Every Note Played(21)
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.