Every Note Played(60)
And she could blame Richard and his affairs for holding her back. He was wrong and bad, and she was right and good, and she could resent him for her unfulfilled dreams of playing jazz, and this was the perfect excuse, the brilliant smoke screen deflecting anyone who might inspect the situation for the truth. The truth is, she was terrified of failing, of not making it, of never being as recognized and loved as an artist as Richard is.
But then she got divorced and Grace went to college, her excuses literally out the door. With seemingly no one left to blame, she pointed her finger at the hands of time. Too much had passed. Her chance had passed. It was too late.
She watches Alexander on the stage, new to the jazz scene, about her age, and that last pin falls. She can now see that every collapsed excuse she abided to like God’s commandments existed only in her mind. Her unfulfilled life has always been a prison of her own making, the thoughts she chose and believed, the fear and blame, paralyzing her in her unhappiness, telling her that her dreams were too big, too impractical, too unlikely, too hard to achieve, that she didn’t deserve them, that she shouldn’t want them, that she didn’t need them. These dreams of playing jazz piano were for someone else, someone like Alexander Lynch. Not for her.
As she listens to Alexander play, she steps out of the carefully constructed, now-unlocked cage in her mind. She hears him messing with the melody, accenting the ascending chords and varying the phrasing, and she feels the exuberant curiosity in his improvisation, searching for something new, unafraid, and his freedom becomes hers. She sees what’s possible for her if she dares to claim it.
The trio finish their final piece of the night, stand, and bow. The audience is on its feet, applauding, begging for more as the musicians humbly exit the stage. Karina wipes the tears from her eyes in between claps, feeling breathless, cracked open, pulsing with desire, and, although she’s not quite sure how, ready to live.
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.