Original subtitles

[chalk scraping]

[soft music]

- [Jason] When I was 10 years old, your grandfather--

- How you doing?

- [Jason] Brought a camera home

from the school where he taught.

And he showed me how to use it.

- I wouldn't trade them for anything in the world.

- [Jason] I filmed your two uncles, your grandmother,

and sometimes, myself.

- [Ed] I think we're lost.

- Yes, what's going on?

- [Jason] It was through the camera

your grandfather taught me how to be an artist.

- [Ed] This maze is killing me.

- [Young Jason] Help!

- [Jason] This film is a way of passing

these things on to you.

In fact, it's about you and me.

[soft music]

To tell our story,

I have to go back to 2005,

when I was diagnosed with this.

Multiple sclerosis is when your own body

thinks that your nerves are the enemy.

It results in the loss of muscle control,

vision, balance, sensation,

and the whack load of other problems.

Primary progressive multiple sclerosis

is the hardest hitting form.

I can sum it up in three words.

Pretty fucking scary.

I really wanted you.

But with MS, I wasn't sure if I was able to have kids.

That's when I met your mom.

She was smart, beautiful,

and maybe because her mom had MS--

- Are you ready?

- [Jason] She was understanding about my condition.

How is it that you're so magical?

[laughs]

- You're silly.

- She became my creative partner.

That over there.

It seemed like a perfect relationship.

We had a commitment ceremony in the park.

[clapping]

Within a couple of years,

your mom got pregnant with you.

[laughing]

Just before you were born,

we were invited to screen my last film, When I Walk.

- [Announcer] Ladies and gentlemen,

Jason DaSilva and Alice Cook.

[clapping]

- [Audience Member] When is your baby due?

- Baby's due actually on Valentine's Day.

- [Audience] Aww.

[laughing] [clapping]

- Hi sweetie, it's okay.

- [Jason] The day you were born

was the best day of our lives.

- It's okay.

Thank you to all of you.

- [Nurse] Oh you're welcome, you did great.

[baby crying]

- Yeah.

[nurses mumbling]

- [Jason] He's really cute.

- [Alice] What's the name?

- Jason Savior DaSilva.

It's a really cute name.

- [Alice] He really looked at you a lot.

- [Jason] He was looking a lot.

- [Alice] He likes staring at you.

[soft music]

- Yay! - Give him a kiss.

Give him a kiss, yay!

- Look at that, that's a camera.

Pretty cool, huh? - I'll show you.

- [Jason] What do you think, guy?

- Just turning on your chair for you.

[soft music]

- [Boy] Oh yeah.

[laughing]

- [Alice] Just don't give Daddy any break.

Just stuff it.

[soft music]

- [Jason] I love you so much,

but I'm still nervous about being a father to you.

Especially with my disability.

So I called my dad for advice.

He was my idol growing up.

Even though my parents split up

when I was a teenager,

my dad stayed close by.

- [Jason] Yeah, I do need help taking care of you,

but I can still be a good father.

But there are so many places I can't share with you.

[beeping]

All around the city,

all around the world.

Accessibility is a critical issue.

It's why I developed an accessibility website and app.

Your mom and I work on it together.

- As you can see, this place is kind of

amazing for accessibility.

Huge entryway, totally flat.

No lip here whatsoever.

I'm gonna give this place five stars.

- Everybody understands what it's like

to lose your freedom and not being able to go someplace

just because of a step or a flight or stairs.

This is the first time that we're able to map Tiblisi.

We're coming up with X Map 2.0,

which will release a new API function.

- [Member] The next speaker will be Jason DaSilva, please.

- It was fine until I became disabled.

We have a wonderful son, Jase,

and I just wonder,

am I gonna be able to be with him

and go to things like his baseball game?

I dream of a world where it's 100% accessible.

Meanwhile, I get recognition for When I Walk.

- And the winner goes to When I Walk.

- This award is dedicated to all people with disabilities

from around the world

that are putting their stories onscreen.

You're making this world a better place

and changing media today.

And I started working on this film.

Yeah, that's good.

[mumbling]

- [Marianne] Oh my God.

[laughing]

- [Jason] I feel like a lucky guy.

Your grandmother says--

- [Both] You have angels taking care of you.

- Thank you, Miss Positivity.

I feel like my life is moving forward.

But so is my MS.

And I now need 24 hour care.

[soft music]

[babbling]

[soft music]

Makes me sad to think about

what I'm gonna be like as you get older.

It makes me sad that you wouldn't really know me

as somebody who would get out and do things with you.

But I mean, in a way,

making this film is the way that

I can show you what I was like

and talk to you about challenges.

It turns out one of the biggest challenges

was for me and your mom.

Okay.

50% of couples where one spouse has a disability

end in separation.

The other person is more prone to caregiver burnout.

And that's what happened to us.

I thought long and hard about sharing this with you

and I think that you should know what happened.

I can't speak for your mom,

so this is just my side of the story.

I'm not exactly sure when things started to go wrong.

But it may be when we decided to move

from Brooklyn to Manhattan.

I'm really glad we're moving.

I'd like to do things outside of just one neighborhood.

Seriously, what's the point of being in New York

if I don't get to do that?

- I don't know, that's why we're moving.

For you.

- [Jason] And I think it'll be good for Jase.

- He has the park here.

We're not gonna have a park.

And last summer, we sat in the park.

That's all we did was play in the grass.

- [Jason] But for the last couple times,

we tried to go out just for doctor's appointments.

I had to cancel them because I couldn't even

drive to doctor appointments.

- That's why we're moving.

- I'm curious if other places are like this.

- I don't want to live in New York our whole life.

What if we want to go somewhere?

But then it depends on the care in that state,

in that country,

and the care in New York, it turns out,

is pretty good.

So could we match it?

I don't know.

The two of us being basically confined to New York

as long as we are a couple.

If we can't make it in New York City,

then you're gonna be in a nursing home

and we're gonna live in Oklahoma or something.

I don't know.

- [Jason] We look at places to live

that might be better suited for raising children.

We start where we have relatives.

Florida, Toronto, and Vancouver.

Where we celebrate your first birthday

with my crazy family.

- Again.

♪ Happy birthday to you ♪

[cheering and clapping]

- Clapping, Mommy gets to blow the cake.

- One more time.

Here we go. - Here we go again.

- Ready, set. - Make a wish.

[cheering and laughing]

- [Jason] The question that we both have

is where should we end up living?

- I was just thinking of that just yesterday.

And I'm thinking down the road,

'cause I'm getting older,

thinking of the future.

- I think we want to.

The trouble is Florida, the care there.

I think they'd force him to a nursing home.

- That's probably the care here is the same way too.

- Yeah, exactly. - Come.

Sorry, he's gonna, we can just pass him back and forth.

- [Jason] So right now, we have the best care

that we would have.

- Exactly, New York gives the best equation.

- [Marianne] Yeah, response.

- Here, you can stand.

- [Jason] As soon as we get back to New York,

we move to the East Village,

where we try stuffing our family and my care aides

into a small one bedroom apartment.

- When they're not here, we could.

- No, I can't, it's...

- Yeah but they have a...

The thing, no, that's not true.

[Jace babbling]

Yeah, that's right.

Before long, we were celebrating your second birthday.

- Come on, big blow.

[clapping and cheering]

[people chatting]

[soft music]

- [Jason] I'm delighted that you're

getting around more than ever.

But I hate that I can't always follow you.

- Daddy?

Daddy?

Daddy?

- I think he needs help.

- Yeah. - You want to go?

- Oh hey there, you.

- He's over there. - Okay.

- No, I can't.

So here I am at 35,

but I feel like I am much older

and I don't know if it's because

we have a baby right now or

maybe we got married too soon.

Maybe...

I don't know.

We're older.

This is how we were.

But yeah.

Your mother and I aren't going through

the best of times.

We're going through difficult situation.

So, we spend a lot of time arguing to each other and

I can't tell you the last time that

she slept in the same bed as me.

I don't think that I signed up for that.

I almost didn't put the next scene in the film

'cause it deals with sex.

But it's an important part of life

that you'll understand when you get older.

It all started when I called my friend Davey

because your mom and I weren't sleeping together.

But Jase, take it from me.

You ever have relationship on the rocks,

don't do this.

- [Davey] Hello?

- [Jason] Hey, Davey.

- [Davey] Hey, how's it going, man?

What's up?

- Okay, so imagine if you were in my situation.

Where you're trying to use your hands,

you can't see properly, you're in a wheelchair.

I'm just like, I have no idea what to do.

So I just am sitting,

sitting, waiting for nothing to happen.

- [Davey] Well, there are services

for people that are handicapped to get that stuff done.

And it's legal.

- Oh really?

- Yeah, I didn't know about that.

- [Davey] There's also a network within

the handicapped community that will do it for free.

They come over and do that for you.

You know what I mean, if you want,

I'd be happy to get some information for you.

- Yeah, yeah, that'd be good.

One week later, I find somebody through

the disability network.

But cheating on your mom doesn't solve anything.

Instead, it pushed us further apart.

I mean, I've tried to set aside some time,

but it hasn't really worked out.

It's like I'm constantly surrounded by

care aides and that type.

There's no time or break for me.

So I just can't handle it.

- Yeah, yeah.

I don't know, yeah, I'm frustrated.

- As far as Jason, I still love him.

I want to be with him.

I like the relationship.

I'm just physically a mess and tired.

And I can't do the things that he wants me to do for him.

It's not complicated.

- How can you be physically more of a mess right now

than what I'm dealing with

on a day to day?

Do you put them up against each other ever?

- I don't know.

I mean, you don't,

if I were like you, then we couldn't,

I mean, we really wouldn't survive.

I'm keeping us afloat.

- I used to go.

I gave Jason so much TLC.

My whole life was dedicated to caring for you

until Jase was born.

- Yeah.

- Okay, let's help Daddy real quick, watch.

Watch Mommy help Daddy.

[Jace crying]

Okay, let me pull him more and you lift.

It's easier.

Jason, I need you to put your arm...

[Jace crying]

Oh okay, come here.

Come out, okay, I gotcha.

Okay, I give up.

Oh God.

Okay, come on.

- I see your mom getting pulled

in so many different directions,

including working full-time to take care of us.

But still, I'm not doing my job taking care of her.

That's pretty good.

- For some reason, he won't hold his own bottle.

We have yet to figure that out.

I don't quit because he doesn't let me.

- [Jason] Can you come and hang out?

I'm disabled but I still have responsibilities

like everyone else.

- [Alice] Feeding ourselves.

- [Jason] While I do like the East Village,

our apartment is expensive.

But because of my disability,

I qualify for a rent subsidized apartment

in Long Island City, Queen's.

- [Realtor] All the apartments have

a stainless steel refrigerator,

stove, there's a dishwasher, microwave.

- No.

- It's great.

- [Realtor] You just need to sign

and then you can date on top here.

- It's one of the best buildings in Brooklyn.

- Queens. - Or Queens.

In both.

[soft music]

So, as soon as the paperwork goes through, we move.

Even though the new apartment is much better,

we decided to look at places outside the city.

The next stop?

Austin, Texas.

- [Jason] Before we get home,

your mom starts researching jobs in Austin.

[soft music]

- Like this, watch here.

Blow.

[cheering]

- Oh no! [laughs]

Oh, I thought they were trick candles.

Yay, Jase.

- [Jason] Not long after your birthday,

your mom accepts a job in Austin.

[cheers]

I don't want you to leave.

Your mom says she can give you a better life in Austin.

She might be right,

and I figure I can always move there later.

So I agreed to you both leaving.

- [Alice] I only got that many boxes.

- [Jason] But then in no time,

the boxes are packed and you're ready to go.

- Going to go, I wish.

- Are you gonna go to Austin?

- I'll go all the way to the track.

- [Alice] You're gonna go all the way to track?

- To the woods.

- And you're gonna take a plane.

You go up, up, up.

- He's sad.

Now he's sad again.

No, don't be sad.

You're sad again.

- [Woman] It's okay, here.

Don't be sad, Daddy.

- [Jase] Don't be sad.

- [Woman] Don't be sad, Daddy.

[laughs]

[muffled chatting]

[soft music]

- [Woman] No, no, no, no.

[soft music]

Okay.

- Thank you.

[soft music]

- Good morning.

Having trouble with your legs last night?

- [Jason] Nope.

[cat meows]

[soft music]

- Okay, coming down.

Here we go.

[groans]

[phone ringing]

- Hey Jase, how are things there?

You can turn it to the side.

There, that's so much better.

Put it the other way, it's better.

- I can see you more, Jase.

- No.

Do it like that.

- Don't do that.

Put it the other way, it's better.

[laughs]

- [Jase] Now can you get some more dirt for me?

- [Alice] Yeah, let's go get more dirt.

- Wow, this is really fun.

[soft music]

- [Jason] Do people ever go blind because of MS?

- You can.

I would say it's definitely the exception.

Usually, you're not blind blind,

which is the good thing, at least.

Not that, I believe for a filmmaker,

this degree of impairment obviously

is a major impact.

But it's, yeah, that's the nice thing,

is that you're usually not left totally blind.

- Yeah, okay, cool.

[soft music]

- I'll show you a little vocal warmup

that we haven't done before.

So can you do a yawn sigh?

Sort of a yawn and a sigh together.

So it's like this.

[yawning]

And now we'll do the fog horn.

[moaning]

Can we do our sustained ah?

[moaning]

That's enough, yeah, good time.

That's awesome.

[moaning]

That's it, you did great.

- In addition to problems seeing, talking,

swallowing, and breathing,

I can no longer use my hands.

I am officially quadriplegic.

For years, I've been tracking myself

on the Expanded Disability Standard Scale.

I'm now a nine, which means I can't care for myself

and I'm restricted to a wheelchair.

Jase, this is hard to talk about,

but you should know,

there's only two stops left on the scale.

9.5, which means I can't communicate or eat,

and 10, which is death.

So right now I'm at an EDSS score of nine.

So how much time do I have?

Because I do know that 10 is death.

- No one can say.

Because it's still your body.

Your body, how it take,

fight with all the other comorbidities

that comes on that time.

Because 9.5, you need ventilation to breathe.

You need external sources for nutrition and everything.

So, you're still alive,

but with the machines.

Your whole system are shutting down gradually.

That I can say.

It's not good to say, but I'm sorry.

[laughing]

- It's okay. - Okay.

So, this is sad part to discuss,

but still, this is reality.

- Exactly. - That's important.

- I mean, it's more important to me to know these things

than to not know these things.

- Yes.

- Okay, put your head back down for me.

Is that a comfortable spot

or do you need it back further?

- Another point on the scale means another change

so I can keep moving around.

- Let's go for a spin.

Just to see you drive.

Head back at the same time.

Let the chair travel straight.

You keep trying to straighten it, you're fine.

Keep your head in the middle.

You got it.

- Yeah, it's good.

- Stop, stop, stop, ah!

- Look ma, no hands.

Jase, if you ever get in a difficult situation,

don't be afraid to ask for help.

That's what I have to do.

I need new assistants to both take care of me

and help me with my work.

I'll just run through my schedule.

So, I get up and get ready.

I need somebody's help to change my clothes,

brush my teeth, putting on my shoes.

I would need help transferring to my wheelchair.

Get coffee in the morning, take my medication.

Do things like look at the computer and type.

So I'll need you to read back the emails to me

'cause I can't really see the screen.

And what about using the urinal or the bathroom?

Do you feel comfortable about doing those things?

- [Candidate] Sure.

- Do you think that you could do that?

- [Candidate] Yeah.

- I'm very disabled and very busy.

I go to film festivals.

I went to the White House two weeks ago.

Two nights ago, I was just in the Korean ambassador's house.

So are you okay with working late though?

Are you wanting just the day shift

or the night shift?

Do you have any questions for me?

- [Candidate] Um...

- [Candidate] Um...

- [Candidate] Um... [doorbell rings]

- Hey, morning, Jason.

- [Jason] So I hired the best assistants that I can.

- Yeah, see you tomorrow.

- [Assistant] Hey, Jason.

- [Assistant] Bye, Jason.

- Hey, Jessica. - Hey.

- Hey, George. - Hey, Jason.

- Bye. - Bye.

[phone ringing]

How was school today?

[babbling]

Was it fun?

[babbling]

Was it really fun?

[babbling]

You're being really silly.

Say something in English.

Say some words.

[babbling]

Say some real words.

Okay bye, Alice.

- [Alice] What?

- He's not talking.

- [Alice] Jase ate so much food today.

- That's good, Jase, you're getting big.

I honestly can't keep doing all this by myself.

Really, really hard.

I didn't do anything wrong for you guys to go.

- [Jase] Daddy, Daddy, Daddy.

- I'm sorry, I disagree but--

- Yeah I know--

- Fully, but I'm gonna-- - Why do you disagree?

- I can earn a higher, much better,

I can give Jase a much better life here.

I'm 20 times better here.

- So is that reason enough to move away from his father?

You think that's reason enough

to take him away from his father?

- I can't make it in New York.

Yeah, it is. - You can make it fine

in New York but whatever.

Maybe you win. - I just can't do that.

- That's not true. - I couldn't make it

in New York.

So I'm gonna take them,

I gotta get him some dinner.

And we can talk to you after if you want.

- Okay.

- Okay, all right, bye.

So this is us on a typical day.

This is Jason's editing.

- I'm still confused as to why your mom left.

So I end up looking for answers

in an unexpected place.

My last film.

- Don't want Jason getting any worse.

And it just keeps coming.

It's like I take his hands a lot.

How fast he talks and how loud he talks.

- Do you ever wish that you were

with somebody able-bodied?

- Yeah, but I wish, I wish you were able-bodied.

That's who I wish I was with.

- [Jason] What happens when I can't eat my food?

Will you be the person that feeds me?

Will we come to a restaurant

and then you feed me the food and then

eat your own food too?

In front of everybody else to watch?

- I don't know, I don't know.

- Why are you going on a trip?

- Going on a trip to get away from you.

I'm on the verge of insanity.

I have to leave for my own mental--

- Yeah, I know. - State.

- Yeah.

- I've been taking care of you for two years straight

and I-- - Yeah, take a break.

- The shittiest part of this whole thing

is that we're trapped.

- I was too caught up with making the film

and dealing with my own MS.

I just saw her love for me,

not her concern about the burden she was taking on.

I talked to my friend Alberto

to get his thoughts.

So you and I have known each other for a long time, so--

- Almost 10 years or something.

- Yeah, that's right.

So I know that your partner left

something similar to what happened to me.

How did you deal with that?

- If you want me to be honest to you,

and not taking sides or just being more logic and fair,

I don't blame them for wanting to leave.

I mean, imagine waking up to someone

covered in piss, stiff, next to you.

It must be hard.

And if I could run away from myself, I would.

I felt like if I was not disabled,

things could've worked.

Just have this fire inside of me

that just wants to get up and run

and take life by the horns like I used to do.

- I feel exactly the same way.

And that's why I'm trying to do what I do.

That's why I keep on doing what I do.

- That's why I'm right here with you,

because to me, you're an example for me

as a disabled person,

and for a lot of walking people that

they have all the tools

and they don't do much.

- Problem is there's my kid

in the middle of it all.

So, I want to be close to my kid.

- [Alberto] As you should be.

And you're just being a good dad,

a normal person, a normal dad,

by trying to be close to your son

and give him all the knowledge

and love that you can.

- [Jason] Yep.

I see similarities between what you're going through

and what I went through when my parents split up.

I asked my mom about how their marriage ended.

- All right.

- [Jason] Your grandmother doesn't want

to talk about her kids being hurt by the divorce.

I understand.

I don't want you to be hurt

by your mom and me splitting up.

[soft music]

I miss you so much.

I go to Austin to visit you.

On the way there, I stop in Utah to see my dad.

- I'm ready for the lesson.

Okay, go for it.

Right or left.

- [Jason] Yeah, good.

When you were growing up,

you always wanted to be kind of creative

and do stuff with film.

And you have another side to this.

It's the music side of it.

So you did some when you were probably

in your late teens and stuff.

You had a band going strong.

You did a little Canadian tour.

- But your dad used to play

a really good classical piano.

- Oh yeah, Jase should keep the ball rolling

by keeping on that musical family line,

so to speak, from my dad through me through you.

And I can bring him over,

I'll go wherever he is and show him the ropes.

- Thanks a lot.

That's very helpful.

- That's what fathers are for, yes.

Teaching you how to play piano.

- I didn't realize it but

you went through a lot of the same things

I went through.

- Very true.

It's just getting used to an empty house.

Coming back to an empty house.

But after some time, things heal.

Because you guys are still around,

so I could see you from time to time.

Your situation, that's more traumatic.

- It's a matter of getting used to it in time, I guess.

I decide then and there

not to let time and distance be an obstacle for us.

- [Flight Attendant] Up, need up.

- Here we go.

[upbeat mellow music]

- Do you need help? - No!

- Jase and I, we got a really cool train yesterday.

And it's the same color as,

it's his favorite color, is blue.

Do you want to show them the train?

Show the camera the train.

Yeah!

It's so cool.

Where we're going now.

Now when we're together in Austin,

it's just you and me.

And my care aides.

And your babysitters.

We're gonna go there.

Do you want to go see a monkey?

I need to be in Texas with you.

I just have to make sure my carer

will be comfortable navigating.

[phone ringing]

- [Andrew] It's Andrew, how can I help you today?

- Hi, I'm calling if you know details about home care.

- Yeah, that's right.

- I'm just wondering if there's a way

to stay at home rather than be admitted.

Would I have to be in one of these nursing homes then?

- And then you're still only able to get

between 40 and 50 hours a week.

- As part of my research,

I interview people with disabilities

and their supporters in Texas.

So I found out that Texas is one of the

worst places to come to be a person on Medicaid.

So I guess the question is, is that the case?

- Oh yeah, it's absolutely the case.

In fact, the rankings you've seen are correct.

Texas, its most recent one ranks 50th

in community services for people with

intellectual and developmental disabilities.

So, that includes the district of Columbia,

so there's 51 on the list.

So there's, somebody's below us but

we're right down there at the very bottom of the barrel.

- [Jason] So, do you have an answer

as to what I can do to be closer to my son?

- I've thought about this

as long as you and I have been talking.

We've done phone calls and emails and stuff.

And it's almost like you'd have to reconfigure

your life entirely, Jason.

And by that, you would maybe have to find a partner,

a life partner, who would be willing

to move to Texas with you

and fill in the gaps that you would lose.

That you'd lose in Medicaid coverage.

Because I just can't see that you could come here,

be close to your son,

and find yourself in a position

that the only way you can get the care you need

is to go into a nursing home.

And you'd find yourself, again,

isolated from the child you want to be close to.

This is just insane.

- So, what do you think I should know in my situation?

I want to be closer to my son,

but I can't move here without

going into a nursing home

or getting the minimum amount of hours.

- We tell our New York brothers and sisters,

it's a different world.

It really is.

It's the nature of the Medicaid program.

It's always been a state federal share.

Different than Medicare.

Medicaid dollars are only drawn down

by how much money the state puts up.

There's no income tax in Texas.

So, it makes our whole revenue base much lower

than other states.

- [Jason] So how do people with disabilities

even survive here in Texas?

- I have a dramatic brain injury

caused by a motor vehicle accident.

- Most people don't know anything about disabled people

until they have a loved one that becomes disabled

or they're disabled themselves.

That's the wrong time to find out

that we're on the short end of the stick.

It doesn't make any sense to have one state

that has one set of rules,

that people would have to actually

move to a state or move somewhere else

other than their home

to get certain benefits.

- [Jason] Maybe I could live in a neighboring state.

[phone ringing]

[phone ringing]

- [Machine] One moment while we transfer you

to a customer service representative.

- Oh.

I zeroed in on the healthcare

across the different states in the US.

I look at every state in the country

to see how well they support people with disabilities.

Topping the charts,

Arizona, Vermont, Michigan,

New Hampshire, and the lovely Hawaii.

And down at the bottom,

we find Illinois, Arkansas,

Mississippi, Montana,

and Texas.

Of the 50 states plus Washington DC,

New York is number one for supporting

people with disabilities,

while Texas clocks in at 50.

[thunder rumbles]

These basic support services for people with disabilities

are a human right.

[muffled chatting]

The only way to live in Texas

is to live in a nursing home.

- Okay, one, two, three.

- [Jason] So, I give it a try.

[soft music]

[knocking]

- [Nurse] Good morning.

- Could you push it up?

- Up in the front? - Yeah, yeah.

Yeah, that's--

- [Nurse] Is that good?

Can you see it?

Oh, here. [laughs] - I can't see it.

Can you put a washcloth on my face?

- [Nurse] Just a warm washcloth sitting on there?

Okay, yeah, let me get a clean one.

I don't know if that's--

- No, I mean, if you could just get the--

- [Nurse] Oh, just want it over your eyes.

Okay, sorry.

I thought you meant to open your pores or something.

[laughs] Sorry.

You're on thin liquids?

- Nope.

- [Nurse] Does he need thickened liquids

or is he on thin liquids?

- What do you mean?

- [Nurse] I just want to make sure

'cause I don't wanna choke you.

- Regular liquids is fine. - Regular, okay.

One more drink?

- No. - Okay.

[soft music]

- [Jason] So his name is Jase.

- Jase? - Jase.

Yeah.

Yeah, he's four years old.

The old people here are older than me.

They're all older people.

But they're really nice.

- Let's go. - Yeah, let's go.

- Let's go. - Yeah, let's go.

- Hey, let's go.

- Okay, let's go.

Say bye, Jase.

- Bye.

- Bye.

- It turns out that 50 to 60% of people

die within the first year of living in a nursing home.

Jase, I want to say to you

that I want to be here with you but

I would die a slow death

or die a pretty quick death.

So, sorry, but I'm not gonna be able to do this.

So, see you later.

When I get back to New York,

I asked my mom what she thinks about the nursing home.

- [Marianne] Do you want to live in Austin, Texas?

- I would live in Austin, Texas

if it was okay to live there.

- So is there a guarantee that you have

your own place to live with caregivers?

Is that a guarantee right now?

Now, next month, is there a guarantee?

- I don't have a choice. - This is your choice.

You have a choice.

You have a choice to live independently here

or you have a choice- - Or to be by my son?

- Or to be institutionalized.

- The choice is

to be by my son. - Your son might not

be able to visit you that often,

and you think 'cause you're--

- What if I was in there--

- He has the,

well who's gonna bring him there

to visit you every day?

Who's gonna bring him there to visit you every day?

It doesn't happen in reality.

It doesn't happen.

So then you know what, you have to make a choice.

Either be in an institution in some other state

or be here where you can live independently

in your own place.

And do what you love to do.

I mean, documentaries.

And I think that's what you should aim for

because life is short and then we die anyway.

- [Jason] There's one more option.

You and your mom could move back to New York.

I make a hard decision.

I go to Queen's County Family Court.

I asked that you and your mom return to New York

as soon as possible.

I'm so certain that the family court

will understand how important it is for a father

to be with his son

that it will quickly order you and your mom to return.

I'm assigned a court appointed lawyer

and the court makes its first decision.

That I get daily Skype calls with you.

- Mom, no.

- [Alice] Okay, that's fine.

- Why'd you do that? - No.

- [Jason] Jase, why'd you do that?

What's that, what's that?

[yells]

- I don't want to talk to Dad.

- [Jason] But I want to talk to you.

- [Jason] The apartment 10E is really nice.

The outside is really nice

and the Empire State Building is outside.

- [Jase] You're a bad daddy.

- I'm a good daddy and you're my best friend.

Jase, what are you making?

What's that?

What's that, oh jeez.

[mumbling] - [Alice] Yes, Jason.

My relationship with you

is much better in person.

So I start traveling to Texas as much as I can.

- [Man] Do you want to go down and ride the bear?

- [Jason] Let's not ride the bear, Jase.

- No.

- No, I don't think that's a good idea.

- Daddy said no.

[soft music]

And then the guy goes ah!

- Ah!

[soft music]

[blowing] Blow it, blow it.

[cheering]

- [Alice] Good job.

- [Jason] It's the big four.

- [Alice] Nice one.

- [Jason] Jase is the big four.

- There you go. - Good job.

- Look at all this smoke.

- [Jason] Happy birthday to Jase.

Look at that, Jase.

It's your very first remote control helicopter.

- I want to open it.

[blades whirring]

- [Jason] Jase, you're really good at it.

- I wanted it to turn.

Yes!

[machine whirring]

[squealing]

[sirens blaring]

- [Paramedic] Gonna check your blood sugar, okay?

Is that okay, Jason?

- [Jason] I didn't know how much the stress

and travel were affecting me.

Until I had my first ever seizure

while I'm still in Texas.

[sirens blaring]

I want to see you,

but I don't want to get any more seizures.

So I stop traveling.

Meanwhile, I go to court periodically,

but nothing else happens.

The legal case is stressful and time consuming.

But going to court felt like the only way

I can make sure that I see you as much as possible.

Meanwhile, with your mom no longer here,

it's important to have a relationship in my life.

Can you say something about looking for

that special someone or looking for love or anything?

- [Assistant] So it should be in your self summary.

We'll make this enjoying life, creating films,

and trying to make the world a better place.

- Just say, looking for something real.

- [Assistant] Looking for something real.

Do you not say anything about having MS?

- No, no.

We decided not to say anything about that on here.

- [Assistant] Isn't that catfishing?

- Actually, that's a really good point.

On another one, no, it's not catfishing.

- [Assistant] Are you sure, it's the same thing.

- No, it's not.

What is catfishing?

- [Assistant] Where you meet someone

and it's not what they portrayal in mind.

- Is that all catfishing is?

- [Assistant] Yeah.

If you put up a photo of you from 2002.

So, these are your photos?

- Yeah. - Okay, then you're fine.

You're not catfishing.

- So okay, let's go to a different website then.

So go to Bumble, that's the other one.

To use, this website's interesting

because the girls make the first choice

of whether they want to meet up or really talk to you.

So you can choose whoever you want but

they are the ones that actually end up choosing.

See, I'm totally doing this by looks right now.

That's a yes.

Yes.

- [Assistant] So wait, I thought you had blurred vision.

How are you all of a sudden able to have such

good vision to pick girls' attractiveness?

- 'Cause you hold something close up to me.

This is close enough to see.

See how my life has changed?

I had to go online.

Swiping left or right on dating profiles.

No.

No.

It's funny what I have to do to entertain myself.

To not go crazy.

No.

Yes.

As much as I tried to work up enthusiasm for dating,

my heart is with the four year old living in Texas.

- Hi, Daddy.

- [Jason] Hi, my friend.

You're my best friend.

Hi, best friend.

I'm watching you grow up

in the four corners of a computer screen.

[soft music]

The court process is a race against time.

I'm here for a custody hearing.

And hopefully I'll be able to get something

out of today because I didn't realize

how slow the court process is.

- [Bailor] You swear to tell the whole truth,

no matter, before this court?

- [Alice] Yes.

- [Bailor] Your name?

- [Alice] Alice Cook.

- [Bailor] You swear to tell the whole truth?

- [Jason] Yep.

- [Bailor] Your name, sir?

- Jason DaSilva. - Thank you.

- [Jason] Then the judge ruled

that you will visit me in New York

one weekend each month.

At last, I can see more of you.

- Now let's see the other one.

The other one. - Just be careful.

- [Jase] There's more than one.

[soft music]

- Let Grandpa play.

[soft music]

- I just bang on-- - And Mr. Piggy's

going to watch you.

[keys clinking]

Okay, now play with your fingers.

That's your palms, now these.

There you go.

- [Jason] Yeah, that's how, Jase.

- That wasn't it, I was just pressing the same ones.

[keys clinking]

[soft music]

- [Ed] You've got it.

[soft music]

- I know what I'm gonna do next time.

- This is the first time

that I'm gonna be spending the night with you

in three years.

It's gonna be really exciting

and we're gonna spend a whole weekend together.

- If you need me, you just tap me on the shoulder, okay?

- [Jason] My brother Daniel helps me take care of you.

- There's a distress call to PURST,

P-U-R-S-T, Pets of the Universe

Ready for Space Travel Command Center.

Ruff, woof.

Look at all the animals here.

- [Jason] Jase, what animals are there?

- Cats.

- And, yeah just cats, you're right.

- It's all cats? - That's a dog though.

- [Jason] It's the best night I've had

in a long, long time.

On our next court date,

the judge proposes we settle up the case.

Three hours later, it was all over.

You will live in Texas,

but will come to see me more than twice as much.

I'm sad that you won't be moving back,

but of course, I'm glad that I'll be able

to see more of you.

[soft music]

I decide to risk traveling

because I can't miss your fifth birthday.

[blowing]

[cheering and clapping]

- Good job, little buddy. - That's a great job.

Jase is so big. - Look at this big cake.

- Five years old. - Wait, what is all that?

What is all that? - That's your candy too.

Here you go, buddy.

- Yay. - Wow.

- Is it good? - Yes.

- Yeah!

Your grandfather comes to Austin to visit

and we talk more about our marriages.

Maybe it's me.

- Looking back, how could you have made things

different in trying to save your marriage with Alice?

And hopefully making it better for Jase.

- I've thought about that.

Many times.

So I think just being a better,

more supportive person with Alice,

and then also being more open.

It's tough to go backwards and think about it.

Do you ever do that?

Do you ever think backwards?

- Of course, I think I've done no wrong.

[laughs]

- Do you wish that you did anything different?

Like how it affected us?

Would you have done anything differently?

- Yes and no.

We've been through some kind of counseling.

Didn't work.

But I think Mom had made up her mind.

She's had enough and

took it one step further and just walked away.

- Through this film I worked on,

at least pass on to Jase to show that

cycles don't need to be passed on.

And maybe he can break the cycle.

I know my dad's comment that my mom just left

is at best an oversimplification.

Maybe I'll never know what happened

with my parents' marriage.

[soft music]

Every day, I think back to when

we were all together.

I have to make peace with things falling apart

and with my own responsibility for letting it happen.

I do hope you break the cycle of separation,

but even if you can't, don't worry.

We make mistakes.

We're imperfect.

But we do the best we can.

I think about you.

I think about me.

I think about our family.

[soft music]

As you grow up, at some point,

I may not be able to see you or talk to you.

I may not live to see you as an adult.

I wonder what you will become.

[soft music]

When I was a little boy,

I was a really fast runner. - I'm the fast one.

- So you are five years old now

and I want you to know that

I am still gonna be there all the time.

So I'll be there whenever you need me,

even if I'm in New York

or in Texas.

'Cause all I do is think about

how much I love you.

I'll always be there, no matter what.

'Cause I'm your dad.

And you're my boy.

And that's what I wanted to say to you.

Okay, let's go. - Get the camera closer.

- So, Jase is gonna be the director.

He said, what do you want him to do, Jase?

- Get closer, get closer.

Closer, closer, even closer.

There you go.

- So on the count of three.

One, two, three.

We're done and cut. - We're done and cut.

[mellow rock music]

♪ This strange ♪

♪ Plan is random at best ♪

♪ This strange ♪

♪ How much more can I take ♪

♪ This strange ♪

♪ Change in atmosphere ♪

♪ And in gravity too ♪

♪ And it's severity ♪

♪ This strange ♪

♪ Day is almost over ♪

♪ Just started to ♪

♪ Get sick of it ♪

♪ And it's strange ♪

♪ But oh well ♪

[mellow rock music]