Moonlight Sonata: Deafness in Three Movements (2019) - full transcript
Moonlight Sonata is a deeply personal memoir about a deaf boy growing up, his deaf grandfather growing old, and Beethoven the year he was blindsided by deafness and wrote his iconic sonata....
I never thought
I was in the fashion business.
If someone said,
"Are you a fashion designer?"
No, I hate fashion.
Fashion has to be desirable,
and Ralph sees that.
I think it's important
people express who they are.
Mom, are you--
Is it filming?
Uh, now. Yep.
Is this still okay?
Pssssst...
Jonas.
When my son Jonas was born
doctors told me he could hear.
Hey! Jonas, look at this.
Want to walk over here?
Family genes have a way
of arriving unannounced.
They might skip
a generation or two.
But often they catch up.
Around the time he should've
been learning to talk,
Jonas' voice was the first
clue.
H-- Hello. Hello.
Hello.
? Hello to the trapezoid?
Hold on. Hold on.
What's that one?
- What is it?
- Apoctagon.
Yeah, it's the octagon.
? Hello to the octagon?
? So glad to see you?
What else
should we say hello to?
Hello...
- To what?
- Hello...
To the piano?
Piano? Can you say piano?
? Twinkle, twinkle little star
?
? How I wonder what you are?
? Up above the world...?
? Twinkle
twinkle, little...?
? How I wonder what you...?
Where's the cowboy?
Cowboy. Very good.
30-35 in the left.
Where's the football?
Every month we would get
a new hearing test.
Not sure on that one.
Sound was slipping away.
Sss...
Sss... Sss...
Letters, entire words,
were disappearing.
Sss...
No, I don't believe that one.
Could you play 115 decibels
through the right insert?
And he's not even
acknowledging that.
? ...that shiny ring
won't shine?
? Daddy's gonna give you
some fishing line?
We tried hearing aids to amp up
what little was left.
? Daddy's gonna show you
a hummingbird?
This deafness?
It's a hand-me-down.
I can hear. And so can
my brother and sister.
But my parents,
both of them, are deaf.
They adapted well
to the hearing world.
Our world.
And they gave us things
they couldn't enjoy.
Music lessons.
Record players.
Movies.
In return,
we were their interpreters.
We were their ears.
Jonas was my first child.
And now Mom and Dad had my
back.
Okay. Okay.
Mommy.
Daddy.
Kiss.
A year before he was born,
Mom and Dad had surgery
to get cochlear implants,
devices that would allow them
to hear.
But their brains were so shaped
by a lifetime of silence,
that when they finally
heard sound...
Okay.
...it turned out
not to be that meaningful.
And this is 2000 hertz.
80.
90.
95.
100.
105.
110.
When he turned four...
the audible world for Jonas...
finally closed shut.
So Jonas, tomorrow
night we're going to have
a happy birthday dinner
for Nana.
We're also going to have
a happy surgery dinner for you.
So what should
we have for dinner?
Well, what else?
Why are you getting
a cochlear implant?
Is he going
to put it in your mouth?
Oh. But-- But Jonas,
you're going to--
Jonas, you know you're going to have to go to sleep.
Did you know that?
Shh.
Who else
has a cochlear implant?
You see it?
Can you feel it?
Here, feel up here, honey.
The magnet's right in there.
No. What goes
on your eye is glasses.
What went back here
is an implant.
Okay.
Okay. Okay, buddy.
Okay.
Okay.
It looks pretty clean, huh?
I learned from
my parents' experience,
it would take a lot of work
to learn how to hear.
- But Jonas had an advantage.
- See that?
He was young.
Maybe the battery's low.
What does it sound like, Jonas?
That's what happened.
At first,
the world of sound came at him
in a storm of beeps
and unintelligible clicks.
Sss...
- Sss... kunk.
- Skunk.
You did it! Whoa! All right.
- Tell me what you are.
- An astronaut.
And why do you need boots?
That's because, um,
the ground is so hot that I can't even step.
Where? On Mars or the moon?
Um, on-- on Mars.
Slowly,
he started to understand sound.
And this is the countdown.
That's the countdown, right there.
His voice changed...
because he could hear it now.
He got his words back.
I see. What does
the countdown sound like?
Five, four, three, two, one,
zero, blastoff. Just like that.
And that little boy who used to sing "Twinkle, Twinkle,
Little Star"?
He was getting music back, too.
Whoo!
Jonas told us he wanted to take piano lessons.
So our very first performer has had five lessons,
and what an adventure.
His piano teacher Colleen helped him distinguish a C from a G.
And when a note
sounded sharp or flat.
It got messy sometimes.
But all that music was helping
Jonas navigate sound.
Say the word "wreck."
- Wreck.
- Say the word "waste."
- Wist.
- "Knee."
- Knee.
- "Camp."
- Cap.
- "Fresh."
- Fresh.
- "Fair."
- Fair.
Okay.
This time it's going to sound like there are a lot of other people
talking in the room. A lot of other conversations happening.
Just do your best to--
Is it-- Is it going
to sound like "blah-blah-blah"?
Yeah. Kind of.
- But you have to pick out the words in all that blah-blah.
- Okay.
Okay, here we go.
We wanted to stay
at Cassie's tonight.
We wanted to stay
at Cathy's the night.
He checked out three books
from the school library.
He checked out s-- School--
School books or three books
from the school library.
I forgot to put my lunchbox
in the classroom.
I forgot to put my lunchbox
in the classroom locker?
Okay, wait.
It's just interrupting me.
I can't--
When Jonas was 11,
he told his piano teacher
he wanted to learn a piece
he had fallen love with...
the Moonlight Sonata.
Her first response was
to tell him it was too hard.
She gave him other pieces,
but he wouldn't practice.
So he went online and
found the sheet music for it.
Beethoven wrote the Moonlight
Sonata when he was going deaf.
Some people call deafness a cosmic mistake in our human condition.
But how could this be a
mistake?
Where did Beethoven
find this melody?
Where did he find his voice?
Eventually, Jonas' teacher relented and
agreed to teach him the Moonlight Sonata.
They set a goal for him to play
a recital in seven months.
Oops.
Sorry.
Have you practiced
a lot this week?
- Yes.
- Okay.
Like I said,
Beethoven doesn't want you to put a retard at the end.
He wants you to keep the tempo
exactly the same.
And he said
"Sonata kind of like a fantasy."
That's wrong, Jonas.
It's a D sharp right there.
You're playing a D natural.
Right here.
I want you to stop.
This is one of those measures we talked about.
My God.
- Let me get a red pencil.
I was doing so good!
No, you're not doing well
if you're playing a wrong note.
It was--
That was my first mistake.
Bring out these notes.
Yeah. Okay. That's one.
Two.
That's close.
Oh, yeah. No.
Okay, now start-- You can start there and keep on going.
Now I've, like,
forgotten everything.
Keep going.
- Zero! Zero!
- No, no, no!
That's what happens when you don't correct your mistakes.
Your mistakes become the music.
Sorry, Jonas.
Open!
Open!
Colin! Col!
Jonas is my only deaf child.
- His two brothers came later.
- Mom!
They can hear.
Stay with him. Stay with him.
Pass right here. To the wing. Good.
Strong, hard passes, guys.
Hard passes.
- Nice!
- All right, Jonas!
Hello.
No.
Now we all live just down the street from Mom and Dad.
No.
Wait, what?
My name is...
I'm deaf.
The implants just help me hear.
But without the implants,
I'd be deaf and the implants are a part of me.
Well, kind of.
Technically, they are, but...
Where do I put them?
Like, there?
I can't hear you right now.
So I can only, like, talk. But, yeah.
And then... what
does it feel like right now?
What does it feel like right now?
Okay, I'm glad I, like, understand that.
It feels pretty much
like I can't hear anything.
I barely even know
what I'm saying
'cause I know what I'm saying
'cause I know how to talk.
But, like, I can't hear myself talking,
so that feels a little bit weird, but, like...
I really don't know, like,
what I sound like when I'm talking right now.
I feel like I'm, like,
a little bit fast or a little bit slow, but like... yeah.
- Can you feel--
- Yeah, I can feel...
If I put my hand here,
I can feel the vibration.
I can't really hear anything,
but I go like--
Probably can't hear that or if I go "Ohhhhh,"
I can, like, barely hear that.
I can hear really low sounds. I can,
like-- It's, like, not really much hearing.
Like, if I produce a really low
hearing sound,
it just, like, basically goes
through my... vocal box.
So, like,
I can hear a really big vibration that sounds like sound,
but it's actually just a vibration,
so I'm probably not hearing anything right now.
Oh!
Oh, good combo, good combo!
Oh! G.G.!
I'm right here. I'm right
here. I'm in front of you.
Oh, my God! Bad, bad, bad!
Help me! I'm so scared.
Look at this! Look at this!
High-five over the phone.
So, like, do you want
to be Hamilton or Aaron Burr?
Three, two, one, go.
? Pardon me,
are you Aaron Burr, sir?
? I'm Alexander Hamilton
I'm at your service, sir?
? And I'm just like my country?
? I'm young,
scrappy and hungry?
? And I'm not throwing away
my shot?
? A scholarship
to King's College...?
What time is it?
- Showtime!
A lot can
happen in two generations.
Most deaf people couldn't even get car insurance until the 1950s.
Dad got his driver's license at 14 and he
saw it as a sign that he could do anything.
When he finished graduate school,
Dad's parents gave him a new red Ford.
He took my mom out
on dates in it.
Dad became an engineer,
an inventor, my father.
And our family
was everything to him.
Papa was a scientific,
technological genius,
'cause he invented
the first FaceTime, kind of.
It was called the TTY.
Kind of like texting.
So, like, you could text
with a typewriter
and you could send a direct message to the other typewriter.
Except black and white and
the graphics were, like, lower.
The thing is, when my
grandparents were young,
I've learned about some of their history,
because I've seen a few movies.
They just kind of, just, like,
played with their friends, they didn't talk much.
I can't say that's boring
because that's, like,
the 20th century.
He made
movies about us all the time.
And he gave me my first camera.
He taught me
how to take pictures.
And tell stories.
I know that
would be their life for them.
So they would-- They would have never
known our life of all this technology and stuff.
Okay, I'm going
to turn it on. Are you ready?
What are you doing?
I got my first implant
when I was four or five.
Oh!
And then I got my second one
when I was eight.
Or nine.
Music class.
I've had more experience hearing things than not hearing things now.
But my grandparents,
they've had more experience not hearing things.
And that's not
going to change 'cause
you don't live to be 120.
We want to welcome you to the 2017 Ainsworth Talent Show.
Eventually,
Dad found his voice.
But I would never wish
upon Jonas
what it took him
to get there.
I know silence gave Dad...
gave all of us... something valuable.
And that's the deafness
I've always known.
Now, I wondered if my son
would ever know it too.
It's like you can
almost hear the first note.
Wait, listen.
That's like Beethoven.
When Beethoven didn't actually hear,
he heard it in his head,
just like you are right now.
But now play it
the way Beethoven wrote it.
Did you hear
what I said?
Tell me what's going on. Did you
have a bad day at school?
- Wait. Tell me.
- No.
- A good day at school?
- Yeah.
So you're just-- You're just being hyper and naughty.
- Naughty.
- You're naughty?
Okay, now be good. So I can
give you an O for your lesson.
I'm going to start
putting it in writing now.
I think you're at about an S.
Let's see if you can work your way up to an O.
And an Altoid.
I was thinking a little bit
about this piece
and where Beethoven was
at the time when he wrote this.
The deafness had started affecting him for already a few years.
The anguish in it, even the humiliation,
of being who he was and then going deaf.
He felt isolated and solitary and maybe misunderstood by people.
He had been to every doctor.
His hearing was probably never going to get better.
It was only going to get worse.
May I please
have an Altoid?
Yes.
Thank you for asking.
Open.
Touch, touch, touch, touch.
Do I get them now?
Oh, man. Are your hands clean?
- Yeah. No.
You're--
- Can I just have the whole thing?
You know,
you're an imp.
Hello, I'm Jessica.
No, we haven't met yet.
So it's nice--
I'm a genetic counselor.
Have you been told anything about your test results?
Oh, okay.
It appears that
they found an answer
that seems to explain
the cause of your deafness.
Right?
They found some changes in the instructions in this gene.
Mm-hmm.
Mm-hmm.
This gene explains less than one percent of all childhood deafness.
Maybe half a percent.
So it's rare.
So a gene is
a really long string of letters
and it has to be
spelled just so.
And what they found is that in
your both copies of this gene,
you have a spelling change.
Two variants were identified in the T-M-P-R-S-S-3 gene.
Which may be the cause
of your patient's hearing loss.
- And that was the conclusion.
- Okay.
So I think of it often as a spelling error or a "typo."
Mm-hmm.
Say that again.
I'm sorry.
We all have
some defective genes.
- Yeah.
- Or...
You know,
the way they call it-- the "technical" name--
they call it a variant.
Variant.
The term, you know,
we learned in school is "mutation."
The outcome, the end product,
doesn't perform as-- as we typically expect.
Even though deafness passed through my family's genes,
I never really thought of deafness as a medical condition.
It just shaped who we were.
Like Jonas,
Mom wasn't born deaf either.
My grandmother once told me when
Mom was a little girl losing her hearing,
she was so locked in her thoughts,
unable to understand or be understood,
she would bang her head on the floor,
trying to get what was inside of her out.
Mom's mother, my grandmother,
was a professional pianist.
Mom used to sit under her piano so she
could feel the vibrations when she played.
In our family, music got passed
between generations too.
After this...
Jonas' other grandfather,
John, also plays the piano.
Okay.
He's the one who first introduced Jonas to Beethoven's music.
Right hand. Right. E.
When I was ten years old,
it would be easy.
Like that. Right.
Why don't you come over here?
Let's talk about the piece away from the piano.
I thought you did a great job of not being too loud. Okay?
- Mm-hmm.
It was like what we've talked about before
when somebody kind of whispers a little bit.
You-- Your ears perk up.
You want to hear what they're-- they have to say.
Like the right hand says, "Da, dum."
And the left hand goes, "Bum, bum."
And then the right hand interrupts and says, "Shush."
"Da, dum."
You're expressing emotion because they don't give you a story.
It's not like a book.
They give you
kind of an emotional story,
so when you, you know,
play it a certain way, we're going to say,
"Oh yeah, I understand
what he's trying to say there."
There's moments
that are almost sacred to me.
And there's a few measures in
here that are very sacred to me.
This right here. When this is played,
Beethoven had big emotions.
They were very deep emotions.
And so sometimes when he...
he feels good, or he resolves something,
it's more special because you
know how far down he went.
Okay.
Whenever you find yourself
profoundly moved
by something or profoundly sad,
the composer you're most likely
to turn to will be Beethoven.
There's just something
elemental that's in his music.
It's not pretty, you know,
for prettiness' sake or anything like that.
It's just the depth of human experience
from the really awful to the really exalted.
So when you hear a piece like this,
it's not moonlight reflected on a lake at night.
I think it's really
about his deafness.
Five.
I was so used to seeing my parents content in their quiet world
that it was hard to notice
at first.
Something was different
with Dad.
He was having trouble
keeping up.
? Wooh... Di, di, di?
- Oh, my God.
- Yeah, that's the other thing.
Right.
- It's like, you pause and then you play.
- Yeah. Right. That's right.
He's teaching me tricks.
How to make it sound better
and more beautiful.
He claims he's played it more times than
Beethoven or any other person in the world.
We're not doing that.
Should I relearn "F r Elise" or no?
- No.
- Jonas, I want to work on polishing it.
- Okay.
And what does that mean,
exactly?
To... make sure your mistakes
aren't mistakes.
Well, that's the very basic thing.
You're not going to make mistakes.
You know, everybody makes some mistakes.
But you're not going to make the same mistakes
- over and over again.
- Okay, okay. Um, polishing means... dynamics?
- Yes. You have-- You know, if--
- I get an Altoid for that.
If it doesn't have any dynamics,
it just-- It's not interesting.
Like, this is without dynamics.
Like, "F r Elise," for example...
But with dynamics...
- Like that.
- Yeah.
Of course, you don't have
to do the big acting job, too.
You-- Your fingers
do most of the work.
Okay.
- Now one thing, just in terms of style,
when you're in the middle of the piece,
you can't scratch your head.
- What does that mean?
- Rub your nose...
Well, you were playing and then with-- the left hand wasn't busy,
you were going like this.
And sometimes you even stopped.
- And then at the--
- Oh, my contact was bugging me.
Oh. Well, okay. But you know,
when you're performing, you can't do that. Right?
No matter how bad it itches,
you have to suffer.
And so we were talking about that,
that we were going to use the soft pedal,
and keep this--
He says "Always pianissimo."
And then he brings it home.
So if you keep that really quiet,
all of a sudden, there's a voice in the piece.
Jonas, a voice.
On a scale
of one to six, four is average,
I think I would give myself
a four plus.
- Okay.
- What would you give me?
- What would my score be on a--
- Two.
- A two?
- Mm-hmm. Sorry.
That's not even-- That doesn't
even meet the standards.
I know! That's what I'm trying
to help you do.
I'm trying to help you be a six,
which I know you can do.
Okay, bye.
I want the phone!
I want the phone!
Gil could scream all he wants.
I want the phone!
Dad has a superpower.
He likes to shut out sound by turning off his cochlear implant.
Jonas hadn't figured out yet that he has that superpower too.
Matt--
Almost everybody who
loves music loves this piece.
I want you to play it like you-- The way you
wanted to play it before you even learned it.
Do you remember what that was like?
- Mm-hmm.
Okay, let's hear it
that way, then.
I don't know.
I was waiting to see
if you could kind of recover.
I'd love for you to be able
to just start at that measure.
I think it's a really good thing that you have
a little brother that interrupts your playing
because it teaches you to play
through unexpected things.
This is what I hear.
Do you know what's wrong
with that?
I start going too fast?
- No.
- Too slow?
- No, it has nothing to do with tempo.
- It's too--
- Too loud?
The-- The melody is too weak.
We're hearing this.
Let your ear be your guide.
Okay?
- Thank you.
- You're welcome.
It's me. It's me. It's me.
No. No.
Get up!
Can I just be done now?
Jonas? Would you like to take off your
implants and just check out for a little while?
Just something, honey, to just
let your senses calm down.
I'm always just trying to understand how we can live with this better.
'Cause it's hard. And the hardest person it's for right now,
it's hardest for you.
But you know what Papa said to me today?
- What?
He told me he thought his life
was better because he was deaf.
Wait.
I messed up.
Why should I bother?
That does bring up
an interesting question
as to whether you want to play
mostly for yourself
or whether you want
to play mostly for other people.
- I don't know.
- Yeah.
It's a tough question to answer 'cause it's nice to play for other people
because then they, uh, sort of
admire your expressiveness.
But if it gives you a little stage fright,
then it's a pain in the neck.
It interferes with your own
appreciation of it.
I always make
at least one mistake.
And every time I sit down at the piano,
I say, "This time it's going to be perfect."
And I don't think it ever is.
I hate this piece.
I hate it.
He's got it in his head, but if it's not perfect,
then the whole thing falls apart.
You can't learn
without making a mistake.
Go left.
- Left?
- Yes, left.
It's right here. Oh. This. Right there.
- Right there.
Yes, right there.
Go right... there.
There!
I'm just not fully comfortable with you driving the kids.
Telling my dad
he couldn't drive my family
was one of the hardest
things I've ever had to do.
I know what driving
meant to him.
Driving was more than freedom.
It was progress.
I'll never forget the way Dad used to
look at me while he drove us around.
He looked as if nothing
could stop him.
So I think I have
some idea about your history.
I need to examine your brain.
Okay?
So the first thing,
I'd like you to arrange these tiles to match that design.
Terrific.
Can you tell me how much
seven from one hundred is?
Ninety-three. Yes.
What is that?
Yes.
I'm going to ask you to try to remember four words.
OK?
The words are...
robin, carrot, piano and green.
Okay, well,
there was a musical instrument
in the list of words.
It was either a drum, a piano...
Or a trumpet.
Uh, do any of those...
Do you recall
any of those being... listed?
No. Okay.
Say as many words as you can think of that begin with the letter F.
Mm-hmm.
Fun, fun...
On your exam today,
there were no surprises.
So putting this all together,
um, you know,
this looks like what we would call the early stages of a dementia.
So the most common cause
of dementia is Alzheimer's.
Right now, um,
you're in an early stage.
But, unfortunately,
this would likely progress
and then there may be other difficulties that come with that.
Continue to be engaged
with the world.
Um, I know it's challenging.
He memorized sound.
He knew when he looked
at the page, he could hear it.
He looked at his art as
the thing that would save him.
His isolation gave him
a greater sense of who he was
and what he heard
in his own mind
and it just blocked out all the noise of the rest of the world.
He only had his own noise.
His deafness just gave him
an isolation that might have
given him the best ability
to hear his own voice.
Did it sound good?
That was weird.
At the end
of the Ninth Symphony,
one of the orchestra members
got up and walked over to him
to turn him around
so he could see
that he was getting a standing ovation for the Ninth Symphony.
Small wonder, but...
Jonas took the leap
into silence.
He was spending more and more time with his implants off.
And more time with Dad.
Okay.
What's brown and sits
on a piano bench?
Beethoven's first movement.
Ha-ha-ha-ha-ha!
I want the recital to be, like,
this weekend. Instead of--
Because you don't want to practice this anymore?
- Yeah. And plus I've nailed it.
- I'm just going to--
- You haven't nailed it. You think you've nailed it.
- You haven't nailed it.
- Okay.
- It can always be better.
- Of course.
Have you listened to this
on YouTube?
- My bad. My bad.
- Have you listened to this on YouTube?
Yes.
- Really? Who? Who was the pianist?
- Mm-hmm.
Beethoven.
Wait, did Beethoven ever play this and was it ever recorded to YouTube?
I'm sure Beethoven played this
a zillion times,
but he died long before they had recordings of his playing.
- You want to know the truth?
- Mm-hmm.
- Mr. "I Nailed It."
- Mm-hmm.
I'm not Mr. "I Nailed It."
You played it louder,
but you didn't play it well.
And I think if you practice it
this week,
you'll play it so we hear the notes and then you'll play it well.
- Thank you.
- You're welcome.
- Actually, like, thank you.
- Hmm?
Thank you for, like, for real.
- Time to fly again!
- No, no, no, no, no!
Ah! Where are my pants?
Oh, yeah.
It was like I was a ghost
walking down the street.
Groovy!
- Trust me.
- God's sake!
- It's for the best.
- Annie, please!
This shall be my greatest performance of all time!
This is it, Morty. We're goners.
We're not getting out of this one.
After everything we've been through,
this is how we're going to die.
- Make peace with your god.
- Oh, geez, Rick, I don't want to die!
And now for the E-Splat!
- Oh, my gosh.
- Oh, my gosh.
I don't even have
my implants on.
Oh. Okay. Well, I heard it fine.
It got to the point where
the only way
Dad could remember
what he had done each day,
was to write things down.
When I play without
my implants,
I just feel really joyful.
It's beautiful and soothing.
If I'm not wearing my implants and I make a mistake,
I don't really care.
I just try to move on.
I can just let my mind wander.
I only like it when I know I can go back to not being deaf.
I appreciate you
letting me film you a lot.
Because I will always
have this of you.
It's nice.
Yeah.
You taught me how to film.
? Happy birthday to you?
-? Happy birthday to you?
- Wow!
? Happy birthday, dear Papa?
? Happy birthday to you?
- Okay.
- Okay.
Done.
So you go around once,
like this.
Hmm.
Excuse me.
- Stand up straight. Let's have a look.
Let's have a look.
Jonas, that's really sweet.
Oh, and they're so pretty.
Welcome, everybody,
to our piano recital.
I want everybody to really applaud the kids after they play,
not for the perfection
of their pieces
but the effort that they put trying to get to that perfection.
So we'll start today with Jonas,
and he'll be playing the first movement of the Moonlight Sonata.
I'll never be sure what Jonas heard that day.
What Dad will remember of it.
Or what Beethoven meant when he gave us his Moonlight Sonata.
We gave Jonas hearing.
But he had to find his voice.
If deafness is a mutation...
a "typo" in our
human condition...
then our mistakes
can become our music.
I, I want to be?
One of those storms?
Falling over the sea?
I want to rely?
Stars fiercer than Mars?
Smile back at me?
I, I want to be?
One of those storms?
Falling over the sea?
Falling over the sea?
I...?
I...?
Falling over the sea?
Falling over the sea?
Falling over the sea?
Falling over the sea?
Falling over the sea?
I, I want to be?
One of those storms?
Falling over the sea?
Falling over the sea?
One of those storms?
I...?
Falling over the sea?
I...?
I...?
I...?
Falling over the sea?
I was in the fashion business.
If someone said,
"Are you a fashion designer?"
No, I hate fashion.
Fashion has to be desirable,
and Ralph sees that.
I think it's important
people express who they are.
Mom, are you--
Is it filming?
Uh, now. Yep.
Is this still okay?
Pssssst...
Jonas.
When my son Jonas was born
doctors told me he could hear.
Hey! Jonas, look at this.
Want to walk over here?
Family genes have a way
of arriving unannounced.
They might skip
a generation or two.
But often they catch up.
Around the time he should've
been learning to talk,
Jonas' voice was the first
clue.
H-- Hello. Hello.
Hello.
? Hello to the trapezoid?
Hold on. Hold on.
What's that one?
- What is it?
- Apoctagon.
Yeah, it's the octagon.
? Hello to the octagon?
? So glad to see you?
What else
should we say hello to?
Hello...
- To what?
- Hello...
To the piano?
Piano? Can you say piano?
? Twinkle, twinkle little star
?
? How I wonder what you are?
? Up above the world...?
? Twinkle
twinkle, little...?
? How I wonder what you...?
Where's the cowboy?
Cowboy. Very good.
30-35 in the left.
Where's the football?
Every month we would get
a new hearing test.
Not sure on that one.
Sound was slipping away.
Sss...
Sss... Sss...
Letters, entire words,
were disappearing.
Sss...
No, I don't believe that one.
Could you play 115 decibels
through the right insert?
And he's not even
acknowledging that.
? ...that shiny ring
won't shine?
? Daddy's gonna give you
some fishing line?
We tried hearing aids to amp up
what little was left.
? Daddy's gonna show you
a hummingbird?
This deafness?
It's a hand-me-down.
I can hear. And so can
my brother and sister.
But my parents,
both of them, are deaf.
They adapted well
to the hearing world.
Our world.
And they gave us things
they couldn't enjoy.
Music lessons.
Record players.
Movies.
In return,
we were their interpreters.
We were their ears.
Jonas was my first child.
And now Mom and Dad had my
back.
Okay. Okay.
Mommy.
Daddy.
Kiss.
A year before he was born,
Mom and Dad had surgery
to get cochlear implants,
devices that would allow them
to hear.
But their brains were so shaped
by a lifetime of silence,
that when they finally
heard sound...
Okay.
...it turned out
not to be that meaningful.
And this is 2000 hertz.
80.
90.
95.
100.
105.
110.
When he turned four...
the audible world for Jonas...
finally closed shut.
So Jonas, tomorrow
night we're going to have
a happy birthday dinner
for Nana.
We're also going to have
a happy surgery dinner for you.
So what should
we have for dinner?
Well, what else?
Why are you getting
a cochlear implant?
Is he going
to put it in your mouth?
Oh. But-- But Jonas,
you're going to--
Jonas, you know you're going to have to go to sleep.
Did you know that?
Shh.
Who else
has a cochlear implant?
You see it?
Can you feel it?
Here, feel up here, honey.
The magnet's right in there.
No. What goes
on your eye is glasses.
What went back here
is an implant.
Okay.
Okay. Okay, buddy.
Okay.
Okay.
It looks pretty clean, huh?
I learned from
my parents' experience,
it would take a lot of work
to learn how to hear.
- But Jonas had an advantage.
- See that?
He was young.
Maybe the battery's low.
What does it sound like, Jonas?
That's what happened.
At first,
the world of sound came at him
in a storm of beeps
and unintelligible clicks.
Sss...
- Sss... kunk.
- Skunk.
You did it! Whoa! All right.
- Tell me what you are.
- An astronaut.
And why do you need boots?
That's because, um,
the ground is so hot that I can't even step.
Where? On Mars or the moon?
Um, on-- on Mars.
Slowly,
he started to understand sound.
And this is the countdown.
That's the countdown, right there.
His voice changed...
because he could hear it now.
He got his words back.
I see. What does
the countdown sound like?
Five, four, three, two, one,
zero, blastoff. Just like that.
And that little boy who used to sing "Twinkle, Twinkle,
Little Star"?
He was getting music back, too.
Whoo!
Jonas told us he wanted to take piano lessons.
So our very first performer has had five lessons,
and what an adventure.
His piano teacher Colleen helped him distinguish a C from a G.
And when a note
sounded sharp or flat.
It got messy sometimes.
But all that music was helping
Jonas navigate sound.
Say the word "wreck."
- Wreck.
- Say the word "waste."
- Wist.
- "Knee."
- Knee.
- "Camp."
- Cap.
- "Fresh."
- Fresh.
- "Fair."
- Fair.
Okay.
This time it's going to sound like there are a lot of other people
talking in the room. A lot of other conversations happening.
Just do your best to--
Is it-- Is it going
to sound like "blah-blah-blah"?
Yeah. Kind of.
- But you have to pick out the words in all that blah-blah.
- Okay.
Okay, here we go.
We wanted to stay
at Cassie's tonight.
We wanted to stay
at Cathy's the night.
He checked out three books
from the school library.
He checked out s-- School--
School books or three books
from the school library.
I forgot to put my lunchbox
in the classroom.
I forgot to put my lunchbox
in the classroom locker?
Okay, wait.
It's just interrupting me.
I can't--
When Jonas was 11,
he told his piano teacher
he wanted to learn a piece
he had fallen love with...
the Moonlight Sonata.
Her first response was
to tell him it was too hard.
She gave him other pieces,
but he wouldn't practice.
So he went online and
found the sheet music for it.
Beethoven wrote the Moonlight
Sonata when he was going deaf.
Some people call deafness a cosmic mistake in our human condition.
But how could this be a
mistake?
Where did Beethoven
find this melody?
Where did he find his voice?
Eventually, Jonas' teacher relented and
agreed to teach him the Moonlight Sonata.
They set a goal for him to play
a recital in seven months.
Oops.
Sorry.
Have you practiced
a lot this week?
- Yes.
- Okay.
Like I said,
Beethoven doesn't want you to put a retard at the end.
He wants you to keep the tempo
exactly the same.
And he said
"Sonata kind of like a fantasy."
That's wrong, Jonas.
It's a D sharp right there.
You're playing a D natural.
Right here.
I want you to stop.
This is one of those measures we talked about.
My God.
- Let me get a red pencil.
I was doing so good!
No, you're not doing well
if you're playing a wrong note.
It was--
That was my first mistake.
Bring out these notes.
Yeah. Okay. That's one.
Two.
That's close.
Oh, yeah. No.
Okay, now start-- You can start there and keep on going.
Now I've, like,
forgotten everything.
Keep going.
- Zero! Zero!
- No, no, no!
That's what happens when you don't correct your mistakes.
Your mistakes become the music.
Sorry, Jonas.
Open!
Open!
Colin! Col!
Jonas is my only deaf child.
- His two brothers came later.
- Mom!
They can hear.
Stay with him. Stay with him.
Pass right here. To the wing. Good.
Strong, hard passes, guys.
Hard passes.
- Nice!
- All right, Jonas!
Hello.
No.
Now we all live just down the street from Mom and Dad.
No.
Wait, what?
My name is...
I'm deaf.
The implants just help me hear.
But without the implants,
I'd be deaf and the implants are a part of me.
Well, kind of.
Technically, they are, but...
Where do I put them?
Like, there?
I can't hear you right now.
So I can only, like, talk. But, yeah.
And then... what
does it feel like right now?
What does it feel like right now?
Okay, I'm glad I, like, understand that.
It feels pretty much
like I can't hear anything.
I barely even know
what I'm saying
'cause I know what I'm saying
'cause I know how to talk.
But, like, I can't hear myself talking,
so that feels a little bit weird, but, like...
I really don't know, like,
what I sound like when I'm talking right now.
I feel like I'm, like,
a little bit fast or a little bit slow, but like... yeah.
- Can you feel--
- Yeah, I can feel...
If I put my hand here,
I can feel the vibration.
I can't really hear anything,
but I go like--
Probably can't hear that or if I go "Ohhhhh,"
I can, like, barely hear that.
I can hear really low sounds. I can,
like-- It's, like, not really much hearing.
Like, if I produce a really low
hearing sound,
it just, like, basically goes
through my... vocal box.
So, like,
I can hear a really big vibration that sounds like sound,
but it's actually just a vibration,
so I'm probably not hearing anything right now.
Oh!
Oh, good combo, good combo!
Oh! G.G.!
I'm right here. I'm right
here. I'm in front of you.
Oh, my God! Bad, bad, bad!
Help me! I'm so scared.
Look at this! Look at this!
High-five over the phone.
So, like, do you want
to be Hamilton or Aaron Burr?
Three, two, one, go.
? Pardon me,
are you Aaron Burr, sir?
? I'm Alexander Hamilton
I'm at your service, sir?
? And I'm just like my country?
? I'm young,
scrappy and hungry?
? And I'm not throwing away
my shot?
? A scholarship
to King's College...?
What time is it?
- Showtime!
A lot can
happen in two generations.
Most deaf people couldn't even get car insurance until the 1950s.
Dad got his driver's license at 14 and he
saw it as a sign that he could do anything.
When he finished graduate school,
Dad's parents gave him a new red Ford.
He took my mom out
on dates in it.
Dad became an engineer,
an inventor, my father.
And our family
was everything to him.
Papa was a scientific,
technological genius,
'cause he invented
the first FaceTime, kind of.
It was called the TTY.
Kind of like texting.
So, like, you could text
with a typewriter
and you could send a direct message to the other typewriter.
Except black and white and
the graphics were, like, lower.
The thing is, when my
grandparents were young,
I've learned about some of their history,
because I've seen a few movies.
They just kind of, just, like,
played with their friends, they didn't talk much.
I can't say that's boring
because that's, like,
the 20th century.
He made
movies about us all the time.
And he gave me my first camera.
He taught me
how to take pictures.
And tell stories.
I know that
would be their life for them.
So they would-- They would have never
known our life of all this technology and stuff.
Okay, I'm going
to turn it on. Are you ready?
What are you doing?
I got my first implant
when I was four or five.
Oh!
And then I got my second one
when I was eight.
Or nine.
Music class.
I've had more experience hearing things than not hearing things now.
But my grandparents,
they've had more experience not hearing things.
And that's not
going to change 'cause
you don't live to be 120.
We want to welcome you to the 2017 Ainsworth Talent Show.
Eventually,
Dad found his voice.
But I would never wish
upon Jonas
what it took him
to get there.
I know silence gave Dad...
gave all of us... something valuable.
And that's the deafness
I've always known.
Now, I wondered if my son
would ever know it too.
It's like you can
almost hear the first note.
Wait, listen.
That's like Beethoven.
When Beethoven didn't actually hear,
he heard it in his head,
just like you are right now.
But now play it
the way Beethoven wrote it.
Did you hear
what I said?
Tell me what's going on. Did you
have a bad day at school?
- Wait. Tell me.
- No.
- A good day at school?
- Yeah.
So you're just-- You're just being hyper and naughty.
- Naughty.
- You're naughty?
Okay, now be good. So I can
give you an O for your lesson.
I'm going to start
putting it in writing now.
I think you're at about an S.
Let's see if you can work your way up to an O.
And an Altoid.
I was thinking a little bit
about this piece
and where Beethoven was
at the time when he wrote this.
The deafness had started affecting him for already a few years.
The anguish in it, even the humiliation,
of being who he was and then going deaf.
He felt isolated and solitary and maybe misunderstood by people.
He had been to every doctor.
His hearing was probably never going to get better.
It was only going to get worse.
May I please
have an Altoid?
Yes.
Thank you for asking.
Open.
Touch, touch, touch, touch.
Do I get them now?
Oh, man. Are your hands clean?
- Yeah. No.
You're--
- Can I just have the whole thing?
You know,
you're an imp.
Hello, I'm Jessica.
No, we haven't met yet.
So it's nice--
I'm a genetic counselor.
Have you been told anything about your test results?
Oh, okay.
It appears that
they found an answer
that seems to explain
the cause of your deafness.
Right?
They found some changes in the instructions in this gene.
Mm-hmm.
Mm-hmm.
This gene explains less than one percent of all childhood deafness.
Maybe half a percent.
So it's rare.
So a gene is
a really long string of letters
and it has to be
spelled just so.
And what they found is that in
your both copies of this gene,
you have a spelling change.
Two variants were identified in the T-M-P-R-S-S-3 gene.
Which may be the cause
of your patient's hearing loss.
- And that was the conclusion.
- Okay.
So I think of it often as a spelling error or a "typo."
Mm-hmm.
Say that again.
I'm sorry.
We all have
some defective genes.
- Yeah.
- Or...
You know,
the way they call it-- the "technical" name--
they call it a variant.
Variant.
The term, you know,
we learned in school is "mutation."
The outcome, the end product,
doesn't perform as-- as we typically expect.
Even though deafness passed through my family's genes,
I never really thought of deafness as a medical condition.
It just shaped who we were.
Like Jonas,
Mom wasn't born deaf either.
My grandmother once told me when
Mom was a little girl losing her hearing,
she was so locked in her thoughts,
unable to understand or be understood,
she would bang her head on the floor,
trying to get what was inside of her out.
Mom's mother, my grandmother,
was a professional pianist.
Mom used to sit under her piano so she
could feel the vibrations when she played.
In our family, music got passed
between generations too.
After this...
Jonas' other grandfather,
John, also plays the piano.
Okay.
He's the one who first introduced Jonas to Beethoven's music.
Right hand. Right. E.
When I was ten years old,
it would be easy.
Like that. Right.
Why don't you come over here?
Let's talk about the piece away from the piano.
I thought you did a great job of not being too loud. Okay?
- Mm-hmm.
It was like what we've talked about before
when somebody kind of whispers a little bit.
You-- Your ears perk up.
You want to hear what they're-- they have to say.
Like the right hand says, "Da, dum."
And the left hand goes, "Bum, bum."
And then the right hand interrupts and says, "Shush."
"Da, dum."
You're expressing emotion because they don't give you a story.
It's not like a book.
They give you
kind of an emotional story,
so when you, you know,
play it a certain way, we're going to say,
"Oh yeah, I understand
what he's trying to say there."
There's moments
that are almost sacred to me.
And there's a few measures in
here that are very sacred to me.
This right here. When this is played,
Beethoven had big emotions.
They were very deep emotions.
And so sometimes when he...
he feels good, or he resolves something,
it's more special because you
know how far down he went.
Okay.
Whenever you find yourself
profoundly moved
by something or profoundly sad,
the composer you're most likely
to turn to will be Beethoven.
There's just something
elemental that's in his music.
It's not pretty, you know,
for prettiness' sake or anything like that.
It's just the depth of human experience
from the really awful to the really exalted.
So when you hear a piece like this,
it's not moonlight reflected on a lake at night.
I think it's really
about his deafness.
Five.
I was so used to seeing my parents content in their quiet world
that it was hard to notice
at first.
Something was different
with Dad.
He was having trouble
keeping up.
? Wooh... Di, di, di?
- Oh, my God.
- Yeah, that's the other thing.
Right.
- It's like, you pause and then you play.
- Yeah. Right. That's right.
He's teaching me tricks.
How to make it sound better
and more beautiful.
He claims he's played it more times than
Beethoven or any other person in the world.
We're not doing that.
Should I relearn "F r Elise" or no?
- No.
- Jonas, I want to work on polishing it.
- Okay.
And what does that mean,
exactly?
To... make sure your mistakes
aren't mistakes.
Well, that's the very basic thing.
You're not going to make mistakes.
You know, everybody makes some mistakes.
But you're not going to make the same mistakes
- over and over again.
- Okay, okay. Um, polishing means... dynamics?
- Yes. You have-- You know, if--
- I get an Altoid for that.
If it doesn't have any dynamics,
it just-- It's not interesting.
Like, this is without dynamics.
Like, "F r Elise," for example...
But with dynamics...
- Like that.
- Yeah.
Of course, you don't have
to do the big acting job, too.
You-- Your fingers
do most of the work.
Okay.
- Now one thing, just in terms of style,
when you're in the middle of the piece,
you can't scratch your head.
- What does that mean?
- Rub your nose...
Well, you were playing and then with-- the left hand wasn't busy,
you were going like this.
And sometimes you even stopped.
- And then at the--
- Oh, my contact was bugging me.
Oh. Well, okay. But you know,
when you're performing, you can't do that. Right?
No matter how bad it itches,
you have to suffer.
And so we were talking about that,
that we were going to use the soft pedal,
and keep this--
He says "Always pianissimo."
And then he brings it home.
So if you keep that really quiet,
all of a sudden, there's a voice in the piece.
Jonas, a voice.
On a scale
of one to six, four is average,
I think I would give myself
a four plus.
- Okay.
- What would you give me?
- What would my score be on a--
- Two.
- A two?
- Mm-hmm. Sorry.
That's not even-- That doesn't
even meet the standards.
I know! That's what I'm trying
to help you do.
I'm trying to help you be a six,
which I know you can do.
Okay, bye.
I want the phone!
I want the phone!
Gil could scream all he wants.
I want the phone!
Dad has a superpower.
He likes to shut out sound by turning off his cochlear implant.
Jonas hadn't figured out yet that he has that superpower too.
Matt--
Almost everybody who
loves music loves this piece.
I want you to play it like you-- The way you
wanted to play it before you even learned it.
Do you remember what that was like?
- Mm-hmm.
Okay, let's hear it
that way, then.
I don't know.
I was waiting to see
if you could kind of recover.
I'd love for you to be able
to just start at that measure.
I think it's a really good thing that you have
a little brother that interrupts your playing
because it teaches you to play
through unexpected things.
This is what I hear.
Do you know what's wrong
with that?
I start going too fast?
- No.
- Too slow?
- No, it has nothing to do with tempo.
- It's too--
- Too loud?
The-- The melody is too weak.
We're hearing this.
Let your ear be your guide.
Okay?
- Thank you.
- You're welcome.
It's me. It's me. It's me.
No. No.
Get up!
Can I just be done now?
Jonas? Would you like to take off your
implants and just check out for a little while?
Just something, honey, to just
let your senses calm down.
I'm always just trying to understand how we can live with this better.
'Cause it's hard. And the hardest person it's for right now,
it's hardest for you.
But you know what Papa said to me today?
- What?
He told me he thought his life
was better because he was deaf.
Wait.
I messed up.
Why should I bother?
That does bring up
an interesting question
as to whether you want to play
mostly for yourself
or whether you want
to play mostly for other people.
- I don't know.
- Yeah.
It's a tough question to answer 'cause it's nice to play for other people
because then they, uh, sort of
admire your expressiveness.
But if it gives you a little stage fright,
then it's a pain in the neck.
It interferes with your own
appreciation of it.
I always make
at least one mistake.
And every time I sit down at the piano,
I say, "This time it's going to be perfect."
And I don't think it ever is.
I hate this piece.
I hate it.
He's got it in his head, but if it's not perfect,
then the whole thing falls apart.
You can't learn
without making a mistake.
Go left.
- Left?
- Yes, left.
It's right here. Oh. This. Right there.
- Right there.
Yes, right there.
Go right... there.
There!
I'm just not fully comfortable with you driving the kids.
Telling my dad
he couldn't drive my family
was one of the hardest
things I've ever had to do.
I know what driving
meant to him.
Driving was more than freedom.
It was progress.
I'll never forget the way Dad used to
look at me while he drove us around.
He looked as if nothing
could stop him.
So I think I have
some idea about your history.
I need to examine your brain.
Okay?
So the first thing,
I'd like you to arrange these tiles to match that design.
Terrific.
Can you tell me how much
seven from one hundred is?
Ninety-three. Yes.
What is that?
Yes.
I'm going to ask you to try to remember four words.
OK?
The words are...
robin, carrot, piano and green.
Okay, well,
there was a musical instrument
in the list of words.
It was either a drum, a piano...
Or a trumpet.
Uh, do any of those...
Do you recall
any of those being... listed?
No. Okay.
Say as many words as you can think of that begin with the letter F.
Mm-hmm.
Fun, fun...
On your exam today,
there were no surprises.
So putting this all together,
um, you know,
this looks like what we would call the early stages of a dementia.
So the most common cause
of dementia is Alzheimer's.
Right now, um,
you're in an early stage.
But, unfortunately,
this would likely progress
and then there may be other difficulties that come with that.
Continue to be engaged
with the world.
Um, I know it's challenging.
He memorized sound.
He knew when he looked
at the page, he could hear it.
He looked at his art as
the thing that would save him.
His isolation gave him
a greater sense of who he was
and what he heard
in his own mind
and it just blocked out all the noise of the rest of the world.
He only had his own noise.
His deafness just gave him
an isolation that might have
given him the best ability
to hear his own voice.
Did it sound good?
That was weird.
At the end
of the Ninth Symphony,
one of the orchestra members
got up and walked over to him
to turn him around
so he could see
that he was getting a standing ovation for the Ninth Symphony.
Small wonder, but...
Jonas took the leap
into silence.
He was spending more and more time with his implants off.
And more time with Dad.
Okay.
What's brown and sits
on a piano bench?
Beethoven's first movement.
Ha-ha-ha-ha-ha!
I want the recital to be, like,
this weekend. Instead of--
Because you don't want to practice this anymore?
- Yeah. And plus I've nailed it.
- I'm just going to--
- You haven't nailed it. You think you've nailed it.
- You haven't nailed it.
- Okay.
- It can always be better.
- Of course.
Have you listened to this
on YouTube?
- My bad. My bad.
- Have you listened to this on YouTube?
Yes.
- Really? Who? Who was the pianist?
- Mm-hmm.
Beethoven.
Wait, did Beethoven ever play this and was it ever recorded to YouTube?
I'm sure Beethoven played this
a zillion times,
but he died long before they had recordings of his playing.
- You want to know the truth?
- Mm-hmm.
- Mr. "I Nailed It."
- Mm-hmm.
I'm not Mr. "I Nailed It."
You played it louder,
but you didn't play it well.
And I think if you practice it
this week,
you'll play it so we hear the notes and then you'll play it well.
- Thank you.
- You're welcome.
- Actually, like, thank you.
- Hmm?
Thank you for, like, for real.
- Time to fly again!
- No, no, no, no, no!
Ah! Where are my pants?
Oh, yeah.
It was like I was a ghost
walking down the street.
Groovy!
- Trust me.
- God's sake!
- It's for the best.
- Annie, please!
This shall be my greatest performance of all time!
This is it, Morty. We're goners.
We're not getting out of this one.
After everything we've been through,
this is how we're going to die.
- Make peace with your god.
- Oh, geez, Rick, I don't want to die!
And now for the E-Splat!
- Oh, my gosh.
- Oh, my gosh.
I don't even have
my implants on.
Oh. Okay. Well, I heard it fine.
It got to the point where
the only way
Dad could remember
what he had done each day,
was to write things down.
When I play without
my implants,
I just feel really joyful.
It's beautiful and soothing.
If I'm not wearing my implants and I make a mistake,
I don't really care.
I just try to move on.
I can just let my mind wander.
I only like it when I know I can go back to not being deaf.
I appreciate you
letting me film you a lot.
Because I will always
have this of you.
It's nice.
Yeah.
You taught me how to film.
? Happy birthday to you?
-? Happy birthday to you?
- Wow!
? Happy birthday, dear Papa?
? Happy birthday to you?
- Okay.
- Okay.
Done.
So you go around once,
like this.
Hmm.
Excuse me.
- Stand up straight. Let's have a look.
Let's have a look.
Jonas, that's really sweet.
Oh, and they're so pretty.
Welcome, everybody,
to our piano recital.
I want everybody to really applaud the kids after they play,
not for the perfection
of their pieces
but the effort that they put trying to get to that perfection.
So we'll start today with Jonas,
and he'll be playing the first movement of the Moonlight Sonata.
I'll never be sure what Jonas heard that day.
What Dad will remember of it.
Or what Beethoven meant when he gave us his Moonlight Sonata.
We gave Jonas hearing.
But he had to find his voice.
If deafness is a mutation...
a "typo" in our
human condition...
then our mistakes
can become our music.
I, I want to be?
One of those storms?
Falling over the sea?
I want to rely?
Stars fiercer than Mars?
Smile back at me?
I, I want to be?
One of those storms?
Falling over the sea?
Falling over the sea?
I...?
I...?
Falling over the sea?
Falling over the sea?
Falling over the sea?
Falling over the sea?
Falling over the sea?
I, I want to be?
One of those storms?
Falling over the sea?
Falling over the sea?
One of those storms?
I...?
Falling over the sea?
I...?
I...?
I...?
Falling over the sea?