“I have to go.”
“Wi-you-be ba-home-fah spa-ring-brea?”
“I was planning on going to Lake Tahoe with Matt and some friends. But, I dunno, maybe.”
“Tha-souns-fuh. You-sha-do-tha.”
“I’ll probably be here for a weekend in March. I’ll definitely be home for the summer.”
“O-kay.”
“See you then.”
“See-you-then.”
She stands, walks over to him, and with her hand on his shoulder, kisses him on the forehead.
“Bye, Dad.”
As she leaves the room, he wants to reach out and touch her, to wrap his arms around her and hug her tight, to show her with touch what he can’t seem to execute in words, but his hands are even more useless than his voice. He’s plagued with regret and the inability to articulate the apology he wants to give her because of the sweeping scope of it, because his voice production is so damn slow and there are too many and not enough words, because he’s entirely unpracticed with this kind of conversation. As she leaves the room, he thinks about the story of his own father—the one he’s carried his entire adult life, heavy and cumbersome and painful—and wonders what story Grace carries about him. When her boyfriend asks, “What’s your dad like?,” what is her answer? How heavy and cumbersome and painful is her story?
CHAPTER TWENTY-TWO
Richard and Karina are sitting side by side in the small office of Dr. George, an augmentative communications specialist. Dr. George has just spent the past few minutes giving them an overview of who he is and what he does, and he’s jazzed about all of it. He’s probably in his midthirties, pale and thin, wearing metal-rimmed glasses, and is excessively cheerful bordering on goofy, effervescing with energy as if he’s had three too many shots of espresso, but Richard suspects that this is simply how this guy rolls. His sunny demeanor is as unexpected as it is disarming, so unlike that of the many other specialists Richard sees. Not that he can blame the others. Treating ALS isn’t exactly a barrel of laughs.
“So tell me what’s been going on,” says Dr. George.
“Well,” says Karina, “it’s hard to understand him when—”
“I’m sorry, forgive me for interrupting. I’m going to stop you right there. I want to hear straight from the horse’s mouth. Make sense? Richard?” Dr. George nods at Richard, eyebrows lifted, smiling. “Giddyup.”
“I’m-los-ih my-voice an-we-wa-na-know wha-ta-do so-I-ca-still co-mu-ni-cay.”
“Okay, great. I’m a little heartbroken I’m just meeting you now. I wish you’d come in after you were first diagnosed or even a few months ago.”
Richard’s neurologist, who referred him to Dr. George, said Richard was told about voice banking when he was first diagnosed and many times thereafter, but Richard has zero recollection of it. He was in shock when he was diagnosed and then in denial for at least a season. Dr. George’s information was buried somewhere in a packet of other terrifying information he wanted no part of, such as PEG-tube surgery and invasive ventilation and power wheelchairs. Even after he accepted his diagnosis, he didn’t accept that he would someday lose his voice. Some people with ALS don’t. Maybe he wouldn’t. Banking his voice feels like the equivalent of setting up a baby’s nursery or creating a baseball diamond in a cornfield. If he builds a voice bank, he will come to need it.
“I-know-I-ma lil-lay-to the-par-ty.”
“That’s okay. The party’s still going. Even though your voice has lost a lot of its melody and isn’t as robust as I’m sure it used to be, it’s still you. The way you accent syllables, idiosyncratic phrases you might use or even noises you make—your laugh, for example—are all specific to you. By recording these, we can help keep your communications personal and human.”
Richard wonders about the sound of his laugh. Is it the same as it was before ALS? He tries to remember the last time he laughed out loud but comes up blank. His life hasn’t been funny in quite a while. As every other sound coming out of his mouth has changed, he suspects that his laugh is different, too. He tries to hear it in his mind’s ear but finds only silence. He’ll have to try laughing when he gets home.
“Even with the sound of your voice being mostly monotone, you’d be surprised. Even the smallest inflection can convey emotional nuance and personality you just can’t get from the computer-synthesized voice options.”
Dr. George doesn’t have to convince Richard of the value of using his own voice versus a computer-generated one. He understands the breadth of what can be communicated in the smallest subtlety of sound. A single key played on the piano can convey the entire range of human experience. Middle C can be played staccato and fortissimo, a loud and sudden yell! It could mean anger, danger, surprise. The same note played pianissimo is a whisper, a tiptoe, a gentle kiss. Middle C held down, along with the foot pedal, can convey a longing, a wondering, a fading life.
The same note played by a novice versus a master is a completely different experience. What does Mozart’s Concerto no. 23 in A Major have to say? How does it make a listener feel? It depends entirely on who is playing. So, yes, Richard understands.
“I like to think of voice banking as an acoustical fingerprint. Our voices are part of our unique personalities and identities. As you know, with ALS, everything gets taken away. Voice banking is a way we can preserve a piece of who you are before it’s gone.”
Before he’s gone.
“Synthetic speech is flat. That’s the voice Stephen Hawking uses that you’ve probably heard. There’s no musicality in it. Musicality is so important for conveying meaning, you know?”
More than Dr. George knows. Richard’s voice now is a one-note instrument, a child’s annoying party horn. His articulation is indistinct, his once-sharpened consonants filed down to a soft, rounded nub. Even Karina and Bill, familiar and trained in Richard-speak every day, are having a hard time comprehending what he’s saying. His production is painstakingly slow, every syllable hard labor, and he runs out of air every three to four words. He often runs out of patience for what he wants to say before he even begins and then doesn’t bother.
“You can pick and choose what to record. It can feel like a tiresome process, and it does take time. But I promise it’s worth it. Don’t record in the afternoon or evening, your voice and energy will be at their lowest quality. That’s why your appointment today is at four. I want to hear you when your voice is tired. Record in the morning. Make sense?”
Richard nods.
“And we want to conserve your energy. Things like ‘I’m thirsty’ can be the synthetic voice generated by the computer. ‘Thank you so much’ would be better in your voice. You get what I’m saying?”
Richard does, but he can’t think of anything to record beyond Thank you so much.
“Do-you-ha-va liss?”
“We do! You’re so on top of this. Yes, we have a list of ideas to get you started. But there are no rules to this. You can record anything you want. You might also want to record what I call legacy messages. These are longer than a phrase or a sentence and not about the activities of daily living. They can be reflections of who you are or messages you want to leave for the people you love, like your wife.”
Dr. George settles his gaze on Karina and smiles big.
“I’m his ex-wife,” says Karina, correcting him swiftly, the clear tone and volume of her voice leaving no room for miscommunication.
“Oh. Good for you guys,” says Dr. George, still smiling, completely unfazed. “Some people like to record movie quotes, a fun way to inject a little humor into the day. So, like, ‘Frankly, my dear, I don’t give a damn.’ Make it fun.”
Yeah, Richard can record movie quotes while he’s having his Liquid Gold dinner. ALS is a blast. Although the technology is cool, it sounds time-consuming, and Richard’s not sure any of this will be worth it. He has only so much time left.
He often checks the time on his laptop and on the TV cable box many times an hour, a vague and persistent dread ha
rassing him, as if he needs to buy something at a store before it closes soon, or he’s increasingly late for an appointment, or he’s waiting for someone to arrive, the doorbell to ring any minute. Yet, he knows that he has nothing to purchase, no appointments to keep, and isn’t expecting the arrival of anyone at the front door other than Karina, home health aides, and therapists. It doesn’t matter. He still checks the time. Over and over and over.
Every minute that goes by is one less minute. But what exactly is he doing with those minutes? If he weren’t in Dr. George’s office right now, he’d be in the den sipping on a coffee milk shake and bingeing on the next season of House of Cards. He’s squandering his minutes, but what else is there for him? He can’t play piano. He can’t teach piano. He can’t even bear to listen to the classical music he loves unless it’s played by Karina.
He looks forward to the moments in her lessons when she takes over. He’ll notice the antecedent extended pause and imagines her student scooting over, Karina positioning herself at the center of the bench. He stops whatever he’s doing when this happens and waits. She begins playing, showing her student how the piece is supposed to sound and feel, developing the student’s ear.
He’ll close his eyes, and he’s transported into the music. He’s traveling with the notes, feeling whatever Karina feels as she plays, as if he were no longer trapped in his prison cage of a body, flying. Listening to Karina play is transcendent, as free as he’s felt since he was diagnosed. He wishes she’d play more, when her students are gone for the day, just for him.
“Aside from voice banking, there are some other communication aids I can offer you. You’ll want this.” Dr. George produces a round red plastic button from one of his desk drawers, something that a clown might pull out of his prop bag. “It’s a simple call button. So, for example, say you’re choking and you can’t call for help, you can step on this call button, and the receiver end will buzz loudly like a doorbell, and so even if Karina is somewhere else in the house, she’ll be alerted. It’s kind of like a baby monitor. This is a great option for you because you’re still walking. So you can get to the button and step on it. You’re lucky you still have your legs.”
While Richard knows he’s lucky to still have use of his legs, and he’s lucky that he can still talk, and he’s lucky he can still breathe, these kinds of comments strike him as both ridiculous and insulting. But he tries not to take offense.
His legs will soon be leaving him. For the past week, he’s felt a long-distance pause between the decision to take a step and stepping, a loosening of body from mind, of muscle from bone, of intent from action. ALS is extending its evil tendrils south.
Maybe he’s just being paranoid. Maybe he’s imagining the weakening in his right leg, creating a somatization. Maybe it’s psychosomatic. His mother used to tell him, If you’re looking for trouble, you’ll find it. That may be true, but he certainly never went looking for ALS. He knew that Lou Gehrig had it, that Stephen Hawking has it, and was peripherally aware of the Ice Bucket Challenge. That was the extent of his knowledge on the subject, and he wasn’t seeking to know more.
Trouble came looking for him. He was diagnosed fourteen months ago, and paralysis from the waist down, one leg at a time, is what comes next, whether he’s a paranoid hypochondriac looking for trouble or not. But for now, he agrees with Dr. George. He’s lucky to still have his legs.
“An-yah-lu-cky you-still-ha-vyah ki-neys.”
Dr. George laughs, a high-pitched, tickled, unguarded giggle. Richard should record it and use that as his banked laugh. He likes Dr. George. He wonders if George might actually be his first name and not his last, if he’s choosing to be addressed with a title that’s less stuffy and more intimate, like Dr. Phil or like an unrelated friend who goes by Uncle instead of Mr. He’s Uncle George.
“You’re also going to want a bunch of these low-tech alphabet boards and flip charts. I know they’re not as sexy as the eye-gaze and Tobii technology, and you’ll get your sexy on eventually, but you’ll use these first, and they’re actually quicker and easier to use. As his voice goes, or maybe later in the day when his energy is low, you’ll want to use these, Karina.”
Dr. George hands her a stack of charts. Richard reads the tabs: In Bed; Comfort; Transfer and Position; Wheelchair; Computer; Bathroom. Karina opens to the In Bed chart. Richard scans the page.
Raise/Lower Head
Take Arm Out of Cover
Raise/Lower Foot of Bed
Hot/Cold
Take off BiPAP
Adjust Mask
Turn on BiPAP
Mouth Dry/Water
TV and Lights Out
Chap Stick
Pee
Nose/Saline
Nose/Wipe
Scratch My Head
Wipe My Eyes
In bed used to mean something entirely different. Karina turns the page before Richard has the chance to absorb every option. She spends only a second or so on each additional chart before flipping, looking overwhelmed and scared.
“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 t
his, 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.