I have ALS, and if you’re unfamiliar with this incurable, deadly disease, count yourself lucky. Yet there’s much I’ve found unnervingly funny. So join me on this journey, and as I lose neurons and everyday functioning, let’s see how long I can maintain a sense of humor.
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no leg to stand on
May 2022
and so it goes
I was diagnosed with ALS in May 2022. It was a month of seeking solace and support, more so since we had just learned that Marnie, our sweet family dog, had lymphoma.
Most people would find communicating that kind of news difficult; I found it an opportunity for humor blacker than any hole dreamed by Stephen Hawking. (A man who not only broke new ground in cosmology but also proved to ALS patients worldwide that total immobility was no barrier to cheating on one’s spouse.)
So I informed our friends as a good news/bad news situation. The good news: Our beloved pet was unresponsive to chemotherapy, and nothing could save her. The bad news: I had ALS. And whatever else you might think of me, you’ll agree this goes far to explain a lack of friends.
A gentler, more empathetic tone was taken when telling my adult children: “You know, no one gets out of here alive, right?“
June 2022
that undiscovered country
I have ALS, and each morning I wake up wondering which previously simple task will begin defeating me.
While it’s safe to say I haven’t struck comedy gold with this condition, I don't have to dig deep to find something funny. I might be one of the few ALS humorists -- No doubt there have been others, but as life expectancy in this condition can be as little as two years, I’m going with the only one alive right now.
I’d like to level-set your expectations with a simple joke: You ever think what a coincidence it is that Lou Gehrig died of Lou Gehrig's disease?
Let’s pause to examine your reaction.
If you found this joke hacky and familiar, you might be right…But remember what I said about ALS life expectancy — there’s not much time to “hone comedy chops” or even “write jokes,” so don’t stop me if you’ve heard this one before.
And for those who find it ugly and distasteful? You too might be right. You can either forgive my dark humor and stop reading or get angry and plow ahead… if laughter’s not your best medicine, maybe it’s rage.
my canine cALS
July 2022
If you’ve read these journal entries, you deserve a palate cleanser; a break, however brief, from all the bleakness. So let’s talk about dogs!
Unfortunately, the canine under consideration is Neptune: A dog who’s long since had its day and now, half blind and nearly toothless, can contentedly sleep on my lap for hours and then think nothing of biting me upon awakening.
We differ in many ways -- When sitting, he slowly sinks to the ground on arthritic legs, while I collapse into chairs, careening from one armrest to the other, and I never sit on floors unless planning to reside there semi-permanently. And despite having few teeth, Neptune manages to devour a full bowl of food before I’ve even arranged my fingers around a fork. But it’s Neptune who taught me how to live with ALS.
We’re both old and infirm, and our future is as shaky as the morning walks we take together. I’m more unsteady on my legs as I’ve only two, and I don’t stop to smell the roses, although I wait patiently while he does. But that’s not the life lesson Neptune has to impart.
Neptune is neither brave warrior nor victim of cruel fate. He doesn’t deny his condition, become angered by it, or try bargaining it away. All dogs die, and none seems troubled by it. And that acceptance is what my Neptune taught me, and well worth a bite from him now and then.
August 2022
jimmy’s on hold
I was convinced that my plan to use social media to monetize my ALS would be a success, inevitably leading to a segment on Jimmy Kimmel Live. Unfortunately, my children, both of whom work in the entertainment industry, proved perfectly useless in this regard. I wish I paid them, so I could have the pleasure of firing them both.
When asking my son at Google to help kickstart my career, he said, “I think you misunderstand the nature of my work.” I did not pursue the matter, as I now believe him to be a hired hitman for that tech giant.
I hoped to have more luck with my daughter, who that very day was taking a meeting at Warner Brothers for work. I said, “Forget social media, pitch them a comedy series about a dad diagnosed with ALS and told to get his affairs in order.”
“How can I just bring something like that up?”
I suggested asking someone before the meeting, “You have such striking features, do you take after your mom or your dad?… I take after my dad, except he has ALS.”
“No one talks like that,” she exploded. I agreed that a straightforward approach would be better.
“Okay, then just casually ask, ‘My dad has ALS, does yours?’ “
She wouldn’t do that either — and that’s why you’re reading this journal instead of watching me on television.
always sorry, always grateful
September 2022
I’d like to discuss sex.
Since my children are readers of this journal, I am providing a trigger warning for potentially distressing material. As an additional precaution, I have included a safe space below on an unrelated topic.
Do you want to learn how the laws of thermodynamics are like an ALS prognosis? Well, neither did my wife—I told her anyway, and now I’ll tell you: ‘It’s like you’re in a high-stakes card game, one that you can’t win, can’t break even, or can’t even get out of playing.”
‘What is wrong with you, “she said. “Why is your looming demise a cause for frivolity, and not despair?” Then, answering her own question, she suggested a personality disorder and then promptly corrected herself to say that in 40 years of marriage, she had yet to discover my having any personality.
The preceding conversation may not have occurred, and an even better chance that it’s not funny — however, it does bring to mind a joke that is, and until recently, funny only in theory: Why do Jewish husbands die first? Because they want to.
The kids are gone, so it’s time to talk.
Despite a crankiness that long preceded ALS and that my diagnosis has done little to improve, my wife still loves me. I believe my current irritability comes from a lack of sexual intimacy. Admittedly, it’s difficult to maintain romantic ardor when it takes 20 minutes to take your pants off, and once in bed, the only climax occurs when you’re nearly jolted out of it by crippling muscle cramps.
My wife and I had a frank discussion during which I mentioned how much I missed our having sex. “That’s okay, honey,” she responded. “You’ve been fucked by God.” On a lighter note, those wishing to learn more about thermodynamics are directed here.
October 2022
a farewell to arms
I decline any outstretched hand offered in greeting, not in viral fear, but as a result of my largely ornamental right arm — A mere decoration that provides graceless symmetry for its more functional twin.
Although I can easily manage handshake workarounds, most of the women I know are huggers, and I don’t have a hug exit strategy. Here’s why I desperately needed one:
As a female friend turned away from a long and particularly enthusiastic hug, my sluggish right hand traced a spasmodic, yet highly suggestive path across her left breast. Even as my brain screamed, “Dont!PleaseStop!StepBackFromThatChest,” my hand continued on its halting way.
If I were a NASA bioengineer, I would prove this flight trajectory was unavoidable. And to be clear, I neither groped nor grabbed. Don’t believe me? Go buy a dynamometer and measure my grip strength.
one point at a time
November 2022
Confessions of a recovering ALSFRS–R addict
Walk too slow? Lose a point. Walk too slow using a cane? Lose two. And don’t get tangled in bedsheets because that’s another, with each loss portending further functional decline to come. So I say without shame, I would do anything not to lose a point...Anything.
The ALSFRS-R measures disease progression across a range of daily activities and body systems, from walking to breathing. The questionnaire is used in every ALS clinic visit and drug trial, but I quickly became a habitual online user, self-administering tests three times a week before finally quitting. What made the scale so seductive was its wild subjectivity, a weakness that someone like me could easily exploit.
The inability to use a knife is a point loss, so I purchased an expensive steak knife and use a cooking technique that tenderizes meat by slowly breaking down muscle fibers (sous vide, the ALS of food preparations).* Leeks, which are fibrous and difficult to cut, are assiduously avoided, as I refuse to lose points over a vegetable.
I may take 20 minutes to button a shirt, but sternly reject any help from my wife: “Don’t touch me. Point off. “ And since childhood, my handwriting’s been compared to hieroglyphics; no point deduction there either.
Who am I fooling with this subterfuge? Not my neurologist, always alert to point-seeking behaviors, and certainly not my ALS, which cares nothing of points or the lies I tell to keep them. So I’m beginning to accept that which is clearly beyond my control — It's been three weeks since my last ALSFS-R, and those who love me may soon be allowed to button my shirt.
*Sous vide, which means “under vacuum” in French, refers to the process of sealing food in a bag, then slowly cooking it in a hot water bath. As a special surprise for my dedicated footnote readers, the curious among you can view an online ALSFRS-R here, and the curiously morbid can take it themselves.
December 2022
is my goose cooked yet?
I’ve always been handy in the kitchen, but now I need some helping hands to stir, slice, strain, mince, measure, and mix.
And with all this help, what’s left for me? Supervision.
Friends and family, whose only misfortune was to accept our dinner invitation, will be conscripted this season to serve as eager yet highly incompetent sous chefs. One to pick, sweep, and mop up whatever slips from my faulty fingers; another to work the pots and pans; and one more to keep wine glasses filled and away from the other sous chefs. The 12-inch chef’s knife will be handled by a friend whose career would suffer the least from the accidental loss of a digit.
“Yes, Chef” is the preferred response to any of my barked orders, although I reluctantly accept, “Whatever, Jackass.” The kitchen does have two inviolable rules: Don’t trip the chef with ALS, and don’t crush the dog. Neptune suspends the laws of space and time with his uncanny ability to be under every foot simultaneously, while I, to the casual observer, seem to remain in place despite furious movement.
There’ll be the inevitable menu changes, as the chef tends to forget ingredients, often with unfortunate results. But despite the shouted commands, the dubious dinner, and a disease not far from everyone’s thoughts, we’re all planning to have a wonderful time.
Happy holidays to all, especially my fellow pALS and all their cALS!
no more mister nice guy
January 2023
No one knows why sporadic ALS develops, but there’s no end to the theories. I believe mine resulted from a visit to the San Gennaro street festival in Little Italy, where I distinctly remember asking my wife if our sausage sandwich tasted off, and five years later almost to the day, I received my diagnosis.
But I recently learned the sausage supposition is incorrect. I developed ALS because I’m too fucking nice.
Lest you think this just another jest, jape and joke emanating from my fevered brain, it came from brains much bigger than mine at the medical journal Brain and Behavior:
"People with ALS are often described by clinicians as having a particularly pleasant personality, which could be interpreted as “niceness”….A characteristic personality profile for ALS could give clues as to the underlying pathogenesis of the disease."*
Despite their valiant efforts, these researchers may have it backward – Rather than a pre-existing personality trait, we’re just as likely to become pleasant only after an ALS diagnosis. Don’t sweat the small stuff might well be engraved on every wheelchair we need to move, every device we need to eat and breathe.
I also take issue with the Australian control group used in their assessment of non-ALS niceness, as many of them were likely drunk on beer and the descendants of convicts.
Before dismissing the “niceness” theory entirely, let’s look at three famous people with ALS. Stephen Hawking cheated on his wife, and the actor David Niven on his with stars and prostitutes. Our third, while a faithful husband till the day he died, was responsible for the death of 45 million people. Any theory that suggests Mao Tse Tung or cheating husbands are nice may require a major re-think.**
So I’m back to blaming bad sausage until someone can definitively prove me wrong. The ball’s in your court.
*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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192405/pdf/BRB3-8-e01119.pdf
**My dog Neptune was especially incensed to learn that Mao banned dog ownership as a symbol of decadence and bourgeois sentiments. During the Cultural Revolution, police had orders to shoot stray dogs on sight.
you could die laughing
February 2023
Learning I had ALS was made worse knowing I had to tell people about it. And worse yet, how does one respond to such dreadful news? If you’re familiar with my journal, it should come as no surprise that I classified these responses based on how funny they were:
1. Grief and love. As you’d expect, people were sympathetic and supportive when hearing of my illness. I don’t wish to diminish this outpouring of emotion or my heartfelt gratitude for receiving it, but all their responses were profoundly unfunny.
2. The right to remain silent. None of us want reminders of our mortality, even if one step removed. So I knew some friends would go full-Nietzsche on me and refrain from staring into the abyss. I understand their reluctance because I laugh into it every day, hoping to hear a joke back and get nothing, not even a bad pun. The abyss could use some better writers, but it’s not responding to my job inquiries either. In any case, this group’s silence speaks volumes, and not a word of it funny.
3. Dueling diseases. I no longer hear health complaints from friends fearful of comparing their non-life-threatening ones with mine; however, one did relate his current bouts with cancer of the esophagus, prostate, breast, and skin, and then said, “But my medical situation pales compared to yours.” Pointing out the grim prognosis of ALS in this way seemed amusing to me.*
4. Cold and callous. My favorite response was from my good friend George, and it’s what someone writing a twisted journal like mine should expect. When hearing of my ALS diagnosis and that our wonderful dog Marnie was dying, George wrote back, “Sorry to hear about your dog. I really liked that dog.”**
*Apologies to my dear friend, a decent human being who likely does not find humor in our illnesses, but such are the perils of comedic collateral damage.
**There will be no apologies to George for divulging his comment and first name; in fact, he probably regrets that I didn’t include his last name as well.
a robot with ALS walks into a bar…
March 2023
As ALS continues to take its toll on my body and sense of humor, I decided to subcontract some of this month's journal to a robot.
The ChatGPT chatbot is all over the news. It employs deep learning to produce text resembling that of a human. So what happens when this game-changing technology, with access to every single joke ever told and a world of clinical data, is asked to write an amusing anecdote about living with ALS? Unfortunately, this happens:
"I'm not sure if living with ALS is particularly humorous, and it is important to approach it with sensitivity and respect. That said, I've become quite skilled at typing with my nose and holding a fork with my toes. It's good I have a great sense of humor, otherwise ALS could be a real bummer."*
Would this chatbot have written a more successful story had it grappled with some digitized equivalent of ALS or had to provide care for another ailing bot rather than just parroting random information?
A friend who teaches computer science at the University of Chicago told me that kernel degeneration might be the closest parallel to a bot developing ALS. Kernels control everything in a computer's operating system, much like neurons do in ours, and a bad one can make booting up difficult. I can sympathize because it’s a struggle putting on a pair of slippers, much less boots, and I'd rather walk barefoot on broken glass than ever try rebooting.
I'm pulling the plug on the ChatGPT chatbot because laughing in the face of adversity is clearly not among its many marvels -- So welcome back to my slow hands shuffling across a keyboard and depleted neurons firing as fast as humanly possible.
*I promise you that this anecdote was one of several ChatGPT wrote for me. Sign up for free and try it yourself here.
you’re one to talk!
April 2023
When I first considered voice banking, I asked my wife if she detected any problems with my speech, and she said, "Yeah, you talk too much." Nevertheless, I contacted a speech-language pathologist to create a synthesized version of my voice for when I can no longer use my own.
But after 70 years of chatter, I too have grown tired of hearing myself talk, so I asked to sound like Stephen Hawking. If I could speak like the man with answers to all the big questions about the universe, I might at least discover who keeps eating that last piece of blueberry pie.
What if I chose to sound like John Wayne instead? Think how quickly my wife might leap from bed when hearing that Hollywood cowboy holler, "Slap some bacon on a biscuit and let's go! We're burnin' daylight!" Unfortunately, convincing a John Wayne impersonator to perform at the speech clinic proved difficult.
The limiting factor with this voice technology is typing speed, and my one-handed hunting would soon leave us starved for conversation. But when combined with hundreds of my favorite phrases, all pre-recorded and stored on a laptop, friends and family can continue hearing me say things like, "Fucking fuckity fuckballs." Given my symptom trajectory, however, I'm more likely to first lose the ability to type rather than talk.*
Did I also mention my hearing loss? Given all these deficits, the perfect companion might be my dog Neptune who neither requires nor even hears conversations, and any word spoken loud enough to disturb his slumber is greeted with a snarling show of one good tooth.
*I recently watched someone with ALS type on a computer using only his thoughts, thanks to an electrode implanted in his brain – That guy could make some serious money! Maybe go to a bank and change a $10 deposit to $10,000 on the teller's screen. I wrote to a clinical trial site that’s studying this device and offered to test my hypothesis at the local TD Bank. I have yet to hear back, but remain ever hopeful.
the wedding crasher
May 2023
ALS symptoms can be so persistent and pervasive that we often think of nothing else and even become angry when those around us manage to think of anything but. There’s not much to say in our defense except that born of fear and fed by frustration, we let the demon loose – which brings us to my daughter's wedding.
Mine would be the first speech -- a significant error in judgment by the wedding planner because, unlike actual invitees, the demon believed that evening was not about bride and groom but rather an opportunity for guests to spend some time with his ALS.
Luckily, we left the demon in our hotel room for the entire joyful event, bribing him with a month's supply of Relyvrio.* And well we did, as I later discovered the speech he had planned to give, complete with sound effects and audience reactions:
DEMON:
I’m so excited to stand here tonight and celebrate this marriage…well truthfully, I’m excited just being able to stand up anywhere.
[pause for rim shot and laughter]
Speaking of which, the band started a pool, betting on how quickly I’ll fall down during the father-daughter dance.
[pause for rim shot and laughter]
But enough about me… let’s talk about my ALS journal, No Leg To Stand On, available at No Leg To Stand On Dot Com.
[pause for attendees to write down website address].
But first, I’d like the newlyweds to turn toward each other. And as you gaze into one another’s eyes as husband and wife, know that you are now looking at the person statistically most likely to kill you.
[pause for rim shot and groans from attendees, with some making for the exits]
It’s true, folks. Look it up… But don't worry, because statistically speaking, I won’t live to see it.
I will spare gentle readers from the repulsive rest, as those pages now lie charred in a hotel room bathtub. If only I could burn them as easily from my memory.
A storm followed our flight back to Boston the next morning. Hobbling out to the sodden arrival ramp, I saw a cop berating our Uber driver for double parking. Noticing me, he gently took my elbow and led me to the car door. As I stooped to avoid hitting the roof, he cupped his hand over my head, just as I had seen done countless times on Law and Order.
“I feel like a perp.”
“Want to confess to somethin’?”
‘’Yeah, I can be an absolute jerk to people who love me.” (Strangely enough, I’m unsure whether I said this or the demon.)
“Lucky for you bein’ a jackass is not a criminal offense.” Giving a dismissive wave, the cop turned and we drove off in the rain.
*People with ALS are subjected to the drug Relyvrio twice a day and convinced that nothing more nauseating could ever exist, but my demon seems to enjoy its bold flavor and chewy foil pouches.
scrambled legs
June 2023
My legs have carried me without complaint around the world. They stood silent while I beheld its wonders and ran me without reproach from its perils. But now they vehemently resist with mockeries of movement or just stony indifference.
So let’s take a downwardly mobile stroll and roll to catalog all the devices I’ve used with varying success to tame those wayward limbs.
Cane and disable. Walk with a cane and the world’s suddenly an obstacle course crueler than any Marine might encounter in basic training. It's a world filled with fissures, crags, and kinks, all conspiring to trip me or make me fall. I even managed to stumble over a Dayglo orange safety cone in an empty parking lot, and shuffling down a crowded street makes me feel like the one lame wildebeest in a pack singled out for the lion's jaw.
Worse yet, my cane is impish and cruel, teleporting to a corner of the room far from my hands or crashing to the floor only when in striking distance of my dog’s head. Luckily, Neptune’s mental state precludes him from holding a grudge.
Brace yourself. Next came a carbon-fiber leg brace inserted in my shoe and attached at the calf. It works reasonably well, but my lurching walk scares small dogs and children, resembling the one first perfected by Boris Karloff in Frankenstein. Its design is also based on a prosthetic device the Paralympian Oscar Pistorius wore when he shot his girlfriend four times through their bathroom door.
Lift your spirits. I put a can of beer in my pocket and started up the stairs when my wife said, “You don’t need that extra weight.”
“But it's in the pocket of my good leg,” I replied.
“You don’t have a good leg. You have a bad leg and a worse leg. It’s not safe, and you need a stairlift.”
I readily agreed, as I’d been spraying both of us at dinner with beer dropped on the stairs. Now I can stack a six-pack on the stairlift and ensure its gentle ascent by climbing alongside on my own.
Roll with the punches. I use a wheeled walker called a rollator, and my only experience with wheelchairs so far has been at airports, where snaking lines of stalled travelers become mere blurs as I blast past customs and security. And if I can momentarily forget being wheelchair-bound, it’s easy to imagine myself a VIP -- as indeed I am, a Very Incurable Patient.
Am I in Florida yet? This summer, you’ll find me sporting a scooter with brake lights, turn signals, and high beams, just like the ones Boca retirees use every afternoon on their way to chair yoga mahjong.
Walking is only one of life’s activities stolen from us. And while ALS may shrink our world, we can still move through it with all these devices.
the lighter side of ALS
July 2023
Definitions of ALS usually begin like this: "An invariably fatal progressive neurodegenerative disease…." No wonder people don't know much about it. Who would read beyond that gloomy first sentence unless forced by sad circumstance? Instead, I propose that any definition also include the advantages ALS may confer.
There's the obvious benefit of no longer worrying about entire families of major diseases, as we've already adopted the most unwanted of orphans, ALS. So no more cardiologists running us ragged on treadmills, no dermatologists poring over every pore, and no urologists probing with fat fingers.
And forget about watching your weight, as we're all encouraged to maintain a heroic intake of calories. "You can eat like there's no tomorrow," said my family physician, with what I hope was unintended irony.
We'll never again experience the tedium of long airport lines as our wheelchairs transform into magic carpets that swoop past the crowds. The only thing missing is a bottled genie. I wouldn't need three wishes either, just one: to stand in that airport line for hours and savor every interminable minute.
Then there's a return to showering with my wife, now more functional than romantic, yet a slim possibility still exists for a brief interlude that won't end with the fire department towing me from the tile floor.
I've not found a situation where the leavening effect of humor was not salutary, although a sizable number of sensible people believe otherwise. So I'll be completely serious for the rest of this paragraph and tell you some valuable lessons I learned: While ALS may be a death sentence, it has proven to be life-giving as well, providing unsuspected reserves of courage and determination. Every day I also witness the selfless strength of a wife who cares for me without complaint. Even strangers, when relinquishing a seat or holding a door, can feel a bit better about themselves than before I hobbled by.
After reading this journal entry, my wife said it was more thoughtful than usual, which I took to mean less funny. I hope my humor neurons are still intact and this seriousness will soon pass; otherwise, next month you'll be reading my latest essay on the geopolitical impact of falling iron ore prices in Mauritania.
falling like a baby
August 2023
Ask people with ALS their greatest fear, and many will say taking a fall. But that's not mine because, despite what my wife believes, I don't fall. This otherwise brilliant woman refuses to accept the concept of a controlled transition to the floor.
"No, you crash to the floor in a heap," she said.
"Did Sully Sullenberger crash when he expertly piloted a jet into the Hudson River, saving all his passengers?” I responded. “I glide down like Sully. I’m the US Forestry Service doing a highly controlled burn to prevent wildfires."
"So you're an airplane pilot and a fireman now? Wouldn't the ability to put socks on be required for those jobs?
Harvard Medical School suggests wildly complicated tactics to fall without injury: Lean forward, sideways, and away from people, swing your arms, twist your shoulder, and fall like a sack of beans.* That's a lot to process in the two seconds it takes to fall, so those beans must have some big brains. Fortunately, there's a simpler strategy.
I fall like a baby -- automatically slowing a descent by bending my knees and landing on my butt. Babies learning to walk fall on average 17 times an hour. Will it take the same number as I unlearn to walk?**
I don't have access to toddlers, but I can observe my dog Neptune climb the highest rocks in our backyard and safely fall from each like a baby. Unlike them, I am not low to the ground and have greater body mass and more brittle bones. That's why I devised further ways to reduce my risk.
Since 80% of serious falls occur inside the home, many in the bedroom, I plan to sleep on a lawn chair in the backyard. As bathrooms are also dangerous, I will wash only in rainstorms and share Neptune's outdoor doghouse when thunder threatens. Before ridiculing my idea, please consider that the risk of falling in a doghouse is surprisingly low.
If fear of falling is not my greatest fear, what is? I don’t know, but I’m probably just a buckled knee or missed handhold away from finding out.
* How to fall without injury. Harvard Health Publishing. Harvard Medical School. 2018.
**"15 Falls with the Stroller" is not an art installation but a video from NYU's Infant Action Lab of a toddler pushing a pink doll stroller, and if you're among the people who might find this endearing, watch it here.
A note from the editor: Please disregard this journal entry as Mr. Witt fell unlike a baby this week (in the bathroom!) and cracked a rib. He’s fine and claims it only hurts when he laughs.
Foot loose
(Please, Louise
Pull me up off my knees)
September 2023
Once I could easily balance on one leg. While on my toes. And turning.
During college and for ten years afterward, I was a modern dancer and choreographer in New York. Life was all moments of momentum, a body in motion that remained in motion. And in all those years, I never performed wearing a tutu, making unnecessary my mother’s threat to come on stage and hit me with her pocketbook. (Although she remained highly vexed after watching me dance with battery-powered blond babies to Luftwaffe march music.)
Newton’s laws of motion are still at work, but now my body at rest tends to remain that way. The muscles needed to overcome inertia along with their neurons are deserting me, so there’s hardly any balancing, even on two legs, and certainly no turning, other than the occasional twisting of an ankle.
Some friends mistakenly believe that ALS must be especially tough for an ex-dancer. I recently met a man who can no longer bicycle hundreds of miles each week and a trained baker who lost use of her hands. Would surrendering these skills feel any more acute than losing the simple ability to hold someone in your arms?
Despite my early symptoms and use of a brace for dropped foot, my wife and I took ballroom dance classes, and we were among the best dancers for a surprisingly long time. Balancing is much easier with four legs beneath you!
Upon receiving my diagnosis, I asked my neurologist to do everything clinically possible to ensure I dance with Rebecca at her wedding the following year. We began rehearsing our father-daughter dance, and I became especially fond of an up-tempo instrumental break that I called “The Take Off.”
“It’s too fast, and you have no idea how to land,” my daughter said.
“Don’t worry, Fred Astaire is my copilot. We’re gonna be Fred and Ginger.”
“I think you mean Thelma and Louise,” she said with some justification.
Rebecca was married this April, and we danced and even dipped when we were done. Although we remained resolutely earthbound, I am convinced our feet never touched the ground.*
*Listen to The Take Off. We’ll never know whether it would have ended with a graceful swoop across the dance floor or a catastrophic crash into the band’s rhythm section.
Learning to love lumbar puncture
October 2023
I have a low tolerance for pain and a healthy suspicion of anyone approaching my skin with a sharp object, which makes me far from the obvious choice to provide a patient's perspective on lumbar puncture.
So I was pleasantly surprised when asked to share my experience with that procedure at my ALS clinic's webinar, especially since my ideas have not always aligned with modern medical thinking – or, as some would have it, thinking in general. For example, neurologists still give little credence to my theory that bad sausage sandwiches at street festivals cause ALS.
Here's another idea: Stop using the term lumbar puncture!
A puncture on a car tire renders it useless, even dangerous. As someone who's spent time around creative types, I've also witnessed the explosive consequences of puncturing an inflated ego. So despite its association with bad hair and worse music, I favor the term spinal tap, which evokes massive maples slowly surrendering their syrup, or tapped kegs for those who prefer beer on their pancakes.
During the webinar, I described my experience with lumbar puncture as uneventful -- what one dearly hopes to hear after any medical procedure or airplane flight. I also recounted why I eagerly enrolled in a clinical trial despite my misgivings about its mandatory lumbar punctures. While lengthy and serious, that section also included a great joke:
I was diagnosed a little over a year ago when only one oral therapy was approved -- now there are three. People with ALS, like us, agreed to be in those clinical trials, and thanks to their commitment, we may benefit from more months of life and improved functioning. You can call it playing it forward, but I call it a debt owed to them and future patients to advance the research of ALS.
Don't bother revisiting that paragraph to find my promised joke because there isn't one. I lied to keep you reading, and not for the first time either. You're welcome!
Watch my five-minute presentation on lumbar puncture here. Fortunately, I'm followed by two neurologists who actually know what they're talking about.
November 2023
I’ve never given liver a second thought.
I know Prometheus had a liver so tasty it was eagerly dined on for all eternity, and it pairs well with fava beans and Chianti,* but I've never seen any evidence that I have one -- or any other internal organ. So when my neurologist said I had elevated liver enzyme levels, I assumed their lab had made some mistake.
Cutting cross sections into my G.I. Joe with a table saw convinced me at an early age that I too had no internal organs, only a solid, pale pinkness.** I understood where other children came from, but my mom clearly had use of the latest in extrusion mold technology. The alternative was too horrifying to consider: a swarm of organs splashing against each other, like a crowded community pool in August.
Until that call from my ALS clinic, I'd been mercifully free from any medical misfortune requiring a confrontation with the clutter that now seemingly lies beneath my skin.
One of my ALS drugs could have caused this precipitous rise in enzyme levels. And why in the important liver? Why not the gallbladder, widely considered to be the stupidest of organs? But I believe drugs were not to blame, as it's a clear case of organ rejection -- payback from vengeful viscera for all the years of my refuting their existence. Then again, maybe it's what my wife says about old age – put enough miles on the odometer and expect to see those check engine warning lights.
Note from the editor: The author was recently informed that his rising liver enzyme levels were due to an ALS drug of uncertain therapeutic effect. However, he happily reports that the levels have normalized with its replacement by bourbon, a regimen of well-proven efficacy, readily available without prescription, but not yet reimbursable.
*For the culinarily confused, an eagle ate Prometheus’ liver, and Hannibal Lecter ate a census taker's with fava beans using this recipe.
*Hamlet, Shakespeare's famously troubled teen, wished that his too, too solid flesh would melt into a dew. Obviously, the Bard never took a propane torch to a G.I. Joe, as the black malodorous mass that results is hardly dewlike.
December 2023
A whale on wheels
I’m sitting atop my new whale of a wheelchair, so call me Ishmael.*
And now that my 400-pound behemoth has entered our home, with the help of five men on the ground with grappling cables and two hovering Chinook cargo helicopters, it can never leave -- unless we’re willing to construct across our rocky property $25,000 worth of aluminum ramps with as many switchbacks as a California canyon.
“Not to worry,” the ramp installer said. “You’d quickly recoup that amount by opening a slip-and-slide in the warmer months and cross-country skiing in the winter ones.”
Before I forget, thanks to everyone who contributed some small portion of a penny for this MediCare-covered Permobil wheelchair! But you shouldn't have -- not when you could have gifted me a used sporty convertible for the same price. Except I already surrendered my driver's license to obtain disability parking, and neither my neurologist nor the Department of Motor Vehicles would believe an ALS symptom reversal that occurred only in driving ability.
And you wouldn't believe how much damage can occur at under 2 mph with a wheelchair. After the walls looked like they had sustained several shrapnel blasts, I now keep to a sober snail's pace--so much so that Neptune, my aged, arthritic dog, glares disdainfully when overtaking me in our living room.
Neptune also sleeps between the behemoth’s huge rear wheels, blissfully unaware that in any altercation, the laws of physics work decidedly in his disfavor. Luckily my chair has a horn, and Neptune fears horns even more than a possible pancaking.
I'm hoping the laws of physics are more favorable when it comes to floor strength, or one day I’ll be relaxing on my chair in the den (total weight 575 lbs) and suddenly find myself in the basement with what remains of our floor.**
Although I’m happy with my new chair, it’s still a sign of the unrelenting course of ALS, and it’s cold comfort that this marvel of German engineering could provide decades of service well after we’ve outlived the need for each other. Some days it seems like there’ll always be a new person with ALS to fill that seat. On other days I’m confident a drug to reverse or prevent it will be discovered, and the chair you so kindly purchased for me will be left rusting under a tarp in some warehouse.
*The world is filled with more people who started Moby Dick than finished. For those who couldn't get past the first sentence, "Call me Ishmael," you might prefer the updated version of Melville's classic, which begins “Text me Ishmael.”
**A friend who studied physics at the University of Berne said this formula calculates the pressure my floor must withstand, in lb/sq inch:
(S + W)/(4A min(wr, w'r')) = 1/4 x total weight divided by minimum area of wheel applied to floor.
Here S is my weight (lb), W is the weight of the wheelchair (lb), A is a small angle in radians, w and w' and r and r' are the front and rear wheel widths and radii. Unfortunately, he lost me back at radians.
January 2024
Hey google, what’s the melting point of brimstone?
This is the season for reflection and resolutions to become a better person. ALS is using up much of my future, so last January, I sought redemption for something that happened 60 years ago. Needless to say, it did not go well.
But first, What makes a good person? And how many bad things can that person do before being no longer good?
I ask friends to share the worst thing they've ever done, and their transgressions seem more humdrum than heinous, with none warranting an eternity of pitchfork prodding. But if I'm destined for hell, it's for something I did when I was twelve, and Thou shalt not steal doesn't even begin to cover it.
I decided to read an entire book every day, and our local library couldn’t have been less local. But one block away, carousels were filled with paperbacks at Jack's, a candy store owned by a Polish Holocaust survivor, and every day that summer I stole one.
Perhaps you'd forgive me if I had stolen better books, but I preferred Doctor No to Zhivago and Perry Mason to Atticus Finch. After two larcenous months, I went to steal the last James Bond, but Jack's door was locked and remained shuttered until a laundromat opened there.
Decades later, I still felt somehow responsible. I began searching property and tax records last January, eventually found one of Jack's living relatives, and called him.
"I heard of some uncle somewhere with a candy store. What kind of money are we talking about?" he said.
'Well, I stole maybe 50 paperbacks that cost 50 cents, so I'd like to give you the $25. I know it's ridiculous, but it's bothered me forever, and now I'm really ill and want to make amends."
"Shouldn't you take inflation into account?" he said. "The replacement value gotta be $3000 now." We finally settled on a figure that left us both unsatisfied.
I’ve already implemented this year's resolution: be less of a distracted dad, inattentive husband, and fair-weather friend. But one month after launch, a troubling theme emerged, best characterized by my wife's comment, “That's great news -- when do you start?”
Note from the Editor: According to biblical sources cited here in Physics Today, the temperature of hell must be equal to or somewhat below the boiling point of brimstone, now better known as sulfur, which is 717.6 K (832.0° F) at normal pressure. You’ll also learn the exact temperature of heaven.
Note from the Author: Suggestions for future journal entries are welcomed, but comments like “More Neptune, less ALS” are profoundly unhelpful. In fact, my dog Neptune was asked to launch his own TikTok account. “Too many damn cats,” he said, declining the offer.
February 2024
The FDA never knocks
People with unconventional views are too often branded as cranks, kooks, and crackpots. I have been ridiculed simply because of my theory, long familiar to readers of this journal, that I developed ALS from eating a bad sausage sandwich at a street fair. So you'll understand my reluctance to share how I create neurons from items commonly found under a kitchen sink.
But even I don't know what to make of the conspiracy theorists who believe the FDA keeps certain life-saving therapies from ALS patients purely for profit. Might a more likely explanation be that the FDA, like all bureaucracies and our unlucky spinal cords, has become sclerotic over time?
Conspiracists surely number among my readers, and I believe in giving people what they want, so please enjoy a sample of my explosive exposè of an FDA knee-deep in shadowy deals, using its power to silence anyone who gets too close.
Chapter 1
The two barged in without knocking. They wore crisp suits, tightly knotted ties, and the look of men used to getting their way --- with no one being the better for it. Standing over my wheelchair and brandishing FDA IDs, they reeked of reefer and Relyvrio.
“You’ve been nosin’ around Nurown. Asking lots of questions about advisory committees,” one of them rasped. “We’ve decided that's not conducive to your well-being.”
“Your concern is touching, but I find a bowl of Fiber One every morning...”
Two hamlike fists grabbed my sweater and lifted me off the wheelchair. I tried telling him to be careful with the garment as it was one of the few I could put on without any help, but the room suddenly started spinning. A black hole opened up the size of Stephen Hawking and I dove right in.
***
I jolted awake, bruised and alone on my office floor. As I struggled unsuccessfully to rise, I couldn’t shake the feeling that I had glimpsed the shadows of a larger conspiracy—one that extended far beyond the confines of my wheelchair and the limitations of my own mortality.
But first, I pulled out my phone and punched in the number I knew best.
“EMT, what's your emergency?”
“Hey Charlie, this is Vic.”
“Somone shoved you outta that damn chair again? We'll be right over.”
March 2024
I continue to receive concerned queries about my health despite doing my best to discourage them by rudely replying, “How much do you want to know?” or “You can't handle the truth.”
My favorite response remains the one that quickly moves conversations anywhere else: “I’m like the man plummeting from a skyscraper who says as he passes each floor, ‘So far, so good.’”
I’ve never had so many people intent on asking questions about my health as when I participated in a clinical trial last year, each answer then recorded in a distressingly thick three-ring binder. But with some wishful thinking and an elastic sense of language, many of my responses could miraculously slow or even reverse the implacable progression of ALS, at least on paper.
I’ve already written about one such questionnaire,* the ALS Functional Rating Scale (ALS FRS-R), and the lengths one might go to avoid a loss in function. For example, the inability to use a knife is a point loss, so I slice food with a fearsome scimitar-like blade developed in the 13th century for Mongol invaders with ALS.** I still avoid leeks, which are fibrous and difficult to cut, as I refuse to lose points over a vegetable.
A newer tool, the Rasch Overall ALS Disability Scale (ROADS), is said to improve tracking of symptom changes by asking subjects to rate their ability to perform a large number of tasks as either normal, done with difficulty, or not at all.
This seems reasonable, but what if the task were the ability to speak for hours (Q20)? I'm not a filibustering senator or acting in a play by Eugene O'Neill, yet I could easily complete this task. In fact, my wife often asks if I ever tire of hearing my own voice. And despite ALS, I never do!
I also responded that I can speak in a noisy room without difficulty (Q19), as I’ve always been called a loudmouth. My interviewer gently inquired if that might be more a matter of content than volume.
I refused to answer several questions for painful personal reasons -- climbing a stepstool (Q24), for example. I haven’t used one since 1983, when I received a 3:00 am call from my dad that began with, “Aunt Lucille put a stepstool on top of the mahjong table to kill a spider and....”
My responses to a third questionnaire prompted an immediate visit from my neurologist, communications to the independent drug monitors, and possibly alarms sounding throughout the halls at the FDA in Maryland.
But you'll have to wait until next month to hear more. For now, here's some advice: Don't joke when taking the Columbia-Suicide Severity Rating Scale.
*See Confessions of a recovering ALSFRS–R addict. November 2022
April 2024
The mortal coil shuffle
Last month I wrote about two questionnaires repeatedly given to participants in ALS drug trials and gave this advice about a third: Don't joke around with the Columbia-Suicide Severity Rating Scale.
I’ve never taken life’s large events too seriously—not marriage, family, or career—and have had some success at each, so why shouldn't I take life’s large last one with the same lack of sobriety? I’ll admit this may be a minority opinion. Consider this a gentle warning for the frivolity that follows.
Despite a terminal illness, I don't spend time thinking about suicide, although my exasperating behavior has long induced these thoughts in friends and family and even been wished upon me by total strangers, usually while driving. But the Columbia-Suicide Severity Rating Scale made me think about it a lot. This breath of fetid air blown in from Bethesda was mandated by the FDA for all clinical trials after an antidepressant was found, postapproval, to cause suicidal thinking. However, planning an exit strategy for ALS is usually not a sign of deep depression, but pure pragmatism.
After several clinic visits, I finally declined to answer that questionnaire and was told if I wished to continue the drug trial, I had to respond. And so I did:
“Have you planned out how you would do it?”
“I’m nothing if not a planner.”
“What was your plan?”
“Go to Michael's party store... Would that be a red flag for you?”
“Excuse me...?”
“The helium in tanks bought to fill balloons was once used to end lives, but now all commercially available helium tanks contain enough air to render them unfit for anything other than celebratory occasions, which brings us to red flags and 9/11 hijackers.”
My interviewer moved to the very edge of the chair, her feet flat on the floor as if she were about to leave. I knew she wouldn't—the FDA needed my answers.
“The 9/11 terrorists wanted to learn how to take off, not land a jet -- clearly a red flag. I imagine red flags were flying at party stores when customers in wheelchairs sought helium tanks, but no balloons”:
“Excuse me, where are your helium tanks?”
“Aisle 3... but balloons are in Aisle 6.”
“Don't need ‘em...In fact, their presence would be highly inappropriate.”
When we returned to the actual questionnaire, I disclosed that I’d begun hoarding prescribed opioids soon after my diagnosis, in the same way one carries an umbrella to ensure a bright blue sky. I plan on these drugs expiring well before I do.
Despite these assurances, once I invoked the ‘s’ word, it triggered an immediate visit from my neurologist, who luckily knows me better than the FDA does.
ALS, of course, is a competent killing machine on its own and needs no human assistance. Years before my diagnosis, my wife and I often made dinner for a dear friend living with ALS. One evening at the table, she asked if I would help “when the time came.” I readily agreed and, although my aid was ultimately unnecessary, I remember showing her a scene from a Marx Brothers movie that I knew she’d greatly appreciate:
CHICO:
I'd do anything for money.
I'd kill somebody for money.
I'd kill you for money
[Harpo looks dejected]
No...You're my friend.
I'd kill you for free.
[Harpo smiles]
May 2024
The smallest room in your home is the most dangerous -- About 235,000 people visit emergency rooms for injuries sustained in the bathroom each year. So if you're a thrill-seeker with ALS like me, the bathroom may soon become your favorite place too!
Speaking of danger, according to the Bureau of Labor Statistics, the three highest-risk jobs in America are logging, roofing, and washing me in the shower. Additionally, their average salaries are below the mean annual wage, but unless someone can put a price on eternal gratitude, my wife’s $0/year salary may have skewed those calculations. Her lingering in the shower with me brings a fivefold increase in injury resulting from shaky romantic interludes, a risk typically not encountered while roofing. Jeff and Jim, the two sturdy young firemen who rescue me from those slow, slippery slides onto the tiled floor, are now considered part of the family and, as such, receive holiday-themed ear muffs.
For baths, one can be slowly submerged in a tub with a winch, but a launch of this sort traditionally demands that a bottle of champagne be broken over my forehead, a dealbreaker for my wife.
We tried applying two valuable techniques my wife had learned in business school to help navigate my pee schedule. Toyota’s Just-In-Time manufacturing seemed ideal, as it avoids waste and overproduction, leading to better flow. A rereading of the textbook revealed that the goal is better cash flow, which explained the Not-In-Time rest stops on my way to the bathroom. Luckily, my wife learned to change my pants faster than a Formula 1 pit crew can change tires.
Also, any business student knows that the last mile is the final and most complicated phase of delivery logistics. Like an old horse that suddenly bolts when the stable comes into view, I find it difficult to contain my excitement the last foot from the toilet. But finding someone willing to take me just the final few steps proved difficult, and averting my eyes from the toilet only further slowed my already sluggish walk to the bathroom. (Have I mentioned my wife's prowess in changing pants?) The solution ultimately lay beyond the arid lecture halls of business schools and was much simpler -- Prophylactic Peeing, more commonly known around here as the Pre-Pee.
But the real heart-stopping danger in bathrooms for all of us with ALS isn't from falls on wet floors and visits to the emergency room. It’s inside our medicine cabinets – now a warehouse for withdrawn or marginally effective drugs, each one bleakly marking yet another hope deferred.
Not that I would ever snoop in your medicine cabinet.
June 2024
Your ALS guide to quiet romantic dining
Even before he fell, we noticed him because his dinner companion was the singer Dionne Warwick. The crowded restaurant was small and elegant, with tables draped to the floor with delicate linen. Only when he rose to leave did we see his leg braces. He took one step before taking down his table and several others, breaking glasses and plates on his way to the floor. A few waiters helped him to his feet. Then, calmly brushing food from his suit jacket, he offered an unembarrassed apology, smiled broadly at the singer, and left on her arm.
Decades after this incident, I still search for his casual confidence in myself, but it remains elusive. Especially since friends keep inviting us to restaurants because everyone loves my wife and tolerates me.
“Is it accessible?” my wife asks.
“Sure, the website says so.”
“Well, I called and was told that the restaurant is theoretically accessible -- once you go up some steps, it's totally wheelchair-friendly.”
Unsurprisingly, patrons and restaurant staff are considerate of anyone in a wheelchair. However, one time I moved my wheelchair further into the aisle to stretch my legs for a moment and nearly tripped a waiter delivering salads to our table. After placing them down, he leaned into me and whispered, “Do that again, and I'll slice you like a smoked salmon.” The waiter had a thick French accent, so he might have only said,” Enjoy your dinner.”
Here are a few tips to ensure a romantic evening out with your partner:
Some of us have problems with excess saliva and drooling, which can be distracting even in a dimly lit restaurant – try ordering a soup or highly sauced entrée to mask even the most avid drooling.
Feel a leg spasm coming on? Put it to good use by positioning that pesky limb next to your partner’s and play footsie under the table.
Certain foods must also be avoided by one-handed diners who battle with cutlery. Faithful readers of this journal already know of my fear of fibrous vegetables and all but the most tender cuts of red meat.
To save you the embarrassment of chasing food around your plate, also avoid all spherical fruits and vegetables. And who thought it necessary to turn sedentary squares of cantaloupe into self-lubricating melon balls?
Want my best advice for quiet romantic dining? Turn off your power wheelchair before getting your sweater entangled with the joystick. And make sure there’s an unembarrassed apology ready for all those toppled tables. But until I master his grace under pressure, I’m using Dionne Warwick’s dinner companion’s: “Sorry for the mishap, ladies and gentlemen. Please enjoy what’s still left on your table.”
July 2024
Welcome aboard AirALS!
Few professions outside of healthcare acknowledge failure as an unavoidable part of doing business, and nowhere is this clearer than in the marginally effective treatments approved for ALS. So hope looms large in this uncertain calculus, as in, "I hope this damn drug works."
Most people would never board an airplane after hearing the pilot announce, "If one of our wings doesn't fall off, we hope to land in four hours." But those of us with ALS readily ride that plane, even with ice on its one remaining wing and a sputtering propeller, hoping it stays aloft as long as possible. And that's why I have continued taking Relyvrio after it was proven no more effective than a placebo.
A few months before Relyvrio was withdrawn from the market, I participated in video research sponsored by Amylx, the pharma company that developed it and was paying to hear my opinion. (My wife and friends know better than to solicit my opinions and would certainly not pay for that privilege, as they consider them more the rantings of a lunatic.)
"I affectionately call it the shit drug.”
The moderator glanced nervously off-screen, presumably at a marketing manager from Amylx.
"Why do you call it that?"
"Because it tastes like shit and makes you shit."
Had I known that the drug would soon be pulled, I would have added, "…and it works for shit." Admittedly, I shouldn't have said that I had filed a trademark application for the slogan, Relyvrio – Some Of The Worst Shit On Earth.
So why am I still taking Relyvrio? It’s the powerful persistence of hope. Despite the failed drug trial, my neurologist believes there were signs that it works in some percentage of patients. More than 0%? Sign me up!*
Ironically, one of the many hopeful avenues of research also happens to be the shittiest -- fecal transplantation. This procedure introduces bacteria from healthy donors to the digestive tract of people with ALS to help control immune responses and brain activity. Having spent much of my career in advertising and taken tons of shit from people for money, I'll happily take an ounce for hope and health. And more frequent flyer miles on AirALS.
*Relyvrio had a list price of $154,000–$158,000 per year. While no one paid that price except Saudi oil ministers and Russian oligarchs with ALS, its high cost was as hard to swallow as its taste, leading some patients to discontinue usage within a few months. On the other hand, Amylx is now giving away the remaining supply of Relyvrio to existing patients.
August 2024
My ALS Olympic biathlon
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 is performed with an empty bladder, the second with the bladder full as determined by ultrasound. The third and most dangerous level 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.
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.
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.
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.