Every Note Played(49)
“I know it can feel a bit like being on a game show, and this kind of intense listening can feel awkward and frustrating at first, but you’ll get good at it. Ask yes-and-no questions or point to what you’re asking. Richard, when you can no longer speak, as long as you can nod and shake your head, great. If you can’t move your head, you’ll blink for yes and do nothing for no.”
The same message is printed at the top of every chart: You have to keep looking at my face and DON’T guess please! Richard wonders what happens if he can no longer raise his eyebrows or blink. What happens if his face can’t offer any clues? He doesn’t ask.
“Okay, I know this was a lot. Only a couple more things, then you’re good to go. You’re going to love this.” Dr. George retrieves something from a box under his desk. “It’s a head mic and voice amplifier. We’re going to turn Richard’s volume way up. Super-lightweight and easy-breezy. Here, try it.”
Dr. George hooks one end of the microphone over Richard’s ear and bends the wire so the tiny mouthpiece sits in front of his left cheek.
“Try saying something.”
He feels like a rock star in concert. Madonna comes to mind.
“Sss-tri-ka-pose.”
Dr. George stands up and vogues. “Isn’t that great? It can amplify a whisper and make what you said audible. It’ll save your energy by a lot. Our goal is for you to be fatigued from talking after four hours instead of two.”
Richard’s fatigued after talking for five minutes.
“Okay, so you have the call button and the voice amplifier, the alphabet and flip charts, and here’s the voice recorder for you to use.” Dr. George hands the recorder to Karina. “Each file you create is automatically saved in the format we use to build your bank. You don’t have to do anything but hit RECORD. It’s not voice activated though. You have to turn it on and off by pressing here, so Karina will have to help you.”
Karina holds the recorder out in front of her with both hands as if she’s been given something fragile or dangerous or sacred. Maybe it’s all of those.
“Okay, that’s all I have for today. Please contact me with any questions at all, and come back to see me as things change. And I’d say if you’re going to bank your voice, do it now.”
The change in Dr. George’s voice in that last sentence was subtle but unquestionable. The key was slightly lower, the intonation narrowed, and his articulation crisper. The sound of a spoken sentence can add layers of meaning beyond the mere definition of the words strung together. Dr. George’s last sentence was a rich concerto, and Richard clearly heard the subtext.
You don’t have much time left.
CHAPTER TWENTY-THREE
Dear Dad,
I’m writing to let you know that I’ve been diagnosed with ALS (Lou Gehrig’s disease). Both of my arms are paralyzed, I’m having difficulty breathing and talking and swallowing. I can no longer safely eat food, so I have a feeding tube in my stomach. I can still walk, but this, too, will go. Despite all of these losses, I’m mainly in good spirits. Because I could no longer manage living alone, I’ve moved back in with Karina, where she and a wonderful team of caregivers help me get through the days and nights. Just wanted you to know.
Your son,
Richard
This is the simplest of the nine letters he’s composed, saved, and not sent to his father. He reads it again. Nothing but straightforward information. Just the facts, ma’am. He wrote the first draft of this letter back when he still had use of his left arm, when he still lived alone on Comm Ave. and spent his days and nights obsessively playing Ravel’s Piano Concerto for the Left Hand. That was this past summer. He can’t decide if August was a lifetime ago or yesterday.
After Bill leaves him showered and dressed and fed, he spends his mornings at the computer. He’ll scan the news, but he’s conscious not to spend too much time surfing these treacherous global waters. War, terrorism, nasty politics, racial tensions, murders, ignorance, blame—the news either frustrates, angers, or depresses him. He has enough to be frustrated, angry, and depressed about.
He invariably finds himself using this time every day to write and reread the letters he’s written to his father. Periodically, he edits his “coming out” letter, updating the list of losses to keep it current, just in case he should decide to send it someday. He added the part about the feeding tube just after Christmas.
He reads the letter again. Pointing the tip of his nose to FILE, he pulls down the menu, then points his nose to PRINT and hovers there just shy of long enough for the computer to register a click before turning his head to the right, his nose aimed at the window, disconnecting the cursor from his mouse target. A game of printing chicken.
He has no idea if his eighty-two-year-old father has an email account, so sending him anything would require actual paper, an envelope, and a stamp. If Richard’s ever going to print and mail any of the letters he’s written, this would be the one. Unlike the other eight letters he’s composed, this disclosure contains no blame or indignant rants. He’s almost printed it many times, flirted with the fantasy of his father holding the envelope in his hands before opening it, but Richard’s heart gets all twisted as he hovers the cursor over PRINT, and he bails.
Part of him doesn’t want his father to know. Keeping his diagnosis from his father fills Richard with an exhilarating sense of winning. He was born into a father-son game he never wanted to play, the rules still cruel and incomprehensible to him, but damn it, he’s going to win. He’s living with a disease that shaves off another layer of control every single day. Possessing control of whether his father knows or not puts a sword in Richard’s hand, a power that’s too seductive to resist. He’s going to prove, in an ultimate and final test, that he doesn’t want or need his father for anything and wouldn’t turn to him for help or love even in the most dire circumstances. He won’t give his father the satisfaction of knowing he’ll soon be rid of the son he never wanted.