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[music playing]

NARRATOR: What is man?

I had a different life before this one,

before death stood beside me--

my death.

There is nothing romantic about death.

It is terror.

A life now glimpsed in photographs and a memory

of Simon as he was--

walking, talking, eating,drinking, breathing.

Simon.

How much is left of him?

How much spans the dividebetween before and after?

What is man?

How much can be taken away and what is left?

I had a different life.

[applause]

[music playing]

I have MND, motor neuron disease.

It's a neurological disorder that

causes increasing muscle weakness

and eventually paralysis.

In most cases it is fatal.

I have lost mobility in my limbs--

I can no longer speak, swallow, or even

breathe without artificial help, but I

can still feel everything.

The hardest thing about living with MND

is the distance it putsbetween me and those I love.

The best thing about livingwith MND is the living part.

I love being alive.

[music playing]

He was a little shy, yes.

But no, no, no, no--

Simon was a normal littleboy, but full of life and pep.

Always was and always was the devil.

He was creative in his own way.

He was lazy in school--

didn't bother [inaudible].

But generally he was a fellow full of life.

FLORENCE FITZMAURICE: He was brilliant.

He was like any young child--

he was boisterous and he was happy.

He was a great child really in that respect

and he gave no trouble or anything.

Well being his mother, I suppose I'm a bit--

[laughs]

KATE FITZMAURICE: We've always been very close

actually, myself and Simon.

There's three years betweenhimself and Ruth and then

there's about four--

four years, 4 and 1/2years to myself and Simon.

Yeah, I just really looked up to Simon, you know,

so he was just like the big brother

and he had all the jokesand all the cool one-liners.

And Simon's all abouthumor, so like everything,

even from an early age that I remember,

was him like playing tricksand things like that.

And like obviously we, youknow, we had loads of fights

and all that sort of stuff.

Simon went to prayers in Bray.

I think Simon enjoyed prayers a lot

and he loved his English teacher.

PHIL MCDARBY: We were bothreally into creative writing

and all the rest and we kindof connected on that level

as well.

We had a fantastic teacherin fifth and sixth year.

He was just a reallysort of inspirational guy

and he loved creative writingand he really encouraged us.

Si was phenomenal at that stage even--

he was showing so much promiseas a writer and his poetry

was beautiful and spare and, you know,

a real sort of expression for him

getting through those difficultearly teenage years, you know?

Simon, tell us how you got started.

I've always written.

As a teenager, I wrote out of a--

a kind of a need to writejust as an expression.

MALE HOST: So you likeddoing essays, for example,

at school, that kind of stuff?

Well no, not so much.

I was more into poetry in--

in my teenage years.

I got into short fiction then,just as a further expression.

KATE FITZMAURICE: Humor andsensitivity are two things

that he has in abundance.

Certainly as we gotolder, he was the charmer.

If we were in any social situations,

Simon was in the middle ofthe room telling the story

and making everybody laugh like.

So, yeah, and-- and obviouslythat charmed all the ladies.

[music - the pale, "butterfly"]

I am the butterfly, I'veshed my father's clothes.

I am the butterfly, I'veshed my father's clothes.

I am the butterfly, I'veshed my father's clothes.

NARRATOR: I'm sitting on an uncomfortable stool

in the dingy basement apartmentof a friend from college

when a girl walks in the room, right?

She is tall, slender--

quite easily the mostbeautiful girl I've ever seen.

She's crossing the back of theroom with a friend of mine.

My first thought is simply,how the hell did he get her?

She is a girl from Ardee County Louth.

She is way out of my league.

Her name is Ruth.

I spent my whole life looking for Ruth.

Look, I'll be honest about it.

The first time I met Simon, I thought he--

collectively himself and his friends

were completely obnoxious.

[laughs] I was living in an apartment in Dublin

as a student and this group of loud,

boisterous guys from Greystonescame in and took over our party

and we thought they were idiots really.

And so that was my first experience of him

and then after that it got better.

Simon would come into a room, you know,

and he was, as they say, hold court telling

jokes, telling stories--

loud, but in a very lovable way.

He just had this energy about him, you know?

He was just a reallypassionate, energetic person--

just great fun.

NARRATOR: Years after first seeing her,

I'm walking down O'ConnellStreet with my parents

after coming out of the Savoy Cinema

and I passed Ruth at a bus stop outside Clerys

Department Store.

I stopped my parents and I run back to her.

Out of nowhere, thisface is up in front of me

and it's Simon, you know, andI hadn't seen him in years

and I was completely taken aback.

NARRATOR: We talk but behindour words, in our eyes meeting,

something is there.

I ask for her number and she opens her bag.

He took my phone number.

He suddenly disappeared again and I--

I was left with this kindof glow at the bus stop.

NARRATOR: Ruth gives meher number, we say goodbye,

and I catch up with my parents.

It's Thursday.

I don't call-- it's too important.

He claims afterwards that he really liked me,

so he didn't want to mess it up and he didn't

want to seem too keen too soon.

So it worked anyway.

NARRATOR: This is it--

my life is changed forever.

My family is used to me talkingabout love and the new person

in my life.

This time, I tell them nothing.

I let them meet Ruth for themselves.

They are all nervous because of it.

Ruth arrives and I watch her talk, move,

blush, and sit among them.

I have never felt prouder in my life.

Ruth, my whole body is on fire.

I've been in love before,but never like this.

It's not one thing or a listof things, it's everything.

This is beyond any happiness I felt.

We are creating a bond for life.

It's obvious.

I've never felt more alive with anyone

or been with anyone more alive.

This is it.

RUTH O'NEILL FITZMAURICE: Itis hard in a way to look--

to look back on that time, but when

I think of Simon back then--

the sense of him, you know,it's hard in a way, you know,

because just that time was,you know, it was really--

it was a good time.

Creatively we were on fire as well.

He was really into the idea of making films

and I was working in radio.

We just used to get all fired up about projects

and things like that as well.

NARRATOR: Film is a religion in our house.

You don't speak during a film--

you watch a movie from beginning to end.

My father taught me to love film.

Dad grew up in the golden ageof cinema before television.

When I was six, I watched"The Godfather" with dad.

He talked me through all of the relationships--

how Sonny shouldn't havespoken outside the family.

He cried when Marlon Brando says, "Look

how they massacred my boy."

My love of cinema began.

I start a Master's Degree inFilm Theory and Production

at the Dublin Institute of Technology.

The film school has ateaching staff committed to

and passionate about film.

I'm in heaven.

This is what I want to do with my working life.

I'm hooked.

PHILLIPPA [VOICEOVER]: Hisjob is to stand all day

at the door of the bank.

NARRATOR: I write a simple love story

about a girl who works in a chip shop

and a guy who is a security guard

at a bank across the road.

It's my graduation film--

15 minutes long and I work onit night and day for a year.

I graduate with FirstClass Honors and a finished

film in my pocket.

PHILLIPPA [VOICEOVER]: I don't have a name tag.

KATE FITZMAURICE: He just was so, so happy

that year that he was makingthe short, "Full Circle."

When he did that it just took off and he sent--

I remember him sending them all off, but he--

to all the different festivals.

And then it was just coming in kind

of daily, that kind of,oh, yeah, it's got in here,

it's got in there.

PRESENTER: Now toreceive the Jimmy Stewart

Memorial Crystal Heart Award is director/writer

Simon Fitzmaurice.

The idea behind this film was to tell

a love story withoutsentimentality, but with heart.

And they are the films that affect me

and everyone else who worked on the film--

we tried to do that.

And so simply to be-- tobe recognized and awarded

at a festival that--

whose entire philosophy isto celebrate heart in films

is the-- is the ultimate compliment so

thank you very much.

NARRATOR: "Full Circle" is invited

to screen at thelegendary NYU Film School,

so Ruth and I go to New York.

The city steals our hearts--

it's everything.

We're doing all this film stuff, meet

and greets, and screenings--

we're visiting the Statue of Liberty

and all the time I'mthinking, how will I do this?

When?

I decide.

The next day we visit theEmpire State Building--

it's hot, really hot.

I smile at Ruth, sweatdown the back of my neck.

She must think I'm crazy.

At the top of the Empire State Building--

as green as Kermit the frogand with a similar voice--

I get down on one knee and ask Ruth to marry me

and she says yes.

[inaudible]

[laughter]

[applause]

Ruth is the--

the first girl I could never describe

and the first girl that shutme on and made me speechless.

And today I'm-- flabbergastedis the only word--

and I still can't describeRuth, someone, who I just--

when I look in Ruth's eyes, I--

I mean, this whole ceremony is about love,

but I know what it is now.

I feel like the luckiest man on Earth.

[applause]

[music playing]

NARRATOR: The next year I wenton a climbing expedition--

the Himalayas.

We crossed the glacier at midnight--

a row of bobbing head torchesand a sea of darkness.

We climbed through the night.

The sun is up and I see where I am.

I'm 20,000 feet above a Himalayan mountain,

lying on a 4-foot wide bridge of snow and ice

that leads to the summit.

I try to move.

There's a sheer drop on both sides.

I freeze-- what am I doing here?

And then I feel it--

immediate and sickening in my stomach--

the shocking starkness of it inside me.

If I fall here, I fall to my death.

There is no one here to help me--

I am alone.

With it comes a feelingI have never felt before.

I thought about it manytimes, but I never felt it.

Death-- my death--

it is as close to me as the drop on either side.

It's all around my ears.

I have to move-- I start to climb.

[cheering]

That was the greatest thing I've ever

done my entire life bar none.

I've never done anything like that ever.

Of course I am.

It was absolutely-- I couldn't believe

it when I reached the summit.

I didn't think I was going to make it.

That's it.

No, [laughs] no way.

NARRATOR: I'm full-timein an advertising position

while I'm working on myfilms every spare minute.

I'm traveling to filmfestivals with "Full Circle"

and I'm working on my newfilm, "The Sound of People."

It's a film about a moment inthe life of an 18-year-old boy

when he confronts his mortalityand the mental and emotional

journey takes him on in a matter of seconds.

It's intense and it started when I

wrote a piece of paper, "The day after I

die there will be internet."

BOY [VOICEOVER]: The day afterI die there will be internet.

Good morning coffee with cartoon sun.

NARRATOR: The story grew out of that line.

BOY [VOICEOVER]: -- rows of faces, rows of--

NARRATOR: I wanted to make something

different from the standardnarrative structure.

BOY [VOICEOVER]: There'llbe fingers and hands

making sex-- quick and hurried.

NARRATOR: I wanted a streamof consciousness on film.

BOY [VOICEOVER]: There will be memories of me

in the minds of others, but not in mine.

NARRATOR: A call comes--

it's my producer and she's excited.

She's just received a callfrom the Sundance Film Festival

saying they would like to screen our film--

I feel something shift inside me.

We exchange words of jubilation I

can't remember and say goodbye.

I'm driving down the countryroad and I'm changed.

But I've often wondered ifthat was the moment motor

neuron disease began in me--

that I'd been holding my breathfor years and suddenly let go

and that something gave in that moment--

something gave.

His career seemed tobe really going somewhere

and ironically, that was around the same time

that he began to feel there wassomething wrong with his foot.

Then his foot went a bit floppy and it all

happened at the same time--

literally on the cusp of when he-- he was

beginning to do well with film.

MND came along at the same time.

NARRATOR: Main Street, Park City, Utah--

night in Sundance.

The crowd is heaving, it's snowing--

fluffy stuff and the altitudeshortens your frosty breath.

The streets are humpbacked withsnow and between the buildings

in the darkness beyond Main Street are

mountains of impossible beauty.

I've been to many other festivals

and I don't know why thisone means so much to me.

Maybe it's because I grewup within my father's

world of cinema whereRobert Redford was a legend.

I had no expectations coming over here--

all I knew was an idea ofSundance like everybody else.

I've seen dramas and documentaries here

that have moved and pushed me.

And because I'm here with a film,

I'm forced to question whether my short film

would move anyone that way.

Scary.

BOY [VOICEOVER]: The day after I die

there will be the sound of people thinking

thoughts at the speed of light.

There will be headaches and armchairs

and sex in the darkness.

There will be roaring andraging and sun behind clouds.

There'll be people in loveand wards with babies.

There will be everyoneand everything except me.

There are moments in your lifethat stay with you forever--

times you return to again and again.

The day that I die willbe the end of all moments.

Today is not that day.

[applause]

NARRATOR: I've just comefrom a screening of my film

at the Egyptian Theater on MainStreet and I'm electrified.

I decide to walk out of the town into the snow.

There are other shops out there and I want

to buy some presents for home.

I walk along the edge of alarger road, the blizzard

really picking up now.

I love it here.

I reach the shops at the edgeof town, I step under a walkway,

and call my parents' house.

My mother answers and I listen to her voice

as I watch the cars pass slowly on the road

through the blizzard.

I tell her my foot is hurt--

that there is something wrong with my foot,

but we talk about it normally--

neither of us is worried.

Afterwards I head back towards town.

RUTH O'NEILL FITZMAURICE:He had a bit of a limp

and his foot was--

he described it as floppy.

And at the very startwhen he complained of it,

I thought this--

I did the very dismissivewife thing of saying, yeah,

it's just the clutch on your car--

your grand.

And then he had to go in for lots

of horrible tests and things and no,

we didn't really talk about it.

It was-- I knew there wassomething wrong with his leg,

but I--

you would never imagine that it was, you know,

a little limp would be somethingas catastrophic as MND,

so we just went about ourlives and we were really busy.

We had-- we had two little boys very young

and Simon was working really hard

and it was just sort of like this little specter

in the distance hanging over us, but we didn't

really talk about it anddidn't know what to expect

or what it was.

NARRATOR: I'm in his office and he tells me.

Light leaves the room andair and sound and time.

Looking up through a tunnel of myself

as he speaks on past those words--

three to four years to live.

I don't hear him--

is this my life?

Is he talking about me?

RUTH O'NEILL FITZMAURICE:I was in the waiting area

of the surgery, giggling about my dad who'd

come in with loads of mud on his shoes

and made a big mess on the carpet.

And we were having a bit ofa giggle and suddenly we--

Simon came out of the--

the office and his face wasjust like a ghost and he said,

you need to come in here.

NARRATOR: They come into the room

and he tells them the same thing.

I don't hear him.

Ruth starts to cry.

Within 10 minutes we're out on the street.

Not knowing what to do, wedo what we planned before.

We go to lunch, we walk throughthe streets like the survivors

of some vast impact--

pale, powdered ghosts.

We reached the restaurant.

Dunneand Crescenzi on South Frederick Street--

our favorite.

We just did what we had planned to do--

we went to lunch and--

to our favorite restaurant,which is a really bad idea.

Never go to your favoriterestaurant after bad news

because I can't go back there now.

[laughs]

NARRATOR: We enter the restaurant,

sit down like everyone else--

we sit there not knowing what to do, what to say.

The waiter comes over andstarts to speak to me.

Ruth starts to cry.

The place is under water and Ican't hear what he is saying.

Ruth is pregnant with our third child.

I stand into a doorwayoutside and call my parents.

It is the worst phone call of my life.

I tell them everything fast.

Hearing the panic in my voice, Ibecome aware for the first time

that nothing is the same.

FLORENCE FITZMAURICE: You get such a shock.

You don't believe it, you know?

You don't believe this is going to actually--

they've made a mistake.

That's, I suppose, my thing--

they've made a mistake.

Simon's perfect, look at him.

There's nothing wrong with him.

JACK: Say da-da.

Do a dance.

Come on-- come on, Jack, keep going this way.

Well, the thing is you-- you get news like that

and then you have young children.

And they're at home withbig smiles on their face.

And children are just all about the moments

and they're in the day-to-day.

And no matter what you're feeling,

you have to put that on holdto look after them for the day.

[laughs]

So in a way, that probablysaved us at the start.

We used to just get through the day

and then at night, we would justlie in bed and cry, you know?

And hold on to each other and cry

and then get up the next dayand live our life with the kids.

Whoo!

RUTH O'NEILL FITZMAURICE: Whoo!

[laughter] JACK: [inaudible].

FLORENCE FITZMAURICE: Up and down.

RUTH O'NEILL FITZMAURICE: Whoo!

You're still in the day-to-dayand you don't quite believe it.

You put it on hold a little bit.

You say, at to three to four,how could you take that in?

Nobody can take that in.

And, I think, because we'renot very practical people,

we decided, no, we'll just stay in the moment

and we'll take it a day at a time.

It's survival-- you go into survival mode.

There is no other way to cope.

But mostly he would just get on with, well,

I've got this script to write--

I have to work.

I think he was lucky in that way.

He had all those creative aspirations

and he didn't give up on any of those dreams.

He just kept working at themand that's how he coped.

CHILD: Look, Kate, look at my at my toe.

RUTH O'NEILL FITZMAURICE: To bethat creative kept him going.

His boys kept him going--

just being with them,just having fun with them,

and just soaking them up for as long as he could.

NARRATOR: When you're told you will

die within a certain period, time slows down.

Life becomes dominated by the last time.

Is this the last time I willread a book to one of my boys?

If not the last, how many more?

Everything is heightened.

I'm in my life and outside it.

In the moment, I'm consciousof the significance

of every moment.

It's lucky-- in thisheightened state, experiences

burned into my memory.

I'm running after Jack and I'm thinking,

is this the last time I'll be running?

So I speed up.

JACK: Da-da.

NARRATOR: I'm running with a limp

and so running full tiltbecomes a series of long hops

and strides, but I'm running after my son who

is laughing uncontrollablyin the half-right ecstasy

of pursuit.

And I'm remembering it--

fear of the last time it's recording

every second, which is luckybecause it is the last time.

When you lose something central in your life,

it's important to have a memory of it

so you don't feel insane--

so the pain you feel has a corresponding shape.

Something that says, definitely--

that was real.

Then happy or sad about it, I have that forever.

RUTH O'NEILL FITZMAURICE: Therewas also a sense of disbelief.

We're not going to take that news lying down.

We're-- we're going to doeverything we can, you know,

a fighting spirit as well.

Simon's two sisters got on the case-- they're

much more practically minded.

They are a family of doers.

KATE FITZMAURICE: We're very much like, right,

how do we fix this, you know?

And have the meltdown by ourselves later,

you know, in bed or something.

But in the moment of the day, we weren't

all kind of sit-- standingaround, hugging each other,

crying.

It was kind of like, right,how are we going to do this?

Ruth, my sister, she had like already, you know,

googled and had a print of, youknow, OK, this, this, and this.

And, you know, look, there'sthis and ALS and MND.

It-- it can actually mimicthis, that, and the other.

And there's lots of otherdiseases that can mimic it,

you know?

We just-- I think as afamily we are so, you know,

we're-- we've very much,OK, let's find the solution.

NARRATOR: I and my family are determined

to prove the diagnosiswrong or find a treatment,

so we pursue every thread--

every possible mimicking illness,

every alternative blood test,every experimental trial.

I pursue treatments with everything I have.

I'm not going to die like this.

I visit healers up and down the country--

down bumpy side roads tomobile homes on raised blocks

where the hopeful and the desperate

sit outside in their cars, waiting

for their turn to step into the musty blend

of Catholicism and mysticism--

and the exchange of cash for hands that heal

and a strange typed bit ofpaper with further instructions

involving home remedies and--

and prayer.

[music playing]

My younger sister Kate gets married in March.

It's the most beautifulwedding I've ever attended.

I wear a brace under my sock to keep my foot upright.

I dance for the last time.

[music playing]

PHIL MCDARBY: It's so gradual that you-- you--

you sort of get used to each stage

slowly as you go along, you know?

His limp got worse, he needed acrutch, he needed two crutches,

and then it takes a turn, you know?

Then-- then it takes a major turn.

NARRATOR: Ruth and I growmore haunted by the day.

I've been making myself walk up and down

the hall with a walker twice a day,

fighting to stay on my feet.

One day, I fall badly.

My body folds beneath me, myback bending to meet my legs.

Our hall is tiled and Imust have made quite a noise

because Ruth comes running.

When I see her face, I know it is bad.

I never walk after that.

CHILD: I'm going to [inaudible].

RUTH O'NEILL FITZMAURICE:The thing about MND

is that-- that you can still feel everything,

so it's just like your legsget really, really weak.

They don't move, but it's not like paralysis.

You can still feel everything,so Simon hasn't lost

any feeling in his body at all.

So he was in a wheelchair--his-- his upper body

was still exactly the same.

So he was, you know, talking,moving from the bottom half up.

Jack.

JACK: Yes?

I love you.

JACK: I love you too, da-da ba-da.

RUTH O'NEILL FITZMAURICE: For me,

when I think of Simon as the man that he

was and the man he is now--

well, there's parts of him--

things about him that I lovenow that I didn't know back

then like how he's copedwith losing all those things,

you know?

He never lashed out at me when he was in pain.

He used to just say to me, Ruth, I'm so sorry.

I'm just so so--

so sorry.

Sorry, I'm trying to speak from the heart.

It's actually really-- much harder.

See, I could just give you the stock answers,

but if you really want tohear the truth, it's harder,

you know?

When he was-- the journeyfrom when he was diagnosed--

initially when you're diagnosedit-- it's like a nuclear blast,

you know?

But then the process from the initial shock--

that's the real journey,that's the real painful journey

that you make with MND.

And to see how he has coped with that--

obviously we've coped togetherand I think the reason

that we have coped isbecause it's lucky that we do

love each other so much, but--

JACK: Hi, da-da.

[inaudible]

JACK: Da-da.

RUTH O'NEILL FITZMAURICE:With each stage,

you mourn the loss of it.

But then you-- you have a cry.

We cried a lot.

You have a cry and then you pickyourself up and you move on.

And that's the surprising thing--

to realize that you can suffer that much

and mourn the loss of somethingand yet wake up the next day

and still have the strength to keep going.

And that's-- that's a reallypowerful thing because you

begin to really believe in yourself and you

begin to believe in each other.

And things might be OK because you just--

you've survived.

You're still here and ithasn't broken you, I think,

is the thing, you know?

You're unbroken-- you'rebattered, but you're unbroken.

[laughs]

NARRATOR: Ruth, the boys,and I are trapped in this fog

that seems to permeate everything--

to confound every effort.

In the end, it is Ruth who save us.

She tells me we are going orwe will go mad in this house.

I believe her, I trust her.

We go-- Ruth takes us off to Australia.

[MUSIC - CATHY DAVEY, "UNIVERSE TIPPING"]

You never linger long around it.

RUTH O'NEILL FITZMAURICE: Simonwas really anxious about going,

didn't want to go, and I made him go.

But it was you who found it, so--

RUTH O'NEILL FITZMAURICE: Our friends

had emigrated to Australiaand I just said, let's go--

let's just go.

-- shoe, and do your very worst.

RUTH O'NEILL FITZMAURICE:Our youngest,

Arden, was a baby at the time.

And it was just that sense of adventure--

let's have anotheradventure, let's just go.

And I-- I knew at the other end that we would have

people who would go out oftheir way to look after us,

which they did.

NARRATOR: Sunshine in our lives.

We go for six weeks and stay for six months.

It is one of the best times of our lives

and it changes everything.

CHILD: Ooh!

JACK: Da-da!

NARRATOR: We rent a housewith a swimming pool

and start writing full time again--

me for the Irish FilmBoard, Ruth on her novel.

And we go to the cinema and eat a lot of good food--

we are happy.

CHILD: Plus one is--

Dad [inaudible]

SIMON FITZMAURICE: Ruth, give us a twirl.

Fabulous.

He swam in the pool every day.

We had a hoist and wehoisted him into the water.

And he was able to move hisupper body and at that stage

he could still--

he says the weightlessnessof the water--

he could actually move more thanhe obviously could normally.

We just lived and enjoyedourselves and it was great.

[laughs]

[rooster crows]

SIMON FITZMAURICE: Go on, Raife.

Look, it's OK.

How you doing there, Jack?

You're doing super.

Bleary, haven't shaved yet,will shave for Christmas.

Happy Christmas, I love you.

RUTH O'NEILL FITZMAURICE:Who are you talking to?

SIMON FITZMAURICE: Myself.

NARRATOR: I realize that I have a simple choice.

I can accept that I have MND or I can give up.

I realized that I have been carrying

around the burden ofresponsibility for having MND--

that I was the cause, butthrough some failing of my own

I was not the cure.

SIMON FITZMAURICE: Hi, hi.

NARRATOR: We go back home.

At Dublin Airport, both our families are there.

Everyone is jubilant-- happy that our trip

was a success, happy to see us.

Our parents' faces are worn with worry.

I lift my arm to shake handswith Ruth's dad and everyone

notices the strain, the weakness.

Everyone notices, but no one sees.

I get pneumonia in September.

It's the first sign that MNDis affecting my breathing.

Most people with MND die of respiratory failure.

I spend a week in a hospital.

RUTH O'NEILL FITZMAURICE:Respiratory failure

happened way sooner than I would have thought.

It was just reallydramatic and quite sudden,

which is why he ended up ona ventilator by accident.

NARRATOR: You are in a room in Dublin.

A man walks in whom you've never.

He starts to talk to you.

He asks you if you have any children.

You say you do.

He tells you not to go home tonight--

that when you leave the building you

must turn right instead of left,head north instead of south--

that you must keep going in an unknown direction,

knowing only that you willnever see anyone from your life

again.

The journey he is asking you to take is death.

RUTH O'NEILL FITZMAURICE: Hewent into respiratory failure

and he was whisked off to ICUand, in an emergency situation,

he was intubated.

And that basically is atube down your mouth so you

can't talk when that happens.

So he woke up and hecouldn't-- couldn't speak.

It was never a question of him deciding, OK,

this is the end of the road.

It's ludicrous at that point.

He still had movement in hisarms, he could still speak.

I don't know of anyperson who would lie there

and say, OK, go on theredoctor, turn the machine off.

I mean, it's just ludicrous.

NARRATOR: My mother starts crying

in the corner of the room.

I look at him, but I can't reply.

He looks at me.

Ruth and my mom are nowholding each other, sobbing.

While he is looking at me, my life force,

my soul, the part of methat feels like every part

is unequivocal--

I want to live.

It infuses my whole body to such an extent

that I feel no fear in the face of this man.

RUTH O'NEILL FITZMAURICE:You kind of think,

this isn't really happening.

Is this real?

But it was and we just grabbed onto each other

and started crying.

Luckily Simon's family are a family of--

how would you describe them--

Simon's family?

They-- they make their own decisions.

They-- they question things and, you know,

they don't accept other people'sopinions unless, you know,

they've talked them through.

That's one way of putting it.

You don't want to know thecost of keeping Simon alive.

And I said yeah, you got that right.

I don't want to know the cost--

I'm not interested.

I'm just interested in keeping him alive.

And Simon has the same inner strength

and fight in him as the rest of us.

I looked into his eyes andat that stage he couldn't talk

or anything--

but I knew he didn't want to die and this

was not his time to die.

And so we fought with everything.

RUTH O'NEILL FITZMAURICE:So what followed

were days of sitting in aroom with kind of a hospital

negotiator and exhaustingmeetings of talking

about what might happen.

And it was very simplefor us-- we just said, no,

you're not taking the tube out.

This isn't what Simon wants.

I-- I would have doneanything that Simon wanted.

It was his choice, it's his life.

He is the one who has to live with it.

If Simon made the decision that he

wanted to finish himself or whatever,

then it's Simon's decision.

But Simon said he wanted to liveand we were there to help him.

NARRATOR: Why would you want to ventilate?

Why would you want to live with this disease?

I have many reasons.

For me it's not about how long you live,

but about how you live.

They ask me why I want to live and the answer

is the same as that givenby mostly dead Westley

in the "Princess Bride" whenreplying to the question

posed by Miracle Max.

What's so important?

What you got here that's worth living for?

True love is his response.

That's how I feel.

Love for my wife, love for my children,

my friends my family--

love for life in general.

My love is undimmed, unbowed, unbroken.

I want to live.

Is that wrong?

What gives a life meaning?

What constitutes a meaningful life?

What gives one life more value than another?

Surely only the individualcan hope to grasp

the meaning of his or her life.

If not asked if they want the choice to live,

it negates that meaning.

PHIL MCDARBY: Si's will is what defines him.

His stubbornness and the strength

of his character and his will and his desire

to live and to love are what define him.

So he had all the tools youneeded to fight it, you know?

He had them already and he'sshown that from day one.

He ended up-- they took thetube out after about a week

and they put in thistracheostomy and then it was

a process of rehabilitationto teach him how to live with

the tracheostomy And also there was

a huge fight to get him outof hospital and get him home,

you know?

That's what we did next.

[MUSIC - JAMES VINCENT MCMORROW, "WE DON'T EAT"]

We don't eat until your father's at the table,

we don't drink until the devil's turned to dust,

and never once has any manI've met been able to love.

So if I were you, I'd have a little trust.

I love my boys.

Da-da, can you do the dragging thing?

NARRATOR: What have I become?

To my children, I am still their father.

Always their father, but sodifferent from everyone else.

Everyone is different, but someare more different than others.

RUTH O'NEILL FITZMAURICE:Is that baby touch?

NARRATOR: I feel for them being in places

where everybody's body works--

rooms full of people whose bodies work.

Hi, beautiful wife.

RUTH O'NEILL FITZMAURICE:Hi, beautiful husband.

If Simon hadn't got home,he wouldn't still be alive.

I believe that fully.

Simon was always passionateabout being alive.

He has young children-- itwas never a question for him.

He just wants to be aroundfor as long as possible.

People have mixed emotions andopinions about that in general.

I don't think you would knowwhat you would do unless you're

put in that situation.

Hi, ma-ma.

FLORENCE FITZMAURICE: Hiya, Si.

RUTH O'NEILL FITZMAURICE:If someone was to look down

the line of what would happento them after that point,

possibly they might have some opinions about it.

But I don't think in that momentanybody-- anybody would make

a different choice to Simon.

It's-- it's how you--

it's how you cope afterthat, really, that counts.

SIMON FITZMAURICE: Well done.

Well done.

Hooray.

I made the--

[interposing voices]

RUTH O'NEILL FITZMAURICE:When we lived in Louth, we--

I was fully looking afterSimon and the kids by myself.

I had to do everything to help him--

just the everyday humanfunctions we take for granted.

But now we have afull-time nurse every day

and a carer in the house who look after him

and look after all those basic needs

so I can just concentrate onthe kids and I have a husband.

I'm not as much his carer anymore

and it's nice to get back tothat-- to just be his wife

again.

And, you know, because beinga carer to your husband--

it's a different relationship too.

It-- it changes-- it changesthe dynamic between you

or it can do or you just have to adapt to it.

We just have a betterequilibrium now in the house,

you know, because the kids are my job

and the nurses look after Simon's needs.

And we get to have moments--

little moments in the day wherewe're just a family, you know?

[music playing]

NARRATOR: Society is predicated on the idea

that we all have the same wants and needs,

but that's only when you reduce us to the same.

What's different aboutus is just as important--

the mystery of each of us.

I'm in the back of the car.

We are moving fast--

riding bumps like waves--

my chair lifting off the floor.

We're on our way to the hospital.

Ruth's cesarean is taking place at 12:00.

It's 20 to 12:00.

She is pregnant with ourfourth child and our fifth.

Ruth and I treasure the physical connection

we still have and we had decided privately

to try for another child--

the ultimate expression of being alive.

They are waiting for us atthe doors of Holles Street,

whisk us upstairs.

My amazing people dress mein a surgical gown and hat.

Time has stopped.

Ruth is on the table.

The medical team are beyond amazing,

ushering me in, helping me to get into the best

possible position--

right beside Ruth.

Ruth later tells me if I hadmoved back and forth once more,

she was going to kill me.

I was nervous.

They start, Ruth holds myhand, I watch everything.

Sadie comes out feet first--

screaming, blue.

Then Hunter-- bum high in the air, but silent.

Ruth and I look at each other.

They lay Hunter beside Sadieand he lets out a roar.

Ruth and I start to cry.

My babies, Sadie and Hunter,are a light in my life.

Every day they fill me up likelike a battery depleted just

to see their faces.

If I said yes to the doctorstelling me to die three

years ago, they wouldn't exist.

They are my life. They are life.

Some days I wake up blank, empty,

and I wait for the day to fill me--

other days I wake up full from a dream.

And those are the days Idespair because remembering

is not feeling and dreaming is not remembering.

Dreaming is reliving.

And then I wake up and Ifeel like an old man dreaming

of youth and waking up old.

Dreaming of love and waking up alone.

Then one day I decided I had a choice.

I could fill my days with nothing

or I could try and live again.

I start to write full-timeagain with my eyes

using my new computer.

As I start to recover, my body grows stronger

every day out of the hospital.

We are struggling with the new routine--

the constant presence of strangers.

My hands have stopped moving, my voice

has become unintelligible--

a slurring mockery of what it was.

I used my computer voice for the first time--

nervously, self-consciously.

It quickly becomes my voice.

RUTH O'NEILL FITZMAURICE:I don't remember the point

where he didn't speak anymore.

I just remember that thecomputer came into our lives.

A wonderful OT in the Beacon got in contact with him

to the Motor Neuron DiseaseAssociation in Ireland

and they funded thisEyeGaze computer for him.

SIMON [THROUGH EYEGAZE]: I operate my computer

solely with my eyes.

The sensor below the screen picks up

every movement of my eyes.

To select something, I simplydwell on it for a moment.

My computer is my voice inevery sense of the word.

HECTOR MINTO: EyeGaze is pupil tracking, really.

Whatever you are looking at, your pupils

point directly at them.

I mean, essentiallywe're just tracking where

your eyes are pointing and turning

that into a-- a mouse pointer.

-- [inaudible] worryingabout backspacing each time.

Just confidently carry on typing.

But really what Simon has is a computer

that allows him to communicate.

So he has a way of controllingthe computer through his eyes,

but he creates sentences and accesses

phrases to allow him to communicate

his daily communication.

It's a full computer-- hecan type, he can email,

he can access Facebook.

He can also control everything in this house

that is controlledthrough a remote control.

SIMON [THROUGH EYEGAZE]: You expressed

an interest in my storyboards.

While drawing them I stillhad the use of my thumb

and used my touchscreen phone as a mouse

to help me do the storyboards.

Drawing solely with youreyes is almost impossible,

or at least there isn'tsoftware yet to facilitate it.

Have you tried any artsprograms with your eyes before?

SIMON [THROUGH EYEGAZE]: Itried one free software package.

It was crap.

HECTOR MINTO: [laughs] Free normally is.

You know, the-- the ability to communicate

with your family and yourkids and everything--

that's number one.

What is that one called?

But once that's done, where do you go next?

Well you want to go back to work, you know?

You want to carry on doingwhat-- what defines you.

SIMON [THROUGH EYEGAZE]: I'm going to haunt

you, Hector [inaudible].

You're going to be sorry you met me.

You have no choice but to be my friend.

It's no problem.

[laughs] I'm very happy to be.

RUTH O'NEILL FITZMAURICE:Simon had a beautiful voice--

he had a beautiful, beautifulvoice and I miss it.

And I do remember when hestopped speaking first I used

to ring his mobile phone because the message

on his old mobile phone--you know when you ring five

and you can just go straight to the message?

And I used to ring it overand over again just to hear,

Hi, this Simon Fitzmaurice.

Leave a message and I'll get back to you.

And I would just play that overand over because it was only--

the only record of his voice that I had.

But at one point, they didtalk about using old recordings

of Simon's voice combined withhis-- the voice of his dad

Damien to create a databaseand create a new voice for him.

And he-- he had peopleworking on that for a while

and I remember we got a demo of it

into the house and it sounded--

it sounded like Simon, but it was

like this strangeautomated Irish leprechaun

version of Simon.

At that point it was amazing.

I realized that I had gottenso used to the American voice

that that was just his voice now.

So there was no way--

I begged him, I said, no, don'tchange it now because we've got

used to it and that's-- that'sbecome part of your fabric.

So just keep the voice--

don't change it.

So we-- we've-- we've learnedto live with the American.

[laughs]

Because Simon's conservinga lot as he gets weaker,

he will only speak now when he has to.

So there are long gaps of-- of no conversation.

Get-- you get used to that.

You're content with less andless, but we text each other.

That's what we do.

I-- I could be in thekitchen and Simon's in bed

and he's working on his computer and we just try

and keep in contact that way.

We send little emails, littleshort notes to each other

just to check--

check out that we're bothOK and that's enough.

There's no long, profound, you know, love

poems or anything like that.

Just little notes-- it's enough.

NARRATOR: The greatest achievement of my life

is that somehow I managed to be the person

Ruth fell in love with.

That's it.

And our children save our lives every day.

RUTH O'NEILL FITZMAURICE: Well we're

here at Simon's book launch.

And Simon wrote a book, youknow, just in his spare time

because he had nothing better to do.

The book's called "It's Not Yet Dark."

And we're all feeling highly emotional

because some beautiful speecheswere made and tears were shed.

It's great-- I'm just soproud of him and it's lovely.

It's- it's only been out a week and it's already

at number two on the charts.

So, well, it's great.

I'm really humbled.

[applause]

ANNOUNCER: I'd like to welcome back

our next guest, a testamentto love and to life.

A married couple with five young children.

Their world was turnedupside down because he was

diagnosed with Motor Neuron Disease

and given four years to live.

Please welcome Simon and Ruth Fitzmaurice.

[applause]

And Simon, why was the bookso important to you to write?

SIMON [THROUGH EYEGAZE]: Occasionally I

would write about the past andthe present, never the future--

but then Ruth asked me something.

She asked me to write aletter to each of our children

saying how I felt about them,memories of our time together--

something they wouldhave to keep when I died.

It was the most difficult thing anyone

had ever asked me to do--

I tried for years.

But every time I started a letter,

I was immediately overcomeby the act of saying goodbye

for the last time and I wouldget no more than a few lines

before my screen dissolved into tears.

I didn't want to write the letters

and yet felt so guiltyfor failing to write them.

I was afraid of writing a book because I

was scared of touching againthe pain of the last six years.

But nothing frightened memore than those letters,

so I started to write.

The book quickly became a comfort to me.

I went back and it was OK.

It was a journey.

But above all, for me, my book is a letter

to each of my children.

Thank you so much.

Thank you.

[applause]

WOMAN [ON SCREEN]: When you are speaking,

you can hear yourself talking.

RUTH O'NEILL FITZMAURICE: Simon's

been writing his feature length script for years.

He had lots of projects, but his film project

was always the main one.

And so from the moment he was diagnosed,

he was writing that script.

NARRATOR: The film I desireto make is "My Name is Emily."

It's been living inside mefor the past five years.

Emily fascinates me becauseI believe in redemption.

I believe in the power totake what life throws at you

and just slowly come back--

to take all you have and not be crushed

to death by sadness and loss.

This is a story of redemption.

People are crushed every day by sadness and loss.

This is not an attempt to say otherwise.

This is just a storywhere that doesn't happen.

RUTH O'NEILL FITZMAURICE: When he--

when he could write with his hands,

he wrote it that way--he typed on his computer.

And when he couldn't do that anymore,

he typed it with his eyes.

And so it's just been thisongoing thing that eventually

got finished with him using the EyeGaze

computer on a ventilator.

NARRATOR: Making a feature film is

like a writer moving from shortstories to their first novel--

it's inevitable.

And I have been driven towardsthis all my creative life.

To spend this precious time I have

doing something that fulfillsme at the deepest level--

that echoes in my soul.

To manage to do this with MND--

to overcome all that that puts in my way

shows me how much it means to me.

Then I was lucky enough to findtwo producers, Kathryn Kennedy

and Lesley McKimm, who were justas determined as I was and we

prepared an online crowdfundingcampaign to raise funds

to make the film a reality.

KATHRYN KENNEDY: I think we're at something

like 94,000 tonight.

[applause]

[inaudible] It hasn't justbeen about the money actually--

it's just been about the feeling.

And-- and Simon's a very inspiring guy

and that's why we're here.

I mean, his strive to makethe film it's just-- it's just

incredible against such odds.

And it's just--

[inaudible] Simon Fitzmaurice's kids

for the nomination.

We're the "My Name is Emily" crew.

If it wasn't for this screen,we wouldn't have this script.

ALL: One.

[laughter]

NARRATOR: It's not yet dark.

I can see a chink oflight through the curtains

to the gloaming outside.

All my children and Ruth are asleep.

I am holding her hand.

The house is quiet.

Yesterday was my first day casting.

I was in a theaterauditioning actors, directing.

I made it back to work.

In 2008, the diagnosis toldme it would all be taken away

and I made it back to work.

Take that away.

Try.

RUTH O'NEILL FITZMAURICE:At each stage

I think he has to just overcome so many things

and learn a differentway of-- of doing things.

And-- and he's out there doing that.

[music playing]

NARRATOR: From the first day ofshooting, I am utterly elated.

To me, directing on set isjust thrilling because it

requires 100% of your focusand every creative fiber

of your being.

The biggest challenge infilmmaking that comes with MND

is time.

When I'm on set there is a shortdelay while I type up thoughts.

I overcome this by preparingas much as possible

in advance of the shoot.

Storyboarding each shot, for example,

so that everyone involvedknows exactly what we're

doing all the time thus reducingunnecessary discussions on set.

SIMON [THROUGH EYEGAZE]: There was

a lovely moment just afterthe line stopped altogether.

When they stopped altogether.

Yeah, after the letters, yeah.

SIMON [THROUGH EYEGAZE]: We'll talk to actors.

Guys, it was really lovely.

Ah, good.

NARRATOR: Meeting the actors, I am seriously

nervous because I'm suddenly realizing

I don't have any of my oldcharm to put them at ease.

It was very real.

In your close up, you canlook at the road more George.

Yeah.

Yeah, cool.

RUTH O'NEILL FITZMAURICE: Sohe started the first week.

I think he did one day and then two days

and then it was three days and he

just did a full five-day week.

I was celebrating, I mean, I was think--

I was just blown away that he could do that.

To me, that is a massive achievement.

And you can see it in him-- he's just got

this light back in his face.

He's-- he's loving every minute of it.

It's scary, it's new--

but at the end of the day, it's-- it's just

really fulfilling for him.

And-- and to get to that point after everything

he's been through, to be back directing his movie

is a dream come true.

NARRATOR: Because of theincredible team around me,

my directing is made so easy.

The actors would come tome and my support director

Liz before the shot and she would

devote every bit of energy toensuring my voice is heard.

She is one of the most selflesspeople I have ever met.

I simply love Liz.

Moving on.

Close up on Stella, please.

I think everyone involved in this project

feels like it's a reallyspecial opportunity and really

a privilege to be here.

And from my own personal sense,to be able to work beside Simon

and to have every moment thatexample is profound on so many

levels beyond just filmmaking.

But in terms of theactual filmmaking process,

everyone who's involved is involved,

obviously, you know, it's the work they do.

But everyone, I think,recognizes this is particularly

unique and special and--

and kind of once in a lifetime experience.

PAULA COUSINS: Simon's loving it.

I couldn't believe it whenI first heard-- overheard

on the monitor Simon andKatherine talking and Simon

saying he was hoping to be on set for 10

o'clock every morning.

And I remember saying to thecare assistant, not a chance.

And here we are on set at8 o'clock in the morning

and he's here til 8 o'clock at night.

You know, any-- if yousay he can't do something,

he'll do it 10 times over.

NARRATOR: But-- but I thinkit's a bit like living with MND.

If you were to look at the whole picture and think,

how are we going to do this?

You wouldn't do it becauseyou'd be overwhelmed.

But if you just take it day-by-day

and celebrate the little achievements

and take it a day at a time,you know, anything is possible.

And that's-- that's wherethey're at now I think.

This is who we are!

Come on!

[cheering]

[applause]

RUTH O'NEILL FITZMAURICE: Whenyou're stuck in the day-to-day

with the kids, I would never have

been able to predict that Simonwould be back at this point.

Out there, going to the office every day--

the kids kind of saying,oh, where's-- where's dad?

He's never around anymore.

And I'm thinking, what--

what a brilliant complaint to have.

Because I didn't think they could

ever have that complaint again.

But he's doing it, you know?

God, he's doing it-- he's brilliant.

You know, I just think if wecan just get him there on a wave

of love, [laughs] he can do it.

NARRATOR: It's been life changing.

There's no other way to describe it.

MND is defined by loss, by what it takes away--

but this was me taking something back.

I returned to work and it was a great feeling

to be back on set becauseit's the work that I love.

Unlike other filmmakers, I amunencumbered by the worries

and stresses of building acareer out of the work I love.

MND aptly strips you of such worries.

What remains is desire.

The simple, raw, unendingdesire to make a film.

Not to prove I can, not out of ego,

and not out of sheer bullheadedness.

No, out of love.

Love for film, for the process, for the work,

for the why we do thethings we are driven to do--

driven to exhaustionbecause just at that point

is the perfection that we seek.

The all we have to give given to an art.

EMILY [VOICEOVER]: Swim down into the deep.

Down, down down into the deep.

RUTH O'NEILL FITZMAURICE:There are so many parts

to the story, but I--

I find when I read it, a lot of his feelings

and a lot of his angst and a lot of--

so much of him in a lot of the thought

processes in the script.

Because it was just his therapy--

that's what he did.

That's-- that's how he got through it.

EMILY [VOICEOVER]: There wasa sadness in this country,

in the cities, in the streets,in the fields, and the trees--

a sadness we cannot hide.

NARRATOR: There is a certainsickness to always wanting

a happy ending if the desire for it

is driven by a fear ofseeing things as they are.

EMILY [VOICEOVER]: It's thefact of losing the ones we

love, the fact of being alone.

NARRATOR: But there is anotherimpulse much deeper than fear--

the will to live.

To live with the sadness--

live with the loss and love that is this life.

To navigate it, to not give up.

That is Emily's story.

MAN: And action.

EMILY: [inaudible]

Shh.

We'll cut there.

And just let me come through, OK?

WOMAN [ON SCREEN]: Hang on, guys.

Hang on, guys.

We're just getting some feedback.

So [inaudible] open walking [inaudible].

WOMAN: We're all listening,we're all listening.

Shush.

MAN: OK, so everyone is listening.

The microphone is yours.

So, Simon, go ahead.

SIMON [THROUGH EYEGAZE]: That's a wrap.

SIMON FITZMAURICE [OVER RADIO]: That's a wrap.

[cheering and applause]

WOMAN: [inaudible]

SIMON FITZMAURICE: Thanks, thanks.

[music playing]

MAN: It's with great pleasurethat I get to welcome you

all to this, the opening film ofthe 27th Galloway Film Fleadh--

the world premiere of "My Name is Emily."

[applause]

Simon, were you always determined

to direct the film yourself?

SIMON [THROUGH EYEGAZE]: Yes, Iwrote the script to direct it.

MND had nothing to do with it.

I was not trying to prove anything.

I just kept on going, working any way I could.

After MND, I'm very determined.

It's just the way I am.

Actually, I was trying to prove something.

I remember thinking, I must do this to show

my children to never give up--

a cliche, but true.

So MND made me even moredetermined to direct this film.

Perfect and it shows on the screen,

so I'm going to have say well done.

[applause]

SIMON [THROUGH EYEGAZE]: Andplease don't forget to vote.

Sorry, I was told to say that.

[applause]

NARRATOR: I do not eat or drinkor walk or talk the way you do.

I don't breathe without a machine

helping me day and night.

I cannot move my arms orlegs and yet I am still man.

I've lost so much and yet I'm still here.

I feel everything-- the slightest feather

touch anywhere on my body.

My heart is alive tomeaning, to values, to love--

which is all it's ever been about.

I realize I have a choice--

I can let this life crush me, bearing

down on me until I'm dead, orI can bear the weight and live.

There is no surviving.

There is living and there is dying.

There are no gates to this suffering.

No liberator will come.

I must decide to live or die--

to live, to live.

[MUSIC - CATHY DAVEY, "UNIVERSE TIPPING"]

There's no way to shout itand no way but to marvel.

No easy way about it.

Go on, go on look it in the eye.

You never linger long around it.

The tiny fingers are strong but it

was you who found it so go on,go, go kick her with your shoe

and do your very worst.

Should it heal or hurt?

Go on and release, go on and release.

When it stings, it stingsand I'm turning red.

Oh, why would you ever even try with the world

conspiring to make you hard?

Who'd be so foolish as to try?

Only a rebel would, only a rebel would.