Amy, the audiologist, has
finished programming Allison's MAP, and there’s some downtime while we wait for
Misha and Pete and the kids to arrive.
“So, are you scared about what
it’s going to sound like?” Amy asks.
Allison nods her head and says,
“Yes.”
“What are you afraid it’s going
to sound like?”
“I’m afraid it’s going to sound
electronic, but also that I’m not going to be able to hear Joy’s real, true
voice. Before, with just the amplification, I was hearing everyone’s true
voice.”
“It’s very normal for it to
sound electronic, that’s your body trying to figure out what it’s supposed to
do with all that sound. I’ve never had anybody say, ‘It sounds electronic’ a
week later, or two weeks later. Usually when we measure the beeps two weeks
later, people say, ‘Oh, that sounds so much better.’” Allison nods.
“What does Joy know about this?” Amy asks.
“I think she knows that I’m
going to hear better, but she was a little upset when we left this morning to
come without her.”
Amy suggests explaining to Joy some
of the ways she can help. “Like," Amy says, "'Always look at Mommy
when you’re talking to her.''”
Allison laughs. “Oh, they know
that. All of my kids – when they were little – would pull my face around when
they wanted to tell me something." She turns her head and she pushes on
her jaw with her hand to demonstrate. “They knew they had to turn my face to
look at them for me to be able to understand them.” Her phone buzzes in her
lap. “They’re here,” she tells us.
I look around me and make sure all
the cords and other crap is out of the way. The room is already getting warm,
what with the four of us, the overhead lights, and all the electronics in such a
small space.
The door is cracked, and when
Misha pushes it open we see the three little ones huddled in front of her.
They’re reluctant to come in, but finally do so with a little encouragement. Tallulah
and Joy sit down facing Allison in two kid-sized chairs that Amy has brought in
from another room. Misha takes the chair closest to Allison, and Pete the chair
next to that. Finn climbs in Misha’s lap and makes himself comfortable.
From her seat next to the intern,
Amy turns to Misha and Pete. “We’re going to start with it turned down low, so
she’s not expected to hear anything.” She turns back to the computer, her hands
on the keyboard.
“Okay," Amy says after a
moment. "It’s on now, and I’m just going to keep talking to give you
something to listen to.” Allison nods. “As soon as you start to hear something,
let me know.”
“I can hear something,” Allison
says.
“What does it sound like –
beeps?”
“I guess so, it almost sounds like the radio.”
“I’m going to keep . . ..”
“I can just hear weird noises,”
Allison interrupts.
“Is it hurting? Is the volume
okay?”
“No, it’s not hurting. I can
hear it pretty good.”
“I’m
going to try turning it up while we talk,” Amy says.
The
room is quiet except for the sound of Amy typing and the drone of the
air-conditioner.
Amy
looks back at Allison. “How are you doing right now?”
Allison’s
eyes open wide and she shakes her head a little bit. “Whoa!” she says, smiling
big. “It’s . . . no, I mean . . . I can hear.”
“Is
the volume too high?”
“No,
I think it’s okay, but any higher I think would be too high.”
“Let’s
leave it here for a few minutes. After that, we’ll see if we can turn it up.”
Allison
nods and Joy and Tallulah shift in their seats. Misha holds up her iphone with
her right hand, taking video (although she knows I have two video cameras
running). Finn relaxes back against her and she wraps her other arm around him.
Pete crosses his arms across his chest. We watch. We wait.
“So
what is it sounding like right now?” Amy asks.
“Like
. . . Star Wars – something weird – little beeps.” She draws her hands together
in front of her, bringing all ten fingertips to a single point, and then pulls
them apart like she’s pulling taffy. At about eight inches, her hands burst
open, her fingers spreading big and wide like small explosions.
“It’s
your brain trying to figure out what it’s getting.”
“Okay.”
“We’re
still a little bit low, compared to where you were at a few minutes ago,” Amy
says, referring to how high the volume was set during the programming of her
MAP. “We’ll have to see if we can turn it up high enough to hear the voices
louder.”
Finn
wiggles in Misha’s lap. He fumbles with his red “New York Mafia” ball cap,
trying to find the perfect place on his head.
“Now
that it’s been on a few minutes," Amy asks, "can I turn it up?”
Allison nods and Amy turns it up. “Getting any different? Any better?”
Allison
shakes her head.
“About
the same?”
Allison
nods.
“How’s
the volume?”
“Fine,”
Allison says. I try to read her expression. I wonder if she's frustrated that
she's still only hearing beeps and not words – no language of any kind – but I
can't tell.
“Would
it hurt if I turned it up a little? Can I try turning it up?”
“Yeah,”
she says.
“How
are you doing with the way that it feels?”
“It’s
fine.”
“It
doesn’t hurt or anything?”
Allison
shakes her head.
“Very
good. Are you hearing voices with the beeps?”
Allison
shakes her head. “I thought I did,” she says, “but . . .." She tilts her
head just a little and looks past me to the wall, concentrating. "No, it’s
just the beeps.” Allison's voice sounds like it does when she can't hear
anything – louder than her usual speaking voice, and more monotone.
“The
reason why you might hear a beep instead of a word," Amy says, "is
because you’ve got so much new information, and your brain is trying to piece
it all together – this entire conversation, everything. And when we talk, the
pitch changes very rapidly."
Amy
is understanding and empathetic, reassuring and enthusiastic – all at the same
time. Her voice reflects this, her tone upbeat and encouraging.
“So instead of just talking," Amy
continues, "I’m going to make some very small sounds. Instead of words,
I’m going to have you listen to very short, individual sounds and then after a
few minutes I’m going to see if you can tell them apart.”
“Ok.”
Amy
turns toward the girls, leans out of her seat a little, and reaches behind
them. She pulls a laminated piece of paper out of a drawer. Printed on it are the
words ‘mmmm’ and ‘sssss’ and ‘eeee’ and ‘oooo’ and ‘aaaah’ and ‘shhhh’.
“Just
listen," Amy says to Allison, "while I point to the sounds.” The
reason for doing this, she explains, is so Allison knows what she is supposed
to be hearing. In a sense, Allison is telling her brain, “You know that noise
you’re hearing? It’s supposed to sound like ‘mmmm.’” In
her slow, deliberate speaking voice, Amy goes through the list, articulating
each sound as she points to the letters on the page. Allison’s lips press together
in a tight, closed smile. Dimples appear of either side of her mouth.
When
Amy finishes with the last sound, Allison says, “I can hear that! Weird!”
“What
did they sound like?”
“I
mean, they sounded like ‘mmmm’, ‘ssss’, ‘eeee’, ‘ssss.’ I got it through all
the beeps.” Allison keeps pulling her big grin back into a tight smile, trying
to rein in her visible excitement. I keep my gaze fixed on my camera's display
screen, so I don't see everyone else's reaction, but I can feel it. We're all
excited.
“I’m
going to say them again,” Amy says, “but this time I want you to tell me which
one you hear.”
“Ok.”
Amy
reaches behind the girls again, this time for a wooden embroidery loop with a
piece of thin black material stretched across it. Allison looks at me and half
mouths, half whispers, “It’s weird!”
“Let’s
try this,” Amy says, holding up the embroidery loop, “so you can’t see my mouth.”
The loop acts as a screen and prevents Allison from lip-reading. Amy holds the
laminate in the other hand.
“You
ready?” Allison nods and looks down at the page as Amy says, ‘shhh.’ Allison
cocks her head, scrunches up her eyes and forehead in a pensive, almost puzzled
way.
“Shhh?”
“Very
good!” Amy says, giving her a thumbs up.
Amy,
“Mmmm.”
Allison,
“Mmmm?”
“Awesome!”
Amy says. “Eeee.”
Allison,
“Eeee?”
“Perfect!”
I
pan over to my parents. It’s been so quiet I forgot for a minute about everyone
else in the room. Misha’s still holding up her iphone, still has her left arm
wrapped around a very slouched Finn. She’s trying not to cry, but she’s crying
anyway. Pete’s smiling, looking a little dumbfounded.
Amy
and Allison keep going back and forth, but when Amy gets to ‘ssss’ Allison
says, “shhh?”
“Close,”
Amy says. "Listen again: ‘ssss.’"
“Eeee?”
“No,”
Amy says, “you were closer the first time.” She points down at the laminate.
“It’s ‘ssss.’ Listen to these two,” she says. She alternates between the ‘ssss’
and the ‘shhh,’ pointing as she does.
“Can
you hear the difference?”
“Yes,”
Allison says, “they sound different.”
Amy
starts the process over again, going through all the sounds on the laminate.
“Are
you starting to pick out more words,” Amy says, referring to the conversation,
“or is it all still beeps?”
“It’s
still . . ..” Allison moves her hands like little explosions, like she’s
crinkling or crunching paper, sticking her tongue out the side of her mouth in
a silly face. “It sounds like R2D2! I’m not kidding! It must have been where
they got that.”
Amy
points back down to the page of sounds. “Do these sound better?”
Allison
gives her a tentative yes. “Well, I mean, since I know what I’m looking for, I
can make it out between all the other noises.” Amy wants to turn it up and
Allison says that’s fine. Amy turns back to the computer and intern.
We
wait.
“Ok?"
Amy asks. "Any better?”
Allison’s
face lights up. “Yes! I can hear your voice now!”
“Does
it hurt?”
“No!"
“Can
I go up one more?”
“Yes.”
Amy
turns it up. “How about now?”
“Yes,
I’m starting to be able to hear your voice.”
I
feel Allison relaxing. Or maybe it’s me relaxing. Either way (or both), it’s
like the room has a release valve and it's been opened, the tension beginning
to dissipate.
“So,
what’s it sound like?” Amy says, “Still robotic?”
“I
can still hear the beeps . . ..”
“.
. . but there’s a voice in the middle of it?” Amy cuts in.
Allison
nods. Big grin.
“Do
you think we could try some single words?”
Allison
says sure, but then looks at me and Misha and Pete. She pulls her mouth into a
tight grin and makes a face that reads: I'm only pretending to be worried.
“Ok,
let’s do that,” Amy says. “I always like to have people listen to food words
first because they’re really easy.”
“Ok.”
“Then
I might have someone else here say some too, ok?” The two girls smile up at me
as Amy reaches into the cabinet behind them.
“Hey,
Joy!” Allison says during the pause. Joy smiles and looks down. “Can you say
something to me?” Joy shakes her head. “Why not?”
Amy
interjects: “Mommy needs to hear your voice to see if her ears are working.”
“Tallulah," Misha says, "do
you want to say something?” Lu nods. “What do you want to say?” Now Tallulah
looks down and smiles and leans into her cousin.
“I
know Joy’s going to say something soon,” Misha says. Another big head shake
from Joy. Then Lu says, “Hi!”
Misha
turns to Allison. “How does my voice sound?”
“Good.”
“So
you can hear my voice?”
“Yes!”
Allison says, her one-word response increasing in pitch toward the end, for
emphasis, like she's trying to convince Misha that her implant is really
working.
“Not
just lip-read?” Misha says.
“That’s
not fair!” Allison laughs, and we laugh too. More tension escapes.
Amy
tells us that Allison’s going to have to relearn everyone’s voice, "So
just make sure you’re looking at her and you give her the topic of
conversation."
“Of
course,” Misha says, “just like we always have." Misha looks over at the
girls. “Joy, you decide when you
want to say something. You don’t have to say anything right now – whenever you
want to.” Joy hides her face in Lu’s neck this time, and Lu turns toward her.
“But
you’re going to have to say something to your mama!” Lu says.
Misha
says, “Finnegan, do you want to say something?”
“Don’t
want to,” he mumbles.
“Hi,
Finnie!” Allison says, reaching over to poke his exposed belly.
Pete
threatens to give everyone the claw – his signature tickle-move that never
fails to everyone rile up – and Misha says, “We don’t want to all get wild in
here!”
Amy
suggests to Joy that she help her practice with her mom. “Like you’ll do at
home,” she says.
It’s
really getting hot in the room now and Misha hands Finnegan over to Pete and starts
fanning herself.
“I’m
going to show you some words,” Amy says, “and you’re going to practice
listening to them while I point. Then I’ll cover my mouth and see if you can
identify them.”
Allison
nods.
“This
would be a good way to practice at home. Take a notebook, just a real
inexpensive one, and write ten to twenty words to page, then listen to
different people say those words. Start out one word at a time, then put them
at the end of sentences.”
“We
made a notebook for her when she first lost her hearing,” Misha says. “We put
all the pictures of the house and the family in there because she was beginning
to lose her speech. I wish I still had that.”
“You
probably do,” Pete and I say at the same time.
“That
book?” Allison says. “I have it. It’s in a box in a closet.”
"Is
it here, in Austin?" I ask.
“Yeah,”
she laughs, “but there’s a lot of stuff in front of it.”
Misha
picks up where she left off. “One of my friends made it [the book] for her
because The John Tracy Clinic suggested it.” Misha goes on to recall how
Allison began dropping her consonants. “I remember, she wanted to say something
was yucky and she said ‘yooey.’”
I'm concentrating – following
the conversation, keeping track of how much time I have left on the tape, monitoring
the sound levels – so I don't comprehend the weight of what my mother is
saying. But now, as I review the tape, I’m stricken by it. I think of Finn, my
three-year-old. I think about how I listen and laugh at his silly words and
expressions, how I follow his language acquisition, how I take for granted that
his sometimes-indecipherable words will begin to take shape and he’ll keep
learning new words, new phrases. With a sinking feeling, I realize how
devastated my parents must have been: knowing what was happening to Allison – having
to watch her struggle – and not being able to explain it to her.
"I remember the first new
word Allison learned," Misha says. “It was 'rosin.' We were out by the
tree and she wanted to know what the gooey stuff coming out of the tree was. I
said, 'rosin,' and she said, 'rosin?'”
“Wait a minute,” I say, “I
thought her first new word was Stephanie.” Allison and Pete concur. We pretend
to gang up on her, tell her she’s changing her story, our conversation really
relaxed, really flowing.
Amy has finished making a list
of food words, and starts in with milk, cereal, coffee, eggs. Allison listens as
Amy says and points to each word. Rice, orange juice, peanut butter.
“You might need to turn it up,”
Allison says, “Your voice is getting lower than the beeps.”
Amy explains that there are two
different things she can do to make it louder, and if the first doesn’t work,
she’ll try the second.
After the first adjustment, she
looks back at Allison. “Did that make any difference? Or not a lot?”
Allison shakes her head. Amy
turns back to the computer, tries the second thing.
“That's better," Allison
says.
“Let’s listen again.” Amy
begins repeating the words and Allison listens. When she finishes, she says, “Okay,
now I want you to tell me what you hear.”
“Ok.”
Amy holds the paper in front of
her lips and they go through the words on the page. Allison gets every one on the
first try, except for ‘coffee.’
Amy repeats it, her mouth
covered. “Coffee.”
Allison thinks about it.
“Coffee,” Amy says again.
Allison shakes her head, and Amy pulls the screen away from her mouth. “It was
coffee.”
Allison laughs. “I thought you
were saying ice-cream!”
“But you got the two syllables,
that’s good!”
Now Amy wants to turn off the
implant entirely and then turn it back on at full volume. She explains to
Allison that since she’s been increasing the volume incrementally, she wants to
make sure that when Allison first puts it on, it won’t hurt.
Finn is sitting in Pete’s lap
and Joy stands up and turns Finn’s cap around backwards. He pulls it back
around the right way.
Allison turns to Misha and
Pete. “When’s the last time I could do that?”
“Not for a long time,” Misha
says.
“Never,” says Pete.
“I know!” Allison says.
“How do our voices sound,”
Misha asks.
Allison reminds Misha that Amy’s
turned the implant off, but assures her that their voices were getting better a
minute ago.
“That’s pretty fast,” Amy says,
“to do that. That’s very good.”
“Yeah, I know,” Allison says, smiling
and nodding her head to a pretend audience, mouthing ‘thank you, thank you.’
“Well,” Misha says, “she’s
pretty smart, if that has anything to do with it.”
“It does, it does,” Amy says.
“The brain has a whole bunch to do with it.” Then to Allison, “Ok, you ready?”
“Yes.”
“If anything hurts, tell me.”
“Ok.”
“It’s back on. Does it hurt?”
“No.”
Amy explains that when Allison
goes to put her headpiece and processor on, it will make a funny sound at
first. “It will be a little bit much,” she says, “but then it will calm down.”
With the components working
well and the volume set, at least for now, Amy returns to Allison's homework.
“This is how I want you to practice at home. If you can get each word by itself
without looking [without lip-reading] – if you can get the words right on the
first try 80% of the time – then try some different words. Or, you can practice
trying to hear these words at the end of sentences. That’s the next hardest
place to hear them.”
“Alright.”
“You don’t want to put them in
the middle of sentences, or at the beginning, quite as fast. It’s a process,”
she says, revolving her hands around each other in a circular motion. “Let’s
try these at the end of a sentence, see how you do.”
“Maybe Joy can help,” Misha
says. Then looking at Joy, “You can say, ‘Mommy, give me the milk. Lula can
say, ‘Give me the bread.’ Finn can say, ‘Give me the coffee.’”
“That’s a good idea!” Amy says.
“Do y’all think you can help?” Finn mumbles, “Don’t want to,” but the girls are
excited.
Pete pipes up. “I can say,
‘Give me the money!’”
We all laugh and Amy leans in
close to Joy. “How about I whisper it in your ear first, then you say it?” Amy
holds the paper up to block Allison from looking and whispers to Joy, “Why
don’t you say, ‘I want an apple.’”
Joy looks at her mom. “I want
an apple.”
“You want an apple?” Allison
says.
Smiles and giggles as Amy gets
the screen for Joy to hold in front of her mouth. Amy whispers to Joy, “Make
some coffee.”
“Make some coffee,” Joy says.
Joy repeats it with the screen
in front of her mouth.
“Some coffee?” Allison says.
“Good job,” Amy says, giving
her a thumbs up. “She said, ‘Make some coffee.’”
Allison nods and repeats the
sentence. A childlike giddiness rises up in my chest and I wonder if Allison's
feeling the same thing.
Tallulah’s turn. Amy leans in
and whispers to her.
Lu says, “Where’s the orange
juice?”
“I can’t hear her voice,” Allison
says, touching her ear and looking around the room. “It’s so soft.”
In a much louder voice, Tallulah
says, “Where’s the orange juice?”
“Some orange juice?” Allison
asks.
“Good job!” Amy says. “She
said, ‘Where’s the orange juice?’”
“Where’s the orange juice,”
Allison repeats.
“So the goal of that is to get
the words at the end.”
Allison’s phone dings,
indicating an incoming text, and she looks down. Misha encourages Finn to
participate, asks him if he’d like to say something. He mumbles, “Don’t want
to.”
“So Allison,” Amy says, getting
her attention. “Do you think it’s loud enough or do you want it turned up?”
“Of
course, you know me,” Allison says, “I like it turned up!”
“Okay, we can have different
programs, then – two loud and two soft. That way you’ll have room to turn it up
if you need to before our next appointment.”
“Ok.”
“And you’ll see both of them on
your remote control,” she says, referring to the two programs. She hands
Allison a little, white remote control. Amy explains that she’s going to turn
Allison’s implant off to set and save the programs, and that she won’t hear
anything for a few moments.
We marvel at the fact that
she’ll have, essentially, a remote controlled ear. We make jokes about her not
losing it. “You’ll have to have a second one,” Misha warns, “a backup.” She
turns to the girls. “Joy,” she says, “she could hear what you said, and you
too, Tallulah, once you spoke up! But you still have to look at her when you’re
talking to her.”
“What did Joy’s voice sound
like?” Amy asks.
“Ok,” Allison says, “I mean . .
..”
“You were worried about that.”
“Yeah, it’s actually . . .
amazing.” she says. “I don’t know what to say! I can still hear all the beeps a
little bit, but the voices are really coming out.”
“Maybe the beeps will go away,”
Misha says. “Or you’ll learn to ignore the beeps.”
Amy is working on the programs,
facing the computer, but she's following our conversation at the same time.
“Probably be gone by next week,” she says.
“Well, you know,” I say from
behind the camera, “I mean, think about how we hear –we automatically filter
out the background noise.”
“Yes,” Misha says.
“Yes,” Pete agrees, “I do know
that.”
“It’s just our brain doing
that.” I make an effort to sound authoritative.
“So her brain will start to do
that too,” Misha and I practically say at the same time.
Pete jokes that his brain often
confuses human voices with background noises and admits to conveniently
filtering out what he doesn’t want to hear. I assure him that Rob has that same
filter.
“It’s a man thing,” Misha says.
“A selective filter,” Pete
says.
So, I think, the dust has
settled. We’re back to our normal patterns of conversation. Our familiar,
everyday selves step back into the room. The characters we play re-inflate to
their usual sizes.
The worried, anxious part of me
is satisfied.
At least for now.
** Coming up next: auditory hallucinations and hardware
demonstrations.
