It’s like I can’t get settled, can’t get my mind right. We’re going on three days now. I’ve been getting my A1S1S1 handed to me lately but I still eagerly anticipate the little red notifier that tells me it’s my turn. When it is my turn, that is how I wake up, that is how I go to sleep. Lunch breaks, fifteen’s, post-prandial settling of the pizza in the tummy, I’m holding my phone, in battle.
This morning I watched television and drank coffee that I made myself and petted the dog and played with the dog and picked up the dog’s poop. I took a shower and washed my own head with my own hands. I saw we still had blueberries for my cereal and my little heart leapt with excitement. It was one of those too-rare moments where I felt my privilege and relished in it and allowed it permission to make me happy. I am an American male on his day off with blueberries. I am lucky, therefore.
But it has taken me until 2:30 to start writing and I only have until about five or so to finish my day because we’ve got a dinner thing and it’s the lack of Scrabble with my Scrabble lifemate Ben, my brother-in-law with ALS, that’s making me feel just off my game. I suspect that knowing he is playing makes my days ignorable. I can fast-forward them. Quick shower, rote breakfast, dog in cage, let’s roll. Pause the world outside and let’s get some writing done. When I know he can’t play, because the Facebook gods are not smiling on the Scrabble app on this day, and it won’t load, and there’s nothing he can do to fix it, I am out of sorts. I alternate between a zoned-out empathy and a hyperawareness of my own presence and action in the world.
When I think about ALS and how it should be represented in print, what the message ought to be when I write about it, my first instinct is the empathy thing, like put yourself in them shoes, or socks more likely as the disease plunders on. Just think about that for a while, and then think about it… without Scrabble. Read my words and think about it, you fuckers! But I stood in the shower today and slammed the remnants of the tea tree and mint conditioner out of the bottle with the base of my palm and ran my fingers through my hair, and the hot water rinse, oh oops hot water in my face well I can lean forward just a touch and stop that, and then the man-smelling body wash dabbed into the palm, and this is something I can do everyday, if I’m motivated and hygienic. This is a process I can do for myself, by myself. I am allowed alone time. I can be productive to at least this extent. I am lucky again.
I know that Ben doesn’t get these opportunities anymore, and it sucks and is something I’ve been dealing with comprehending on an accurate level for a long while, let alone empathizing with, and I’ve written about this publicly and privately to ad a fair degree of nauseum. But I don’t think I’ll ever get it, I’ll never achieve that understanding, I’ll never put on those socks. Scrabble, though. When we’re playing Scrabble, I can at least imagine we’re on the level. I am doing nothing but staring and thinking. I have been put in my place by his last move, more than often. My one hope, as I sit and stare and think and stare some more, my sole motivating factor is to use my seven letters to throttle him and his feeble mind. I want to make him regret literacy. I will throw a word-dagger into his heart and laugh as he is brought grovelling and bleeding to the temple of my almighty intellect. I want him to know failure like an unfortunate lover, have nightmares about my triple-word scores, and look on with piercing envy as I accept my latest victory with a casual shrug, because, pff, that’s what was supposed to happen anyway. You have earned my pity once again. I suppose, sure, if you want to, we can play one more time.
If Ben’s playing, looking at the board, thinking, staring, I know his competitive nature is wishing me similar harm, and there is some sort of balance. If Ben’s not playing… then what? Like I don’t know what I would do if I were one of those seated chumps playing one of the seven simultaneous games they always show chess champions playing, except the champion is always standing up, walking around, move here, next board, move here, castle me!, move, check, move, double-check, triple-check-and-mate. I can’t imagine playing against an empty chair, with no opposing mind to lean my mind against – how is that fair? The other player is bound to topple over. There’s no balance possible.
When Ben isn’t playing, what do I have to lean on? For that matter, what does he? How is he filling his day?
I only can say with certainty that I know he’s not washing his hair.