Film-maker refuses to let Motor Neuron Disease stop him directing first feature

Simon Fitzmaurice, who screened a short film at the Sundance Film Festival just before his diagnosis, is halfway through shooting ‘My Name is Emily’ on location in Co Wicklow

After his diagnosis with motor neurone disease (MND) and despite being completely paralysed, Simon Fitzmaurice still directed his first feature film My Name is Emily. Video: Ronan McGreevy

 

Making a feature film is an intimidating prospect and a leap of faith for any first-time director. You need self-belief, stamina, organisational skills and sheer bloody-mindedness to get your project across the line. Money is short, days are long, and exhaustion is an occupational hazard.

For first-time director Simon Fitzmaurice, the usual difficulties are compounded by having just about the most debilitating illness there is – Motor Neuron Disease.

Confined to a wheelchair and completely paralysed, Fitzmaurice can only communicate to his cast and crew using his eyes and iris recognition technology which transmits his thoughts via a computerised voice.

A father of five, Fitzmaurice was first diagnosed with MND in 2008 just after the screening of his short film The Sound of People at the Sundance Film Festival. The film was a profound, if succinct, meditation on death, and Fitzmaurice was tipped to make the leap from short to feature film. But then he was diagnosed and given four years to live.

Determined

He was determined to continue working, and the shooting of his first feature film, My Name is Emily, with a cast and crew of 80, has gone ahead. It stars Evanna Lynch, best known for her role as Luna Lovegood in the Harry Potter films, the up-and-coming British actor George Webster and two of Ireland’s finest actors, Michael Smiley and Barry McGovern.

The film is a love story about a 16-year-old girl who goes on a road trip across Ireland with a boy from her school to free her father from a psychiatric institution. Fitzmaurice says it’s about “madness, sadness and love”.

They are now halfway through the 27-day shoot, a very tight schedule for a feature film. Filming has taken place at four different beaches, in the Wicklow mountains and at various locations around the county. Fitzmaurice gets as close to the set as possible; if he cannot, he watches from a monitor. He also has a support director, Liz Gill. First on set at 7.30am and last to leave at 8pm, he operates out of a “video village”, which is either in a van or under a tent depending on the weather.

On his way home from filming, he catches up by email with his cast and crew. He compensates for his illness by meticulous preparation. Weekends are spent revising the script and looking at the rushes.

Why does he do it? “The reason for making My Name is Emily is the same for every film or piece of writing – a passion for the work, a creative drive that’s been with me since I was a teenager,” he explains via email.

“To manage to do this with MND, to overcome all that that puts in my way, shows me how much it means to me. Making a feature film is like a writer moving from short stories to their first novel. To spend this precious time I have doing something that fulfils me at the deepest level, that echoes in my soul.”

Funding

The film is partially funded by the Irish Film Board, Swedish co-producers Garage Films and by a crowd-funding campaign which rallied some of the biggest names in the film industry, both in Ireland and abroad, and raised €200,000 towards the cost of production.

Irish Film Board chief executive James Hickey said the board, like everybody else involved in this project, was supporting it entirely on merit.

“We’re supporting, as we do with all our other activities, Irish creative talent, which in this case is Simon Fitzmaurice. He has shown his talents already. As far as we are concerned this is the next stage, albeit in unusual circumstances.”

This film is life-affirming for the director, even more so given his cruel illness. “I don’t know the extent of the cost of my being alive,” he writes. “Of my working, I simply know that it’s worth it to me.

“I value my life. I value being alive. And I just hope I give back to everyone to make all the effort worthwhile.

“ I’ve been dreaming this project all my life, and now it’s here.