June 2025
Read my lips
Do you struggle to bench press a half-pound book onto your lap? By the time your fumbling fingers finally turn one of its pages, do you forget what you’re reading? If so, you might have ALS, like I do. Let me share the not-so-sad story of how I learned to have my cake and read it too.
Throw the book at him. Any photograph of me on family vacations captures a sullen teenager, clutching a book to my chest, having just been interrupted from reading. This habitual reading drove me to seek my daily fix and led to a summer of petty theft that will surely send me to hell (see journal entry for January 2024). Little did I know that years later, I would be cured of this addiction by ALS. One happy side effect was that I no longer bought books on Amazon and contributed to Jeff Bezos’ next billion. Instead, I gave him money for a Kindle.
Throw another Kindle onto the fire. I missed the weight of books in my hands and their tangibility. A Kindle is a poor substitute for them—great for travel, but I wasn’t going anywhere except my deck in pleasant weather. Maybe I lack imagination, but everything read on that sleek, soulless device felt flat and insubstantial to me. Not to worry, Amazon had a solution for that problem, too.
Lip service. Before there were writers and books, there were storytellers. I happily subscribed to Amazon’s Audible and embraced that proud oral tradition. That doesn’t mean I completely abandoned written words. After all, you’re reading this journal entry, but it was dictated in a soft, halting voice to Sarah, my favorite caregiver.
I’ll have more to say about my voice next month, but in the meantime, there’s a homework assignment for you to complete. Repeat the word “buttercup” for 10 seconds as quickly and clearly as you can. Don’t complain because I've had to do this for 3 years.
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May 2025
Three years ago, in the otherwise merry month of May, I received a diagnosis of ALS. My grandmother was fond of saying, “Every day above ground is a good day.“ Even as a child, I knew this to be a gross exaggeration. For example, the day a Swedish kid stole my roller skates was a bad, bad day. These past three years with ALS have done little to convince me that every day is a good day. Nevertheless, I strive to honor her commitment to life with Steve’s Still Above Ground Festival, now in its third year.
You’re all invited to a day filled with fun, games, and prizes, including a sneak peek of a highly anticipated sci-fi thriller. Here are some exciting events you can look forward to:
The No Legged Race, also known as the Caregiver’s Carry, is a perennial favorite at the festival. For intrepid contestants, we’ve added a 26-foot marathon. I recommend that caregivers prepare for this event to prevent injury. For those training with ALS, please do not lose weight. Your health is important to us!
An exciting addition to this year’s festival is the Rock’ Em Sock’ Em Hoyer Lifts. Two caregivers face off, maneuvering the devices while their ALS teammates are suspended in slings. Hilarious mayhem is bound to ensue as our two jousting piñatas swing for supremacy.
A nearby golf course has once again allowed us to hold the Powerchair Grand Prix. As always, watch out for water hazards! Last year, the race was marred by several disqualifications, the most egregious of which involved a gentleman who replaced the stock battery in his chair with a blown Chevy Hemi engine (Needless to say, Mr. Dubois will not be racing this year).
For those sedentary types among us, there’s a matinee screening of the sci-fi film, AL’S Motor Repair. The award-winning movie features Al, a successful repair shop owner, who stumbles upon a cure for ALS using the cobalt-chromium alloy nanobots he invented to clean carburetors. However, the nanobots escape and multiply at a terrifying rate, constructing vast neuronal networks that illuminate the night sky like pulsating red skyscrapers. Al teams up with a brainy and beautiful Italian neurologist to save the world.
Last month brought the announcement of our daughter’s pregnancy and our son’s wedding. Neurons willing, I hope to see each and every one of you next year at the Fourth Annual Steve’s Still Above Ground Festival!
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April 2025
Trophy wife
She’s such an uncommon woman, yet I've repeatedly referred to her in this journal by the common noun, "wife." And now that she's taken a sexy green dress across the country to attend our son‘s wedding, we can talk about her. But let's do it properly using a proper noun. She’s Daniela on the dotted line and Dani to all her friends.
Take this as an introduction to her and a confession to you. I never let the truth get in the way of a good joke, so I make shit up. All the time. Although Dani has a keen sense of humor, it is not the pitch-black variety that I portrayed across these pages. She is too compassionate for that. As my primary caregiver, she witnesses the ravages of ALS and lovingly attends to my innumerable needs.
I have been putting words in her mouth for decades, and this ALS journal is no exception. For example, when I first considered voice banking, I asked Dani if she detected any problems with my speech, but she never said, "Yeah, you talk too much." She never said our 40-year marriage is built on love, trust, and now a catheter in my urethra. And when I mentioned how much I missed our sex life, she certainly never said, “That’s okay, honey, you’ve been fucked by God.”
Dani and her green dress have returned from across the country, and by all accounts, she gave a hilarious mother-of-the-groom speech. I was not surprised. Evolutionary psychologists suggest that preferences for humor stem from the desire to have an intelligent long-term mate. In that regard, I was extraordinarily lucky, and Dani got the fuzzy end of the lollipop. I love her all the more for that momentary lapse of judgment.
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March 2025
Fingered food
Think of finger food. Hors d'oeuvres passed by waiters at a dinner party or piles of mozzarella sticks and nachos in front of a television may come to mind. But in certain desperate situations, finger food might also include pasta Bolognese.
I have ALS and one working limb: my left arm. And in what passes for luck in this treacherous disease, that’s my dominant one. To maintain the strength and dexterity in my fingers, I perform intricate exercises resembling those done by Jeff Goldblum when preparing for his title role in The Fly.
I still use a fork, but perhaps not in the manner intended -- more like that arcade game where a claw is painstakingly positioned in the hollow hope of snatching a prize below. At some point, everyone at the dinner table sees my frustration and implores me to put the fork down and use my hands.
I have no swallowing issues, so no dietary restrictions. But as previously noted, all spherical food is assiduously avoided, as I’m unwilling to chase blueberries or peas around my plate. Particularly vexing are those self-lubricating melon balls with their high coefficient of slip velocity.
Before my diagnosis, I was the first to finish eating, as if I were a convict in chow hall who feared his food would be stolen. Now when eating with my wife, I encourage her to leave the table, clean the dishes, walk the dog, and then see if I’ve finished.
So I'm happy to eat some food more efficiently with my fingers. Besides, there’s the pure tactile pleasure of getting in touch with my inner four-year-old.
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