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.

Bearing Down With Equine Intent

“Welcome to my nightmare, whoa, “Welcome to my breakdown, “I hope I didn’t scare you …” If there were a “Welcome Wagon” function in the ALS community — whereby incumbent residents indoctrinated new arrivals — surely the introduction would resemble those lyrics from Alice Cooper. Grim statistics and personal…

In Pursuit of the Perfect Omelet

“No one knows what it’s like, “To be the bad man, “To be the sad man, “Behind blue eyes.” – The Who Last week, it was time for the annual agency performance audit of my aides. Actually, owing to COVID-19, the one for 2020 hadn’t taken place. Consequently, the…

Come Smell the Bacon

“Everybody’s talkin’ at me, Can’t hear a word they’re sayin’, Only the echoes of my mind.” – Fred Neil ALS has rendered me a minimalist creature of habit. My weekday routine includes the intersection of paranoid caution, practiced routine,…

Life Imitating Art Imitating Life

“They’re gonna put me in the movies, They’re gonna make a big star out of me, … And all I gotta do is act naturally.” — Johnny Russell Two weeks ago, I referenced several catchphrases from…

I’m Craving a Measured Change of Seasons

“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…