[ Suspenseful music plays ] ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ -[ Electronic voice ] My name is Kathryn, and five years ago I was diagnosed with ALS.
My daughter is getting married this weekend at our house in the Catskills.
I haven't been there in four years.
♪♪ -Hiya.
-Hi.
♪♪ ♪♪ -ALS is a catastrophic and criminal disease if there ever was one.
It's like watching yourself getting hit by a bus in excruciatingly slow motion.
One body part at a time is crushed until you are flattened right up to the nose.
Only the head is spared, until all you have left is your brain attached to a lifeless, rag-doll body, resulting in death typically three years after diagnosis.
Telling my kids my diagnosis was the hardest part.
Just thinking of leaving them filled me with grief.
♪♪ ♪♪ -♪ Light of my life ♪ ♪ I will always love you, darling ♪ -That's my husband, Said.
We met at the University of Chicago.
I was an undergraduate, a total hippie.
He was flush with oil money from the shah and finishing up his PhD.
He had a position as a resident assistant in a dormitory, which he turned into his personal harem.
The only thing we remotely had in common was a certain preciosity of belief in our own intellectual superiority.
It was simply lust at first sight.
-Harel?
Hello?
-Send a text message.
-Hello?
-If you can't speak to them, send a text.
-Yeah, that took about seven hours to be delivered last time.
Hello?
-If you can't hear them, send a text message.
Okay, Mom says you should get food for 17 people.
Or you should call Tim or Mike and have them get food for 17 people.
-I invited explicit my family for dinner.
-Oh.
-I invited explicit my family for dinner.
Backpack.
-The ramp is useless.
You're not getting into the mud room.
-This is my son, Noah.
He is so brilliant, and I am a huge fan of his.
As a boy, he was so, so, so charming.
Everything he said was interesting.
It was exhausting for most people, but I listened to every word.
-There's a bug?
Where?
In your eye?
Mouth?
There's a bug in your mouth?
Ear?
On your face?
Where's the bug?
On me?
On you?
No, there's no bug.
You're hallucinating.
There's no bug.
-This film is his idea, and I am happy to participate in anything he does.
-Hi.
How's it going?
-Good.
We're just trying to figure out how we're gonna get her indoors, actually.
-The ramp doesn't work?
-It's...
I think we have to -- I think we have to dig up the big stone that's there.
-Oh.
-With the crowbar kind of thing.
Dad thinks -- -Because it's too high, the ramp?
-This is my daughter, Minou.
-...with a carpet and a piece of wood.
-And this is the groom, Harel.
-Good to see you.
What do you think of the tent?
-Two extraordinary, brilliant, beautiful people coming together is a real blessing.
Harel is sterling.
And my daughter, Minou, of course, is quite a catch.
[ Indistinct conversation ] [ Computer beeps ] -Okay.
[ Computer beeps ] -I remember very early on, I think the second time I met Harel, we were down at a waterfront cafe by 60th Street, and he was talking charmingly about that summer and how his advisers were expecting work from him.
But, he said, "I am in love."
It was just stunning and lovely.
-And then he came.
I was like, "Hey, you know, so we're getting married."
And I was like, "Well, do you think it's a good idea?"
And he said -- he said, "Well, for some people."
-But I have a question to ask you.
Like, what would be any other response?
Like... -Well, most people are like, "Oh, it's amazing.
Congratulations!"
-No, I feel like the way you put it, anyone would be like, "Well, you never know."
You know?
-No, I feel like most people would just give a very, like, superficial... -A few months back, I was indeed thinking of throwing in the towel.
I wanted out.
But I couldn't with my daughter getting married.
♪♪ I had a pretty hermetic winter.
I think the last time I left the apartment was mid-January.
[ Whirring ] Not much was happening there.
Even my inner life had become boring and sluggish.
My mother and brothers visited, which was the usual blend of sublime and ridiculous.
-There was a thing in "The New York Times" this morning about children losing their social skills because they're so attuned to just doing their thing with their telephones and their tablets and stuff that they've lost the ability to hold one-on-one conversations.
-I could always imagine death, but this other stuff -- the paralysis and not speaking -- has been very hard to take.
-Why are you crying?
Why are you crying?
Do you want your knee up?
Okay.
Show...
I don't understand what the problem is.
Is there a problem with Tobii?
Is there a problem with Tobii?
Is there a problem with Tobii?
Mom, listen, you can't get upset.
It will go much faster if you open your eyes, if you don't cry.
So, look.
Tobii?
Tobii goes into the white thing that looks like this, right?
Yeah, does this plug into the wall there by the lift?
It does?
Okay.
Is that what you're crying about?
No, it's not.
There's something else.
-ALS patients are told confidently by our doctors to go home, try to stay cheerful, and prepare to die, though we do get to decide when we've had enough and commit suicide.
I had a friend with ALS who took her life a couple of years ago.
She had great insurance, but none pays for long-term caregiving, so the burden would have fallen on her daughters.
Who wants to ruin their children's lives?
Yet, for me there has always been a moral imperative to fight for every day in this world.
And if you opt for a tracheostomy with mechanical breathing, as I have, a person can live 50 years.
My pulmonologist said to me before surgery the positive of doing the tracheostomy is that you can live indefinitely.
And the negative of doing the tracheostomy is that you can live indefinitely.
But I know that when things become intolerable, I can end it.
[ Indistinct conversation ] -Very nice.
-Yeah, she looks angelic, as she always did.
-Uh-huh.
[ Chuckles ] -Beautiful smile.
-Wow.
-Hello.
How are you?
-Hi.
Hi.
How are you?
You okay?
-It's good to see you.
-You really -- your face looks beautiful, Kathryn.
-Radiant.
Radiant.
-She looks beautiful.
-Then you... -She looks beautiful.
[ Laughter ] -Old lady.
Old lady.
[ Laughter ] -You look beautiful.
You really do.
-Well, we had -- her birthday was just last week.
-Oh, you're kidding.
-Yeah.
She's very, very beautiful.
I'm serious.
She looks beautiful.
-[ Chuckles ] -It's good to see you.
-Very good.
So let me see.
Tea or coffee?
-Said, this is ridiculous.
[ Laughter ] -This cake is delicious.
-It's a place in town.
-Yeah.
In Bronxville.
Argentinean.
It's really a patisserie, you know?
It's very -- you would think it's French.
I mean, it is basically French.
[ Dramatic music plays ] -It's called motor-neuron disease.
It's a progressive neurological disorder that destroys the cells within the brain that control essential muscle activity, such as speaking, walking, breathing, swallowing.
The signals that muscles must receive in order to move are disrupted.
The result is gradual muscle decay, wasting away.
Eventually, the ability to control voluntary movement is lost entirely.
I'm afraid average life expectancy is two years.
There's nothing I can do for you.
-What about the brain?
-The brain isn't affected.
-Her daughter, Minou -- you haven't met.
-I saw a picture.
-You saw a picture, right, okay.
She's gorgeous, right?
She just announced that she's getting married in September.
So there was like -- it was like, "Surprise!
We're engaged and we're getting married in September."
-Yeah, I was gonna say... [ Laughter ] Congratulations.
That is beautiful.
-Yeah, it's exciting.
So they're gonna get married up in the Catskills... -Oh, nice.
Nice.
-...to come up here, so... -Oh, they don't live in New York?
-No, she lives in Boston.
-Oh!
-She teaches at BU.
And her fiancé, now I guess we can say... -Fiancé.
-Fiancé [chuckles] is in Texas.
[ SIREN Baroque's "Una Fiamma Rovente" playing ] ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ [ Man speaking indistinctly on television ] -Do you have any idea how many people?
Mom wants to know if he has a lot of relatives.
[ Computer beeps ] -No, not a ton.
So we want to have it be under 100.
-Mom asked, "What about music and a rabbi?"
-Oh.
Rabbi?
-So, well, Harel actually wants a rabbi.
But we also asked Craig Calhoun if he would co-officiate.
-Is he a ship's captain or something?
-No, but if there's a rabbi, he doesn't need to be.
Apparently, an average rabbi costs $750, but you could get an imam for $300.
-[ Laughs ] Mom said instead of paying $700 for a rabbi, you should just get -- pay an actor to play a rabbi.
Mom wants to know if you're becoming Jewish.
-Oh, no.
Of course not.
[ Computer beeps ] -[ Humming ] [ Computer beeps ] -I hate looking so old.
What should I do?
And color hair?
-[ Laughs ] You want to color your hair?
Oh.
Yeah, maybe.
Maybe, yeah.
-You can do that.
-But you used to do that, right?
-Yeah, you want to do that?
Okay.
We have to choose... -You know the right color, right?
-I have two great caretakers, Doris and Careen.
They are wonderful.
-[ Squeals ] -We also have Ide... -[ Sings indistinctly ] -...Britt... -[ Strumming guitar ] ♪ I hear the sound ♪ -...Elena.
I will explode.
-[ Laughing ] No more?
Oh, my God.
-I did explode.
But Medicaid keeps sending new people.
Even the competent ones we have to train from scratch.
-The way this works, I'm not sure if my dad showed you, but basically there are sensors.
See, right now she can't use it.
There are sensors in here that detect her eye movement.
So anytime I'm doing -- like, I'm feeding her over here, I have to be sure that I'm off to the side.
If I'm blocking here... -It won't pick up.
-...and I'm trying to do something or I'm asking her, "What's wrong?
What's wrong?
", she can't communicate.
[ Computer beeps ] And so anytime you hear that sound right there, it's low inspiratory pressure, which means this came disconnected.
We've had problems before where people see this is still connected, so they think nothing's wrong and they ignore the alarm and then she turns blue.
And we don't need that.
Now do you see that head movement?
She's going forward and to that side.
So then I'm gonna lean her forward the same as I did with the pullback and move her -- and, again, it's like a millimeter.
-Okay.
-Just a tiny bit.
-Just want to place to the middle.
Okay.
-I'll take this.
[ Indistinct conversation ] [ Machine whirring loudly ] -I got it.
I got it.
I got it.
-Shaking head "no" means stop what you are doing immediately.
Don't ever shove the suction tube in my mouth if I am shaking head "no."
Stop and wait for answer when you ask me a question.
I'm not a vegetable in a nursing home.
-Of course not.
-Always suction before and after cough assist.
Ran out.
-This is out?
Ran out?
-R-S-T... -How many years have you done this?
-All right, Kathryn.
-Three years.
-I -- Yes.
-You don't pay attention.
-Oh, come on.
Move away blanket before arm up.
-I thought we did that.
Okay, okay.
[ Sighs ] -No.
-Okay, well... -So, Dad, Mom has a brand-new nurse every Sunday?
Is that right?
-That is not right.
-What about Ide?
Ide's not coming anymore?
-She has a nurse every other Sunday.
-Ide, who might quit if you keep being a dick.
-What?
-You think she quit?
-I think she might quit.
She's a very sensitive person.
-Oh.
-She's not cut out for this.
-Yeah.
-You are right.
-What?
What am I right about?
You being a dick?
Or about her being sensitive?
-No.
-Or both?
-I had to really... -You had to what?
-Mom gave the usual treatments to her.
-What do you mean "the usual"?
What's the usual treatment?
Not being able to sleep?
Mom being uncomfortable?
That's her treatment?
-No, that's the same kind of... insults following by tripping over people that she does with me.
-Tripping over people?
-Yeah, she asks four things at the same time and they get confused.
And, in fact, Ide was -- I had to work very hard on her.
-New nurse tonight.
New nurse tonight.
[Bleep] You made her cry twice.
-You made Ide -- You made Ide cry twice.
You.
-And you.
Ha!
-Do you realize that she has ALS?
Do you realize that she's uncomfortable and can't move herself?
How can you accuse Mom of making a nurse cry?
Mom can't talk.
Mom can't shout in people's faces the way you do.
-Ask her.
-Mom can't -- -Why don't you ask Mom how she did it this Friday, okay?
I will rest my case.
She will tell you how she does it.
I asked Edward Said.
He was a friend of... Kathryn's teacher, Tom Flanagan.
Anyway... he's very defensive.
And I said, "Relax, man.
You're just as bad as any Israeli intellectual I've ever met.
You just listen to people.
Don't be so [bleep] defensive.
Maybe it's not such a bad thing."
I have to -- my lecture is at 12:30.
So I guess if anyone wants to... -How long is it?
-...give me some ideas of what I should say.
I'll try to remember.
-I need to do good work at the library tomorrow.
I have to revise that paper for Afghanistan.
I have to write a thing for Karen.
I got nothing done this week.
You know?
It's [bleep] hot in here.
How can you have a heating pad and two blankets on?
I'm sweating in this.
We need to get -- -Three cough.
-So, Noah, you've...
I'm glad to hear you've quit your... -You're gonna say something obnoxious, aren't you?
-...martial arts.
Martial arts.
-Hear that from whom?
-You have quit?
-Where did you hear that?
-I don't see you coming home beaten, bloody, and bowed.
-I'm just going to jiujitsu... -Three cough, suction first.
-...at Columbia University.
-Oh, that's good.
So you'd still be good as a bodyguard, huh?
Suction first?
Sorry.
Suction and then -- -Yes, she wants suction.
You just got some water on the floor.
It's best to turn it on first, but that's okay.
[ Machine whirring loudly ] That's okay.
It's okay.
Oh, first Purell.
Yeah, Dad, weren't you just flossing your teeth?
-I have [bleep] Purell on my hands already.
God.
-Dad?
-Yeah.
-The way Purell works is that it's not a coating.
Listen to me.
It's not a coating that stays on your hands.
It's alcohol that you put on your hands, and then it instantly evaporates in a few seconds, in 10 seconds, then it's gone.
If you get your hands dirty again, you need to Purell them again.
It's not a coat that stays on.
You were just brushing and flossing your teeth, right?
-No, I wash my hands after I floss my teeth.
You are the one who is brushing and flossing your teeth.
I am not.
-Okay, good.
-God, what else?
Okay, Kathryn, you want to conspire with him a couple of other things?
-Don't bother with that, Mom.
Don't bother with that.
You can't do that.
You just have to give him instructions.
-Oh, yeah?
-Three cough, suction first.
-I'll do button three, and I'll do forward and to this side.
I'm almost done flossing.
-Three cough, suction.
You mean you want some added to that?
Okay.
This one?
-No.
If you don't understand what she's saying, look at the screen.
She's saying button three.
-Three cough, suction first.
-Cough assist and a suction before she does anything.
So you already did the suction.
That's good.
Button three, which I'm gonna do.
You do the cough assist.
-I heard three more sections before you do cough assist.
-If you didn't hear, then you look at the screen.
-Just do what -- if you hear it, do it.
-I am doing it.
-[Bleep] it.
Ugh!
[ Machine whirring loudly ] -Suction.
Pull left.
Seven.
-Sorry, what?
Pull left?
-Right.
Not back.
[ Door creaks and closes ] Right.
Not back.
You screwed up my position.
-Mm.
So what do we do now?
God help me.
-Right.
Not back.
You screwed up my position.
-Mm.
Repeat that one more time.
-Noah.
Noah.
-You mean he's pulling at an angle backwards?
Yeah.
-Don't tell me anything.
Do what she wants, okay?
-Dad.
-It... Just -- I heard that.
She repeated it seven times.
You just do what she wants.
You called Noah to tell me what you told me five times?
-Do you understand what she said?
-No, I really don't.
I really don't.
Yeah.
-Then let me explain it.
-She is... What she's saying is rubbish, rubbish, rubbish, rubbish.
-It's not rubbish what she's saying.
-Okay, if it isn't rubbish, then just do what she asks you to do.
She asked you to come here.
-Dad.
She asked me to come here.
And so that I don't have to come here every single time... -Oh, God.
Just [bleep] off, both of you, okay?
-This -- This literally took -- You had 15 minutes.
The aides work here all day... -Yeah, she does it to me.
And they're not -- She is totally screwed up.
-Dad, you -- -But I picked her up.
-Dad.
-She's perfectly -- -Dad, you are going completely nuts here.
You're the only person who's not calm here.
You're going completely nuts.
-I know.
Yes, yes.
I'm the one who's nuts.
-Dad?
-Thank you, Kathryn.
Yeah.
She agree with that.
-You have to stop acting like a [bleep] child.
-Oh, come on, please.
-Dad, I could have explained this to you five times by now if you weren't being a [bleep] baby!
Open your eyes.
Open your eyes.
Look.
What she is saying... Are you gonna look off into the corner and pout?
-What she's saying is complete rubbish.
-I keep telling you don't pull back when you pull to the side.
-Dad.
Here's what she's saying.
She's saying, right, the job is to pull her.
Why are you looking down?!
Pay attention.
-Because I've heard this [bleep] thing 17 times.
I know.
-Why are you doing this to all of us?
Why are you doing this?
Why can't you just -- -You're crazy.
-Just shut up and learn.
And then do it right.
Listen, here's what the issue is.
She wants to be pulled to the right.
-I know that.
-Let me finish my sentence.
You be quiet.
-Not to the back, but to the right.
-You be quiet.
You look.
You look.
-Kathryn, you are really... -Oh, my God.
-...incredible.
-No, you are incredible.
You're impossible.
You are completely impossible.
I have never had any of these problems if I'm trying to tell one of the aides something.
-Because you're not me.
-Because they listen.
Shut up!
You're not listening to anything that I'm saying to you.
This is such a simple [bleep] thing.
It's five seconds of showing.
And you won't let me do that 'cause you won't shut up.
-Go ahead, show, show.
-Okay.
-I've done it 500 times.
-You're not -- You're still speaking.
-Show, show, show, show.
-So, she wants you to pull her to the ri-- Shut up.
She wants you to pull her to the right.
-Yeah.
-Shut up.
She wants you to pull her to the right.
You're pulling her subtly at a diagonal angle.
-Okay.
-So what you should do is you should make sure that you line up -- Do you want me to actually pull you, Mom?
You want me to pull you that way?
Okay.
-That's absolutely correct and true and honest.
-Such a waste of my [bleep] time.
So I have one hand on her butt, one in the middle of her thigh.
-Oh, yeah.
Really.
-More?
More?
-Wow.
Good.
-More?
No.
-Amazing.
-And I'm not pulling her diagonally.
-No, no.
Amazing.
That's good.
-You're such an [bleep].
It's incredible.
Why is this, like -- You just automatically put up a defense of sarcasm.
What the [bleep] is wrong with you?
Just learn to do [bleep] Like, that's a simple [bleep] thing.
-Ask your mother.
-Oh, my God, you're such an [bleep].
You're such an unbelievable [bleep].
Like, if you were in my classroom, as a teacher, I would have trouble not beating you if you were somebody else's child, because you're [bleep] obnoxious.
-He is senile.
-It's not a question of senility.
It's a question of he just thinks he knows better than everybody.
It's obvious at the dinner table also.
You just won't shut up and listen.
Nobody can get out a sentence because you think you're the only one who has anything interesting to say.
-[Bleep] it.
-Okay, you want anything else from me, Mom?
This?
You want this fixed?
Further away from you?
How about this?
How about this?
Is that better?
The tube?
There's a problem with the tube?
You want more slack?
Okay?
Okay, you need another cough assist, it sounds like.
Yeah, I think she's gonna need another cough assist.
It sounds like she has stuff in her tube.
♪♪ ♪♪ ♪♪ ♪♪ [ Whirring ] -You might be asking, how could she want to be alive with an illness such as this?
How can she enjoy this great spectacle of life without going nuts because she cannot participate?
[ Laughter and indistinct conversations ] Love makes life totally compelling.
-The back.
-I want to know what will happen next with my children.
I want to be here so they have a mother around who loves them so completely and is interested in everything they do.
-But... Yeah.
-Welcome.
-Michelle, these are my parents.
-Hi.
-Where is the mother of the bride?
[ Laughter ] So good to see you.
Congratulations.
Finally.
[ Laughter ] -He's making an honest -- Hi.
How are you?
He's making an honest woman out of her.
[ Laughter ] How are you doing?
-Dale, these are my parents.
[ Up-tempo music plays ] -You.
The chair.
♪♪ -That way?
-Okay, let me bring these up.
-This is nice.
[ Indistinct conversations ] ♪♪ -People, people.
Guests.
Family members.
Assemble... over here for a special presentation.
Minou enjoys water sports... [ Laughter ] ...and winter sports of all kinds.
[ Laughter ] This is not Minou's first wedding.
[ Laughter ] -Tim!
[ Laughter ] -An early example of Minou's religious devotion.
[ Laughter ] Great-Great-Grandma Bubba Hosek stands at the ready to throttle anyone who harms Minou.
[ Laughter ] That's it.
And a hand for my mom, who created the... [ Cheers and applause ] [ Doorbell rings ] [ Computer beeps ] -[ Whistling ] -Things have been very quiet at home.
A lot of filming going on.
We are supposed to be having deep and moving conversations about my illness, its impact on the family, mortality, the meaning of life.
-Why does "to boot" mean "besides"?
-I don't know.
-Like, why taking your boot... -I, um, I don't know.
-An extra kick or something?
What was the original meaning of "to boot"?
-I don't know, Pop.
-But I'm afraid nothing exciting ever happens and this film will be boring.
[ Computer beeps ] We need a house fire or a fist fight or something.
I was watching a movie with Julia Roberts wildly overacting, especially one scene in which she kept screaming "Eat your catfish!
Eat your catfish!"
to her family at the breakfast table, and I thought, "I can do that.
I can be a more dramatic me."
-What was your PhD dissertation gonna be on?
How far did -- You were ABD?
What was the thesis?
It was something about Native Americans, yeah?
Did you begin to write it?
Or research it?
-Half-written.
-Why didn't you finish?
Was it my fault?
-We went away to Chicago at the critical time in terms of writing.
I spent the next year tearing up the bathrooms and kitchen and retiling, et cetera.
And I did a lot of work for Said.
-Do you wish you had gotten your PhD?
[ Bell ringing ] -Tobii is a bitch.
It has broken again.
When I try to use eye gaze, it freezes up.
I cannot tell how maddening it is depending on this machine, the only thing standing between me as a human or a vegetable.
[ Bell ringing ] -Do you want to move there?
Prop?
Up?
Hands?
No?
You... Stup...
I... D. "Prop up, stupid"?
Oh, God.
Take this.
Take this away.
Take this out.
God.
You wasted 15-20 minutes.
Instead of saying, "prop the legs," you wrote five times, "stupid."
Seven sentences.
God, what's the matter with you, Kathryn?
I don't know.
God!
We can't let Kathryn dominate 45 people's lives.
We have to protect ourselves.
I mean, there's no way... What do you think, Noah?
-That's what I was gonna ask.
-Yeah, I mean, I think that she played a support role for a very long time, so she feels like she's now calling in her debts.
-Right.
I don't have that much more, that many years to live or anything.
But why should I waste the rest of my life?
I mean, I can't -- It can go on for another 10 years or so.
I don't think anyone's life should be sacrificed to that.
The alternative, of course, I kind of... Noah knows it and he doesn't like it, so I didn't mention it -- is, of course, to institutionalize her, so have someone taking full care of her, which is -- -She would abhor.
-...infinitely more -- which will not cost us anything, of course.
But it's not good for her.
[ Loud buzzer ] You need me?
That was for me?
[ Pumping ] More?
[ Pumping ] More?
[ Pumping ] More?
More?
[ Loud buzzer ] -She's asking me to loosen the... -Yeah.
This is -- This should be from here.
-No.
-You put it there.
-I'm about to lean her forward.
Forward and back.
And she says that's not loose enough.
If I loosen it, I have to put it -- -No, no, no.
That's loose enough.
-Yeah.
-What's the problem?
-She's not happy at all.
-Is this how you want it?
Kathryn.
Kathryn, what are you -- What's the matter with you tonight?
You're really the Princess and the Pea.
This is 17 times.
What is going on?
It's already 4:00 in the morning, Kathryn.
Try to go to sleep.
[ Ventilator hissing softly ] -Princess and the Pea?
Obscene.
Shame on you.
I am nothing but bone, ligament, and organs in a sack of skin.
Of course I am in pain all the time.
Being paralyzed, I cannot reposition myself.
I must rely on other people.
Too bad for me, the least helpful least sympathetic, least understanding person in my life is my husband.
Are you capable of paying attention to anything outside yourself?
Are you capable of paying attention to anything outside yourself?
Are you capable of paying attention to anything outside yourself?
Just feeding your fat gut and drinking like a fool?
Just feeding your fat gut and drinking like a fool?
You are the weakest person I know.
A few months ago, Said was getting ready to leave town for two weeks.
I wasn't even sure where all he was going.
I wasn't interested.
-Oh, hi, yeah.
Can I have two chicken curried rice?
-I have considered divorce.
But I would only get half Said's retirement fund and half the house.
It would be disturbing for him to sell.
And I am not out for revenge.
I just want to live peacefully with people around me who actually like me.
-He looked good with this black hair.
[ Laughs ] -Now, stop trying to make an expression.
You're a terrible actor.
[ Camera shutter clicking ] ♪♪ [ Grunts ] -Oh!
Very nice.
Yes, I saw the back of it.
-Yeah.
-Great.
Yeah, very, very nice.
Very nice.
-Yeah.
And this -- Lovely, lovely.
Lovely.
Beautiful color.
-This is my dear friend Frances.
We have been there for each other for almost 40 years.
We even designed the house in the Catskills together and helped raise each other's kids.
-Yeah.
-And I kept on the original price to show everyone what it... -You could keep that on forever.
-...what it cost originally.
-[ Laughs ] -And in case I wanted to sell it.
-Said is deeply concerned about the over-representation of Jewish interests at the wedding.
[ Laughter ] -Well, he doesn't have to worry.
I'm more worried about the over-representation of sociologists.
[ Laughter ] What time is your thing today?
-Well, I have jiujitsu from 4:00 to 6:00, but it's not essential.
Hi.
We were just on the phone and my other -- the phone died that we were speaking on.
Yes, yeah.
-I'll send someone new.
-Okay.
Well, she says it's better, I think, just to send nobody than to send somebody new.
-So send someone new for today?
-No, no, no.
It's better to send somebody -- just send nobody than to send a new person.
If you can find somebody who's come here before, then you can send them, but no new person, okay?
-I've called everyone who's been there before, and they're not available.
-I think no one.
-Yeah, I think just don't send anybody.
Thanks.
-Don't send anyone?
-Yeah.
-Okay.
Are you aware that your mom also refused a replacement aide for tomorrow morning, but Doris will be there for 3:00 p.m.?
-Yeah, I'm aware.
-Okay.
See you in a few hours.
[ Ventilator hissing softly ] -Okay.
-Are you missing something because of me?
-I have jiujitsu.
-This blanket off.
Crack window.
Left knee up.
Cushion is awful.
Are you missing something because of me?
-Well, working and jiujitsu, but neither are essential.
Crack window.
What else was there?
You're complaining about the cushion?
-Noah.
-Huh?
[ Yawns ] -This way?
-Okay.
But, um, okay.
It might feel mechanical to you, but I don't -- I mean, it's not as if your left side is lower.
Okay, fine.
You want me to do it again?
You -- every single time you go forward and back, you're shaking your head.
I don't think systematically we both have just completely forgotten how to do it.
No?
Okay.
You just said forward and to this side.
That was a millimeter to that side.
[ Sighs ] -Hey, Mom.
What's up?
-Minou, how do you feel now, love?
-Uh, I feel better.
There's just so much more to do and the people are coming in a couple -- I mean, in like two hours the caterers will arrive and we need to be able to show them what to do and stuff.
So I feel fine.
There's just a lot of work.
But it's good everyone's here helping, so, yeah.
Yeah.
-The one time I seriously feel like a helpless cripple is when I tell somebody not to do something with my body and they ignore me and do it anyway.
An unbearable violation.
-I think she wanted arms first, up in the air.
She wanted arms up, and then slide the arms through, and then on top of head.
-Yeah, but it has elastic.
It's much easier.
Just like you did with the thing here.
It's much easier.
What's the point of getting ultra-complicated?
There you go.
Bring the hand.
-Okay.
Oh.
This might work just great.
Oh, be careful.
-It has elastic.
-Oh.
Oh.
-It's on.
There's no need to complicate it.
[ Computer beeping ] If I was on that side, it would be much easier, too.
-It is my dress and my body.
You should listen to me.
-Kathryn, it has elastic.
You don't even need two people to put that one on.
If it doesn't have elastic, it's different.
-It is my dress and my body.
-I know.
-You should listen to me.
-But there's no reason for complication.
-Your earrings look really good.
Okay, I'll see you guys in a few.
-No reason to make things difficult than it already is.
-Noah.
-What do I have to do?
Why do I have to do it?
What?
Is this for Doris?
Do you want Doris to do this?
Move your legs and stuff?
I don't know what you want.
I'm busy.
Okay?
Is this important?
Is this an emergency?
-Seatbelt.
Sunglasses.
Make sure I'm on level ground.
Sunglasses are on back of wheelchair.
Bring alphabet.
Tobii off when we leave tent.
Napkin off.
Three.
Seatbelt.
Sunglasses.
Make sure I'm on level ground.
Sunglasses are on back of wheelchair.
Bring alphabet.
Tobii off when we leave tent.
-This is the only thing I'm taking.
-And the alphabet board?
-Okay.
-Right now we're going to the tent.
You're gonna be looking toward the house?
Yes?
Okay.
-Okay, what questions do you have for me?
-Well, he prescribed her with antibiotics four days ago, but they don't seem to be working.
She still has a fever and, um, brown mucous secretions.
And her blood pressure is dipping quite low.
And she wants to know if he's gotten all the test results back that she got last week.
-Okay, I'll tell him.
-Okay.
-I'll have him call you back.
-Okay, yeah, as soon as possible would be great.
Thank you.
-Okay.
-Thank you.
-Sure.
Bye.
[ Line disconnects ] -[ Sighs ] I don't know.
Is -- I mean... Should I be teaching her stuff?
You don't know?
-Higher.
A little bit higher so that I can lift this.
-Raise this up?
-Yeah, raise it.
Raise the lift please.
-Watch your face.
-My face?
-Yeah.
It was about to hit you in the head.
-Is this good?
No, no, no.
That's it.
Down now.
Down, down, down, down.
Further down.
Can it go down?
Yeah, I see what -- This is what you're... -Strap closer to crotch.
She said bring the strap closer to the crotch.
-You mean back here?
Ah!
-Her crotch is in this area.
-I thought I -- That's what I did.
-She doesn't -- She -- I don't -- I don't want to see her like this.
-Oh, God, Kathryn!
You don't want it?
Can we stop this whole thing?
-Take off.
-Take off what?
-She want it taken off.
She's saying take it off.
-Okay, take the [bleep] thing off.
You want this off?
-Take off.
Inexcusable.
Leave me alone.
-Yeah, you'll be alone.
I'll leave you alone as ordered, madam.
What?
What is it?!
-She probably gotta go to the bathroom.
-Well, she didn't want to.
[ Computer beeps ] -So when's Noah coming back?
-I don't know when he's coming back.
-It seems like she's more pleasant when he's doing stuff for her.
-Yeah, of course she's more pleasant.
Yeah, she is.
I am not sure he's more pleasant with her than I am.
So you want to use this, yeah?
-Yeah, ask her if she's ready, 'cause if she starts crying and everything...
I felt bad.
It didn't go good.
-Yeah.
-So just ask her if she's ready 'cause she did -- we were just doing it for like a hour.
She said it's supposed to take five minutes.
[ Computer beeps ] -Yeah, well, my dad isn't the best listener sometimes.
-Does anybody take a look under her buttocks?
'Cause it looks like the skin is not intact.
-Um, yeah, uh...
I don't know what right now, if she has open... bed sores, or...?
No, she doesn't.
But, yeah, I think the A&D treatment -- the A&D ointment is to help with that.
Oh, I don't know.
I don't really want to go putting nothing on that.
-Okay.
-I'm not supposed to put nothing on there if the skin isn't intact.
If it's not intact, I'm not allowed to do that.
-Okay.
Are you allowed to put A&D, or just -- -I can -- um, no, you're gonna have to do that... -Okay.
-...'cause the skin is not intact.
I have to report that.
-Um... -'Cause I don't want her getting no infections.
-Right.
Do you want us to put you down?
Do you want me to call Dad to do it?
Yeah.
Dad!
Dad, come.
-Dad.
-Now!
-Take this away.
-Yeah, she has... -Put the other one there.
You just... put that on and then I'll help you.
We have to lean her forward to Velcro it in the back.
-Okay.
-So you can change that out.
-Can you move this out of the way?
-Sure.
-Thank you.
-Yeah.
Tonight, I think that ship's sailed.
She's just gonna starve herself, so... -Well, what the [bleep] is that got to do with anything?!
Shakira has asked her several times if she wants her dinner.
-Yeah, I -- -What do you mean she wants -- she starved herself?
Well, too [bleep] bad!
Just give her the food.
And Shakira can give her the food.
I can give her the food.
The food's nothing to do with -- that anyone can't do.
The food has been made.
-Yeah, I -- -There's [bleep] balsamic salmon.
There's -- There's [bleep] -- -Dad?
Why don't you shut up for a second?
-Clam chowder.
There's $30 of [bleep] money in that little bit of food.
-Noah, I cannot take senseless yelling.
-Shut up.
We have neighbors.
-No.
-Said already screaming -- slash -- don't feel great.
Always have fever.
-Come on!
-Last month, fever.
-Okay.
-No reason yelling.
-What are you -- -Okay.
Shut up for a -- -You said -- you told him you're starving yourself because... -No, I deduced that.
-You deduced crap!
As usual.
-She starves herself when there's a new nurse and you because she doesn't want -- -That's not true.
Is it true?
-Yes.
-Are you hungry or not, Kathryn?
-No, she's decided she's not gonna eat.
But the -- -Well, I'm sorry.
That's a very dumb decision on her part.
I can't help it.
-Well, I agree, but... -I can't help it if she's dumb.
What can I do about it?
-Well, you can not throw a hissy fit every time you have to do the bathroom with her.
That's what you could do about it.
Mom, I mean, I can -- If you want to eat, I can do the bathroom with Shakira and I can show her how to do it.
That's no problem.
Why don't we just do it that way?
-But... we did the bathroom.
-Yeah.
-At 9:00.
[ Computer beeps ] -Um, you sure?
At least some water.
Mom?
[ Indistinct conversation, utensils clinking ] [ Computer beeps ] [ Indistinct conversation continues ] -Hey, do you think we can shift a little bit around the corner so that Kathryn can join the party?
-Yeah.
-Indeed.
-You let your hair down.
-Wow!
-All right.
-Wow!
-Mm-hmm!
Yes.
What was that gal?
Veronica Lake.
-Yes.
-Yeah.
-That's a Veronica Lake hairdo.
-[ Strumming guitars ] ♪ Make me a poster of an old rodeo ♪ ♪ Just give me one thing that I can hold onto ♪ ♪ To believe in this living is just a hard way to go ♪ ♪♪ -Noah was getting ready to leave for Turkey.
He would stay there doing dissertation research.
I'm always in a major state of guilt about how much he gets drawn in to help me.
So I'm very happy for him when he gets away.
But I had been in a terrible mood thinking of him leaving and struggling with my grotesque confinement.
-Forward, back?
Six, three?
Forward, back.
Six, three?
Three?
Noah?
-Alphabet board.
Did you do the alphabet board with her?
-No.
-She wants the alphabet board.
Always ask her if she wants to do the alphabet board.
No.
Why me?
Other people have to learn how to use the alphabet board.
T. W-I.
"Twice?
Twice?"
T-O.
Twice today you've had problems?
And people haven't asked for the alphabet board?
I believe you completely about that.
But are you listening to what I'm saying?
Every time somebody asks you, "Do you want the alphabet board?
", you should say yes.
Why does that upset you?
Why does that upset you?
-Okay.
-Okay, it d-- anyway, I don't know why you're crying right now, because -- I mean, I get that you're upset.
Okay, I understand that you want to say something.
I want to say something also.
It's because you're so upset that you're not communicating.
You're not giving them a definite answer when they say, "Do you want the alphabet board?"
Do you want to say something else with the alphabet board?
Is that a "no"?
Do you want to say something else with the alphabet board?
Yes.
Okay.
"How do you ask for the alphabet board?"
I'm saying, when it's not an emergency.
When you can use the Tobii.
Ask them for the alphabet board.
Do that frequently so people understand the alphabet board is important.
Now, do you have something that you actually want me to do right now?
Or do you just want to tell me that everybody is stupid?
"Want."
T-O.
"Want to."
D. I-E. You want to die?
Well...
This is...
Frankly, it's [bleep] selfish to do this before I leave.
You know -- You know I already feel guilty about leaving.
You're definitely intending to make me feel guiltier when you say that, when you say, "I want to die."
And you keep saying this right before I go.
You keep telling me, "Oh, it's fine.
Go to Turkey.
That's great.
Do your thing."
And then you do this.
And it's obviously...
If you actually were okay with me going, the nice thing to do would be to say, "Things will be okay.
I'm gonna work on doing these things.
I'm gonna do this stuff."
Instead, I mean, you're completely guilt-tripping me.
Why are you doing...?
[ Ventilator hissing softly ] -Don't cry, Kathryn.
Kathryn, don't cry.
♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ ♪♪ -Supercalifragilistic- expialidocious.
♪ Supercalifragilistic- expialidocious ♪ ♪ Even though the sound of it is something quite atrocious ♪ [ Ventilator hissing softly ] ♪♪ -My dear sweeties, I wanted to write down some practical things for you and a goodbye in advance.
You should know that I have a $20,000 life-insurance policy that is for you two to split.
Minou, my wedding ring is for you.
There are a couple ways to do this.
If one of my doctors is willing to come here, he can turn down the vent while sedating me with morphine.
Very peaceful.
Otherwise, you know how my breathing tube pops off several times each day?
Just make a point of being in the other room and not hearing the alarm.
And no embalming.
No fancy coifing.
No funeral.
Just a plain wooden box or an extra-large IKEA bag to get my body to the cremation place.
But have a party at home or in the park, if you like.
I would never get this sent off if I waited until I could write an adequate expression of what you two mean to me, how much I love you, how grateful I am for every moment with you, watching you grow up from completely captivating, bunchy little things to the amazing people you are today.
You have made me indescribably proud and happy.
-Huh?
A barber?
♪♪ ♪♪ -There we go.
There we go.
[ Indistinct conversation ] -You look beautiful.
[ Computer beeps ] -Lovely.
Lovely.
-On the way, the houses.
-It's beautiful.
-It's gorgeous.
-The center of the town was so full of people and restaurants.
-It's a nice place.
-So lively.
-It's a very, very nice place.
-I love it.
-Hi, Kathryn!
How are you doing?
Good to see you.
-Didn't recognize you.
[ Laughter ] -Yes, yes.
-This is my daughter.
-Exactly.
[ Indistinct conversation ] -Is that okay?
Is it okay?
Can I drive you?
Yeah?
Okay.
[ Guitar playing in background ] -You gotta come around this way.
♪♪ -I hope they thought to get something level for you.
♪♪ -There's a little bit of shade right here.
-There's room between the two chairs for you and your father if you want to try it.
-Okay.
-In the shade.
-Is the ground good?
Yes?
Good?
-Is this reasonably level?
-Three?
-Do you want a button pushed?
Yeah?
Button three?
-Man mast u tu dTwana.
Mara khana.
I mad.
I-I drunk and you mad.
Who then will take us home?
[ Laughter and applause ] -Kathryn's sister-in-law Laurie will read for her the passage that Kathryn has selected.
Laurie?
-"Atlantis," W.H.
Auden.
"Being set on the idea of getting to Atlantis, you have discovered, of course, only the Ship of Fools is making the voyage this year, as gales of abnormal force are predicted, and that you must be therefore ready to behave absurdly enough to pass for one of The Boys.
Farewell, my dears.
Farewell.
May Hermes, master of the roads, and the four dwarf Kabiri protect and serve you always, and may the ancient of days provide for all you must do, his invisible guidance lifting up, dears, upon you the light of his countenance."
-Do you promise to walk by her side forever and to love, help, and encourage her in all she does?
Do you promise to take time to talk with her, to listen to her, and to care for her?
Will you share her laughter and her tears, as her partner, lover, and best friend?
Do you take her as your lawfully wedded wife for now and forever more?
-Mazel tov!
[ Cheers and applause ] -[ Whistles ] [ Cheers and applause continue ] [ Up-tempo music playing ] [ People clapping along ] ♪♪ ♪♪ -♪ Whoa!
I feel good ♪ -Oh, now you're talking!
Now we're talking.
-♪ I feel good ♪ -Up.
-♪ I knew that I would now ♪ ♪ So good, so good ♪ ♪ I got you ♪ ♪ Whoa!
I feel nice ♪ ♪ Like sugar and spice ♪ ♪ I feel nice ♪ [ Down-tempo music plays ] -Come say hi to us, 'cause you're too beautiful to walk by.
-The ceremony and celebration were magical, and Minou was so beautiful.
She didn't sit down once.
I would say everybody had a great time, though I don't think Harel's family thought much of Said's long-winded, insane toast.
-Jean Aubin, who was this French historian of Iran, a great man saying something that, um... about my book.
The first book, like Harel's book.
This was a very good book.
[ Laughter ] And so, what he said... -How was your night, Kathryn?
Good?
-The most ridiculous thing happened.
The battery for my ventilator wore down completely.
The alarm was ringing, but it could not be heard because of the music.
My air was cut off.
All I kept thinking was, how ghastly for Minou and Harel to die at their wedding.
[ Laughter ] -Ghastly.
That would be the word.
[ Laughter ] -Very classy, French-looking wrapping.
-♪ There's a little farm, a sleepy town ♪ -I'm bursting with happiness.
-♪ And a ragged barn ♪ ♪ Generations were born and raised ♪ -Okay, off to the car?
-Okay.
-♪ On that 90 acres ♪ Back to civilization.
Mwah!
-Have a good trip home.
-♪ Babies came and the family grew ♪ ♪ Kids and grandkids, they all worked and played ♪ ♪ Amazing Grace, I'll fly away ♪ -Okay, now I'm gonna drive her back 'cause I actually need five minutes to take apart the camera, but I didn't want to tell you that in advance so I would get an authentic goodbye.
-[ Laughs ] -♪ 'Cause Heaven waits ♪ -I really hope this film does not elicit a response like, "How pathetic.
How can she live like that?"
I'm hoping for something along the lines of, "Boy, is she plucky."
-♪ From journey's end ♪ [ Indistinct conversation ] ♪ From journey's end ♪ -Okay.
And we're off.
♪♪ -♪ Through the good times and the lean ♪ ♪ Winter's chill ♪ ♪ And summer's green ♪ ♪ The breath of spring ♪ ♪ In every newborn's cry ♪ ♪ There's wagon rides on brisk autumn nights ♪ ♪ It's journey's end ♪ ♪ I got a simple prayer ♪ ♪ Find the way, Lord, to get me there ♪ ♪ 'Cause Heaven waits ♪ ♪ Down a wooded lane ♪ ♪ And I'll never, ever stray again ♪ ♪ I swear I'll never stray again ♪ ♪ From journey's end ♪ ♪♪ ♪ From journey's end ♪ ♪♪ ♪ In a breathless lover's whisper ♪ ♪ A wider world beckoned me ♪ ♪ All wanderlust and wild oaks ♪ ♪ I'll wave goodbye and hit the road ♪ ♪♪ ♪♪ ♪♪
