ALS Awareness: What It’s Worth
“I think it’s time we stop, children, what’s that sound? Everybody look what’s going down.” That call for awareness comes from the song “For What It’s Worth” by Buffalo Springfield. The song’s writer, Stephen Stills…
Notes From the ALS Front - a Column by Rick Jobus
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.
Mission Impossible? The Quest for Perpetual ALS Awareness
In 1992 the 102nd U.S. Congress declared, via joint resolution 174, that May become National ALS Awareness Month. Part of the text speaks to “finding the causes of, and the cure for, ALS will prevent the…
On Planning to Get Punched
“Everybody has a plan until they get punched in the mouth.” –Mike Tyson The author Lee Child includes that quote in his Jack Reacher crime novel series as part of the title character’s mantra. Reacher always endeavors to strike the first blow. The…
With Apologies to Ian Fleming: Squaring Off with ALS and COVID-19
“The mind ought sometimes to be diverted that it may return to better thinking.” –Phaedrus (Plato) During these surreal times that shake us to our core, a mindless diversion is welcome: Have you heard the one about the three professional killers who walked…
Talking Trash with ALS
The ancient Greeks first introduced the term “parrhesia,” meaning “free speech,” around the end of the fifth century B.C. From a literal perspective, ALS has taught me that the concept is a misnomer. Like nearly everything else, there is…
Painting Broad Brushstrokes from ALS to COVID-19
Recently I chanced upon a re-broadcast of an entrée from the PBS series, “American Masters.” As the subject, Andrew Wyeth, was one of my late dad’s favorite artists, I enthusiastically opted in. It did not disappoint. Beyond inspiring…
In the ‘Way Back Seat’ with ALS: Learning to Live on Autopilot
“Baby, you can drive my car …” I was reminded of that Beatles lyric last Sunday while listening to my pastor’s sermon. Titled, “Taking the Back Seat,” the sermon’s theme was about subordinating our desire for control in favor of…
Facing the Rarefied Air of ALS with Dignity
“I don’t want to belong to any club that would have me as a member.” That sentiment, expressed by comedian Groucho Marx in 1949 about his affiliation with a particular social organization, was exactly my reaction in learning of…
My Diagnosis Anniversary: Revisiting the Start of My ALS Journey
“Lately it occurs to me what a long, strange trip it’s been.” –Grateful Dead, “Truckin’“ Last month, I quietly acknowledged the 13th anniversary of my ALS diagnosis. As in years past, I mentioned the occasion’s passing to no one. Instead, the…
The Art of Declaring War on ALS
Upon the death of someone with ALS, a common theme is often invoked. Words such as heroic or courageous may be chosen to characterize the deceased. The disease’s course is invariably described as a battle or fight. The implication is that ALS is a brutal and unscrupulous enemy.
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