Ok, so, a year ago today I was told that I had approximately six months left to live.
(Pausing here, we do the math, we observe the writing below, and we conclude, despite the odds, that the author must not have died yet. 🤪)
Those of you who are regular readers of The Owl Journal already knew that this day was coming soon, because I’ve mentioned it or alluded to it in quite a few posts here at the blog, the most explicit example being: The Boy Who Cried…Owl?
Through my writing, I’ve been trying for six months to make some sense of this unexpected, at-the-wire longevity, and so you might ask, then, whether or not I’ve been successful?
Have I actually managed to figure anything out?
Well, I certainly haven’t sussed everything. For instance (small sample):
- I still have no idea, whatsoever, as to how much longer I’m going to be here — wherever here is 😉 — while the ALS, aka Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s Disease, continues to progress, as it does, there’s still no effective treatment, and no cure, muscles are getting weaker, and breathing’s becoming a little more difficult each day.
- I have no idea why, especially, I needed to still be alive for last week’s brutal once-in-100-years heatwave. I mean, was it some kind of sick joke about Hell?
- I am still desperate to know if there will be NY-style pizza, craft beer, and Ben & Jerry’s ice cream in the afterlife.
And so, the following is a brief collection of observations from the past six months, because, as it turns out, I have indeed figured a few things out.
On The Topic of My Six Bonus Months
😡 ALS Still Sucks Ass! 😡
🙄 ALS The Teacher? 🙄
I’ve always found it extremely distasteful, the suggestion made by some that the most painful things we experience in life can actually teach us valuable lessons. Applied to ALS, for instance, I vehemently do NOT wish to grant this nightmare of a disease credit for anything remotely positive.
I mentioned this in my memoir, I, Too, Heard The Owl, but I’ve thought about it a lot again recently, and begrudgingly it’s hard to argue that there isn’t something here resembling a lesson:
Pre-diagnosis, I used to complain about SO many things that, post-diagnosis, I’d give anything to still be able to do indefinitely, including but not limited to:
- Push-ups & Sit-ups
- Filing Tax Returns
⚾ Play Ball! ⚾
While it’s true that what I wrote back in May still stands:
“So, now what?
Will I get eleven months? Twelve? Perhaps a baker’s dozen?
That would be over 100% more Howard than originally anticipated!
That’s a good thing, right?!
Sadly, sorry to say, I have no freaking idea…“
…at least I’ve finally come up with the perfect metaphor:
Once you’ve outlived the six months prescribed in the doctor’s ‘You have six months left to live.’ declaration, life begins to feel like you’re watching a baseball game that has gone into extra innings.
(Note: Once, when I was a kid, I went to a Philadelphia Phillies twi-night doubleheader with my next-door neighbor/best friend and his dad, and between the 1.5-hour drive each way, several rain delays, and both games having gone extra innings, we didn’t get back to our East Brunswick, New Jersey homes until after 2:00 AM. So, when I say that these past six months have felt like ‘extra innings,’ this is my frame of reference. )
⚒ Dying Is Not A Project! ⚒
While my terminal diagnosis plunged me into a stereotypical psychospiritual reckoning with mortality, marked by voracious reading, a guided shamanic magic mushroom journey, daily meditation, contemplative/analytical writing, and probing discussions with just about anyone willing to ride shotgun, one of the most profound breakthroughs of insight — concerning the afterlife and described in my last post — followed shortly after my decision to stop working on dying as if it were a project.
I’d had an inkling way back in March 2020 that this is what I needed/wanted, and I wrote about it at the time, but it took nearly a year for me to actually pull the plug on the project.
⏰ Obligatory Einsteinia ⏰
There’s not much one can say about time and relativity that hasn’t already been said, including the very statement that there’s not much one can say about time and relativity that hasn’t already been said.
In fact, it’s kind of a writer’s nightmare, when every attempt to express something like this:
At times, the past six months seemed to pass excruciatingly slowly, and at other times they breezed by breathtakingly fast.
…ends up setting off the shrill, demoralizing Cliché Alarm.
Still, I feel it would be conspicuous for me to not comment on the relativity of my six bonus months, so there, I’ve said it, my obligatory debt to Meister Einstein has been paid.
🕊 Finding Peace 🕊
For nearly three years now, I’ve had in mind an imaginary line in the sand, demarcating the point at which the level of disability I reach will render my life unbearable.
In February, as I wrote then, I got an unwelcome preview and a confirmation of this unbearableness for about 3-4 days, when I was temporarily unable to independently get up off the toilet. A riser was eventually installed, raising the toilet seat 3.5 inches and restoring my independence for a while longer, but the glimpse I had of a life wherein I’d always need another human being at-hand to move my body around from room to room, from wheelchair to toilet/bed and vice versa, was indeed convincing.
Then, one evening quite recently, my wife and I were watching a television show, a period drama set in 1958 rural Australia, wherein one of the much beloved characters, a man in his 70s, had been battling lung cancer. He’d already had one lung removed, but a bloody hemorrhage landed him back in the operating room (or, operating theatre, as it was then more elegantly called), and once he was opened up it was sadly discovered that the cancer had spread aggressively and was inoperable, terminal, as in he had mere weeks, painful weeks, left.
It just so happens that the man’s birthday was imminent, a big party had already been planned, and so they cut to a glorious sunny day, a grand celebration with hundreds of guests is in progress on the lawn of the family’s substantial manor house, the man’s family and friends showering him with love, enjoying music, and dancing, and food and champagne.
Cut to the quiet of the man’s bedroom, the party has clearly ended, and his wife is helping him into bed. The man is aglow from the festivities and the infusion of loving attention he’d just received, a symbol of the full, long, life-well-lived life that he’d had.
Unbeknownst to his wife, behind the scenes, he’d managed to procure a lethal dose of morphine, and once tucked in and beginning to feel the pain surging back as his last therapeutic dose wears off, he tells his wife — with a smile on his face, despite the pain — that he’s ready to die.
There were tears, for sure, but the overriding mood of the scene was of a very beautiful peacefulness. The day had been — to honor one of Australia’s national pastimes — like riding the perfect wave. He was buoyant and happy and grateful to have been able to enjoy one last day of joy, because he knew that his last days would otherwise amount to a mostly losing effort to dull the pain.
So, his wife passed him the bottle of morphine, they gazed at each other through quiet tears and glowing smiles, he drank down the morphine in one gulp, and after a minute or so, snuggled in his wife’s warm embrace, his sleepy eyes closed for the last time.
The scene ended, and I immediately thought:
THAT is what I want!
Why the HELL would I wait until I’ve crossed that stupid line in the sand?!
Seriously, why would I do that to myself?
Wouldn’t that be a senseless act of masochism, especially given the fact that I’ve already been screened by the required two physicians, determined eligible to utilize Washington State’s Death with Dignity Act, prescribed the life-ending medication, and said medications are currently stored in my fridge, waiting for me to decide when I’m ready?
Now, I still have no idea when this will actually happen, no date has been set, in fact, gods/goddesses/spirits, PLEASE save me from the planning process!
But, I DO know that I want to go out peacefully, rather than trapped and floundering in an unbearably incapacitated state.
And ever since this epiphany hit me, I’ve felt, by orders of magnitude, more at peace with my impending departure than ever before.