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.
But here they are instead, in the den, strangers saying good-bye. They have no time machine and no cure for ALS and no cure for this broken relationship. No supplements can fill all that was lost, no pills can be pushed through his PEG tube to make everything right between them.
She swivels her chair back and forth, back and forth, then stops, her feet planted, as if she’s decided something. It must be time for her to go. She folds her arms around her middle as if she were cold or feeling ill or protecting herself and looks directly at him.
“My whole childhood, I felt like you picked piano over me.”
It’s one thing to house shortcomings and failures within the privacy of his own thoughts; it’s another to hear the words aloud, publicly spoken by another, called out by his daughter. He feels a crashing wave of shame, and then, to his surprise, he’s washed in relief. He holds his daughter’s fierce gaze and feels so proud of her.
“I did.”
Her face reads surprised, and her eyes don’t know where to look. She wasn’t expecting agreement. It’s time to take responsibility, to accept blame, to be the grown-up, to be her father, right now or never. She’s going back to school. He might not have another chance.
He wants to say more, to let her know that while he chose piano over her, he didn’t love piano more. It was just easier for him to love piano than to show his love for her. He was good at piano. What if he wasn’t a good father? What if he was like his father? Piano was consuming, demanding his full attention, his passion, his time. He’d have time for Grace later. And later was always later. This is the biggest regret of his life.
He was a terrible father. He didn’t play a starring or even supporting role in her upbringing. At best, he was an ancillary, recurring character, and now he’s a nonunion extra with no lines. When he’s thought about his legacy, it’s always been about his body of work, the music he’s played and recorded, his piano career. He now sees his real legacy sitting opposite him, his daughter, a beautiful young woman he doesn’t know, and he’s out of time. He likely won’t meet her boyfriend, her husband, her children. He won’t see her graduate college or where she’ll live or what she’ll do. He looks at her pale green eyes, soulful like her mother’s, her long hair pulled back into a ponytail, and realizes that he’s never known her, and now he never will.
Maybe if he’d had more children as he wanted, he would’ve been a different father. Maybe he would’ve made better choices, been more involved. Karina was so capable, so totally committed to mothering Grace, he genuinely felt he wasn’t needed at home. Over time, he felt he wasn’t wanted there either. So he buried his head and dreams in his career and assumed he’d have more chances, that he and Karina would have more children. There would never be any more children. He clenches his jaw, swallows, and holds his breath, but the tears come anyway.
Grace pulls a tissue from the box on the desk, walks over to her father, and wipes the tears from his face and eyes. She returns to her seat and dabs the corners of her own eyes with the same tissue. He gives her a gentle, grateful smile. He wants to give her so much more.
“I have to go.”
“Wi-you-be ba-home-fah spa-ring-brea?”
“I was planning on going to Lake Tahoe with Matt and some friends. But, I dunno, maybe.”
“Tha-souns-fuh. You-sha-do-tha.”
“I’ll probably be here for a weekend in March. I’ll definitely be home for the summer.”
“O-kay.”
“See you then.”
“See-you-then.”
She stands, walks over to him, and with her hand on his shoulder, kisses him on the forehead.
“Bye, Dad.”
As she leaves the room, he wants to reach out and touch her, to wrap his arms around her and hug her tight, to show her with touch what he can’t seem to execute in words, but his hands are even more useless than his voice. He’s plagued with regret and the inability to articulate the apology he wants to give her because of the sweeping scope of it, because his voice production is so damn slow and there are too many and not enough words, because he’s entirely unpracticed with this kind of conversation. As she leaves the room, he thinks about the story of his own father—the one he’s carried his entire adult life, heavy and cumbersome and painful—and wonders what story Grace carries about him. When her boyfriend asks, “What’s your dad like?,” what is her answer? How heavy and cumbersome and painful is her story?