February 2025
When the film director Jean-Luc Godard decided to end his life, he traveled to Switzerland, renowned for its chocolates, precision watches, and assisted suicides. Those ever-obliging Swiss can provide a stylish send-off regardless of your pocketbook -- take your last breath at a chic boutique ($11,000) or in a sleek portable pod ($20).
But enough of dreary death, let's talk about dying. And it should surprise no one that we must return to Switzerland, birthplace of the doyenne of death doulas, Elisabeth Kübler-Ross. One of my wife's closest friends is a doula of death* and willing to assist me. (All too willing, if you ask me -- She never approved of our marriage and has been trying to get rid of me decades before my ALS diagnosis).
Kübler-Ross changed the way that the world looks at the terminally ill, pioneering hospice and palliative care, but is best known for her model of the five stages of grief: denial, anger, bargaining, depression, and finally, acceptance
A catastrophist to the core,** I had already reached acceptance months before my official diagnosis of ALS, which is just as well because those four earlier stages are real buzzkills. I’ve never taken life’s large events too seriously, so why take its large last one differently? But missing out on the five stages was not an option. Clearly, I had to write some new ones…
My first stage is Tomfoolery, in which I make jokes about ALS, my wife and children, a dying family dog, and Stephen Hawking.
Hijinks is next. In this stage, I wisecrack about my friends, artificial intelligence, lumbar puncture, falling babies, and Stephen Hawking.
The third stage is Shenanigans, in which I make fun of German-engineered wheelchairs and the FDA and reveal that I have no internal organs. I also out Chairman Mao Tse Tung as a closeted ALS patient.
The last stage before Acceptance is General Clowning Around, which can include all of the topics covered so far and anything else I find inappropriately humorous.
I know what you're thinking -- he’s stuck in the denial stage -- and I assure you that’s not the case. I neither fear nor bemoan my death; I regret only the sadness that it will bring to my family, especially to my wife. So I’ve begun an extensive search for a potential companion for her. Those willing to answer a brief 12-page questionnaire, submit to a background check, and provide a full medical history, please contact me. (Individuals with ALS need not apply.)
*Doula of Death sounds like the name of an arch-villain in a Superman comic ––“Puny earthlings, who will save you now from the Doula of Death?”
**I am reminded of that old joke: What was engraved on a hypochondriac’s tombstone? "I told you I was sick.”
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Good grief!
January 2025
Hospital Cuisine Confidential
I have dined on an omelet of impossibly fresh eggs topped with shaved white truffles in Istria, grilled rib steak on the Pampas of Argentina, and broiled branzino that swam contently in the Mediterranean an hour before landing on my plate. I recall each fondly, but none will be so profoundly memorable as the meals during my two recent hospital stays for urinary tract infections.
This food review was initially jeopardized by a speech pathologist who wondered if I should follow a modified diet because of my ALS and suggested a swallow study for me. After the test, she said I had the most powerful mouth and throat muscles she'd ever seen and recommended that I not chew my food, just bite and swallow.
After a few days of criminally unseasoned dinners, I removed my IV saline drip and used it to salt my pot roast, which also greatly benefited from the additional moisture.
Rather than further bore you with my opinion of bland hospital food, I’d like to recount a 2 AM conversation with a charming woman I had never met before.
Dot awakened me to take my vital signs. She was around 60, had short purple hair, and looked like a person who owned a couple of motorcycles. In fact, there were three in her driveway. I shared one of my chocolate chip cookies left over from dinner while she shared a story about her son, who had recently driven from California with the cremains of her ex-husband in the backseat.
She told him that her ex had not paid for any of the house, so his cremains were going in the garden shed. Evidently, Dot had not forgiven him for switching from their matching purple Harley Davidsons to a Honda motorcycle because she removed its empty gas tank and filled it with her husband’s ashes. She told me it sits on a shelf next to the gardening equipment. She left before I could offer her one of my leftover brownies.
With two hospital visits already for UTIs, the prospect of a third looms in my future. I promise to continue my review of the hospital food should that occur. And there is always the chance of another 2 AM dalliance with Dot.
A note from the guest editor/ wife. The hospital was kind enough to secure a private room so I could spend the nights with my husband. I was lying on a nearby couch and heard their 2 AM conversation. Despite what my husband would have you believe, nothing untoward occurred. Our over 40-year marriage is built on love, trust, and now a catheter in his urethra.
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December 2024
Pissed Off
I’ve often gone without eating, sleeping, or moving my bowels for 24 hours with no ill effects. One time I even went without watching a single Seinfeld rerun. But go without peeing for 24 hours, and you might end up like me with a UTI in a hospital emergency room.
I named my genitalia “Little Fireman Bob“ as a child. Little did I suspect then that Bob had a urethra and one day would accommodate a catheter the size of a fire hose. After a tankful of high-octane antibiotics was pumped into me, I was released.
Before this incident, my urologist said I had the prostate of a 17-year-old girl. But why did it continue to grow, relentlessly plaguing elderly men like me, long after its role in reproduction has ceased? Drugs exist that shrink this offending organ, and my wife worked for decades at the company that developed that drug, which was also marketed under a different name to grow hair. Despite her many explanations, I was never convinced that a hairy prostate wasn’t responsible for my hospital stay. Until a second UTI landed me back in the hospital emergency room in less than two months.
I decided to try a different catheter style that bypassed the Little Fireman and my hairy prostate entirely. When delays to the procedure threatened to lengthen my hospital stay, Eric, my son-in-law, said he’d do it. A restorer of vintage automobiles, he was the right man for the job. First, he would buy an X-ACTO knife and some rubber tubing at Ace Hardware.
“Wait, we’ll need a balloon to anchor the tube to my bladder,” I said.
“I can get them at Party City in various colors,” Eric said.
“It needs to be filled with saline.”
“No problem! We’re five minutes from the beach. I’ll bring you all the salt water you want.”
“And please, no fish! We need to maintain sterile conditions at all times!”
A note from the editor: Last month, the author threatened to tell nothing but dad jokes if that were the readers’ preference. The author was none too pleased with the ensuing silence, except for my friend Susan, who clamored for it. So blame her for the following:
A head cold, a chest cold, and the flu walk into a bar. The bartender says: “Okay? What sort of sick joke is this?”
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November 2024
Impatient zero
IAccording 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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