'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

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.

The film I desire to make is . . . My Name is Emily, a story of a 16-year-old girl. It's been living inside me for the past five years. Emily fascinates me. Because I believe in redemption. I believe in the power to take what life throws at you and to slowly come back, to take all you have and not be crushed to death by sadness and loss. This is a story of redemption. People are crushed every day by sadness and loss. This is not an attempt to say otherwise. This is just a story where that doesn't happen.

I spent my whole life . . . looking for Ruth.

It's two o'clock . . . the news numbers the dead. I am at peace. My son is putting golf balls in the hall. Over and over. He is four. Arden. I wish I could text into his head my love for him. Buzz around his ears, whispering my love. This is MND. This is because I cannot touch him, stand above him, draw him in. So I project my love, out into the hall, out into his life, and hope he hears me. Little footsteps in the hall.

There is a certain sickness to . . . always wanting a happy ending, if the desire for it is driven by a fear of seeing things as they are. Popular media is rife with that desire.

But there is another impulse, much deeper than fear. The will to live.

To live with the sadness, loss and love that is this life. To navigate it. To not give up. That is Emily's story.

Tell me . . . your secrets. In the deepest depths of night, whisper them to me. Tell me your desires if you can. Tell me your fears. Tell me what you like to eat. And how you like to eat it. Tell me details, as if you're half awake, half asleep. We are humans. I'm listening. Tell me with your body. Tell me with your mouth. Tell me why you think it's worth living. Tell me something I can keep.

Without thinking, tell me something in the shape of you. Your skin prickles in the breeze, tell me, I’m obsessed with you.

It's not yet dark. I can see . . . a chink of light through the curtains to the gloaming outside. All my children and Ruth are asleep. I'm holding her hand. The house is quiet. Yesterday was my first day casting. I was in a theatre auditioning actors, directing. I made it back to work. In 2008 the diagnosis told me it would all be taken away. And I made it back to work.

Take that away. Try.

This life is . . . a magical life. This morning I woke up feeling blue and Ruth brought in Sadie, my one-year-old girl, to sit on the bed beside me. Ruth lifted my hand to touch her face and Sadie pointed at me. They only stayed for a few moments but after they left I was changed. She is concentrated will to live.

Yesterday . . . I went down for Arden's first day of school. The air was fresh and bright before the heat of the day. After we dropped him to his class we went down to the coast. The sun on the sea was sparkling.

For more details see the twitter accounts @MNIE_ and @MNDMAN_ or check out the website mynameisemilythefilm.com