Simon Fitzmaurice is an award-winning writer and film director. His recently published memoir It’s Not Yet Dark was a #1 bestseller in his home country of Ireland. His films have won prizes at film festivals all over the world, including Best Short Film at the Cork Film Festival and the Belfast Film Festival (twice), the Grand Jury Prize at Opalcine, the Jimmy Stewart Memorial Award at the Heartland Film Festival, and the Jury Award at the Palm Springs International Film Festival. His short film The Sound of People was an official selection at the 2008 Sundance Film Festival. Shortly after that film’s premiere, Simon was diagnosed with ALS. Now completely paralyzed, Fitzmaurice wrote the script for My Name Is Emily through the movement of his eyes, using state of the art iris recognition software. This is also how he communicated with cast and crew while directing the film’s six-week shoot. My Name is Emily is on theatrical release in the U.S. from February 17.
We are driving into Ardmore Studios, a place I love, our base of pre-production operations. But although we started months ago, this is the first time I’ve been really nervous. I was a little tentative meeting the crew but nothing like this.
Today I meet the principal cast, Evanna and George, and as we park in our spot, I have a pain in my stomach. I’ve emailed them both lots of times and seen them in scores of audition tapes for Emily. But meeting them is different. I’m different.
I warned them, of course. That I’m different in person than in email. I’m slower in real life. That is what I told them. Meeting new people is tricky. Or old people from my life before Motor Neurone Disease (aka ALS.) But I’m well used to it now. I just roll with it.
I’m nervous today not because I’ve never met them before. It is because this is my job. It is not a hobby. It is my passion, my calling. No other creative work has ever fulfilled me the way filmmaking fulfills me. This is the first film I have made since my body changed. My mind, my heart, my soul, have only changed the way everyone’s develops.
I’m nervous today, petrified really, because I’m about to find out if this changed body will still allow me to direct actors. I can write the script, I can storyboard, choose frames with my D.P., discuss art direction with my production designer, make judgments about costume, cast, locations, music, I can go through the film frame by frame in the edit. I can make all the hundreds of decisions that comprise this job. But it will all be for nothing if I cannot create an intimate working relationship with two people I have never met.
Working with people is part of what drew me to film. I’m not made to write in a garret alone. Directing involves collaborating and encouraging others to give their all. I love it. I was good with people before MND, able to disarm them, put them at ease. But all my tools are gone. Body language, touch, varying tones of voice, a few stories, a relaxing joke. Gone. Nothing left but my thoughts appearing slowly on a screen. Descartes’ brain in a bottle.
I make it into my office and wait. George arrives first. He is gregarious, warm and unusually relaxed for someone meeting me for the first time. I realize he is putting me at ease exactly the way I used to myself. We like each other immediately.
Evanna arrives later. This is different. Her performance will be the soul of the film. We had been looking for Emily for more than a year and the team and I did not agree on our shortlist of actors. But the moment Evanna’s tape arrived in the office, there was no more debate.
Evanna is a self-confessed shy individual. I am definitely more shy now than I used to be. Evanna comes into the office and we sit alone in silence as I type with my eyes. We have had a long and detailed correspondence in the months before this moment. About film, literature, poetry and raspberries. She is a fiercely intelligent young woman, passionate about a lot of the same creative elements that drive my life. She is the perfect Emily.
In writing, I get to be myself. My thoughts and feelings flow as they once did in conversation. And though I lost the ability to speak, I never lost my voice.
So I feel like I know Evanna even though we are only meeting in this moment. When I warned her a few days ago in an email that I’m slower in real life – referencing the actual time it takes to create the flow of my writing, my correspondence – Evanna had responded with something that would define our friendship from that point forward and also make me a hell of a lot less nervous than I could have been today. She wrote that she was a lot more comfortable expressing herself in email than in person.
This was news to me, a life lesson. To learn that my situation, which I had naively thought was unique to those in my physical condition, was quite a common human experience, was a profound awakening to the dumbass that I am. So the shy girl and the extrovert who cannot speak, both of whom prefer to express themselves in writing, sat in the silence, and slowly, very slowly, got to know each other.
It was enough. I was afraid my means of communication would not be sufficient for me to direct my film. But the written word is powerful. And a few choice words, at the right time, is all I would have ever done, with or without MND.
I love film. Others will judge the value of my work, but that is not why I do it, for the praise of others. I do it because, in all seriousness, I’m a worshipper who sits in silence in the chapel of the cinema. But, more than that, I do it for a simple love of the work itself.
Once you find out what it is that moves and shakes you, you don’t want to do or be anything else. Every profession is inconvenient to Motor Neurone Disease (except perhaps a novelist or a mathematician … ). But we don’t choose what moves us, what drives us. It chooses us. Just like MND chose me. You are what you are. It’s up to you what you choose to do about it.
So I’m a filmmaker with MND. What a whopper. It’s certainly never dull. Unlike other filmmakers, I’m unencumbered with the worries and stresses of building a career out of the work I love. MND aptly strips you of such worries, coming as it does with far more pressing demands. What remains is desire. The simple, raw, unending desire to make a film. Not as a statement, not to prove I can, not out of ego and not out of sheer bullheadedness. 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. When James Joyce finished Finnegan’s Wake, he sat on a park bench and said it felt like “all the blood had drained from my brain.” That’s what I’m talking about. I’m not James Joyce, but I know what he’s talking about.
I was obsessed with film from a very young age. Growing up in an overtly literary Ireland, I remember feeling embarrassed at being more moved by films than books. For me, film was something that happened somewhere else. I didn’t know of anyone’s parents who were in film. But Ireland was changing rapidly.
I’ve been writing since I was a teenager. I always wanted to be a writer. I started writing poetry when I was fourteen and never stopped. I filled books and books.
But when I went to university to study English, there were suddenly all these courses teaching film. I remember having a eureka moment. I’m obsessed with film. What if I could actually make them? Use my writing to create film? A door opened that has never closed.