Motor neurone disease hasn't stopped Simon Fitzmaurice from writing and directing one of the best films of the year
And when Simon Fitzmaurice’s life was cruelly shattered by a diagnosis of motor neurone disease, he refused to let it crush his ambitions.
Now the Irishman has become the first person in the world with MND to write and direct a movie solo.
My Name is Emily is an extraordinary achievement in itself — that the emotional drama is resonating so strongly with film fans is a bonus.
But then, nobody who has met Fitzmaurice would doubt he would achieve his goals.
MND may have stolen his voice but he remains a wise, funny, and articulate communicator (with the help of computer software).
And he freely admits that making the film was a life-altering experience.
“The film has really surprised me. I didn’t expect it to be life-changing, but because I have MND it affected me differently,” he explains.
“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.
“Making a feature film is like a writer moving from short stories to their first novel. It’s inevitable. And I’ve been driven towards it all my creative life.
"When you love films as I do, you simply want to contribute. To spend this precious time I have doing something that fulfils me 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.
"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.
“So My name is Emily is both of my passions combined. I’ve been dreaming this project all my life, and now it’s here.”
Released in cinemas on April 8, the film tells the story of a teenager (Harry Potter star Evanna Lynch) who sets off on a road trip around Ireland in search of her father.
My name is Emily, which also features Belfast-born actor Michael Smiley and rising British star George Webster, required a huge amount of effort and goodwill to get into production in the first place. Many got behind Fitzmaurice’s efforts.
The late Alan Rickman, who knew the Irish writer/director since they met at the Sundance screening of his award-winning short, The Sound of People, was a fan.
Rickman publicly lent his support to a crowdfunding campaign that was established to get the film into production, and donations came flying in from movie lovers at home and abroad. Colin Farrell, Lenny Abrahamson, and Sam Neill all endorsed the project.
Filmmaker Liz Gill supported Simon on set, helping to ensure his directorial voice was heard.
“The Irish Film Board were crucial to the film, their support from day one meant we could get all our other financiers on board,” says Fitzmaurice.
“The crowdfunding came almost at the end of a very long road of financing, where we needed that extra sum of money to support me on set.
"Low-budget filmmaking is hard, but there were extra requirements for me, so the crowdfunding enabled me to have those supports and to go back to work.”
The movie has been shortlisted for eight Iftas and secured several international deals, including the US.
Fitzmaurice, who lives with his young family in the seaside town of Greystones, Co Wicklow, has not let the devastating diagnosis of motor neurone disease stop him from leading a full life.
He was diagnosed with the progressive condition which attacks the nerves in the brain and spinal cord, leading to weakness and wasting, in 2008.
On the same day of his diagnosis, wife Ruth learned she was pregnant with the couple’s third child.
At the time, he was given four years to live, but went on to father two more children, twins, and has lived eight years post diagnosis.
The disease may continue to progress but Fitzmaurice is not finished with his ambitions — he reveals that he’s currently working on another screenplay.
A follow-up to his memoir, It’s Not Yet Dark, is also planned.
Still, Ruth was concerned about her husband as the beginning of the shoot loomed.
“I could not sit still now, I’m completely addicted to work, to getting on the road,” he says.
“Ruth wanted me to be a writer because she was worried the film would be too much for me, but from the first day, a fire was lit inside me. Seriously, an energy I didn’t know I had and it has not gone out.”
Getting a film completed on time and under budget is a stressful experience, and the director knew he would have to plan ahead to allow for the extra challenges his condition would bring.
“Because of the incredible team around me, my directing is made so easy.
“My computer is my voice, in every sense of the word. I operate my computer solely with my eyes.
"The sensor below the screen picks up every movement of my eyes. To select something I simply dwell on it for a moment. It takes a little getting used to.”
He did not fear the challenge, but rather felt energised by it.
“To be perfectly honest, from the first day of shooting I was utterly elated. To me directing on set is just thrilling because it requires 100% of your focus.
“When I’m on set, there is a short delay while I type up my thoughts. I overcame this by preparing as much as possible in advance of the shoot, so that everyone involved would know exactly what we were doing all the time, thus reducing unnecessary discussions on set.
“One of the hardest things with MND is meeting new people; it just takes time for people to get comfortable with me.
"On the film I met new people every day, and have to communicate on a creative level, and very quickly. That was a serious challenge.”
He says now that the casting of young Irish actress Evanna Lynch, who became a global star when she was cast as the quirky Luna Lovegood in the Harry Potter series, was crucial to the success of the movie.
“When I met the actors, I was seriously nervous because I suddenly realised I didn’t have any of my old charm, to put them at ease,” he explains, adding that he quickly realised he would have to “develop a new level of patience” to get to know them.
“(The character of) Emily was the absolute key to this film so we spent the longest time looking for the right person. We held auditions all over Ireland. And I thank my lucky stars that we cast Evanna Lynch.
"Luckily Evanna fell in love with the character of Emily, deeply and personally. Evanna made self-tape auditions from America (where she is based) and her passion for the character was crystal clear.
“Working with Evanna was an education for me. Evanna disappeared into Emily. I could not have asked or hoped for a better lead for our film.”
Fitzmaurice’s passion for writing began at an early age and he fell in love with cinema when his dad brought him to see sci-fi comedy The Cat From Outer Space as a child, while the iconic Dead Poets Society encouraged him to release his inner nerd, he jokes.
“Let’s face it: I’m a nerd. Or at least a want-to-be nerd,” says Fitzmaurice.
“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 want-to-be 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.”
My name is Emily was warmly received at last month’s Audi Dublin International Film Festival in advance of its national release.
The best part of that experience?
The reaction of Fitzmaurice’s young family, who think it’s “epic” that their dad has made a film.
“It has been wonderful,” he agrees.
“My sons saw the film for the first time at the festival. They thought it was ‘cool’. That means the world to me.”
My Name is Emily is released on April 8.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
