave Reckonin

"May God bring you comfort today Rick!"
May Science bring you comfort today, Rick.

Rick Jobus avatar

Rick Jobus

Thank you Dave. I wish you the same!

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