A Musical Medley That Stands the Test of Time

Rick Jobus avatar

by Rick Jobus |

Share this article:

Share article via email
ALS News Today | Main graphic for

“The secret of life is enjoying the passage of time.” 

Time fascinates me, now more than ever. In my own way, in the face of ALS, I’ve learned to enjoy its passing. 

I am writing this seconds after hearing James Taylor’s “Secret o’ Life” on the radio. For those of us dealing with the time-compressing sadism that is ALS, Taylor’s observation warrants consideration. He is hardly alone in the community of composers in offering a philosophical opinion about time that is set to music. 

Recommended Reading
PrimeC | ALS News Today | illustration of audience viewing study data

#AAN2022 – US Real-world Data Show Radicava Boosts Survival Rate

Mick Jagger of the Rolling Stones sang that “Time is on my side.” Jim Croce fantasized about capturing “time in a bottle.” Culture Club lamented that “Time won’t give me time.” Chicago questioned, “Does anybody really care (care about time)?”

For those suffering from ALS, multiple perspectives regarding time are completely relatable. From the moment a diagnosis is delivered, time begins to exist in a plurality of forms. 

When you are face-planted against your own mortality, the immediate reaction might be similar to the lyrics from the song “Clocks” by Coldplay: “Confusion that never stops/ Closing walls and ticking clocks.” 

The only certainty is that you are being robbed both of time itself and the options to spend it. Due to ALS, your time is shrinking at an accelerated pace, and the rate of attrition is anyone’s guess. As such, it’s hard not to mourn its passing.

Personally, those doldrums took a while to shake. But gradually, I added a “you only live once” component to my perspective. Borrowing from the theme of an Irish wake and the copycat celebrations of life, I try to remind myself that every moment is potentially fete-worthy. That serves to suppress much of the grief accompanying longevity loss and opportunity erosion.

Of course, like most folks, I crave more earthly time — curiously, even the painful episodes. Increasingly, I attempt to slow down the timer framing my existence. However, I’m at peace with whatever the adjudication of my fate turns out to be.

Yet ALS won’t let the plea deal go unchallenged. As my ability to perform even the most basic of human functions continues to vanish, I find it more of a task to enjoy the passing of time. The world I inhabit too often resembles the one Styx describes in “Too Much Time on My Hands”: “I’ve got nothing to do and all day to do it.”

Taylor’s lyrics imply that while the hourglass empties, such an inert life can be pleasant: “Any fool can do it, there ain’t nothing to it, … time isn’t really real. It’s just your point of view, … [t]ry not to try too hard.

I struggle for extended periods with invoking such a seemingly laissez-faire approach. My desire for purpose and productivity frequently flies in the face of “letting the game come to me.” This typically prompts an internal tug of war somewhat akin to what Coldplay mentioned in the aforementioned song: “Cursed missed opportunities/ Am I a part of the cure/ Or am I part of the disease?”

I need to mix some militancy into the recipe, something to remind me that, in spite of dwindling bodily assets, I still can have an impact, however meager. A heaping helping of some Chambers Brothers’ “Time Has Come Today” should do the trick: “I’ve been crushed by tumbling tide (time)/ And my soul has be psychedelicized (time)/ Now the time has come (time)/ There are things to realize (time)/ Time has come today (time).”

Regularly, I close my day by meditating on accomplishments during my waking hours. For a while, I was so preoccupied with directing my energies toward “worthwhile” pursuits that I considered a personal scoring system. For example, writing this column would appear on the positive side of the ledger, while online gaming would detract from the day’s tally. I held no illusions that a “perfect” score would be achievable. Rather, my intent was to minimize the “time-wasting interludes.”

Ultimately, I scrapped the notion. Instead, I added as rationalization this bit of wisdom often attributed to John Lennon (but actually written in a 1912 book by Marthe Troly-Curtin): “Time you enjoy wasting is not wasted.” 

For many, life is a balancing act. ALS demands that. Neil Young captured that concept in his song “Comes a Time”: “Comes a time when you’re driftin’/ Comes a time when you settle down.”

Green Day offers sage advice in the song “Good Riddance (Time of Your Life)”: “Time grabs you by the wrist, directs you where to go/ So make the best of this test, and don’t ask why/ It’s not a question, but a lesson learned in time.”

My lesson is that ALS doesn’t alter my charter of “work as able, rest as needed, pray often.” As Dooley Wilson crooned in the movie “Casablanca,” “The fundamental things apply/ As time goes by.”


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.

Comments

Julie Spechler Fink avatar

Julie Spechler Fink

Thanks for sharing, Rick. My husband, George (who passed from ALS in 2018), actually requested James Taylor's Secret of Life at his Celebration of Life. The words resonated with him as well. Julie

Reply
Tim Charles avatar

Tim Charles

Rick, you're a true inspiration. Can you share what tool(s) you use to be able to write this article (or write emails, etc.). I'm asking for my older brother who was ALS diagnosed in 2018 (his name is Rick also). I'v read of technology used by pALS that allows eye tracking for speech and control. Anything you can share would be appreciated. God Bless! TIM ([email protected])

Reply
Rick Jobus avatar

Rick Jobus

Thank you for the kind words. I'm sorry to learn about your brother.
I use a Tobii Dynavox I series. I have the 16-inch screen. Medicare covered 80% of the cost, and I reached out to Team Gleason for the remainder. I am able to do everything with my eyes, that it was becoming difficult, if not impossible, to do with my hands and fingers. The acquisition process took less than two months.
If I can be of any assistance to your brother, or you, either email me at [email protected] or find me on Facebook. In the meantime, I'll be praying.

Sonovia Horace avatar

Sonovia Horace

Hi Rick,

Good Read! I can relate to this article. In my mind, I feel like I have so much to do but little time to do it. ALS has changed my Life. It is limited by time. Now, I'm focused on living my best life. Enjoying family and friends!

Reply
deb fabricatore avatar

deb fabricatore

Rick this was a fantastic read on so many levels. Thank you from my heart to yours
Deb

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.