ALS Diary (part 51): The Little Delights of Daily Living.

“He wanted to live in his wealth of minutes, the ones he had left anyhow.”

said of the retired Irish detective Tom Kettle in Sebastian Barry’s Old God’s Time

What are the little delights of daily living? I can’t say that they include food. I do get hungry and I retain my sense of taste. But there is no pleasure in eating. Foods I long for are tedious and boring in the eating. I have lost my taste for alcohol or sweets.

Walking, which has given me pleasure throughout life, is no longer possible. I watch others saunter along as if they were circus acrobats carrying out daredevil stunts. It really is a complicated operation, walking down a street or up a flight of stairs. I barely have enough strength in my legs to rise from a chair and I have no sense of balance at all. Taking even a dozen steps is an ordeal that exhausts me.

A good night’s sleep is always a source of pleasure, and I get quite a few of them. Getting up to my coffee and newspaper feels good. I like to get a slow start on a slow day. Too many slow days are a guilty pleasure. A good day at the YMCA is pleasant: the lap swim, the walk against the current in the therapeutic pool, the baking oven of the sauna. After that, the struggle to get my legs into my pants and my feet into my socks and shoes. Always an ordeal, always finally triumphant. Then a chat with my friends and then home to relax and find some dinner.

Evenings, I lie on the sofa with my laptop and watch some foreign language series and exchange notes about them with Laura. With her pitch-perfect linguist’s ear, she amazes me with her observations about languages she knows or doesn’t know. Meanwhile, my simple comments about themes and narrative structures impress her as insights of genius. It’s a mutual admiration society which only gets discordant when each furiously insists that, No! the other is the smarter one!

A young guy, a friend of Pancake’s, stopped by for a visit. Ethan Kirk is eager for knowledge and open-hearted in conversation, so I am a little surprised that he wrote after the visit that he has always suffered from “social anxiety.” That’s me. It brings me to the topic of Sebastian Barry’s old detective. He is likewise insecure and like me slightly befuddled. Unlike the typical detective, but again like me, he sees the best in every younger person and craves their friendship. That’s a new twist: an insecure kindly old cop. Only in Ireland!

So I really do identify with old Tom Kettle. He’s no hard-boiled noir whiskey slugger, but a man quietly devoted to his beloved wife and children, whom he tragically loses one by one in a concatenation set off by a horrid abuse inflicted long-ago. The memories in his case are interchangeable with his ghosts. Mine come to me always with this question: How did the remembered moments relate to my social anxiety and existential insecurity? Did I rise above it? How guilty am I? Was I always me or have I been transformed by life? I suppose that my questions and doubts were at root the same, while the answers were only more or less satisfying. Same questions. Changing answers. Constant in changing. Revolving around the same root of insecurity.


Have you indulged this bit of whimsy? I mean trying to imagine your life, or an episode in your life, as a movie. It’s reflexive self-embellishment and self-magnification. It’s an attempt to attribute meaning to our lives. Your life as a movie evokes the cinematic enhancements of music and camera focus which convey meaning on the screen. Your life as a movie implies being seen and admired. Now, this fantasy is realized by online influencers and all the narcissists who seek and confer online applause. Before cinema and the Internet, narcissism looked for confirmation in words and mirrors, in self-presentation and feedback, in the tombstone epitaph or the newspaper obituary.

Few of my memories come in cinematic format. But I can think of the odd exception. As a child, I took our moves from place to place in stride. Now I realize that one of my earliest discrete recollections reflects our frequent moves: it was almost like a tacit interpretation of our residential instability. Cinematic treatment requires the special moment of the epiphany, the momentous moment that stands out in memory, but for that very reason accumulates layers of interpretation and editing. With that caveat, I want to claim one such moment pregnant with meaning. I believe that I can vouch for its veracity. It was my first day of kindergarten. We lived in a suburb of Tulsa, Oklahoma. I remember Tulsa in more detail than previous residences of Danville, Illinois, Dallas, Texas, and Houma, Louisiana. My father’s engineering work was responsible for our family’s frequent moves in response to the needs of the oil industry. It’s likely that a child would register the attendant uncertainty of such moves.

I don’t remember reacting when my mother dropped me off for the couple of hours of my first day of kindergarten; but I vividly remember the game we were introduced to: musical chairs. I remember my consternation at the prospect of a zero-sum exercise with each terrifying round of concentration and scrambling for one of the ever-diminishing seats in the game. What a horror! Your new playmates are your competitors, each seeking to humiliate the others. It taught the lesson that what you have comes at the cost of someone else being left out. I’m not going to claim that I presciently recognized that this was my future and the essence of capitalism; but in fact, a child is typically so caught up in the moment that it can’t help feeling: “so this is what I’m in for in this world that I’ve been thrown into.” I don’t think that any sensitive child would react differently. Not unless you were the pushy type who gloried in shoving your way to victory. Perhaps one path to inner relief lies in identifying with the pushy bully. Perhaps this is the deeper source of Trump’s resilient popularity as the guy who never admits defeat. Conversely, aren’t there those who prefer the companionship of the losers? Is this why I sympathize with the underdogs and react philosophically to my fate after drawing the losing cards of cancer and now ALS? I at least know that I’m not alone.


After a better-than-usual lap swim on Friday and a pleasant lunch on Saturday with Laura and her partner Jenny, I am somewhat dismayed by the frequent cramps and constant aching in my forearms and fingers. It’s not the first symptom in that part of my body but these aches and cramps, I fear, are telling me something I don’t want to know. On Sunday, some bad news not unexpected: Laura’s father passed away in the early morning. After a failed treatment for leukemia, he has been in hospice care for some time. I hope I can maintain his calm dignity.

Signed,

Andrew (Weeks)

Published by pfannkuchea

A graduate student at the University of Luxembourg, I study the French Third Republic and liberalism more generally.

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