Every Note Played(45)

It takes only about a minute for his head to go still. She waits a bit longer before lifting the pillow. His eyes are open, his pupils fixed in place, uninhabited.

She hears the sound of middle C.

“Is that right?” Dylan asks.

Karina blinks. The doves have taken flight from the electrical wires outside. She turns her head to see Bach’s Prelude in C on the rack and pulls herself fully back into the living room, releasing that sinful, warm chocolate torte of a daydream. She listens as the pleasing tone of middle C fades, and Richard begins coughing in the den.

“Yes, Dylan. That’s right. Congratulations.”

She checks the time on her watch: 4:00. Lesson’s over.





CHAPTER TWENTY-ONE


Grace is sitting at Richard’s desk, slumped and sullen, her body swiveled in the seat so she’s angled toward the door, the way out, instead of facing him squarely. Aside from Karina and Bill and the other aides and doctors who are used to seeing people with ALS, most people choose not to face him directly. He’s gaunt and often drooling, and his arms are lifeless and his voice is messed up. Strangers can tell by the quickest glance, because that’s typically all they’ll stay for, that something is really wrong with that guy. But he understands that, even if he were healthy, facing him is hard for Grace.

He’d been watching Game of Thrones from his easy chair when she knocked on the slightly open door a few minutes ago and asked if she could come in, but she hasn’t said a word since. She’s clearly been sent in against her will, dutifully obeying her mother’s directive. She keeps glancing down at her phone, possibly checking the time, wondering how long will be long enough for her to endure this nonconversation. She’s been in here for three minutes going on eternity. Or maybe she’s reading texts. He can’t tell. She’s leaving for the airport in an hour, going back to school. This is good-bye.

“I-wan-you-to-know, how-eh-va-ex-pen-sih thi-gets, yah-tu-i-sha mo-ney-wo-be tussed. Yah-ed-u-ca-sha issafe.”

“Okay. Thank you.”

Whatever he didn’t give Grace growing up, at least he will have given her this.

“Are there any new drugs coming out soon that might cure it or at least slow it down?” she asks, as if finally remembering something she planned to say.

“I’m-ina-clin-i-ca-tri. May-be-thata-be-a mag-ic-bul-le.”

“Oh, good.”

She seems satisfied and doesn’t inquire any more on the topic. Like most twenty-year-olds, she probably can’t imagine death in any real way. So of course something will save him. And there it is, the solution, the clinical trial drug. Problem solved. She can move on to a safer, more palatable topic. Or return to their mutually uncomfortable silence. Either way, no one’s dying in this room.

Every morning, Bill dissolves the mystery clinical trial pill in water and pushes it through the syringe into Richard’s stomach. He wants to feel some kind of difference when this happens—he can take a deeper breath, his articulation improves, the fasciculations in his tongue subside, he can miraculously wiggle his left thumb. But aside from the quenching cool rush of water filling his belly, he feels nothing.

Maybe he’s in the control group. Or maybe, likely, this isn’t the cure. But he stays in the trial, not because he’s betting on this little white pill. He’s not deluded into thinking modern medicine can save him. He’s already gone too far down the rabbit hole, and he knows it. It’s too late for him to be saved. He’s in the trial because he’s doing his part, contributing this small step in the long march toward the cure.

He figures every single thing that didn’t work before scientists discovered the polio vaccine, for example, was necessary to get them to that cure. How many mistakes did he make in learning to play Chopin’s étude op. 10, no. 3, in learning any masterpiece, before being able to play it flawlessly? On the road leading to any great achievement are a thousand missteps, a thousand more dead ends. Success cannot be born without the life and death of failure.

Someday, scientists will discover a vaccine, a prophylactic, a cure, and people will talk about ALS the way they talk about polio. Parents will tell their children that people used to get something called ALS, and they died from it. It was a horrible disease that paralyzed its victims. Children will vaguely imagine the horror of it for a moment before skipping along to a sunnier topic, fleetingly grateful for a reality that will never include those three letters.

But not yet. Today, there is only one lame excuse for a treatment and no cure, and children like Grace sit in front-row seats, opposite their fathers, witnessing ALS in all its grotesque, unspeakable detail.

Even if, by some miracle, his little white clinical trial pill was the magic bullet, at most it would stop the advancing ALS army from taking over any more territory, arresting the disease where it is. From what he understands, this drug can’t rebuild what has already been destroyed. So he wouldn’t get any worse, but nothing could be reversed. He’d still have two paralyzed arms and hands, a barely intelligible voice, difficulty breathing, a feeding tube, and a right foot that drops and trips him regularly. As much as the prospect of dying in one year freaks him out, a dozen more years of living like this is even more unappealing. It’s downright terrifying if he dwells on it.

He needs a magic pill and a time machine. He’d stop the disease and then go back in time, before ALS stole his hands. And then he’d go back even further, to when Grace was two, when he started touring to play with faraway symphony orchestras; to when Grace was four, when he was traveling to hide from Karina and her discontent; to when Grace was six, and he’d teach her how to tie her shoes and ride a bike, he’d celebrate her 100 percents on spelling tests, he’d read bedtime stories to her and kiss her good-night; to when she was eight, nine, ten. To know his daughter.