Once again, it’s time for the next installment of Howard’s Divine Comedy, wherein Howard continues on his journey toward death with his hero companion.
Fever roll up to a hundred and five
Roll on up, gonna roll back down
One more day I find myself alive
Tomorrow maybe go beneath the ground*
(*–Robert Hunter, from Black Peter by the Grateful Dead)
Howard: That’s sure a whole lot of up, down and maybe there, Jerry.
J: That’s life, Howard!
H: True that! And that’s exactly how I’ve been feeling lately: up, down, maybe even underground as soon as tomorrow.
J: Sorry, my brother. ALS sure sucks bigtime.
H: It sure does. You know, recently, several times over several days, while I was writing my last blog post, I’d come to a stopping point, the end of a train of thought or something, but before I fully closed the lid on my laptop I was overtaken by an intense feeling, like if I stopped writing I might very possibly up and die already. I mean, I could stop writing, but what else would I do with my time? I could read a book or watch some TV? No, in that moment, confined to my armchair as I am most of the time, I was face-to-face with the depressing awareness of just how small my life has become. And so I reopened my laptop and chose to continue writing, only now it felt like my life depended on it.
J: Wow. Write or die! That’s heavy, man!
H: I know, right?!
J: For some reason, that makes me think of:
In the book of love’s own dream
Where all the print is blood
Where all the pages are my days
And all my lights grow old**
H: Right on! And so, what do I usually do when I get to that dark place? I play some Grateful Dead music, and you and the band come to the rescue, just like the next line in that song:
When I had no wings to fly
You flew to me
You flew to me**
(**–Robert Hunter, from Attics of my Life by the Grateful Dead)
J: [blushes] Aw shucks!
The following was written using 3rd-person narration for two reasons. First, it had been ages since I’d written in 3rd-person and it’s a heckuva lot of fun. Second, it will likely become obvious as you read on that writing this particular piece was just going to be WAY too scary in 1st-person. 😉
By now The Writer had been writing steadily for many years, most recently having completed a memoir, following it up with regular entries in his online journal, all quite noteworthy given he’s slowly dying of an incurable neurodegenerative disease.
And yet, since his diagnosis, a self-assigned guiding principle for all his endeavors in letters was to prevent his writing from being relentlessly morose or maudlin. After all, he wouldn’t be interested in such material himself, and so he thought, “Why subject readers to a relentlessly depressing recitation of the experience of a terminal disease?”
Rather, it seemed to him a marvelous creative challenge to let light into the picture, the light that’s always there, even when temporarily obscured by clouds or pain or depression. He’d always thought he had a pretty good sense of humor, and so irony, sarcasm, and comedy would be employed to maintain balance, along with regular references to nature and the arts, two of his most reliable sources of illumination and transcendence.
Heck, even the occasional emoji:
…could do the trick!
Were he completely honest, he knew it would hurt a little if fellow writers and/or critics protested in disapproval of his approach, most likely purveyors and consumers with a preference for gritty realism. However, The Writer was also known to declare that being terminally ill is tremendously liberating, because a dying writer does not have to give a shit about what anyone has to say concerning their work.
When The Writer heard that one member of the multidisciplinary hospice team assigned to him held the title of Chaplain, like most people his age, having been raised on television in the 1970s and ’80s, he of course immediately thought of…
Father Mulcahy from M*A*S*H:
Imagine his surprise, then, when a Chaplain arrived at his front door one day in the form of a Jewish woman named Esther.
Although a lifelong agnostic and dabbler in Buddhism, The Writer rather likes most of his fellow Jews, and so, no exception, he and Esther hit it off instantly. Their shared cultural heritage, coupled with varied but significant degrees of religious education, and seasoned with bits and pieces of Hebrew and Yiddish, all mashed up together served as a kind of second language. When English failed, as it occasionally did during their sometimes intense discussions on the subject at hand — The Writer’s impending death — they could rely on this second language to carry on. It’s what Jews do.
For example, during one of her recent visits, when The Writer happened to mention that he’d just had an unusual writing experience, things got Jewish pretty quickly.
“So, I was writing a couple of weeks ago, and several times as I came to a stopping point, but before I fully closed the lid on my laptop, I was overtaken by an intense feeling, something like, if I stopped writing I could quite possibly up and die right there and then.”
“Interesting. Reminds me a little of an old story from the Talmud.”
“Really? Which one?”
“Well, there was this beloved 2nd century Rabbi, Yehuda HaNasi, and he was dying and in a lot of pain. The Sages of the community didn’t want the Rabbi to die, and so they fasted, chanted psalms without ceasing, and recited prayers begging for divine intervention to save him. Meanwhile, a maid of the house — observing that the Rabbi’s suffering persisted unabated despite the loud, incessant pleas of the Sages — picked up a clay jug and smashed it on the ground, the sudden noise from the shattering of the jug distracted the Sages, they stopped their chanting, and in that brief moment of silence the Rabbi died.”
“Ok, so, are you saying that the ‘Write or Die’ sensation I had is a message that it’s time for me to stop writing so that I can finally die and end my suffering?”
“Because, you know, writing has often been a joyful experience for me, occasionally cathartic and emotional, but when the thought is ‘keep writing or you might as well be dead,’ all the joy has basically been sucked out of the process.”
“I just thought there might be a cool story in there that you could write.”
Just Like Joseph of Arimathea’s Blues
Ever since he was diagnosed with ALS, The Writer assumed he’d be no different than the majority of people inflicted with the disease, and therefore the eventual cause of his death would be respiratory failure. Meanwhile, though it would unquestionably be brutal as the muscles in his arms, hands, legs, and feet wasted away and paralysis set in, 2-1/2 years into his 2-4 year life expectancy he was at least still able to type using his two index fingers, supported by splints.
Yes, it could be said — given the devastating loss of ability to partake in so many physical activities that had been the source of most of the joy in his life — that it was a gift for The Writer to be able to continue writing. One could even say it was a lifesaving gift. And yet, he never imagined that this could be literally true, at least not until this idea started to form that the practice of writing was possibly, maybe even magically, keeping him alive, or conversely, were he to stop writing, that his life might come to an end.
No, he couldn’t quite accept it as a real thing that could happen to him, or anybody else for that matter, but he also couldn’t shake that ‘Write or Die” moment he’d had several weeks prior, nor Chaplain Esther’s suggestion, inspired by an ancient Talmudic tale, that there could be a story in there somewhere that was worth writing.
Initial brainstorming was frustrating, always ending up in a dark, torch-lit dead end, where this scene from his all-time favorite comedy film, Monty Python & The Holy Grail, played on a continuous loop:
“Now that’s just not fair!” thought The Writer. “Monty Python, hands down, owns this idea! Joseph of Arimathea carves his dying gasp into the stone of the cave wall … as he dies?! The Animator dies of a sudden heart attack, the cartoon Black Beast disappears, and King Arthur and his Knights are spared?! Game over!”
But rather than getting bogged down in paralyzing disappointment, The Writer instead realized two things:
1.) It’s not a competition. He didn’t need to write anything objectively better than his British comedy heroes’ epic masterpiece. Instead, the goal, as always with writing, should be to simply enjoy the process and hopefully be pleased with the final product.
2.) His story needed a
grail MacGuffin! Per Wikipedia:
In fiction, a MacGuffin is an object, device, or event that is necessary to the plot and the motivation of the characters, but insignificant, unimportant, or irrelevant in itself.
Don’t Push The Big
Red Blue Button!
There were bad days — heavy with fatigue, constantly short of breath, scary moments of lost balance while walking to and from the bathroom, meds dropped on the floor while half-asleep at bedtime — and there were not-so-bad days, when tapping away at the keyboard was adequately tolerable, and the creative flow mercifully cooperative.
It had been several weeks since ‘The Incident,’ during which time The Writer had been able to close his laptop lid when ready to take a break without an accompanying dread that, were he to stop writing, he might suddenly stop breathing, his heart might stop beating, and he’d be dead.
Additionally, a memory attached to an old friend proved helpful:
This friend was an avid skier, and his wife and young son skied often, frequently on day trips to Mt. Baker an hour east of home, other times a 3-hour drive Stevens Pass, where they were members of a private ski lodge and spent whole weekends and sometimes entire weeks.
At some point, their son had been complaining regularly about all the schlepping of gear and long car rides involved, and so one day The Writer’s friend said to his son, “Son, you love skiing right? Yeah, I know you do. So listen, the hauling of the gear, the boring hours in the car with your old fogey parents, the chairlift rides, carving turns in powder down a Black Diamond, and pizza at lunch, well, it’s all skiing! It’s a package deal, not à la carte.”
Applied to writing: For The Writer, it was never merely a matter of pencil/pen on paper or fingers tapping at a typewriter/computer keyboard. A lot of very important composition work happened while daydreaming, on hikes in the forest when he was still able, or lying in bed, staring at the ceiling, waiting for sleep to takeover.
It’s all writing! A package deal!
But then came a rough patch, physically and emotionally, the details of which, The Writer would say, are incidental. As he explained one day to his wife, having already been given a prognosis of approximately six months left to live, and the six months having now come and gone, rather than feeling relieved that the end had not come, he instead felt that he was now on borrowed time, that the end was waiting for him around some corner he could unknowingly steer into at any moment.
Such were his circumstances when The Writer, having reached the limit of what he could accomplish in his head, began considering when he might return to his latest work, currently in-progress and saved as a draft on his computer. For the previous six months, of course, there was always the added, overwhelmingly heavy question as to whether or not his next piece of writing would be his last, and so, when he next opened the lid on his laptop, then opened the software he used to write with, the first thought to emerge was that unwelcome ‘Write or Die’ notion he had hoped would not return.
Concurrently, at that exact same moment, his eye happened to land on the big blue button in the top-right corner of his screen, the button used when a piece was done and ready to be posted online, a button he’d clicked on literally thousands of times over 15 years, a button that would never, ever look the same to him again:
For a solid week, The Writer was spooked and avoided his laptop altogether, figuring that if he didn’t start writing something, he wouldn’t finish anything, and if he didn’t finish anything he would not have to push the Publish button.
He was NOT ready to die. He had much more that he wanted to write!
When he considered that he could get back his writing and save his work as a draft, indefinitely, he wavered. But then he thought of a prank another old friend once played on him years ago:
They were in a movie theater, and as the house lights were dimmed and the film started, his friend whispered to him, “Hey, don’t let that neon Exit sign right next to the screen bother you.”
The Writer hadn’t even noticed the Exit sign, but sure enough, throughout the entire film he could not unsee it, and worse, he has noticed the Exit sign just beside the screen in every single movie theater he has been in over the 30+ years since that terrible day.
To the point: How could he write on his laptop without that menacing blue Publish button always hovering there in the corner as he worked, especially now that it held new meaning for him?
Howard: Jerry! Jerry! I need you!
Jerry Garcia: Woh! Right here, man! What’s up?
H: I’ve written myself into a death trap!
J: Ok, settle down, it’s alright. Breathe, and notice everything’s actually ok. Nothing bad is happening in this moment. I’m right here with ya, brother.
H: Oh man, crazy, I really convinced myself that once I finish this piece I’m writing and click on that big blue Publish button I’d actually kick the bucket.
J: Cool! Perfect ending for a writer … um … right?
H: Ha! Yeah, I suppose.
J: So, what got you spooked?
H: Well Jerry, I really have figured out during our journey together that I’m not particularly afraid of dying. No more than ordinary, run-of-the-mill uncertainty of the unknown, anyway. But, right there toward the end of this piece, where I wrote:
He was NOT ready to die. He had much more that he wanted to write!
…that seemed telling.
J: Yeah, you’ve always had a lot to say, Howard … um, I mean … in a good way!
H: [laughs] I sure was given the gift of gab!