She squeezes the sheets in her fists. She wants to pull every strand of hair out of his ungrateful head. Who does he think just wiped up his piss? Who will interrupt every piano lesson this afternoon to suck his mouth dry so the students don’t have to listen to him sputter and gag between notes and worry that he’s dying in the next room? Who is up all hours of the night adjusting his mask so he can breathe? Who does he think washes his bedding and clothes and takes him to his doctor’s appointments? But, otherwise, yeah, he mostly stays out of her hair.
“I’m exhausted.”
“Yuh-firs-les-son is-no-un-til afa-noon. Why-don-you go-ba-to bed?”
“Why don’t you go to hell?”
She drops the pile of bedding on the floor, marches out of the room, and shuts the door behind her. She doesn’t want to see him. He can stay in there until Bill arrives.
Standing in the living room, shaking with fury, she’s unable to decide what to do. She’s too angry to enjoy breakfast and a cup of coffee, too incensed to take a nap, and Grace is still in the shower. Karina stands there, paralyzed in her rage, and wonders what would happen if she stopped helping him. What would happen if the next time he chokes, she doesn’t stop her piano lesson midnote to suction him? At some point, the BiPAP won’t simply be used for the quality of Richard’s sleep. He’ll need it all day and night for adequate ventilation. What happens when they reach that point in one month, in two months, this summer, and his mask comes loose in the night, and she ignores the sound of the BiPAP alarm? What if she awakens the next morning, refreshed from a full night’s sleep, to find Richard with his mask askew, asphyxiated in the den?
She stands in the living room, exhausted, unappreciated, unshowered, and hungry, wondering if she’d be charged with murder if he dies on her watch.
CHAPTER TWENTY
The first half of every piano lesson is devoted to technique—scales in four octaves, Schmitt exercises, chords, and arpeggios—training fingers and ears. The second half is focused on playing the piece of music assigned to the student the previous week. Ideally, the student has practiced twenty minutes a day at home.
This student has not.
Now that he’s finished the technique part of his lesson, Karina waits for Dylan to begin playing, and every minute of waiting increases the temperature of her exasperation. Dylan is thirteen and has probably grown six inches since last year. He’s got long arms and fingers, knobby shoulders and knees, and appears uncomfortable in his own body, as if he hasn’t quite moved into all that new space. Pink, inflamed acne covers his otherwise pale face. A whisper of fuzzy brown hair has sprouted above his lip. He’s wearing bright golden yellow shorts and a matching sweatshirt. His mother will shuttle him to basketball practice immediately after his piano lesson. Every few seconds, he snorts phlegm from somewhere in his throat up into his brain.
“Would you like a tissue?” asks Karina.
“Huh? No, I’m good.”
No, you are not good, she wants to say.
He studies the sheet music in front of him as if reading Greek for the first time. Maybe he has a learning disability or some kind of musical dyslexia or amnesia and she shouldn’t judge him. Or maybe, he simply doesn’t want to be here. That makes both of them. She was up half the night, and sitting on this bench in silence is draining the last drops of her depleted energy. Her eyelids rest shut for a second or two with each blink. She’s desperate for a nap.
Dylan lifts his left hand, but then retreats, placing it back onto his lap. He can’t decide where to put his fingers. He won’t even sample a note unless he’s sure he’s got it right. Millennials. They’re all afraid to make a mistake. Dylan would rather sit on this bench, paralyzed in fear and indecision, than play the wrong note.
If she just tells him, she can end this infuriating stalemate. But she’s not going to. Not today. She provides the answers for this kid every week, and he never learns. She blames his mother. She probably sits next to him while he does his homework and checks his answers, irons his clothes, wakes him up in the morning. The boy is helpless. Well, Karina is done coddling him. She sits and waits and says nothing, letting him sweat it out.
He snorts again as he squints at the music, leaning closer to the sheet of paper, searching for where to put his left hand. She’s given him many bass-clef mnemonics. All Cows Eat Grass, for the spaces. Good Boys Deserve Fudge Always, for the lines. Or, Grizzly Bears Don’t Fly Airplanes. No matter how it’s packaged, he can’t retain it and is forever perplexed by the arrangement of black dots on the five lines and four spaces of the bass clef.
She wishes he’d quit. She’s tired of teaching students who don’t want to play piano. She wishes all of them would quit. Aghast by this reckless thought, by the misfortune she just invited into her life, she crosses her fingers in her lap. How would she keep this roof over her head if that happened? She needs to be more careful about what she thinks.
Dylan snorts again. He shouldn’t be here with a chest cold. If Richard catches it, it could easily lead to pneumonia, and with ALS, that could be the end of him. She thinks about telling Dylan that they need to end the lesson early, but he doesn’t have his license. They’d have to wait for his mother to pick him up, and his half-hour lesson would be done by the time she returns anyway.
The indecipherable music in front of him is Prelude in C by Johann Sebastian Bach. No sharps. No flats. It’s as simple a piece of music as she can imagine that is still lovely to play and hear. The first note is middle C. Granted, the note is written for the left hand, and so it’s on the ledger line above the bass staff and not on the ledger line below the treble staff, as he’s used to seeing it. But still. It’s middle fucking C.
His awkward presence and the even more awkward silence continue to provoke her, itching her hot, weary nerves, making her crazy. She grinds her teeth and breathes impatiently through her nose, suffering in her resistance. She will not tell him what to do. Not one little hint. These kids are handed everything with a pretty little gold bow tied around it. Everyone’s a winner. Everyone gets a trophy. Not on this bench. Welcome to real life, Dylan.
He snorts again, and she wants to scream. Play a note! Blow your nose! Do SOMETHING! On another day, she might blame herself. If only she were a better teacher, more inspiring and encouraging, he’d know how to play this piece. Today, she’s letting him own the blame. They’ll both sit here for the remaining ten minutes in silence if they have to.
She gazes vaguely out the living-room window and notices three birds in the distance, possibly doves, sitting on electrical wires, two on the top line, the third on the wire below them. These round, black birds blur into treble-clef notes that she plays in her desperately bored mind. G-G-E. G-G-E. She begins to compose a piece of music prompted by these avian notes, and her foul mood is somewhat lifted by the sweet melody when Richard’s coughing intrudes. Not the sound she was hoping for.
She listens for the shape and meaning of it and hopes that, like young Dylan here, Richard will work it out on his own. The cough is wet and gurgling, unrelenting. Richard’s abdominal muscles have weakened considerably in the past month, and he often can’t produce a cough effective enough to simply clear his throat. To Dylan, it probably sounds as if someone were drowning in his own spit in the next room, but Karina has grown hardened to these now-familiar noises.
Richard suddenly goes quiet, and it’s the silence between the bursts of choking that she never gets used to, that fill her with dread. She can picture him straining, his body shaking and taut with effort as if he were trying to pull the cough up from his toes, the stringy vessels swelling in his neck, frothy spittle dripping over his mouth. She waits, listening, and she’s reminded of years ago, lying awake in bed, waiting to hear the sound of the front door creaking open after midnight, the sound of Richard’s heavy footsteps in the foyer, the wheels of his carry-on rolling across the hardwood floors. She resented him for being away, and then she immediately hated him for being home. Here he is, back home. And she
still hates him.
If the situation were reversed, if she was sick, and Richard was stuck tending to her, everyone would canonize him. No one makes her feel like a saint for doing this. She feels pathetic, foolish, resentful, and stupid, probably how Dylan feels sitting at her piano for thirty minutes once a week.
Richard coughs again, breaking the silence. He hacks and sputters, obviously fighting for air, and the sound of his failing to clear his throat crawls up Karina’s spine and screeches in her ear. That’s it. She’s had enough.
She stands abruptly, leaving Dylan in his endless confusion over Bach’s impossible notes, and rages into the den. For the briefest moment, she considers the cough-assist machine. But her heart and mind are saturated in a burning-hot soup of hatred, and she can’t take one more minute of any of this. She pulls out one of the two pillows from behind Richard’s head and registers the split-second, wide-eyed recognition in his eyes before she covers them and his entire face. His head moves side to side beneath the pillow but not violently so. Paralyzed, his hands lie still by his side, unable to resist. She presses down harder.
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.
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.