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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.