P
September 12, 2021
Over the last several years my body has failed me in many significant ways. I’ve written about it in past skirblogs, available for your perusal here. Here and Here. So why would I continue writing on this path? What’s to gain other than self parody, loss of dignity, cheap laughs? My late father liked to tell various caregivers and attendants that he didn’t care what they saw or had to do to him. That he had given up any thoughts of “dignity” long ago. But now I wonder about “dignity” and the purpose it serves. Of course it hides things from other people to save oneself embarrassment. Is this necessarily bad? I mean, everybody doesn’t need to know everything about you, do they? People don’t even want to know in most cases. So why overshare?
Oversharing is my stock in trade these days. I can’t help but to think that hiding behind dignity perpetuates certain stigmas. Makes you more ashamed to have what you have, or lack what you lack, so you pull a cloak over yourself, curl up and pretend it doesn’t exist. I try to forget about dignity when I’m writing, and have found that oversharing can lessen the pain. So I press onward rather blindly, with only a vague inkling that I have nothing left to lose.
Its an odd thing to say really, about my body failing me, since it implies that I am somehow not my body, that I am apart from it, watching as it slowly falls apart and stops behaving. Who am “I” then? Perhaps Master Blaster from the Mad Max Thunderdome movie, a small, physically weak person sitting atop the shoulders of a giant, healthy body, directing it, barking orders, the brain, the master. Or maybe like Ratatouille, a rat hiding under a hat. A body/self disconnect isn’t an uncommon thought. Many people look in the mirror and dislike what they see — the image in the mirror not really “you.” Maybe you are trapped in the wrong body? The wrong gender? It seems so much can go wrong with self image. Disabled people must also feel this. I am only recently disabled so I’m not sure how it plays out with those born with physical challenges. Even before myositis hit me in my 40s, I was chronically overweight and uncomfortable in my body. I can certainly relate to looking in a mirror and thinking, “that ain’t me.”
But who is me? A former teacher of Zen Buddhism liked to teach us as we sat and meditated: you aren’t your thoughts either. You can detach from your thoughts, let them go.
So you aren’t your thoughts and you aren’t your body, who the heck are you? A free floating bodiless, thoughtless spirit of some kind, hovering around the clouds? Blissful?
I haven’t reached any states of bliss I must report. Especially with my body, the “ugly giant bag of mostly water[1]” that I, and my thoughts are encased in, sloshing around awkwardly, less and less mobile as the days go on. I slosh now with a walker. I hoist my bag via devices, lifts, climbers and electricity. This is because a disease has turned many of my muscles into a Swiss cheese like substance that is terrible at doing those tasks. And yes, it is a bummer and makes things hard, but at least I can walker-walk! I can still do dignity type stuff on my own, the toilet, the shower, eating. I try to remember those things when fed up, angry, and pissed. Pissed? They say its better to be pissed off than pissed on. But friends and gentle readers, things can always get worse. Sometimes in large terrible ways, and others in small, pissy ways. Those Swiss cheese muscles weren’t quite enough of a pain in the ass for my body, they had to also be a pain in my bladder. Heady ideas regarding identity and consciousness started to recede into the distance and were soon replaced with far less engaging topics: frequency and urgency. For lo’ the bladder is after all a muscle too, and with little fanfare or advanced notice, I entered the continent of the incontinent, driving a vehicle of leaking gaskets and radiators. I’m only 59, but now also an old pisser.
No, you didn’t want to know that, and I didn’t want to tell you either. But its part of the deal about “dignity” that I am trying to connect to. I will say too much, struggle with dignity, and somehow be freer. You? I don’t know really about you.
This was a wholly unwelcome and distressing development which tested the limits of that elusive dignity. Worst of all, I had to give up one of my last pleasures, coffee, the caffeine “irritating” the bladder, a result that angered me beyond reason. Coffee loss made me MAD. Steaming, boiling, high pressure espresso cappuccino Mad. Still does. Still echoes as unfair, as, c’mon man, coffee? That too? Its all I enjoy anymore. After losing beer, tequila, bourbon, gin and vodka, after losing carbonated drinks (they too irritate), juice (sugar killing my already altered liver), and after having around $2000 worth of coffee making machinery sitting around the house now useless and shiny steel sad. Oh, the fun high tech scales, the beautiful rare wood handled tampers, endless journals of coffee tried, recipes, experiments sitting idly by. I used to cut the labels from every new bag of beans and paste them lovingly in a scrapbook. Which I still can’t get up the courage to throw away.
What can you drink that doesn’t irritate your liquid filtering and excretion organs? Water. Period. No fizz, no juice, perhaps only the smallest HINT of flavor, (Hint Water a brand of bottled water made for those who can only allow the merest whiff of taste to pass virtually unnoticed across their palate, and not one molecule more! Just a hint.) Decaf? Why bother? You could only take decaf so far, coffee-snob-wise, taste wise and ultimately I could not perk up, wake up from decaf, and was too despondent and mad to take all the care and precision necessary to make decaf coffee. Plus it still seemed to have a diuretic effect on me anyway, so fuck it. I tried to make something else that tasted good that had no caffeine and would not make me pee. Everything from weird peanut based faux coffee, to grains, husks, and chicory beverages, to no avail. People suggested dandelion tea, ginseng leaves, birch bark. Nothing worked and I gave up. Its been well over a year now, and yes I detoxed from coffee, but I still feel like shit and I’m still mad. Quitting cigarettes was easier.
Another unwelcome disclosure: when I was a kid, and onward into my 40s, I wore what today are known as “tighty whities.” Simply white underwear that was functional and the norm in my milieu. “Jockey-A” brand I might add, not the Fruit of any Looms or Hanezes etc. I was a loyal Jockey-A man and held no compunction about it. Jockey-A was a higher quality product in my opinion, thicker and more comfortable than its competitors and deserved my brand loyalty. Until that is, you find yourself stranded in a strange city somewhere with no underwear, (among other things), as I found myself one fateful summer, where buying some “emergency underwear” became a first-action item. Off to the mall my guardian angel and I went as we searched for the elusive white Jockey-A’s. But there were none to be found! Another Mall. No! I shrank at the thought of wearing horrible Hanez or those fruits of those looms. Defeat seemed to loom large until Angel suggested, why not break the tighty whitey cycle of unattractive and unappealing undergarment wear, and upgrade to the next level? And she held aloft a package of black Hugo Bosses. I was intrigued. Hugo Boss sounded classy, and black underwear? A master stroke! Why not? Since then I never looked back, I was suddenly a haute couture briefs man. A Boss man.
Unfortunately I never thought to look up Hugo Boss online (why would I?) or I would have discovered its founder joined the Nazi party in the ‘30s and revived his failing business by manufacturing uniforms for the Hitler Youth and the Waffen SS, while employing a large contingent of forced laborers. Perhaps this is why the bladder curse was laid upon me, as a Jew wearing Hugo Bosses. But by the time I knew this, I had thrown away the Bosses anyway and graduated to, ahem, disposable briefs.
In the recent Netflix show, The Chair, an elderly professor protests to his wife, “I used to bestride the world like Colossus,” as she offers him a package of adult diapers. “Well, now you’re going to bestride it in Tranquility Briefs,” she replies.
I laughed, a little too hard. I felt his pain. And still feel it. Are adult diapers a loss of dignity? It Depends as the old joke indicates. I’m familiar with the brand she offers him, Tranquility, purported to be one of the highest quality, most expensive, most absorbent brands you can possible buy. But I refuse to wear them either. Why? They look and feel exactly like fucking baby diapers. They are white, plasticky, and with the same pleats and shapes as baby diapers. An infantilizing way to go for me, a deal breaker. Dignity has its limits.
Depends (brand adult diapers) does a much better job at hiding its diaper-osity. They come in colors! And are fashioned to look a lot like those fucking Nazi briefs I used to wear. But Depends on what? Depends on if you need them? If you need them then there is no depends, you freaking need ‘em. Still I hated very much that I needed them, and had to learn the hard way why they were necessary. You can complain about walkers and canes and stair climbers and lift chairs, and I do complain, believe me, but without them disabled life would be a lot worse. Dignity be damned.
I once imagined an alt dimension, slightly ahead of us in tech, where the people lived underground in pristine, clean subway tunnels, immaculate arcades of shops and apartments. There was no running water or plumbing in this world, everybody just wore a diaper like garment. When the time came, they took it off and popped it into an infrared incinerator then cleaned up quickly by standing at some other tech. Like we take it for granted that indoor plumbing is a natural outgrowth of all societies on Earth and would also be the norm anywhere else as well. But that’s just how we do it, it could have gone a number of other ways in our evolution, and it still does in many parts of the world. Plus you don’t have to go very far back in our history when plumbing was not prevalent and things were not exactly hygenic. I think about this in my new Depends world, because using them, nothing just gets flushed away and forgotten.
When my child was in diapers, we tried different methods of disposal: the Diaper Genie, an interim storage device that was dubious as to its end-use efficiency; or washing the natural cloth diapers that we requested as shower gifts, (yeah, that lasted all of one week), or even a service that would actually come and get the things and leave new ones! After a short time, these all became tiresome. We, like a lot of parents, resorted to just throwing them “away.” We have the luxury of doing this in most of the US: throwing things away and forgetting them until somebody takes it and puts it somewhere else. Then you have been absolved, lightened, made freer, cleaner. I always feel a lot better when I hear the trucks hauling away my garbage in the early hours of the morning.
But until blessed Trash Day I am burdened, undignified for sure, and raging at my dumb body as I wrap up plastic grocery sacks with various disposables, and put them aside until Wednesday morning. It’s a comical scene really, as I shuffle along on my walker, carrying what can only accurately be described as several ugly giant bags of mostly water.
___________
[1] “Home Soil.” Star Trek, The Next Generation, season 1, episode 18, spoken by a crystalline life form. "Ugly giant bags of mostly water!" Picard is confused, and Data indicates it is an accurate description of human physiology. He points out that humans are 90% water surrounded by a flexible container.