Notes From the ALS Front - a Column by Rick Jobus

living, what's next, train, sweetness, support groups

Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.

Twisting the Night Away on the Titanic

“And you know that you’re over the hill, When your mind makes a promise that your body can’t fill.” This refrain from the Little Feat song “Old Folks Boogie” could have been written with ALS sufferers in mind. It partly portrays our truncated existence. It humorously depicts making the…

Fighting the Predictable Unpredictability of Rare Disease

“Will you still need me, will you still feed me, When I’m sixty-four” Paul McCartney wrote the song “When I’m Sixty-Four” four decades before reaching that age himself. McCartney admitted that the number was chosen arbitrarily. He later quipped during an interview that 65 would have been a…

Technology Blazes a Trail Out of the Wilderness

“Keep off the path, Beware of the gate, Watch out for signs that say ‘hidden driveways.’ Don’t let the chlorine in your eyes, Blind you to the awful surprise, That’s waitin’ for you at, The bottom of the bottomless, Blue, blue, blue pool, You’re livin’ in your own private Idaho.”…

The Soulful Benefit Arising From Punching a Clock

“‘There must be some way out of here,’ said the joker to the thief, ‘There’s too much confusion, I can’t get no relief.'” When I first heard “All Along the Watchtower” by Bob Dylan, I thought, with my 9-year-old sensibility, that the song referred to a monolith of timepieces.

Seeking Input for a Novel Idea

“Dear Sir or Madam, will you read my book? It took me years to write, will you take a look? … If you must return it, you can send it here,  But I need a break, and I want to be a paperback writer.” A story in a London…

The Unexpected Joy Emanating From Detective-watching

“Cellophane shrink-wrapped, so correct Red dogs under illegal legs … She is watching the detectives ‘Ooh, it’s so cute.'” Elvis Costello’s homage to film noir crime drama, “Watching the Detectives,” inadvertently became a musical tipping point as 2021 bled into 2022. On Dec. 30, my pastor — and dear…

The Glorious Domino Effect From a Toppled Landmark

“And I hope when I get old I don’t sit around thinking about it But I probably will Yeah, just sitting back trying to recapture A little of the glory Well time slips away and leaves you with nothing, mister, but Boring stories of Glory days …” Bruce Springsteen’s…