“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.
Yet he knows with absolute certainty that it will stop. At some point, the twitching in every single muscle group—in his arms, his legs, his mouth, his diaphragm—will stop forever, and so he should embrace the twitching. Be grateful for it. The twitching means his muscles are still there, still capable of responding.
For now.
His motor neurons are being poisoned by a cocktail of toxins, the recipe unknown to his doctor and every scientist on the planet, and his entire motor neuron system is in a death spiral. His neurons are dying, and the muscles they feed are literally starving for input. Every twitch is a muscle stammering, gasping, begging to be saved.
They can’t be saved.
But they aren’t dead yet. Like the fuel light in his car that alerts him when he’s low on gas, these fasciculations are an early-warning system. As he lies naked and cold on his bed, he starts doing math. Assuming he has about two gallons left in the tank when his fuel light is triggered and that his BMW conservatively does twenty-two miles per gallon in the city, he could go forty-four more miles before running out of gas. He imagines this scenario. The last drop of gas used. The engine gears ground to a halt. Seized. The car stopped. Dead.
The right side of his bottom lip twitches. Without understanding the biology, he wonders how much muscle fuel remains in his body and wishes the twitching could be enumerated.
How many miles does he have left?
CHAPTER THREE
As Karina walks a little over five blocks to Commonwealth Avenue, she’s barely aware of her surroundings—sparrows nibbling on crumbs of a dropped muffin beneath a park bench; a fierce dragon tattoo covering the bare chest of a skateboarder; the aggressive whir of the board’s wheels as he whizzes by her; a young Asian couple strolling hip to hip, hand in hand; a breeze perfumed with cigarette smoke; a baby wailing in a stroller; a dog barking; the alternating choreography of cars and pedestrians at every intersection. Instead, her attention is held inward.
Her heart races faster than required for her walking pace, making her anxious. Or maybe, likely, she was anxious first, and her heart rate responded. She speeds up in an effort to synchronize her external action with her inner physiology, which only makes her feel as if she were rushing, late. She checks her watch, which is utterly unnecessary. She can’t be early or late when he doesn’t know she’s coming.
She’s worked up a sweat. Stopped at the next corner, waiting for a WALK signal, she pulls a tissue from her purse, reaches under her shirt, and blots her armpits. She digs around for another tissue but can’t find one. She wipes her forehead and nose with her hands.
She arrives at Richard’s address and stops at the base of the stairs, looking up to the fourth-floor windows. Behind her, the spires of Trinity Church and the sheer vertical glass of the John Hancock building rise above the rooftops of the brownstones on the other side of Comm Ave. He has a lovely view.
This street in the Back Bay is especially posh, housing Boston’s Brahmins, cousins to their neighbors on Beacon Hill. Richard liv
es on the same block as many of Boston’s elegant and elite—the president of BioGO, a Massachusetts General Hospital surgeon, the fourth-generation owner of a two-hundred-year-old art gallery on Newbury Street. Richard makes decent money, exceptional for a pianist, but this address is way out of his league, probably his version of a midlife crisis, his shiny red Porsche. He must be mortgaged to the hilt.
She hasn’t seen him since Grace’s high school graduation, over a year ago now. And she’s never been here. Well, she’s driven by twice before, both times at night, both times ostensibly to avoid traffic, purposefully rerouting from her preferred course home from downtown Boston, slowing to a crawl just long enough to avoid instigating honks from behind her, barely long enough to capture a quick blur of high ceilings and a nonspecific golden glow of a home inhabited.
She resents that Richard got to be the one to move out, to start over, fresh in a new place. Memories of him haunt her in every room of their once-shared home, the rare good as unsettling as the common bad. She replaced their mattress and their dinnerware. She removed their framed wedding picture from the living-room wall and hung a pretty mirror there instead. It doesn’t matter. She’s exactly where he left her, still living in their house, his energetic impression left behind like a red-wine stain on a white blouse. Even washed a thousand times, that brown spot is never coming out.
She could move, especially now that Grace has gone off to college. But where would she go? And do what? Her stubbornness, that impenetrable bedrock of her personality, refuses to give these questions actual consideration beyond calling them nonsense. So she stays put, frozen in the three-bedroom colonial museum of her devastated marriage.
Grace already had her license when Karina and Richard separated, so she was able to drive herself over to her father’s “house.” His bachelor pad. Karina walks up the stairs to the front door of his brownstone, and her mouth goes sour. At the top step, her stomach matches the taste in her mouth, and the word sicken grabs the microphone of her inner monologue. She feels sick. But she’s not sick, she reminds herself. Richard is.
The sour in her stomach turns, fermenting. Why is she here? To say or do what? Offer pity, sympathy, help? To see how bad off he is with her own eyes, the same reason drivers rubberneck when passing the site of an accident—to get a good look at the wreckage before moving along?
What will he look like? She has no reference point other than Stephen Hawking. A hand puppet with no hand in the body, paralyzed, emaciated, unable to breathe without a machine, his limbs, torso, and head positioned in a wheelchair like a little girl’s floppy, cotton-limbed rag doll, his voice computer generated. Is that what Richard will look like?
He might not even be home. Maybe he’s in a hospital. She should’ve called first. Calling somehow seemed scarier than drumming up the nerve to show up at his front door unannounced. Part of her believes that she caused his illness, even though she knows that such thinking is narcissistically absurd. How many times has she wished him dead? Now he’s dying, and she’s a despicable, hellbound, horrible woman for ever wishing such a thing, and worse, for having derived sick pleasure from it.
She stands before the doorbell, torn between following through and turning around, passionate counterpoints creating a quagmire of indecision, pushing and pulling her from within. If she were the gambling kind, she’d put her money on leaving. She breaks through her inertia and rings the bell, surprising herself.
“Hello?” asks Richard’s voice over the intercom speaker.
Karina’s heart beats in her tight, acidic throat. “It’s Karina.”
She tucks her hair behind her ears and pulls at her bra strap, which is sticking uncomfortably to her sweaty body. She waits for him to buzz her in, but nothing happens. Opaque white curtains cover the windows in the door, making it impossible to see if anyone is coming. Then she hears footsteps. The door opens.
Richard says nothing. She waits for him to look stunned that she’s here, but that doesn’t happen. Instead his face is motionless but for his eyes, which hint at a smile, not exactly happy to see her, but satisfied, right about something, and her heart in her throat already knows that this visit was a disastrous idea. He continues to say nothing and she says nothing, and this nonverbal game of chicken probably takes up two seconds, but it stretches out in agonizing slow motion beyond the boundaries of space and time.
“I should’ve called.”
“Come on in.”
As she follows him up the three flights, she studies his footing, assured and steady and normal. His left hand slides along the banister, and although it never loses contact, the banister doesn’t appear to be assisting him. It’s not a handicapped railing. From behind, he looks perfectly healthy.
It was a rumor.
She is a fool.
Inside his condo, he leads her to the kitchen, dark wood and black counters and stainless steel, modern and masculine. He offers her a seat on a stool at the island, overlooking the living room—his Steinway grand, a brown leather couch, the Oriental carpet from their den, a laptop computer on a desk by the window, a bookcase—sparse and tidy and singularly focused. Very Richard.
An army of at least two dozen bottles of wine stands at attention on the kitchen counter, an uncorked neck and a puddle of red at the bottom of a goblet in front of him. He loves wine, likes to fancy himself a connoisseur, but typically indulges in a special selection only after a performance or in celebration of an achievement or a holiday or at least with dinner. It’s not even noon on a Wednesday.
“These were from the cellar. This 2000 Château Mouton Rothschild is exquisite.” He pulls a glass from a cabinet. “Join me?”
“No, thanks.”
“This”—he waves his hand back and forth in the air between them—“unexpected visit or whatever it is needs alcohol, don’t you think?”
“Should you be drinking so much?”
He laughs. “I’m not tackling all of these today. Tomorrow and tomorrow and tomorrow.”
He grabs a beautiful black bottle with a golden sheep embossed on it, already open, and pours her a generous glass, ignoring her answer. She sips, then smiles out of obligation, unimpressed.
He laughs again. “You still have the discriminating palate of a farm animal.”
It’s true. She can’t discern the difference between an expensive bottle of Mouton and a jug of Gallo, nor does she care, and both traits have always driven Richard mad. And true to patronizing form, he’s essentially just called her a stupid pig. Karina clenches her teeth, biting back the comment that will leave her mouth if she opens it and the urge to throw $100 worth of his precious wine in his face.
He swirls, smells, sips, closes his eyes, waits, swallows, and licks his lips. He opens his eyes and mouth and looks at her as if he’s just had an orgasm or seen God.
“How can you not appreciate this? The timing is perfect. Taste it again. Smell the cherries?”
She tries another sip. It’s okay. She doesn’t smell cherries. “I can’t remember the last time we shared a bottle of wine.”
“Four years ago, November. I was just home from Japan, wrecked from the flights. You made golabki, and we drank a bottle of Châteaux Margaux.”
She stares at him, surprised and intrigued. She has no memory of this evening, so readily and fondly retrieved by Richard, and wonders if it simply wasn’t significant enough to her to hold on to or if the memory faded, crowded out by too many other experiences that didn’t jibe. Funny how the story of their lives can be an entirely different genre depending on the narrator.
They lock eyes. His look a bit older than she remembers. Or not older. Sadder. And his face looks more defined. Although he’s always been thin, he’s definitely lost weight. And he’s grown a beard.
“I see you’ve stopped shaving.”
“Trying something new. You like it?”
“No.”
He grins and takes another sip of wine. He taps the rim of his glass with his finger and says nothing, and sh
e can’t figure out whether he’s deciding which of her buttons to push or showing restraint. Restraint would be new.
“So you canceled your tour.”
“How did you hear?”
“The Globe said it was tendinitis.”
“So is that why you’re here, to check on my tendinitis?”
He’s baiting her, asking her to spell it out, to say the three letters, and her apprehensive heart beats too fast again. She brings the goblet to her lips, avoiding his question and her answer, swallowing a mouthful of wine along with her real reason for being here.
“I used to think you sometimes canceled for the attention.”
“Karina, I’m abandoning several thousand people over the next three weeks who were all planning on spending an entire evening paying attention to me. Canceling is the opposite of calling attention.”
Again, they lock eyes, and the energy exchanged is somewhere between an intimate connection and a showdown.
“Of course, it did get your attention.” He smiles.
He sticks his nose into his goblet and inhales, then drains the remaining gulp. He looks over the bottles on the counter and pulls a soldier from the back row. He fits the hood of the opener over the top of the neck and begins to twist, but he keeps losing his grip before making any progress. He lifts the opener off the bottle and examines the top, rubbing it with his finger. He wipes his hand on his pants, as if it had been wet.
“These hard-wax-capsule corks are a bitch to open.”
He repositions the opener and tries and tries, but his fingers keep slipping and have no command over the twisting mechanism. Without thinking much of it, she’s about to offer to do it for him when he stops and hurls the bottle opener across the room. Karina ducks reflexively, even though she was never in danger from the object’s trajectory.
“There it is,” he accuses her. “That’s what you came to see, yes?”