CHAPTER TWENTY-SEVEN
Richard wakes from having dozed off, parked upright in his wheelchair in front of the TV, wishing he could be reclined. Although the TV has been on since this morning when Bill set him up here, he stopped watching it at least a couple of hours ago. His heavy head has tipped down, chin to chest, and rolled right, and he doesn’t have the neck-muscle strength to correct it. His towel bib has fallen off his chest, and the front of his shirt is soaked with drool. His eyeballs are still tired from straining to look up and left to see the TV. So he stares at the floor, where his eyes and head are pointed, and listens to Judge Judy, surrendering to what is.
He’s in the Maserati of power wheelchairs. Front-wheel drive with two motors, it’s tricked out with mag wheels, eight-inch casters, a tilt-in-space reclining feature, and a hand-operated joystick that comes standard with this model. But because he has no hands, he has no way to control it. He ordered it so long ago, when he still had the use of his left hand, when he could still play the piano, when he could still hope that he’d never actually need the chair. He’s in the driver’s seat of a sexy sports car, unable to place his hands on the steering wheel or step his foot on the gas, forever parked in the garage.
There are tech devices that would allow him to control the wheelchair with his chin or tongue or even his breath, but Karina and Richard haven’t ordered anything. The activation energy is a mountain precipice—too many insurance forms, the astronomical cost despite any coverage, the wait to receive the device. It’s probably hard for anyone associated with Richard to invest time or money in his ability to move his chin or tongue. How much longer will he be able to breathe? Ordering a wheelchair-operating device powered by breath begs an answer to that question, and Richard would rather not ask it. So he’s trapped wherever someone parks him, mostly here in front of the TV or in the living room. He can’t leave the house until the ramp is completed because his chair doesn’t fit through the door to the garage.
For some absurd reason, the loss of his legs took him and Karina by surprise. It shouldn’t have. Bill and the other home health aides from Caring Health, his physical therapist, Kathy DeVillo, and his neurologist all told them, warned them, practically begged them to build the ramp sooner rather than later. Don’t wait. They both blew it off. Richard truly believed he might never need the damn chair. He’d been wearing the ankle foot orthotic on his right foot quite comfortably for so long, and his left leg seemed to be in good shape. He formulated his own highly unscientific, clinically unproven theory that the disease had arrested, rendered permanently dormant in his legs, and threw his faith into this theory like a religious zealot. He would never lose his legs. Amen and hallelujah.
Shortly after ALS severed his right leg from his control, his left leg threw up its white flag. Paralysis settled in rapidly, as if someone had pulled the stopper at his ankle and all the sand came pouring out. Sitting in his wheelchair, staring at the floor and unable to leave the house, it’s clear now. No part of him is safe from this disease.
He hoped they wouldn’t have to spend any money on an unwanted construction project, an ugly, utilitarian ramp extending from the front door to the driveway, announcing his handicap to the world. Thankfully, his condo finally sold last week, so he can afford the ramp. He’d much rather leave that money to Grace.
So here he sits, Mr. Potato Head without arms or legs, a bobblehead on a breathing torso. His neck is too weak to hold his head up reliably, especially later in the day—making use of the Head Mouse, even when he’s wearing a neck collar, an exercise in frustrating madness, so he’s disconnected from his computer until they get the Tobii eye-tracking-technology device. It’s been ordered. He’s down to 120 pounds from 170, physically disappearing, and yet he’s taking up more and more space—this wheelchair, the hospital bed, the BiPAP machine, the shower chair, the Hoyer lift that should arrive any day now.
Transferring him from the bed into the chair in the morning and from the chair into bed in the evening is a massive chore that requires great strength and trained technique. Despite how slight and fragile his mass is, he’s deadweight, like a sleeping child. Karina can’t do it. Bill has been coming for two shifts since Richard lost his legs, morning and evening, using all his muscle and height and a gait belt to lift Richard’s body safely from point A to point B. The Hoyer lift, which looks like a cross between an exercise machine and a hammock swing, will make it possible for anyone to safely move him in and out of bed.
He hears the doorbell ring. Just weeks ago, this might’ve been the sound of him stepping on the call button taped to the floor by his bed, but now, it can only be the actual doorbell at the front door. He hears men’s voices and the sound of something being rolled into the living room. It must be the lift.
A few minutes later, Bill’s legs and feet appear before Richard.
“Hey, Ricardo, let’s get you out here. Karina has something for you.” Bill says this with unbridled exuberance, like a parent about to present a small child with a special gift. Oh, goody! A Hoyer lift! Just want I’ve always wanted!
Bill rights Richard’s head back into position against the headrest, and an enormous relief washes through Richard like warm water. Bill wheels him out into the living room. Richard stares at a grand piano in front of the bay windows facing the street where the couch should be. Karina is beaming.
“Wha?”
“I saved it,” says Karina.
“Is-tha-mi?”
“I couldn’t let someone else own your piano.”
He can’t believe she did this. It’s incredibly thoughtful and sweet and well-intentioned, but seeing his piano again, after he’d already said good-bye and made peace with never seeing or touching or hearing it again, turns him inside out, as if he’s just unexpectedly bumped into an ex-lover in the living room, still not over her. He’s all emotion and no words, choked up.
Karina and Bill stare at him, expectant, hoping for joy. He wants to give it to them, searching for a way. He looks at his piano, his beloved, from across the room. He can’t bear for them both to be paralyzed, still, silenced.
“Wi-you play-fo-me?”
“It’ll need to be tuned.”
“Tha-so-kay.”
Karina hesitates. She’s never played his piano. His piano was his. He smiles and sends her a long blink, his version of permission and please. She acquiesces, sits at the bench, hands poised over the keys, and pauses.
She twists around to face him. “What do you want me to play?”
He thinks, his favorites all raising their hands emphatically like eager students who know the answer. Mozart, Beethoven, Chopin, Debussy, Liszt. Pick me! Pick me! Too many choices crowd his head. Karina, sitting at his piano, waits for an answer. She’s waiting to play. She’s been waiting for twenty years.
“Play-me soh-jazz.”
This time, Karina smiles and slow blinks, her version of a nod, a thank-you, and the energy in her gesture is passed between them, a moment of invisible yet palpable connection. She breaks the spell, thinking now, deciding what to play, her eyes scanning upward, as if reading her own mind.
She grins. “I’ll do ‘Somewhere over the Rainbow.’ Bill, you want to sing?”
“Do happy little bluebirds fly? Hell yeah, I’m singing.”
Bill scooches next to Karina on Richard’s bench. Karina begins to play, setting the mood in a prelude before the lyrics begin. Richard expected her rendition to be loungy, predictably ragtime, upbeat and swingy, but she slows it all down instead, dwelling on the notes, adding interesting chords and embellishments, and he’s genuinely surprised. Impressed. Enjoying it. She’s into the melody now, and Bill is singing. Their rendition is restrained and romantic. It evokes a gentle sadness, a fond memory of a lost love. It’s a dreamy lullaby, easily the most beautiful song Bill has ever sung.
Richard listens to Karina play and Bill sing, and instead of feeling grief stricken or jealous that he’ll never play his piano again, he feels strangely happy. He’s setting his piano free, letting it go, sending it off on its next journey without him. Then, as Karina plays the final phrasings and his heart moves with the notes, it occurs to him that it’s not his piano he’s letting go of, setting free.
It’s Karina.