Every Note Played(4)
“You really don’t know?” asks Pam.
They all wait for her answer, lips shut, bodies still, an audience engrossed in watching a play.
“What? What, is he dying or something?”
A nervous half-laugh escapes her, and the sound finds no harmony. She searches the circle of parents for connection, even if the comment was slightly inappropriate, for someone to forgive her a bit of dark humor. But everyone either looks horrified or away. Everyone but Pam. Her eyes betray a reluctant nod.
“Karina, he has ALS.”
CHAPTER TWO
Richard lies in bed awake, satisfied by a full night’s sleep, his eyes alert and unblinking, staring vaguely at a curled slice of peeling paint on the vaulted ceiling directly above him. He can feel it coming, an invisible presence creeping, like ions charged and buzzing in the air before an approaching electrical storm, and all he can do is lie still and wait for it to pass through him.
He’s in his own bedroom when he should be waking up in the Mandarin Oriental in New York City. He was supposed to play a solo recital at David Geffen Hall at Lincoln Center last night. He loves Lincoln Center. The almost-three-thousand-seat venue had been sold-out for months. If he were at the Mandarin, he’d be about ready to order breakfast. Possibly for two.
But he’s not at the Mandarin in New York, and he’s not in the company of a lovely woman. He’s alone in his bed in his condo on Commonwealth Avenue in Boston. And even though he’s hungry, he waits.
Trevor, his agent, sent out a press release canceling his tour, claiming tendinitis. Richard can’t understand the point of publicizing this misleading information. They bite the bullet now or they bite the bullet later. Either way, the barrel of the gun stays firmly pointed at Richard’s head. True, he first assumed he was dealing with tendinitis, a frustratingly inconvenient but common injury that would heal with rest and physical therapy. He’d been so frustrated with taking even a few weeks away from the piano, worried about what it would do to his playing. That was seven months and a lifetime ago. What he wouldn’t give to have tendinitis.
It’s possible his agent is still in denial. Richard is scheduled to play with the Chicago Symphony Orchestra in the fall. Trevor hasn’t canceled this gig yet, just in case Richard is somehow better by then. Richard gets it. Even now, six months after his diagnosis, he still can’t fully wrap his mind around what he has, what’s going to happen. Many times in any given day, when he’s reading or drinking a cup of coffee, he’s symptom-free. He’ll feel totally normal, and he’ll either forget that the past several months have happened, or a confident rebellion rises.
The neurologist was wrong. It’s a virus. A pinched nerve. Lyme disease. Tendinitis. A temporary problem, and now it’s resolved. Nothing’s wrong.
And then his right hand won’t keep time when playing Rachmaninoff’s Prelude in G-sharp Minor, chasing and not catching the tempo. Or he’ll drop his half-full cup of coffee because it’s too heavy. Or he doesn’t have the strength to manage the fingernail clipper. He looks down at the grotesquely long fingernails of his left hand, the neatly trimmed nails of his right.
This is not a temporary problem.
He will not be playing in Chicago in the fall.
He’s naked, has always slept in the nude. All those years next to Karina in her high-necked flannel pajamas and kneesocks. He tries to picture her naked but can only imagine the other women. This would normally arouse him, and he’d welcome the pleasant distraction of masturbation right now, but the dreadful anticipation of what’s coming has him anxious, and his dick lies limp and still like the rest of him.
His body heat has created a cozy cocoon beneath the covers, a stark contrast to the uninviting temperature of his bedroom. He braces for the shocking sharpness of cold air against his skin as he whips the sheet and comforter off his body. He wants to see it when it comes.
His eyes scrutinize the length of his arms, each knuckle of each finger, especially the index and middle fingers of his right hand. He evaluates his chest and stomach for irregularities amid the rise and fall of his breathing. He drops his gaze to his legs, his toes; his senses heightened and ready, a hunter scanning for a flash of white fur.
He waits, his body a pot of water on the stove, the setting dialed to high. It’s only a matter of time. A watched pot will eventually boil. Of course, he hopes it won’t come. But also, perversely, he lies there welcoming it, its familiarity dancing through his body.
The first bubble breaks the surface, a pop in his left calf. It vibrates there for a few seconds, the opening act, then jumps to his right quadriceps, just above the knee. Then the pad at the base of his right thumb flickers. Over and over and over.
He can’t bear to witness this one in particular, this spasm in his dominant thumb, yet he cannot look away. He silently pleads with it, this microscopic enemy within. By sheer coincidence, for he knows he possesses no power over its intentions, it leaves his hand, tunneling in the space between his skin and fascia like a mouse burrowing within the walls of a house, and invades his right biceps next. Then his bottom lip. These rapid, fluttering seizures ripple from one part of his body to another in rapid succession, a roiling boil.
Sometimes, the twitching lingers in one place. Yesterday, it got stuck in a quarter-size segment of his right triceps, contracting in intermittent, repetitive pulses for several hours. It set up shop there, obsessed there, fell in love and couldn’t move on, and he panicked that it would never stop.