by Lisa Genova
CHAPTER SIX
In the languid, not-quite-conscious moments before Richard opens his eyes, newly familiar black notes dance across crisp white sheets of paper behind his lids. He hears the sound of the notes as his mind sees them, ascending arpeggios that call him like a siren to his bench. He opens his eyes. A ribbon of bright white light slices through the midline of the drawn heavy drapes of his bedroom. Another day.
He instructs the fingers of his left hand to play scales on the fitted white sheet, his morning ritual. His daily exam. He studies this symphony of simple movement, the sequential, rapid lift and drop of each finger like a sewing-machine needle, the machinery of tendons, knuckles, veins, and muscle, no less miraculous and essential to him than his beating heart.
Satisfied, he gets up, pees, and walks into the kitchen to prepare breakfast, resisting the impatient pull of his Steinway for the moment. Sitting naked at the kitchen-island counter, he sips hot coffee through a straw while vaguely studying his feet. He commands his toes to wiggle. They comply. Bending his neck and curling his upper torso down, he stretches his lips to meet a powdered doughnut in his hand. His left shoulder has started to lock, limiting the vertical mobility of his arm. He tries not to dwell on the advancing paralysis that this new symptom likely predicts. Maybe the disease will stop there, in his left shoulder. He could live with that.
As he alternates between doughnut and coffee, he allows his thoughts to peer down the rabbit hole and imagines the impact if this disease doesn’t stop there. He pans around the room, his field of view narrowed like a series of close-up shots in a horror movie—the cabinet knobs (most already out of reach), the coffeemaker, the sink, the refrigerator-door handle, the light switches, his phone, his computer. His piano. He’ll have two paralyzed arms. No hands. He won’t be able to feed himself, scratch his head, wipe his ass. He stares at his piano as he sucks up the last drops of coffee. Maybe the disease will stop in his shoulder.
Finished with coffee and doughnut, he wants to lick clean the dusty white sugar covering his fingertips but instead wipes it onto the bare skin of his thigh. He’ll continue brewing coffee throughout the day, but only for the invigorating aroma it diffuses throughout his home. More than a cup gives him the shakes.
Done with breakfast, he showers, bending over to shampoo his hair, in and out before the bathroom mirror fogs. He examines his furry face at the vanity. It’s been almost two weeks since he last shaved. He can still adequately manage the job with his left hand, but he hasn’t felt like bothering. Maybe he’ll shave today.
Although he’s right-handed, a life at the piano has made him essentially ambidextrous. He feels so lucky. He smiles. But his smile in the mirror is dressed in a beard he doesn’t want, and he thinks of all the people in the world with two healthy, functional hands and clean-shaven faces who don’t have ALS, and his mind mocks him for feeling fortunate. His smile is a betrayal of his grim reality, a Pollyanna fool’s mission. What do you have to smile about? Shamed, he stops. His closed-lipped face is somber, serious, covered in black hair, a bit menacing, a much more appropriate portrayal of a forty-five-year-old man with a fatal neuromuscular disease. He decides to keep the beard.
He stands before his closet, demoralized by so many sleeves and buttons, and considers not dressing at all. But then he remembers what he’s ready to play, and inspired, he goes in the completely opposite sartorial direction. He pulls out his best tuxedo.
Socks and trousers are challenging but doable. Lace-up shoes are history. He slides his feet into patent-leather loafers. Now the top half. His eyes fill with sinking dread as he hopelessly puzzles over the pleated shirt, the waistcoat, the cuff links, the bow tie. To hell with all that. He threads his tuxedo-jacket sleeve over his lifeless right arm and buttons a single button over his bare-chested body with relative ease. There. Ready to perform.
Being mathematically minded, he’d assumed that playing the piano with one hand would be at most only half as satisfying as with two, but he was 100 percent wrong. For the past three days, he’s been rapt and obsessed with Maurice Ravel’s Piano Concerto for the Left Hand. It’s about a fifteen-minute piece played alone, eighteen with a whole orchestra, a single movement originally composed for Austrian pianist Paul Wittgenstein, who lost his right arm in World War I.
Richard sits tall at his bench, places his right hand on his lap, and turns the sheet music over, hiding the notes. He’ll play it this time from memory. He positions his left hand on the keys and waits. He imagines an audience of several hundred in his living room, the conductor and orchestra in his kitchen.
The concerto begins immersed in darkness, a foreboding storm in the bass and tenor registers, the solemn contrabassoon, the thundering drums. Richard’s solo begins about a minute and a half in. His hand climbs the scales, lifting everyone out of the sinister storm, evoking visions of shimmering sunlight. His left fingers have full command over all eighty-eight keys, traversing from hell to heaven, the piece richly embodied with one hand.
His concentration is fiercely devoted to every note, yet he isn’t thinking. He’s been practicing Ravel for nine hours a day, and now the music is pulsing inside him, the memory of every sharp and rest and staccato encoded in the muscles of his hand as well as his mind. He can’t tell if his eyes are directing his fingers or following them, witnessing. He’s reached that magical part of the curve where he’s no longer playing the music. The music is playing him.
He hears the whimsical cat-and-mouse game, the call-and-answer conversation between the music he’s creating and his mind’s rendition of the strings and horns. The song now ascends into hopeful possibility, each note and imagined marching drumbeat reaching toward triumphant ecstasy. Closer and faster without rushing, a crescendo that vibrates and steadily rises in his body like the expectation of certain orgasm, he plays along with the imagined massive orchestra, louder, closer, higher, finally ending all at once, like the dramatic climax of an epic film, in heroic victory.
And with that last resonating note, the victory is his. He looks to the darkened living room, the shades still drawn, adrenaline dancing through his heart as he receives the applause, the audience rising in a standing ovation. He turns to the kitchen to acknowledge the orchestra and thank the conductor. He stands and bows to the couch.
In the stark silence of his apartment, the experience of Ravel’s concerto exciting his soul, he imagines taking this performance to a real venue with a real orchestra. He could do this. He could tour this piece as a guest with symphonies the world over. Of course he could. His career isn’t over. His agent is going to love this.
He sits back at his bench, readying to play it again. He positions his left hand on the keys, but instead of hearing the orchestra begin in his mind’s ear, he hears only the oppressive silence of his empty apartment and a voice in his head, an arrogant naysayer stealing his confidence, talking him out of this pathetic plan.
Richard lifts his left arm straight out in front of him. It begins to tremor just below shoulder height. He tries to will it higher, recruiting every muscle fiber he can conjure to the job, but his arm won’t budge any farther. Exhausted, he lowers his hand back onto the piano keys.
Instead of beginning his solo, in opposition to the overbearing silence and the voice in his head, he plays a single note, D, with his pinkie. He holds the key and the foot pedal down, listening to the singular sound, bold and three-dimensional at first, then drifting, dispersing, fragile, decaying. He inhales. The smell of coffee lingers. He listens. The note is gone.
Every note played is a life and death.
Maybe the disease will stay in his shoulder. The voice in his head knows better and insists on another peek down the rabbit hole. No hands.
Richard leaves the piano. He retreats to his bedroom, undresses, and crawls back into bed. He does not call his agent. He lies on his back, staring at the ceiling, wishing he could stop time, hiding from his future, knowing without any doubt or hope that someday soon he won’t simply be peeki
ng down that rabbit hole.
He’s going to live and die in there.
CHAPTER SEVEN
Alone in a cheerless examining room, Richard waits for Kathy DeVillo. It’s the beginning of October, and this is the fourth time he’s waited in a similarly impersonal room for her, the first instance almost a year ago. Kathy is the nurse-practitioner overseeing his medical care at the ALS clinic. Care is the term they use here, and Richard doesn’t openly object, but care is not what’s provided every three months when he comes for his appointment. The staff all mean well. He has no doubt of this. Kathy is nice and clearly cares about her job and him. But as an ALS care coordinator, her pockets contain little more than tongue depressors.
These clinic visits primarily amount to data collection, a chronicling of worsening symptoms indicative of disease progression. Every three months, the losses are noticeable, significant, and Kathy and others record these losses in various charts. Each clinic day is a Q&A series aimed at measuring what has gone from bad to worse. Kathy will offer some practical strategies for coping, some sympathetic nodding, and a preview of coming attractions: You think this is bad, wait till you see what’s next! His neurologist might adjust the dosage of Rilutek. He might not.
It takes at least three hours to do all the measuring, and by the end of every clinic day, Richard’s morale is battered and defeated. He swears he won’t come back. What’s the point? Given that he has only a limited number of hours left as an animated being on this planet, to squander any of them sitting still in this room with Kathy, or waiting for Kathy as the case may be, feels like an egregious injustice or at least utterly irresponsible. Yet, he comes. He does as he’s told, which surprises him, as passive obedience isn’t at all consistent with his character.
If he had to put his soon-to-be-paralyzed left finger on it, he’d admit that he dutifully comes to each clinic appointment because he still has hope. Maybe there will be a breakthrough, a new clinical trial drug, something to slow it down, a cure. It could happen. What were the odds that a boy raised to devote his time equally between football, tractors, and Bud Light in rural “Live Free or Die” New Hampshire would grow up to be a world-renowned concert pianist? Probably the same as some scientist discovering the cure for ALS. It could happen. So he waits for Kathy.
She finally enters the room, pink faced and out of breath, as if she'd just jogged over from another wing of the hospital. She’s wearing tortoiseshell glasses, a black knit sweater unbuttoned over an untucked white blouse, pants that are too short for her, and flat shoes fit for running the halls of the hospital, her look more librarian than nurse. She washes her hands while saying hello, then settles into the chair opposite Richard and reads his record of decline from three months ago, his new baseline, the treacherous edge from which he’ll now cliff dive.
She looks up at him and raises her eyebrows. “Where’s Maxine?”
“No longer together.”
“Oh, I’m so sorry.”
“That’s okay.”
With the exception of Maxine, Richard’s relationships with women had about the same shelf life as a carton of milk. Most met him after a performance, at a VIP cocktail party or charity fund-raiser, starstruck and fascinated. They fell hard and fast, looking past his wedding band when he was married. In the beginning, they also tolerated his moodiness and the time he committed to the piano instead of them. They saw his passion for the music of Brahms, Chopin, and Liszt, the love and devotion he was capable of, and assumed the skills were transferable. To everyone’s disappointment, he’s never been able to love a woman the way he loves the piano. Not even Karina.
So, invariably, the women became frustrated, lonely, and dissatisfied with their lot as second fiddle. Third, if they realized they were in line behind his wife. At first they tried even harder. It never worked. He doesn’t know why. Maybe human beings are capable of only so much passion. The pie has only so many pieces. For Richard, all but a sliver is devoted to piano. He loves women, appreciates them as much as any man, but ultimately they find themselves achingly hungry with him. And he refuses to feed them. His artistry for playing piano seduces them. His lack of artistry as a man is why they leave.
Steeped in denial, he started seeing Maxine two months after he was diagnosed. She didn’t notice that he couldn’t lift his right arm above his elbow or that he always positioned himself to her right so he could hold her hand with his left. He might’ve slurred his words a touch in the evening when his energy waned, but they’d just shared two bottles of wine. Then one morning she caught him weeping, his hands in his lap at the piano, and he confessed everything.
Instead of running for the hills, she rolled up her sleeves. An acupuncturist, she was convinced she could save him. But no amount of needling, cupping, or burning moxa could prevent his right arm from steadily filling with concrete. She kept at it, but they both knew the effort had become insincere.
Decency laced with guilt prevented her escape. The situation wasn’t healthy for either of them. Sex became quick and unimaginative. She became afraid of his body. He became indifferent to hers. He focused on her imperfections. She wore too much eye makeup. She had bad breath. She wasn’t beautiful enough, interesting enough, challenging enough. Her list of complaints was just as lengthy.
For four months, they argued and sulked and danced silently around the real reason the relationship had to end. It took him that long to accumulate the courage he needed to break up with her. She didn’t protest. They hugged for a long time, then she walked out the door. It was the most unselfish act of his life.
“Anyone looking after you?”
“No. I’m doing okay on my own.”
“You’re going to need help. Your parents, a relative, friends. You can hire private nurses, home health aides, but that will get expensive. Can you call on someone?”
“Uh-huh.”
His mother died of cervical cancer when she was forty-five. Richard is forty-five. Apparently, a rough age in his lineage. He hasn’t spoken to his father in years. His two brothers live in New Hampshire. They work full-time, and their wives are raising young kids. They aren’t options. Grace is in school, and that’s where she belongs. He still hasn’t told her. He doesn’t know how. He draws Karina’s name next but immediately returns that card to the deck. There’s no way.
“How’s your living situation? Did you find a new place?”
“No. I’m still good where I am.”
“Richard, you’re on the fourth floor of a walk-up. Really, you have to get into a new place ASAP, before you need a wheelchair. You’re going to need elevators, ramps. Okay?”
He keeps his gaze steady, refusing any sign of agreement. He can still walk. How could he be in a wheelchair ASAP? He knows this is where the disease goes, yet he can’t bring himself to fully imagine it. He looks into Kathy’s big brown eyes. She can. Easy-peasy.
“So tell me what’s going on.”
“It’s starting in my left arm. I can’t raise my hand above my shoulder, and my fingers are a bit weaker. I can’t lift anything heavy. I’m dropping things. Walking is still mostly okay.”
“Mostly.”
“Yeah.”
“Okay. What about eating, drinking, talking?”
“Mostly okay.”
“Okay, we’ll check out these mostly’s, see what’s happening. Let’s start with your left hand. Spread your fingers and don’t let me bunch them back together.”
He spreads his fingers like a starfish. She scrunches them together with one second’s minimal effort.
“Hold your hand straight out in front of you and don’t let me push it down. Resist me.”
She applies a bit of pressure, and his arm collapses to his side. The last time he was here, he still had the use of both arms and could raise both hands when asked. But his right arm crumbled with the mere suggestion of force on Kathy’s part, and he remembers the terror that rushed through him like a cold blue current, chilling his heart, realizing that he possessed almost
no strength in that arm and that he was about to lose the use of it entirely and forever. He remembers thinking, At least I still have my left arm. He glances now at his left hand, defeated and shamed by his side, and he knows what this profoundly simple exercise will look like in three months’ time.
“Make an A-OK sign with your thumb and index finger and lock them into a ring. Don’t let me pull them apart.”
She pulls them apart.
He wants to punch this nice lady in the face with his feeble hand.
“Show me a big smile, so big it’s fake. Like Hillary.”
He does.
“Now pucker. Like Trump.”
He does.
“Open your mouth and don’t let me shut it.”
He opens his mouth, and with the heel of her hand under his chin, she steadily closes his bottom jaw.
“Stick your tongue out and don’t let me move it.”
She pushes down and right and left on his tongue with a Popsicle stick, shifting it in each direction.
“Lick your lips all the way around.”
Her eyes track his tongue in a circle.
“Fill your cheeks with air and don’t let me pop them.”
She does.
“Are you having any trouble blowing your nose?”
“No.”
“Any trouble with saliva?”
“Like, am I drooling?”
“Yeah.”
“No.”
“How about coughing? Any trouble clearing your throat?”
“Not really.”
“Let me see. Cough from deep down. Give me a big throat clear.”
He tries to take a deep breath but hits a wall sooner than expected, and so his cough comes out shallow and sputtering. He’s embarrassed. He was going for the cough of a lion, but instead he’s a kitten hacking up a hair ball.
“Take a big breath and expel a note for as long as you can. Ready? Go.”
He chooses middle C and runs out of air at about fifteen seconds. Is that normal? Kathy doesn’t say.