Disclaimer #1: Yeah, I know! I ended my last post with a Holden Caulfield-esque declaration:

I’m a dying writer, and if all I do from here on out is simply write whatever the hell I want, when I want and am able … well … that’s all I’m gonna damn well do. I’m not kidding. I really mean it.

…and yet here I am, wielding perhaps the lamest euphemistic trick in the history of the written word — the substitution of an asterisk for the vowel in the first word of the title for this post — as if any English-speaking person doesn’t immediately recognize the euphemized word or can’t easily identify it in the context of the whole title.

Heck, even if you ask Google Translate to translate “sh*t” to Spanish, using the asterisk, it still yields the Spanish for “shit,” i.e. “mierda.”

(Hilariously, however, if you ask Google to translate “sh*t” to Italian it yields “cazzo,” the Italian for “fuck.”)

🤷🏼‍♂️

Anyway, where was I? Oh, right, so I said I’m going to write any damn thing I want, but then used “sh*t” in the title here. Well, Holden Caulfield is deeply disturbed by graffiti he sees on a wall in his sister’s elementary school that reads “Fuck You,” and yet he says “goddam” 245 times in the 277 pages (hardcover) of The Catcher in the Rye, so … sue me! 🤪

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Disclaimer #2: The following includes references to a bodily function universal to all humans — in fact universal to 99.9% of all animals — the public discussion of which, nevertheless, makes many humans very uncomfortable, myself included, that is it did until recent events rendered my discomfort superfluous.

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The Irony Of Poop

I’ve previously discussed some of the details regarding the projected end stages of my journey with ALS, aka Lou Gehrig’s Disease, two details in particular being:

1. Running Out Of Breath: Most ALS patients eventually die from respiratory failure due to the weakening of the muscles that enable breathing, and I’ve chosen to, when the time comes, forgo invasive ventilation — i.e. air delivered via a ventilator through a non-reversible tracheostomy, which means I’d also need a feeding tube and 24/7 nursing care. Not happening.
2. Death With Dignity: As I mention in two previous posts (Post 1, Post 2), I’m very fortunate to live in one of only 8 U.S. states — Washington — where it’s legal for the terminally ill to end their lives with the assistance of a physician. Therefore, having now gone through the screening process, the consultations with the physician, and acquisition of the life-ending prescription, once my breathing becomes too difficult to bear, I’ll be able to end my suffering on my own terms.

Well, that was the outlook until, all of a sudden, about a week ago, after months of gradually-increasing difficulty getting up independently off the toilet due to my weakening arms and legs…

I. Just. Couldn’t. Do. It.

The feeling of helplessness in this situation — stranded there with pants down at the ankles, a moment of difficulty recalling whether or not anyone else was home, much less within earshot, followed by the humiliating thought of someone having to invade the privacy of the bathroom in order to rescue me — was devastating.

That this was now the new normal for me was a thought beyond devastation, despite having known for over two and a half years that it was inevitable. It felt like a game changer, like the final straw, and…

…it had nothing at all to do with breathing.

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Reduced & Flushed?

Indulging this depressing train of thought is unfortunately altogether too easy after having already had my life reduced and reduced by a million small, painful increments, starting before I was even formally diagnosed.

Introduce this most recent reduction, and this one change makes it feel like life has now been reduced to:

• Wake
• Bide time
• Have body moved to bathroom in order to dump waste
• Bide time
• Sleep

Of course it’s not actually like that, but that IS how it feels if I think about it too much, and thinking is very nearly the only thing I can still do prodigiously.

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3.5 Inches

We have these charming French farmhouse-style dining table chairs with padded seats and sturdy armrests, but I needed to add a cushion to the seat about a year ago, because I’d lost so much weight and muscle mass and my butt no longer offered enough padding for my sit bones. Hence, thanks to the height added by the cushion and the geometry of the armrests, I’ve been able to independently stand up from these chairs. 

Within days of the toilet incident, an attempt to rise from my chair after a meal was also unsuccessful. And yet, immediately slipping into despair was avoided, when, once assisted out of the chair, without hardly thinking, I asked for an additional cushion from the sofa, it was added to the dining chair atop the cushion that had been there, I sat back down, and then proceeded to stand up from the chair without any assistance at all.

The toilet has proven a bit more complicated, due to a seat-based bidet we had installed last year, but after some research by some friends and help from hospice care, in the next few days a riser will be installed between the bowl and the bidet, adding a mere 3.5 inches of height, a seemingly insignificant measurement that will mercifully extend my independence for a while longer.

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Shit, Or Get Off The Pot

English idiom, vulgar slang
–Used to convey that someone should stop wasting time and get on with something.

So, yet another crazy old idiom that I never dreamt would apply to me, literally. (see Of Legs & Lasts)

Shit, or get off the pot … that is, if you can get off the pot!

🤪