CHAPTER TWENTY-NINE
Richard sits in his wheelchair in the living room where Karina left him about a half hour ago, where he’ll stay until Karina or the next home health aide moves him. She parked him in a rectangular patch of sunlight, angled toward the windows, as if a warm and sunny view of Walnut Street is supposed to make him feel more optimistic, less trapped. He knows she’s well-intentioned. He watches the blithe movement of squirrels and birds. Everything alive moves.
He hears Karina sneeze three times. She’s been fighting a cold for the past week, staying away from him as much as possible so as not to infect him. She’s in the kitchen, cooking breakfast. Triggered by the torturously delicious smells of coffee and bacon, saliva pools in his mouth. He gurgles on it and swallows over and over, trying to push the gluey liquid down, struggling not to choke. A string of sticky drool descends over his bottom lip and lands on the cotton towel draped over his chest like a bib for this very reason. He turns his head left and right, but the spiderweb of drool won’t break. He gives up.
He shifts his focus away from the sun and animated existence and instead looks upon his Steinway. Eighty-eight glossy black and white keys. God, what he wouldn’t give to touch them.
Ten feet in front of him.
A million miles.
He stares at it with agonizing desire and apology, as if he’s broken a sacred promise, a marriage vow. He imagines the action of each key, the blending colors of sound, music coming into existence, birthed through his body. He imagines a series of ascending arpeggios, and they become the sound of Karina’s laugh.
His piano. The relationship is over. He’s still working on letting it go. It’s not you, it’s me. Taking the blame doesn’t change a thing. They are divorced, rejected and abandoned, reduced to pitiful statues collecting dust in the living room.
Careful not to tip his head even slightly downward else it flops forward, chin to chest, unable to right itself, he stares at his legs, his feet angled toward each other, pigeon-toed, and he suddenly resents Bill for arranging his feet in this unmanly way, a body position that speaks uncertainty, meekness, submission. Then he laughs at himself, as if anything about an emaciated man dying of ALS in a wheelchair could possibly communicate machismo, as if anyone but his piano were in the room to judge him. Bill dressed Richard’s feet this morning in thin wool socks and black loafers. Shoes on a man whose feet will never again walk this earth. The irony and tragedy of wearing shoes make him want to cry. He can’t stand to look at his feet. Literally.
Instead, he studies the rubber flesh of his flat right hand, limp and lifeless; his curled, distorted left hand, no longer possessed by him; both placed on pillows over the arms of his wheelchair in exactly this position by Bill over an hour ago. Richard’s entire body is a costume discarded, the party over. He returns to what used to be his elegant left hand and commands the fingers to straighten, knowing they won’t. He changes tack. Please. His limbs are petulant children, unreachable through begging, bribery, ultimatums, or sweet talk.
He tries to imagine the war beneath his skin; the invaded countries of his neurons and muscles overwhelmed, decimated; the neutral territories of bone, ligament, and tendon rendered useless by the horrific destruction surrounding them. His entire body is detaching, unzipping from his soul.
He turns his head ninety degrees left, then right, testing himself, relieved that he can still do this. Once his neck and voice are paralyzed, he’ll be reduced to eye-gaze technology and a computer-generated voice for communicating. He opens his eyes wide and pinches them shut tight. Good. When he can no longer blink, he’ll be locked in. He doesn’t want to die, but he hopes he dies before that happens. Maybe that won’t happen.
He can feel his tongue wriggling inside his mouth, undulating as if a family of earthworms were dancing within it, celebrating a rainstorm. When he speaks, his tongue feels thick, the volume thinned and barely audible. His words, once a finely detailed painting, are painfully slow to produce and almost impossible to comprehend, strangled and lacking consonants. A Pollock piece. Free jazz.
Already compromised to what Dr. Goldstein says is now 39 percent forced vital capacity, every single inhale is a struggle. Every exhale is incomplete. He’s forced to sip air a teaspoon at a time when he’s desperate to gulp it down by the gallon, each taste an agonizing disappointment, evidence of the withering muscles surrounding his ribs, his abdomen, his diaphragm. Pulling in enough air to simply sit motionless in the wheelchair is conscious, draining work.
He’s probably close to needing the BiPAP 24-7 but won’t admit this aloud or even request it for purposes of a temporary rest during the day. He won’t let anyone advance his wheelchair one inch onto the handicapped ramp of that slippery slope. Even now, every single night, he still can’t believe this is his reality. He’s traded bed partners, beautiful women for a BiPAP. It’s the worst monogamous relationship of his life. And they can never break up. Without the BiPAP at night, he might retain too much carbon dioxide in his sleep and suffer brain damage or suffocate and die.
He doesn’t want to die.
He opens his mouth wide and closes it several times, regrettably sensing a new and unmistakable slackness in his jaw. And so it begins. Once the weakness ensues, there is no abortion, no retreating, only a relentless, insidious icy downward luge into paralysis. Soon, his jaw will hang open, ribbons of saliva will continually stream over his bottom lip, and he won’t be able to talk. He frowns as he imagines this likely development, the impossible-to-mask spectrum from pity to disgust in Karina’s and Bill’s and every stranger’s eyes when they look at him. He doesn’t even want to face his piano like that.
When will this next irreversible insult be inflicted? Tomorrow? Next week? End of the month? This summer? The answer is yes.
He studies his hands that will never again look familiar to him, fingers that used to carry exquisite strength and agility, that a year and a half ago played eighty-seven pages of Brahms I without error. He misses playing Brahms, feeding himself lunch, scratching his nose, touching a woman, making Karina laugh. He apologizes to his beloved piano for abandoning it, to Karina for abandoning her, and he suddenly feels the cumulative weight of every single loss all at once like a concrete slab dropped onto his chest.
And he can’t breath. Without the slab on his chest, every inhale was already an intended dive into open ocean, stopped dead in ankle-deep water. Now, suddenly, the tide has gone out. He’s gasping, drowning on dry land. He can feel the adrenaline kick, the fight-or-flight animal instinct. This is life threatening. More air now. Yet, he can’t run, and he can’t fight, and he can’t get more air now. He tries to use his next exhale to call for help, but he succeeds only in spitting. Karina’s in the kitchen drinking coffee, and he’s dying in the living room without notice.
Inhale. Exhale.
His body is seized, the tendons and muscles of his neck squeezing, shaking violently with effort. Each breath feels like drawing air through a thin, clogged straw. It feels like suffocating. Fear rises in his throat where oxygen should flow. He swallows, choking on it.
Breathe in. Breathe out.
Shallow sips. He’s so hungry for air. His cells are literally starving for oxygen. Keep breathing.
He calls up what it took to master Rachmaninoff’s Piano Concerto no. 3. Ten grueling hours every day, relentlessly focused, playing each movement over and over, fighting through excruciating physical pain and mental exhaustion until he could play the entire piece by memory and without error. Now his tenacity, his will, his purpose, is trained on breathing.
In. Out.
This is now his song to play. He is not this paralyzed body, these screaming lungs, this primal fear. He will be an instrument of breathing.
Breathe.
Again. Pull the air in. Push it out. Again. It’s not enough. He’s fatigued, strangled, starving for air, failing.
A few short and long months ago, playing piano was like breathing to him. Now breathing is breathing to him. His work. His purpose. His passion. His existence. He has to keep breathing.
He doesn’t want to die.