Every Note Played

by Lisa Genova

  It’s not all his fault.

  She blames him for everything.

  She lied about everything.

  She would say that he betrayed her first.

  Cold and wishing for a fleece for the past couple of hours, he’s now running hot. Sweat is soaking his undershirt beneath his paralyzed armpits. He feels shaken, disturbed, as if he needs to sit down or leave the house, but instead he stays pinned to the open door.

  Karina’s playing stops, and now it’s the student’s turn with “Rondo alla Turca.” Nothing about it is sweet or lighthearted. He’s reminded of Grace reading aloud when she was five or six, stammering through each syllable of Frog and Toad, despairing several times a page, losing any hope of comprehension as every ounce of focus was drilled into the effort of microscopically sounding out the letters. A joyless experience. Except he loves Grace. He hates this student.

  He shouldn’t do that. He shouldn’t hate this poor student. But a poisonous black hate lives inside him, and his hatred needs a subject. The easy choice would be ALS, but ALS doesn’t have a face or a voice or a heartbeat. It’s hard to hate something that isn’t human.

  He hates Karina. Her excuses. Her lies.

  He hates himself. His selfishness. His infidelities.

  Why does a forty-five-year-old concert pianist have ALS? Maybe it has something to do with karma. Maybe his ALS is retribution for something he did equally horrendous in magnitude. Or maybe it’s because of what she did. Maybe his ALS is punishment for their mutual sins.

  Or, strangely, maybe ALS is their chance to make amends. If they admit where they’d been wrong and apologize for all the hurt they caused each other and are forgiven, if they settle their bad karmic debt in this other way, maybe he’d be cured. Or, if not cured, maybe healed in some way. For both of them. He realizes that this kind of mystical wondering is akin to wishing on a star, praying to God, or believing in the prophecies of a Magic 8 Ball.

  But why not try?

  He pulls the door shut with his foot. He can’t tolerate one more second of listening to this wretched piano lesson. And he’d rather go on hating Karina and himself than answer that why.

  CHAPTER FIFTEEN

  From his reclining chair in the den, Richard can hear Karina singing “Baby, It’s Cold Outside.” She’s been in the kitchen all day preparing for Wigilia, a traditional twelve-dish Polish supper served on Christmas Eve, her favorite day of the year. She’s been singing and cooking since early morning, determined to enjoy this day even if no one else at 450 Walnut Street will join her. Or maybe she’s hoping that her dogged cheerfulness might hitch a ride with the velvety smells of cooked onions, garlic, ginger, and yeasty dough permeating the house and infect her daughter and ex-husband.

  As far as Richard knows, Grace has always helped her mother cook for Wigilia. They wear matching red aprons. Grace specializes in baking the makowiec, a sumptuous poppy-seed rolled cake. They’re an adorable team, singing and chatting while preparing this special feast from scratch.

  Not this year.

  Grace has been holed up in her room since walking through the front door two days ago. Her muttered excuses for reclusion have so far included exhaustion, headache, and reading. Every now and then, Richard hears the water running in the pipes overhead, so he knows she’s in the bathroom above the den. She came downstairs a couple of hours ago for a wordless visit to the kitchen, probably to grab some food to go, and scurried back to her cave. It’s now 6:00 p.m., and she’s still up there.

  He and Karina agonized over how much to tell Grace before she came home for Christmas break. Karina didn’t want to risk distracting her from her studies and cause her to bomb her finals, but Richard didn’t want her to come home to his ALS with absolutely no warning. There was no good choice here. They compromised. Since Karina’s voice doesn’t sound like Siri on a bender, she called Grace and gave her a hint of what she’d be coming home to.

  Just wanted to let you know, your dad is living here back at the house. . . . No, we’re not getting back together. He needed some help, so he’s staying here for a while. . . . I’m not crazy. . . . It’s fine. We’ll talk about it when you get home.

  He keeps replaying the shock on Grace’s face at the first sight of him. It was more than the simple discomfort of seeing her divorced, estranged father living back at the house. That would’ve been mind spinning enough. It was his ALS—his slumped, hanging, lifeless arms; his slurry, monotone voice; his emaciated frame. He’s had a year to get used to this creeping metamorphosis. He adjusts to each incremental loss, each distortion along the way, and so when he looks in the mirror or hears the sound of his voice, he usually notices only the most recent change. He registers the difference from ninety-nine to one hundred and adapts to it. He doesn’t have to start from zero with every new symptom, every pound or consonant lost. He mostly still sees and hears himself. Every week, a new normal.

  But Grace hadn’t seen him since before he was diagnosed. He watched her absorb the entire transformation, from zero to one hundred, in less than a second, and the stunned impact on her face made him breathless, horrified to be the source of it. She averted her eyes and forced a soft hello. Stiff and mute, she endured their carefully planned introduction to ALS 101. Then, without a word, she withdrew to her room.

  Karina announces that supper is ready. Richard emerges from his room, and Grace materializes, hovering at the edge of the dining room like a nervous rabbit about to dart. Karina calls her into the kitchen. Alone in the dining room, Richard sits at the head of the table, where he sat for holidays and dinner parties for thirteen years, but instead of feeling familiar, it feels strange, unsettling, wrong. The dining room is exactly as he remembers—same oak table and ivory slip-covered chairs, same crystal chandelier, same silver and china, same mint-and-copper-colored abstract oil painting on the wall. Everything is the same.

  But he couldn’t be more different. He’s an ex-husband, an ALS patient, a former concert pianist. In this chair, he’s an interloper, an uninvited guest, a walk-on assuming a starring role. As is Polish tradition, Karina has included an additional place setting for an unexpected visitor, someone who might be lost in the night and needing a meal. Richard stands and changes seats. There. Far more suitable.

  Karina and Grace shuttle in and out of the dining room, making several trips, transporting plates and platters and bowls and serving spoons while Richard sits and watches like a powerless king. The table fills up with colors and smells and memories. Barszcz—a tangy bright red beetroot soup. Uszka—little ear-shaped pastas filled with sautéed wild mushrooms. Pierogi, braised sauerkraut, herring in sour cream. Twelve dishes in all. A splendid feast before him.

  Returning from her last trip to the kitchen, Karina pauses, noting without objection that Richard has changed seats, then places a vanilla ice-cream milk shake smack in the middle of his plate. She sits, recites a quick prayer, blessing them for the upcoming year, then breaks off a piece of bread from a loaf instead of using a traditional wafer and passes the loaf to Grace. Grace does not pass the loaf to Richard. Karina and Grace begin eating this decadent meal, and Richard sips his shake.

  Although he’s still capable of eating certain soft foods such as mashed potatoes and macaroni and cheese, and he could certainly handle the soup and pasta on the table tonight, he can’t stand being fed. He’s tried it, gone along with the song and dance a few times with various home health aides. He wore the bib and opened wide. It made him feel helpless, emasculated, infantile. He quickly put a stop to it, trading beloved flavors and textures and favorite foods that require forks and spoons for the rather limited menu of drinkable soups, smoothies, and shakes. He’s losing control of his muscles, his independence, his life. While he still can, he’s going to feed himself.

  So he sips his vanilla shake while watching Grace and Karina eat Wigilia supper in front of him, annoyed that Karina didn’t think to offer him the beetroot soup in a glass with a straw. He’s too stubborn, too stupidly offended, to a
sk. Instead, he keys into the sights and sounds of them eating—the clinking of the silverware against the china, Karina slurping the soup off her spoon, steaming bowls being passed, Grace chewing with her mouth open. The entire sensory experience—every festive, forbidden molecule of it—disgusts him. Even Bing Crosby singing “White Christmas” is a personal affront.

  No one is talking. Naturally chatty, Grace hasn’t offered a single word. Silence has always been the cloak she wears to conceal her anger or fear. She’s shoveling one forkful after another into her mouth, clearing her plate as if she were in a race, gunning for first prize. She’s done before Bing Crosby finishes his song. She pushes back her chair, stacks her soup bowl onto her plate, and stands, on her way to the kitchen.

  “Hold on there,” says Karina. “You’re not excused from the table.”

  “Why not? I’m done.”

  “You didn’t have any piernik or makowiec.”

  “I don’t want any piernik or makowiec.”

  Grace loves piernik and makowiec. So does Richard.

  “Fine, then sit and keep us company. Wigilia isn’t over.”

  Grace relents and sits but doesn’t add any dessert to her plate. Richard catches her stealing fast, microscopic glances at him, as if looking directly at him for more than a moment might be dangerous. It’s one thing to read about ALS on the Internet, as he assumes she’s been doing up in her room over the past two days, it’s quite another to sit across the table from it, a plate of piernik and a couple of flickering candles away, to witness it live and in the flesh, residing in her father.

  “How were your finals?” Karina asks.

  “Terrible.”

  “Oh no, why?”

  “I didn’t study because I was too busy reading about ALS.”

  Richard and Karina turn to each other, stunned.

  “But how—”

  “You tell me Dad is back living with you, and you won’t tell me why? I texted Hannah Chu and told her how freaky this was, and she told me.”

  “I’m sorry, honey—”

  “So Hannah Chu and God knows who else already knew that my father had ALS, and I didn’t. Glad I’m part of this family or whatever you want to call this.”

  “We didn’t want to tell you before finals for that very reason.”

  “This didn’t happen overnight. Why didn’t you tell me sooner?”

  “I didn’t know myself until recently,” says Karina.

  She’s known since July if not before. Always deflecting blame, always right, always innocent. Richard wants to pounce on this lie, argue the facts and for once expose Karina in front of Grace, but his voice is too slow to produce to jump in, and he lets it be.

  “What about you?” asks Grace, addressing her father for the first time. “Why didn’t you tell me about this?”

  He was diagnosed just before Christmas last year. He didn’t want to ruin Grace’s holiday with his grim news. Then full denial set in. He couldn’t have even whispered, alone in his condo with no one to hear him, that he had ALS, never mind speak the three letters aloud to his only child. He continued to tour, pretending everything was fine, and didn’t reveal his diagnosis to Trevor for three more months. Shortly after, his right hand weakened further—threatening his playing, his reputation, his life—and the jig was up. Still, he didn’t announce his disease to the world. Trevor hid it behind the guise of tendinitis for a while. So at first, keeping the news from Grace wasn’t personal.

  Then it was. He was afraid of giving her yet one more reason to push him away, that she might reject him so completely that they’d never have a chance to recover. Before ALS, he had no idea how to make things right between them, if it was even possible. Admittedly, he was lazy and figured they had time. And now he has ALS, and they don’t have twenty years of therapy or living to sort it all out, and he still has no idea how to make things right. He’s not off to a good start.

  “I tried to, many times. It’s hard. You had finals and then the second semester of your first year of college. I didn’t want to ruin this exciting time in your life.”

  “Don’t worry, you won’t.”

  Born loyal to her mother, Grace has always blamed Richard for Karina’s unhappiness and the divorce. As she sits across from him, arms crossed, eyes glaring, Richard sees an additional edge to Grace’s anger, one that has probably been there for years, but that he’d never noticed until just now. Betrayal.

  Every time Richard cheated on Karina, he was also cheating on Grace. He repeats this theory in his mind, chewing on it like a fresh stick of gum. It’s one thing to have missed Grace’s Saturday soccer game or Sunday dinner or an awards night at school because he had a concert in Miami. It’s another to have missed those things because he chose to linger in Miami with a woman whose name he can no longer remember. Grace spent much of her childhood without a father at home, and some of those days and nights were because of his various infidelities. So in that sense, he cheated on Grace, too.

  He looks at his daughter, who has always so closely resembled her mother with her wide-set green eyes and espresso-brown hair, and sees resentment in those green eyes, defiance in her strong jaw, her mouth a weapon. He sees himself in his daughter’s face, and his heart aches. Neither of them got the father they wanted.

  “So what happens next?” Grace asks.

  Barring any special weekend trips or time off, Grace won’t be home again until the end of March, if she doesn’t go to Daytona Beach or Key West or wherever college kids go these days for spring break. Three more months. Any number of depressing changes could transpire in that time, changes that could necessitate a feeding tube, a BiPAP, a wheelchair, eye-gaze communication, a trach tube and invasive ventilation. Hopefully, he won’t be dead.

  “I don’t know.”

  Both the ultimate certainty and immediate uncertainty of Richard’s future, imaginable and unimaginable, hang in the air over Wigilia supper. No one says a word, and no one eats. The last track of the Bing Crosby Christmas album ends. The room is silent. Richard examines the uneaten meal on the table, the comfort food Grace has refused, refusing to be comforted, the twelve dishes Karina cooked from scratch by herself, recipes handed down from her parents and grandparents. He focuses on the untouched makowiec—a sweet poppy-seed cake, his favorite—and decides to take a risk.

  “Karina, would you please feed me a bite or two of the makowiec?”

  She doesn’t react at all at first, her blank face not seeming to comprehend his request. He’s never asked her to feed him. Apprehension fills her eyes as she registers his question.

  “I don’t know. Is that allowed?”

  “Just a couple small bites. I’ll wash them down with milk shake. It’s not Wigilia without makowiec.”

  That won her. Karina’s a sucker for tradition. Still unsure, she cuts a thin slice of the cake and sets it onto Richard’s plate. She then sits in the empty chair next to Richard and faces him. She pinches off a small piece of cake between her thumb and finger, barely the size of a corn kernel, and holds it up.

  “I’m not a bird. A real bite, please.”

  Still uncertain, she takes an unused fork from the unexpected guest’s place setting and cuts a modest helping of cake. She makes eye contact with Richard and gingerly sends the piece of makowiec into his open mouth.

  Richard closes his lips and lets the cake sit on his tongue. If his taste buds could weep with joy, they would. His mouth is watering, so maybe they are. The moist cake, the sour cream and butter, the sweet honey, a hint of lemon, the bumpy poppy seeds. He chews. He chews! He can’t remember the last time he chewed. It might’ve been a bagel. Whatever food it was, it wasn’t memorable. This cake is divine, every taste and texture swirling through his mouth a scrumptious celebration.

  Once he’s mashed this small bite of heaven into a liquid paste that could be sucked through a straw like a smoothie, he begins consciously swallowing. No problem. He sticks his tongue out like a child to prove that it’s gone.

&
nbsp; He raises his eyebrows and tips his head toward the plate. Karina loads up another forkful. Richard opens his mouth, and she feeds him. They stay connected through eye contact as he chews, Karina vigilantly searching for any issues, Richard wordlessly letting her know that he’s all right.

  He clears that bite and asks for another. As he chews, he looks into Karina’s unwavering green eyes, and the cruel awkwardness and pity he dreaded in being fed by her in particular isn’t there. Instead, a gentle intimacy, a quiet tenderness passes between them that he never expected. After the next bite, she wipes his bottom lip with a napkin, and he feels appreciative instead of ashamed. She smiles. He wishes he hadn’t sworn off being fed so many months ago and is imagining all the delicious chewable meals and lovely moments he’s unnecessarily forgone when he begins to choke.

  Maybe he got a little cocky. Maybe he was distracted by the unexpected connection with Karina. He inadvertently moved the bolus of cake to the back of his mouth before it was entirely pureed, triggering the swallowing reflex before he was ready. He doesn’t know if he panicked first and caused the problem, or if a piece of cake went down the wrong pipe and caused him to panic, but he’s got a hunk of gooey makowiec paste stuck in his windpipe, and he can’t breathe.

  Worse, because his abdominal muscles and diaphragm are weak, he can’t produce the simple cough a normal person could to blast the gob of food out of there. His eyes bulge wide-open, unblinking, and Karina stares back, terrified but unmoving, paralyzed. He’s straining every muscle and vein in his neck, trying desperately to cough, to breathe, to yell for help, silently choking.

  “Mom!” Grace screams, waking her mother into action.

  Karina starts pounding on his back with the heel of her hand as if he were bongo drum. It’s not working. He envisions the half-chewed lump of cake as a wet concrete stopper in his trachea. He looks across the table at Grace, who appears fuzzy and scared through his watery eyes.