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.
He looks down at his distended stomach. He’s not fat. Despite a steady diet of milk shakes, he’s alarmingly underweight. His abdominal muscles have started loosening their grip, letting go. He stands sideways in front of his bathroom mirror and examines his profile. He’s got the tummy of a toddler, the beer gut of an old man.
He’s also five days constipated. His neurologist recently put him on glycopyrrolate, an anticholinergic that decreases the secretion of saliva in his mouth and throat, so there’s less drool, less pooling in the back of his mouth. Before going on this medication, he had several unrelenting coughing fits that carried on for so long that Bill and whatever aide or therapist was in the room believed that Richard might drown right then and there in a puddle of his own spit. Thankfully, the drug works, but it comes with a trade-off. Less spit but full of shit.
His overall lack of mobility and the mostly liquid, rather fiberless diet he’s on can also cause constipation, but since this is a new issue, he’s blaming the glycopyrrolate. He’s also on Rilutek. It’s said to prolong survival by 10 percent. Richard did the math. The average duration of this disease is twenty-seven to forty-three months, so he stands to gain about three months of life on Rilutek. A single bonus season. According to his most optimistic calculations, he won’t see his fiftieth birthday.
Not necessarily, people say. Look at Stephen Hawking, they say. Sure, the disease will paralyze every muscle he owns but for those in his intestines and his beating heart, but he could live on artificial ventilation for thirty more years! This is the hope people want him to adopt, the inspirational speech aimed to fuel his will to live and persevere. Although Richard hasn’t reached a definitive decision on a tracheostomy yet, if he had to choose today, he would rather die than rely on invasive ventilation. Stephen Hawking is a theoretical physicist and a genius. He can live in the realm of his mind. Richard can’t. He looks down at his dangling hands. His world, his fascination, his reason, was the piano. If he were a brilliant theoretical physicist with ALS, he might hope for thirty more years. As a pianist with ALS, he’s not buying any new calendars.
Hungry, he walks into the kitchen out of habit. He faces the refrigerator and tries to penetrate it with his eyes as if he had X-ray vision, imagining the food inside that he can’t eat unless Bill or Melanie or Kevin opens the door and prepares it for him. His stomach growls. Two more hours until breakfast. For some reason, he pictures the bottle of balsamic salad dressing in the door and thinks about its expiration date, wondering if it will outlast him. He imagines Trevor, tasked with sorting through Richard’s belongings after his death, fixing himself a salad, pouring the balsamic dressing over a bowl of mixed greens.
Richard leaves the refrigerator and now stands in front of his bookcase, reading the spines of his books. He can’t pull one from the shelf and flip through it. Photo albums from his various tours and concerts are stacked on the shelf below the books containing pictures he can’t see of himself playing at some of his favorite venues—the Sydney Opera House, Roy Thomson Hall in Toronto, the Oslo Opera House, Merkin Hall, Carnegie Hall, Tanglewood, and of course Boston Symphony Hall. The cover of the photo album on top is blanketed with dust. He can’t wipe it off. Programs from several hundred shows line the bottom shelf. There will never be another program to add to the line, never another picture to slide into the next clear plastic sleeve of his dusty photo album. This realization isn’t a new loss, but he never gets used to it. He’ll never play again.
His chest tightens, and his heart and lungs feel sluggish as if filling with wet sand. Despite the glycopyrrolate, tears well at the back of his eyes. He coughs several times and steps away from the bookcase.
He continues walking through his apartment, a tourist in his own home, a visitor at a museum where he’s allowed to look but not touch. He wanders over to his desk and visits the two framed photographs of Grace. Baby Grace with no hair and one bottom tooth. Grace in her cap and gown, her long chestnut hair worn down, one of the few times he can remember it not in a ponytail. He wonders if she’s wearing it up or down these days.
He imagines the space between the two photographs. He missed so much of her childhood. His heart twinges with regret, wishing he could go back. He thinks of the framed moments he’ll likely never see—her college graduation, her wedding day, her children. He sits at his desk and leans in to get a closer look, hoping to see something in the tilt of her head, the light reflecting in her eyes, to absorb something new and lasting about her while he still can. The hunger within his distended stomach widens, aching for more than breakfast.
And that single, lonely frame on his desk hurts his heart. There should’ve been more. When he and Karina were first married, he dreamed of a traditional family with great excitement—three or four children, a house in the suburbs, the regular hours of an instructor at New England Conservatory, and Karina teaching or playing somewhere. He hoped for a son especially, a boy who played piano or violin or any instrument, a young man Richard could inspire, mentor, and celebrate. He promised himself as a young man that he’d be a better father to his children than his father was to him.
He studies Grace’s face in the photograph, and his heart is pummeled by regret, anger, blame, and shame. He didn’t live the life he intended, and there’s no way to do it over. Maybe he’s no better than his father after all. He blinks back tears and clenches his teeth, swallowing over and over, stuffing these ancient and new emotions down, absorbing them into his body.
Richard’s father was the quarterback captain of his high school football team, division champions class of 1958, married to the prettiest cheerleader on the squad, and Pop Warner coach to two of his three boys. Walt Evans felt no pride or joy in his awkward skinny son who loved classical piano. He still doesn’t. Real men love Tom Brady, not Wolfgang Mozart. Although Richard hasn’t been back home in years, he’d bet that his brothers’ football trophies are still standing gleaming tall on the fireplace mantel in the living room, proudly on public display. His father is probably still bragging about Mikey’s one-handed touchdown catch that won the Thanksgiving Day game against Hanover High. Richard’s many piano competition awards were kept in his bedroom, hidden, private. If they haven’t been thrown away or donated to the YMCA, they’re now most likely in an unmarked cardboard box in the attic.
Growing up, Richard felt his father’s disinterest in him as disdain, disgust, dishonor. He’s not sure Grace’s experience of her father is much better. She had two highly trained pianists for parents, and no matter how he and Karina sold it, zero interest in the piano. She loved sports. Soccer and volleyball. Oh, the irony. For the first time in his life, Richard empathized with the disappointment his father felt in him. But he swore he wouldn’t pick up the thread in the pattern his father had woven, that he wouldn’t in turn reject his daughter. She could love anything she wanted, even if it involved nets and balls instead of strings and keys.
He understood this, yet her nonmusical interests created real distance between them. They literally had no common ground—she was on a field or a court, and he was in a practice room or on a stage. The demands on his time, both rehearsing and performing, kept him from being home much, and when he was, he had trouble relating to her. He’s always loved her, but they were never close.
Then he and Karina split. Karina lobbied hard for Grace’s allegiance, disclosing all of Richard’s many sins. He hated Karina for doing that, accused her of stealing his only daughter’s love, and threatened to reveal his side of the story. But in truth Karina didn’t need a smear campaign to secure Grace’s love and loyalty. Karina already had it. And pointing out the rotting heap of trash on Karina’s side of the street wouldn’t have served to clean up his.
Hidden behind the photo from Grace’s graduation is a picture of Richard and Karina on their wedding day. He almost didn’t bother taking it with him when he moved out, and he almost tossed it in the trash when he needed a frame for Grace’s graduation picture. He and Karina are holding hands and smiling in the photo, young and in love, assuming everything will work out for them. Oblivious. He thinks of how far they strayed from the life he wanted in that photograph, of what she stole from him, of the second chance at happiness that he’ll now never have, and a wild anger snakes through him, coiling in the dark emptiness of his stomach. If he could use his hands, he’d remove that hidden wedding photo from the frame and rip it to shreds.
He needs something to do, something to distract him from the bottomless sorrow and anger inside his gut, from the tortured thoughts circling like vultures in his head. He can’t use the computer until Bill affixes Richard’s Head Mouse, a reflective-dot sticker stuck to the tip of his nose. Well, he could go “old school” and peck at the keys with a pen held by his teeth or with his big toe as he did before getting the Head Mouse, but he doesn’t feel like it.
He considers watching TV. The remote is taped to the hardwood floor where he can press the on-button with his big toe. Once the TV and cable are on, he can press the voice-command button with his toe and say, “Channel Five.” He could watch CNN or PBS or a movie, but it’s too passive.
He wants to run, scream, cry, punch something, break something, kill something. Instead, he sits on the couch, powerless, laboring to breathe, staring vaguely at his pathetic reflection in the glassy black TV screen. He tries to imagine the life he might’ve lived if he hadn’t met Karina, if he had forty more years, if he didn’t have to sit here alone for two hours with no hands, if he didn’t have ALS. His breathing eventually settles as he stares and waits. He thinks of nothing coherent for a long time.
He’s playing Debussy’s Préludes in the TV screen as he falls asleep.