'My babies, Sadie and Hunter, are a light in my life'
A father of five writes about the strangeness of living with illness and his hopes for his next movie
Film-maker Simon Fitzmaurice with his twins shortly after their birth
Five years ago film-maker Simon Fitzmaurice was diagnosed with motor neuron disease (MND) and given “three to four years to live”. He lives in Greystones, Co Wicklow, with his wife Ruth and their five children, including twins who were born four years after he was diagnosed. He uses a wheelchair and is attached to a ventilator which enables him to breathe. He writes and communicates using his eyes via an “eye gaze” computer.
Fitzmaurice is about to launch an online crowd funding campaign to raise money for his latest film My Name Is Emily. Here he writes about life with MND, parenthood and his hopes for the movie.
My wife wants me to be . . . a novelist, an easier life. But I’m not a novelist. I’m a film maker. A writer and director. And once you find out what it is that moves and shakes you, you don’t want to do or be anything else.
My babies, Sadie and Hunter, are a light in my life. Every day they fill me up, like a battery depleted. Just to see their faces. I’m hooked.
If I said yes . . . to the doctors telling me to die three years ago, they wouldn’t exist. They are life.
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.
Ruth and I struggle . . . with this life of ours. We worry about each other, about our children. We have a different life to many, and it is isolating. The strangeness of it. We wake up often, in the middle of the afternoon, in the middle of some simple action, and think: how did this happen? How did our lives become like this? And there is a sadness with it and a memory of a different life, lighter, like a remembered dream. Then it’s gone, and we slip back into the stream of now, where our children are. I like being alive.
So I’m . . . a film-maker with MND. What a whopper. It’s certainly never dull.
Unlike other film makers . . . I’m unencumbered with the worries and stresses of building a career out of the work I love. MND 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 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.
And then . . . Ruth comes into the room, with the freshest face I’ve ever seen, and asks me to come outside, to sit with her, it’s sunny, and like always in those moments, I can’t hear her voice, I’m looking at her hair, her face, trying to take her in, and I better get my ass outside.
When James Joyce . . . finished Finnegans Wake, he sat on a park bench and said he 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. That is desire.