Every Note Played(48)



Yeah, Richard can record movie quotes while he’s having his Liquid Gold dinner. ALS is a blast. Although the technology is cool, it sounds time-consuming, and Richard’s not sure any of this will be worth it. He has only so much time left.

He often checks the time on his laptop and on the TV cable box many times an hour, a vague and persistent dread harassing him, as if he needs to buy something at a store before it closes soon, or he’s increasingly late for an appointment, or he’s waiting for someone to arrive, the doorbell to ring any minute. Yet, he knows that he has nothing to purchase, no appointments to keep, and isn’t expecting the arrival of anyone at the front door other than Karina, home health aides, and therapists. It doesn’t matter. He still checks the time. Over and over and over.

Every minute that goes by is one less minute. But what exactly is he doing with those minutes? If he weren’t in Dr. George’s office right now, he’d be in the den sipping on a coffee milk shake and bingeing on the next season of House of Cards. He’s squandering his minutes, but what else is there for him? He can’t play piano. He can’t teach piano. He can’t even bear to listen to the classical music he loves unless it’s played by Karina.

He looks forward to the moments in her lessons when she takes over. He’ll notice the antecedent extended pause and imagines her student scooting over, Karina positioning herself at the center of the bench. He stops whatever he’s doing when this happens and waits. She begins playing, showing her student how the piece is supposed to sound and feel, developing the student’s ear.

He’ll close his eyes, and he’s transported into the music. He’s traveling with the notes, feeling whatever Karina feels as she plays, as if he were no longer trapped in his prison cage of a body, flying. Listening to Karina play is transcendent, as free as he’s felt since he was diagnosed. He wishes she’d play more, when her students are gone for the day, just for him.

“Aside from voice banking, there are some other communication aids I can offer you. You’ll want this.” Dr. George produces a round red plastic button from one of his desk drawers, something that a clown might pull out of his prop bag. “It’s a simple call button. So, for example, say you’re choking and you can’t call for help, you can step on this call button, and the receiver end will buzz loudly like a doorbell, and so even if Karina is somewhere else in the house, she’ll be alerted. It’s kind of like a baby monitor. This is a great option for you because you’re still walking. So you can get to the button and step on it. You’re lucky you still have your legs.”

While Richard knows he’s lucky to still have use of his legs, and he’s lucky that he can still talk, and he’s lucky he can still breathe, these kinds of comments strike him as both ridiculous and insulting. But he tries not to take offense.

His legs will soon be leaving him. For the past week, he’s felt a long-distance pause between the decision to take a step and stepping, a loosening of body from mind, of muscle from bone, of intent from action. ALS is extending its evil tendrils south.

Maybe he’s just being paranoid. Maybe he’s imagining the weakening in his right leg, creating a somatization. Maybe it’s psychosomatic. His mother used to tell him, If you’re looking for trouble, you’ll find it. That may be true, but he certainly never went looking for ALS. He knew that Lou Gehrig had it, that Stephen Hawking has it, and was peripherally aware of the Ice Bucket Challenge. That was the extent of his knowledge on the subject, and he wasn’t seeking to know more.

Trouble came looking for him. He was diagnosed fourteen months ago, and paralysis from the waist down, one leg at a time, is what comes next, whether he’s a paranoid hypochondriac looking for trouble or not. But for now, he agrees with Dr. George. He’s lucky to still have his legs.

“An-yah-lu-cky you-still-ha-vyah ki-neys.”

Dr. George laughs, a high-pitched, tickled, unguarded giggle. Richard should record it and use that as his banked laugh. He likes Dr. George. He wonders if George might actually be his first name and not his last, if he’s choosing to be addressed with a title that’s less stuffy and more intimate, like Dr. Phil or like an unrelated friend who goes by Uncle instead of Mr. He’s Uncle George.

“You’re also going to want a bunch of these low-tech alphabet boards and flip charts. I know they’re not as sexy as the eye-gaze and Tobii technology, and you’ll get your sexy on eventually, but you’ll use these first, and they’re actually quicker and easier to use. As his voice goes, or maybe later in the day when his energy is low, you’ll want to use these, Karina.”

Dr. George hands her a stack of charts. Richard reads the tabs: In Bed; Comfort; Transfer and Position; Wheelchair; Computer; Bathroom. Karina opens to the In Bed chart. Richard scans the page.

Raise/Lower Head

Take Arm Out of Cover

Raise/Lower Foot of Bed



Hot/Cold

Take off BiPAP

Adjust Mask



Turn on BiPAP

Mouth Dry/Water

TV and Lights Out



Chap Stick

Pee

Nose/Saline



Nose/Wipe

Scratch My Head

Wipe My Eyes



In bed used to mean something entirely different. Karina turns the page before Richard has the chance to absorb every option. She spends only a second or so on each additional chart before flipping, looking overwhelmed and scared.

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