Is It Do-si-Do or Do-si-Don’t With a New Home Healthcare Aide?
“I been in the right place, but it must have been the wrong time, I’d have said the right thing, but I must have used the wrong line, I’d have took the right road, but I must have took…
Notes From the ALS Front
— 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.
Featured Post
A Plot-twisting Cliffhanger That Leaves Me Breathless and Hospitalized
“Take my hand, precious Lord, Lead me home. … When my life is almost gone, Hear my cry, hear my call, Hold my hand lest I fall.” Although I fall light-years shy of the realm of gospel music aficionado,…
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A Musical Medley That Stands the Test of Time
“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. …
Simon Says, Breaking Up Is Hard to Do
“‘The problem is all inside your head,’ she said to me, ‘The answer is easy if you take it logically,’ … She said, ‘It grieves me so to see you in such pain, I wish there was something I…
Some Serious and Silly Words With a Friend
“I know all too well it don’t come easy, The chains of the world they seem to movin’ tight. I try to walk around, if I’m stumbling so come, Tryin’ to get up but the doubt is so strong,…
Assessing the Contents of the Toolbox While in Exile
“By the rivers of Babylon Where we sat down And there we wept When we remembered Zion But the wicked carried us away in captivity Required from us a…
‘Mission Impossible’ Merits a Blockbuster Cast
“To dream the impossible dream, To fight the unbeatable foe, … To reach the unreachable star, … This is my quest.” Vanquish ALS! Last week, my wife and I enjoyed a visit from a dear friend of ours. Interactions…
The Same as It Never Was
“And you may find yourself living in a shotgun shack … And you may ask yourself, ‘Well, how did I get here?’ … Letting the days go by, same as it ever was.” Although I’m not proud of it,…
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.
Someone Thought Enough to Write About ALS, and It’s About Time
“The book I’m not reading is riveting The book I’m not reading keeps me up at night The book I’m not reading is better than TV Giving me insight.” These lyrics from “The Book I’m Not Reading,” by…
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…
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,…
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