November 2024
Impatient zero
According to the Guinness World Records, my father was the world’s most impatient man, and when he died, as firstborn, that honorific reverted to me. But thanks to ALS, along with losing the use of my right arm and leg, came the most stinging loss of all – I was stripped of the title.
After my diagnosis, the time between blasting a horn when stopped at a traffic light or complaining about the length of any line significantly increased. I was losing the fast-twitch muscle fibers found in elite sprinters, Jeopardy champions, and the truly impatient. Worse yet, I also lost the short temper necessary to those perpetually peeved. Inexplicably, I was turning nice. And that meant publicly apologizing to several psychologists in Australia.
In January 2022, I wrote about a study in Brain and Behavior entitled, “Are People with ALS Particularly Nice?”* Disregarding all the graphs and tables supporting this claim, I chose to only focus on one of the most notorious mass murderers in history who had ALS. How could someone responsible for the death of millions have a pleasant personality? And that was enough for me to discount the study -- that is, until a feeling of niceness came over me like a warm blanket. My wife even said ALS has made me a better person.
But what would become of my dark and twisted journal after this transformation? One of my readers offered a comment so cynical that I can only attribute my incipient niceness to not thinking of it myself. “We are pleasant and patient because we must be,” she wrote. “Eventually, we rely on other people for everything. So we best be nice.”
Next month, a compendium of dad jokes?
*JA Kullmann, S Hayes, R Pamphlett. Are people with ALS particularly nice? An international online case–control study of the Big Five personality factors. Brain and Behavior. 2018;8:e01119.
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October 2024
TWO TERMINAL JEWS
The Farewell Tour
I lost my new friend last month. Lee and I shared a love of Hitchcock movies and bleak German philosophy. But mostly, we shared a dark and twisted sense of humor. We were The Two Terminal Jews. I imagined we’d perform as a comedy duo, telling old jokes at local assisted-living facilities and hospices—Abbott and Costello, but in hospital beds.
Why do Jewish husbands die first?
Because they want to.
Lee had intractable non-small cell lung cancer, and the toxic, useless chemo he took made me grateful for the marginally effective ALS drugs, which at least had few side effects. And his six-month prognosis made my two to five years seem like a gift – but a gift that’s unwelcome and can't be exchanged or returned.
A Jewish pessimist is talking to a Jewish optimist. He says, "Things are so bad, they couldn't get any worse.” The Jewish optimist answers, "Sure, they can!”
We fancied ourselves nihilists. Shortly after we met, Lee showed me a framed photograph of a wasp reenacting one of the more unspeakable Greek myths upon its offspring. We referred to the photo as evidence that nihilism ruled the natural world. Still, we suspected that just as there were no atheists in foxholes as bombs were dropping, there could be no nihilists in our beach community while the sun was shining. Besides, even if Nietzsche had grandchildren, he wouldn't have gushed over them the way Lee did his.
Until our devastating diagnoses, we had reached seven decades with no serious health issues; in fact, Lee had the strength and vigor of a man many years younger. We were with our wives in a crowded Greek restaurant when I made the mistake of doubting he could do thirty push-ups. Lee stood up from the table, dropped to the dirty carpet, and performed like a marine at boot camp (except recruits are not allowed ponytails). Silently wiping his hands on his jeans, Lee returned to his seat. He tore off a large piece of pita, shoveled hummus onto it, and began eating. Lee was the last person you’d choose to turn one Terminal Jew into a duo.
A Jewish grandfather is playing with his grandchild at the beach. A massive wave comes and pulls the child out into the water. Panicked, the grandfather prays, “Oh God, please bring him back! Let him live!” Suddenly, an even bigger wave sets the child at his feet. He hugs him, stares up at the sky, and says, “He had a hat.”
Lee often spoke about what’s called the unobtainable object of desire.* We relentlessly chase these elusive objects, hoping they will bring us satisfaction. It could be wealth, power, fame, or even something quite ordinary. But Lee’s desire proved the most elusive of all: more time with the ones he loved.
*Lee was a devotee of Jacques Lacan, the renowned French psychoanalyst. Lacan refers to the elusive object of desire as an object imbued with a mythical power. But the object itself is not the key to fulfillment; it is the desire itself that propels us forward and keeps us endlessly yearning.
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September 2024
We're not a bunch of whiners, people living with ALS (PALS). We’re not victims of cruel fate or angered by our condition. At first, I was surprised by this show of strength. In all the ALS support groups that I joined, I’d yet to hear a single, Why Me?
But it’s not strength that stops me from crying, Why Me?
It’s because that particular question leads to another uncomfortable one, Why Not Me? and then to the morally indefensible and fun party game at every ALS gathering, If Not Me, Then Who?
I wouldn't wish ALS on anyone. But if pressured, I could name a demonic despot, toxic politician, or the guy at the mall who snatched my grandma’s handbag, containing her only set of dentures. Even the most sadistic guard at Abu Ghraib prison would think twice before implementing the cruelty that awaits us, although I might prefer ALS to being subjected to Black Sabbath at earsplitting volumes.
Let's leave the unanswerable Why Me? to the more philosophically inclined and turn to one that will be eventually solved: Why ALS?
The cause of ALS is thought to be multifactorial, which currently means, Your Guess Is As Good As Mine. The usual suspects include genetics, environment, bacteria, and concussive head impact. I should add to this lineup the widely debunked theory that my particular form of ALS came from a bad sausage sandwich in Little Italy.*
More likely, I developed ALS after falling off our stoop and hitting my head. From that moment of impact, my proteins have been misfolding as if by some drunken origamist, my mitochondria are really stressing out, and cadres of freed radicals are escaping from their cells. Six months later, I took the first of many falls off my bike.
If you're looking for an explanation of ALS pathophysiology, I’ve surely convinced you by now that you won't find it here. So let’s turn to a personal question you may have wanted to ask: Aside from not whining, what have you done to empower people with ALS?
I participated in a clinical trial, several observational studies, and genetic research. But mostly, I write a journal filled with dark, twisted humor, which a surprising number of people with ALS and their caregivers find appropriate for this dark and twisted disease.
*My brilliant neurologist at Mass General Hospital was the first to disabuse me of the notion that Italian sausage caused my ALS, but then again, she is from Milan.
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August 2024
I stunk at sports, but then I got ALS. Now, I am an elite biathlete at sports of my devising.
No matter its shape or size, any ball I had the misfortune to meet would foul, fumble, shank, or gutter. But baseball was the worst, which is why I was surprised to develop Lou Gehrig’s disease.*
According to my friend Joe, who plays senior softball in LA, Gehrig was a competent player with a lifelong batting average of .350, meaning he got on base only 35% of the time. So, as far as being remembered in baseball history, Gehrig’s getting ALS was a smart career move. My parents, who were among the small minority of Jews of their generation that thought education was overrated, would have been horrified if I came home with even one test score of 35%. “Why no 65%?” my mother would have pleaded.
But they’d be proud of my performance in the PALS (People living with ALS) Olympic biathlon.
The PALS Pitch
This event combines weightlifting with the shot put and javelin throw and was initially created for getting into bed. My wife helps me stand on a low footstool, then lifts and pushes me as hard as she can, launching me towards the headboard and the middle of the bed. She wears a weightlifting belt, while I prefer to follow tradition and perform all events nude, as done throughout most of Olympic history. Points are awarded for style, speed, and accuracy, with deductions for the occasional overshooting into a wall.**
The Bathroom Slalom
In this event, I pilot my power wheelchair to the bathroom three times with increasing levels of difficulty. The timed course includes several tight 90° turns and a partially closed door, all requiring absolute concentration.
The first lap is performed with an empty bladder, the second with the bladder full as determined by ultrasound. The third and most dangerous lap is also done with a full bladder, but while my wife tries to break my concentration by asking ruthless questions such as, “What’s the largest waterfall in the world?” and “What’s the biggest manmade reservoir in the United States?”***
Points are deducted for tearing a door off its hinges or gouging a hole in a wall deeper than 0.25". Creating a water hazard of any size causes immediate disqualification.
Watch Us at the Paris Olympics!
We have been in deep discussion with a gentleman acquainted with someone working for the International Olympic Committee. He assured us that the PALS Pitch will be televised by NBC this summer.
*My friend Rodney reminded me of this exchange between crime boss Tony Soprano and his nephew Christopher.
Christopher: You ever think what a coincidence it is that Lou Gehrig died of Lou Gehrig's disease?
Tony: You're gonna make that same stupid joke every time that comes up?
**Don’t mention any of this to my care team at Mass General Hospital, as they would be justifiably appalled and immediately separate us, putting me in a nursing home and my wife in an asylum. I know that a hospital bed is in our future, but as long as I have semi-functional limbs and she has a semi-functional back, we’re PALS Pitching.
***Victoria Falls on the Zambia/Zimbabwe border in Africa, and Lake Mead, the reservoir for the Hoover Dam, is over 28 million acre-feet.
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