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 peeking down that rabbit hole.
He’s going to live and die in there.