Simon Fitzmaurice and the Making of My Name Is Emily
An Irish director pushes past the frustrations of a disease for the joys of filmmaking and family.
Photo courtesy of Kathryn Kennedy
“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.”