MY Name is Emily saw the extraordinary Simon Fitzmaurice — almost totally incapacitated by motor neurone disease (MND) — directing his first feature film using his eyes.
Now he returns to the big screen as a filmmaker and storyteller, this time in front of the camera.
It’s Not Yet Dark tells the story of Fitzmaurice’s diagnosis of MND and how it has progressed and impacted on him and his young family.
Movingly narrated by actor Colin Farrell, using first-person extracts from Fitzmaurice’s novel of the same name, it shows howthe father of five continues to communicate using the last physical attribute he can control — his eyes.
This weekend, his story heads to the Sundance Film Festival in the US, where it has been selected to compete in the world cinema documentary category, one of just 12 films to do so.
It’s Not Yet Dark culminates in the director defying the odds to make his first film, communicating with his cast via computer using the Eyegaze technology system.
“It gave me a freedom from MND which I never thought possible. It’s hard to explain. I suppose just being focused utterly for 12 hours a day liberated me from MND which tries to define me, every second,” says Fitzmaurice of the experience.
“When all this happened, it was my writing that saved me. When my life fell apart, my writing was there for me. And, like writing, the passion of film has never left me.”
Fitzmaurice has a long-running relationship with Sundance, which screened one of his short films before he was diagnosed with MND at the age of 34.
“Let’s face it: I’m a nerd,” he says.
“Or at least a wannabe nerd. When I was in school I was dropped into a class that seemed to me to be full of super brains. The boys to who mathematics just happened, like an event in their minds. Only I didn’t have a ticket to that particular concert.
“Everyone was better than me at everything. Except English. English was different. I’ve been a wannabe nerd ever since.
"I can never know enough, never read, see, do, or, be confident enough. And that’s fine with me. It’s the fire in the boiler.”
It’s Not Yet Dark, which will be released in Irish cinemas by Eclipse Pictures later this year, charts the impact MND has had on Bray-based Fitzmaurice, his wife Ruth, and their children, and his fight to stay alive.
Ruth learned she was pregnant with the couple’s third child on the same day that he was diagnosed, in 2008.
At that time, he was given four years to live, but has gone on to live nine years post diagnosis and father two more children, twins.
“The hardest thing about living with MND is the distance it puts between me and those I love,” Fitzmaurice explains in the film, which features poignant achieve footage of Fitzmaurice before his diagnosis — including his stag party and the couple’s wedding day — and footage as his illness takes hold.
“When you lose something central in your life, it’s important to have a memory of it so you don’t feel insane,” he says of the recordings in the film.
Still, Fitzmaurice reflected before agreeing to pass on the footage for the documentary, according to its director, Frankie Fenton.
“The film initially was going to be all My Name Is Emily, practically,” says Fenton.
“And then in the first week of the edit, Simon asked us to call round to his house and he had a drive waiting for us there. And it was 16 years of his life, on camera.
“It made sense when I suddenly had the drive, because Simon was a filmmaker, and no filmmaker can resist pulling out a phone or camera at all times.
"He had all of this footage that led up all the way through his marriage and having the kids, and then, suddenly, gets sick, and his camera gradually gets put down and picked up by his kids, who point the camera back at him.
“I think that was the moment where he went, ‘Go for it.’ I like to think that he just had trust in us, basically. It’s very hard, to see yourself on camera or to hear your own voice.”
Still, ge says he was apprehensive when it came to showing Fitzmaurice and Ruth the final cut of the film.
“That was absolutely nerve wracking,” says Fenton.
“It was terrifying. Myself, our two producers and our incredibly good editor, Dermot Diskin, who did Love/Hate, the four of us were sitting outside the room while the pair of them were watching it in the other room.
"We just bit our nails, because you don’t know… Simon will definitely tell you what he thinks! He’s not a shy man when it comes to his feelings.
"He could easily have said, ‘I don’t like this and I don’t want it,’ or we don’t know if we’re going to offend him in some way, or how it’s going to affect him.
“We gave it a few minutes and quietly knocked on the door. The pair of them were in tears and the first thing that Ruth said was: ‘Thank you for making something so beautiful for our kids to watch.’
"They were both very pleased with it, that was a very emotional moment.”
As well as the family films, one of the most powerful elements of the film sees Colin Farrell narrate as Simon’s ‘voice’, using extracts from his book in the first person.
Farrell, who knows Fitzmaurice, was keen to be involved, says Fenton, and recorded the narration via a studio in Los Angeles, where he lives.
“Colin was a fan of Simon’s work, I believe, and he had a copy of his book. I think they had developed a bit of a friendship between themselves.
"We asked Colin if that would be something that he would be interested in doing. He was very warm about that and jumped on board straight away.
“The recording was done as a voice-in from a Los Angeles studio with a link-in to Dublin. It was incredible — like a really super, great phone call. It was quite interesting and it worked a treat.”
The Sundance premiere will bring Fitzmaurice’s story to a new audience, and Fenton is enthused at the prospect of presenting it in Utah on Saturday night.
“I would have been really happy with the film from Ruth’s reaction, that was really it,” he said.
“To see how it affects people is remarkable. Somehow, somebody sees your film and wants to push it forward. It means the world to us. I’m really glad that Simon’s story can get out to a wider audience now, hopefully.”