Every Note Played(47)

“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.”