Every Note Played(20)
CHAPTER TEN
Richard closes his eyes against the muted morning light, wishing he could fall back to sleep, knowing he can’t. He used to sleep through the night without waking, oblivious to the stirrings of his wife or whoever might be next to him, deaf to car alarms and police sirens and phone alerts. He used to sleep for six to seven hours straight every night, lifting gently out of slumber into consciousness each morning with no memory of dreams or thoughts beyond shutting off the bedside light. He turns his head to see the time. He just spent eleven hours in bed, and he’s exhausted. He doesn’t sleep well anymore.
With two lifeless arms, he’s essentially stuck on his back all night. He can rock himself to one side, but it’s risky. The last time he did this was a few weeks ago. His right arm became trapped at a painful angle under his torso, cutting off the circulation, and he had a hell of a time freeing it.
And he can’t risk beaching himself on his stomach. Because his abdominal muscles have weakened, he’s not able to draw in enough air when lying flat either prone or supine. Propped up on three pillows, he sleeps with his torso angled upright so that gravity can assist him with breathing. When three pillows and gravity aren’t enough, the solution won’t be four pillows.
His pulmonologist says Richard will need a BiPAP machine likely within the next month. It’s already been ordered for him. He’ll have to wear a mask strapped over his nose and mouth, and pressurized air will be forced in and out of his lungs all night long. His pulmonologist says it’s no big deal. The BiPAP is noninvasive. Chronic snorers with sleep apnea use a similar machine all the time. But to Richard, the BiPAP is a very big deal. And everything he needs feels invasive.
The introduction of each new medicine, adaptive device, specialist, and piece of equipment comes with a corresponding loss of function and independence. The new medications for drooling and depression, the new voice-to-text phone app, the ankle foot orthotic he’s supposed to wear to keep his right foot from dropping, the feeding tube he’ll soon need, the power wheelchair waiting for him in the living room, the BiPAP already ordered. Each one is his signature on the dotted line of a contract agreeing to the next phase of ALS. He’s standing in a lake of dense quicksand, and every offer of assistance is a block of concrete placed atop his head, sinking him irrevocably deeper.
And although Richard can’t bear to talk about it, he’s keenly aware of the last concrete block in the queue. When his diaphragm and abdominal muscles quit their jobs entirely and he can’t produce any respiratory pressure on his own, the final offering from his multidisciplinary medical team will be mechanical ventilation through a tracheostomy tube. Twenty-four/seven life support. Up to his eyeballs in quicksand, he’ll be asked to blink once if he wants to live.
It’s ten after seven, and Bill won’t be here until nine. Richard has almost two hours to fill. Not long ago, it wouldn’t be unusual for him to spend an entire day alone with his Steinway, perfecting the sonatas and preludes of Schubert or Debussy or Liszt. He’d begin in the morning, the sun streaming in through the bay windows, a spotlight for his private stage, and he’d be stunned to look up, seemingly only minutes later, to see his reflection in the darkened windowpanes. An entire day, here and gone in a snap. He was never lonely when he was alone with his piano. Without the piano, two hours is seven thousand two hundred seconds. An anxious eternity.
Torn between competing desires, aching to sleep and aching to move off his back, he spends several minutes doing neither. He turns his head to the side, pressing his nose into the pillowcase, and inhales the smell of freshly laundered sheets. He breathes steadily there, and the experience is heavenly, as sensually enveloping as walking into a bread bakery, but more specific, more personal. He can’t remember the brands of detergent and fabric softener his mother used, but Trevor, who instead of managing Richard’s career is now managing Richard’s bills, services, and the delivery of groceries and household supplies, must be purchasing the exact combination Richard’s mother bought. He inhales as deeply as he can, and just as the smell of onions sautéing on a stove puts him in his grandmother’s kitchen, he’s transported to his childhood bedroom.
He’s Ricky, seven years old and waking in his twin bed on a Saturday morning. He’ll have bacon and pancakes drenched in maple syrup for breakfast before his piano lesson with Mrs. Postma. He’ll play Chopin and Bach. His feet don’t yet reach the pedals. Mrs. Postma loves teaching him. She sometimes gives him a pack of Life Savers at the end of his lesson as a reward for being such a good student. He likes the five-flavor rolls best. Cherry is his favorite. A feeling of safety and innocence washes over him as delicious as creamy hot soup, but it passes through him too quickly and without pausing. He’s Richard, back in his adult body, in his adult bed, and he wants to cry for that little boy, for what he’s destined to face as a man, for all that he’ll lose.
Eleven hours of locked-up pain in his hips and spine intensifies, annihilating any hope of sleep, so he shimmies himself out of bed. He walks through his darkened bedroom. He can’t draw back the drapes. He can’t pull up the shades. He flips the bathroom light switch on with his mouth.
Naked, he straddles the toilet and empties his bladder into the bowl, aiming with his hips. His stream is accurate at first but then, as usual, goes astray. Before he’s done, he’s sprayed urine onto the back of the lid, splattered it across the seat, and dribbled some onto the floor. He hears his mother’s voice in his head. In a household inhabited by a husband and three boys, she was regularly scolding one of them about the god-awful filthy state of their toilet. He assesses the mess he’s made, powerless to wipe any of it up. Sorry, Mom.