“We don’t choose what moves us, what drives us—it chooses us. Just like Emily chose me.”
This philosophy belongs to Simon Fitzmaurice, a 39-year-old award-winning Irish filmmaker. He is a poet, a storyteller, an artist. He has a love for life and a passion for his craft unlike any most people have seen. And, five years ago, this quick-witted, energetic young writer/director was diagnosed with Motor Neuron Disease (MND), also known as A.L.S. or Lou Gehrig’s Disease.
There is not much that Fitzmaurice can do quickly. There is virtually nothing he can do independently. Yet, when doctors advised him not to obtain the ventilator that keeps him alive, he knew there was still much more living he wanted to do. Therein lies the beginning of a truly inspiring story of a man determined to follow his dreams to the point of death.
A storyteller from a young age, Fitzmaurice’s literary voice was first heard in the form of poetry. In 2003, he decided to try filmmaking, and thus, his first short film, Full Circle, was born. Full Circle won several Best Short awards around Ireland and a Jimmy Stewart Memorial Crystal Heart Award at the 2004 Heartland Film Festival in Indianapolis, Ind. Even still, Fitzmaurice was unsure if filmmaking was the medium for him, and he waited three more years before making his second short, The Sound of People.
The Sound of People received even more accolades than Fitzmaurice’s first short, screening around the world and earning its spurs as an official selection for the 2008 Sundance Film Festival. It was while at Sundance, perhaps the pinnacle of Fitzmaurice’s career up to that point, when he felt the first symptoms of the disease that would alter his life irrevocably.
In the space of five years, Fitzmaurice’s family grew while his disease quickly advanced. He and his wife, Ruth, now have five children under 10, the youngest of which are twin toddlers. Where just a few years ago he could run and play and shout with his children, he is now confined entirely to a wheelchair without the use of his limbs and only able to control his eye movements and occasionally engage in a slight smile. He speaks and writes through an Eye Gaze computer that communicates his thoughts to the world around him solely through the movements of his eyes.
Fitzmaurice has written several articles for The Irish Times since the onset of his MND/ALS, speaking openly about the frustrations of the disease but attributing the joy his family brings to his everyday life, emphasizing that there is no question that he wants to continue living, loving and creating as long as he can.
He writes of his “simple, raw, unending desire to make film” in a September 13th article for The Irish Times: “Not as a statement, not to prove I can, not out of ego and not out of sheer bull-headedness. Out of love. For film. For the process. For the work. For the why we do the things we are driven to do. Driven to exhaustion because just at that point is the perfection that we seek, the all we have to give given to an art.”
Fitzmaurice has never let his filmmaking dreams die, even when they seemed impossible for a person with MND/ALS.
Currently, he is in pre-production for his feature film debut, My Name Is Emily. It is the story of a 16-year-old girl, Emily, who, with the help of her friend, Arden, sets off to find her father, a visionary writer who is locked up in a psychiatric institution far away. Along the way, driving across Ireland, Emily and Arden fall in love.
Fitzmaurice and his producers have secured initial funding for the film. Only one thing stands in his way—Fitzmaurice, despite his debilitating condition, is determined to direct My Name Is Emily, and this requires an additional level of support due to his condition, and additional money to cover the costs.
While it may seem far-fetched to some—after all, who’s ever heard of a director who can only communicate using eye movements?—Fitzmaurice and his team are admirably unswayed. My Name Is Emilyis Simon Fitzmaurice’s film, and he will direct it. The producers have set up an IndieGoGo account to raise the additional €200,000 needed (approximately $272,290). As of November 30, they have raised €36,816 and there is only just over a week left in the campaign to make Simon’s dream a reality.
An international team of filmmaking heavy-hitters have jumped on board to promote the project. Videos and quotes from faces such as Colin Farrell (Dead Man Down), Sam Neill (Jurassic Park), Alan Rickman (Harry Potter and the Deathly Hallows), Jim Sheridan (In America), Kirsten Sheridan (August Rush) and Lenny Abrahamson (What Richard Did) are highlighted on the film’s Facebook and home pages.
Abrahamson says on the film’s home page, “I met Simon quite a few years back and was immediately aware that here was the real thing; an artist with his own distinct voice and the talent to express it through film. I want to continue to hear that voice—I want to see My Name Is Emily in the cinema—and it doesn’t surprise me that others in the film industry feel the same and are investing in the production.”
For anyone who has seen Fitzmaurice’s previous short films, there is good reason to believe that My Name Is Emily will be a triumph. Fitzmaurice is a filmmaker who portrays life and the world with a delicacy as sensitive as butterfly’s wings and an honesty as real as a train crash. His work celebrates love and the endurance of the human spirit in its every waking moment. Fitzmaurice’s tenacity alone is inspiring, but perhaps even more enduring are the stories he fearlessly hopes to share.
As Fitzmaurice writes in the final, eloquent lines of The Sound of People, “There are moments in your life that stay with you forever, times you return to again and again. The day that I die will be the end of all moments. Today is not that day.”
For more information on My Name Is Emily, go to www.mynameisemilythefilm.com, or check out the IndieGoGo campaign.
Full Circle and The Sound of People are available here.