It's Not Yet Dark
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Some days I wake up blank, empty. And I wait for the day to fill me. Other days I wake up full, from a dream. And those are the days I despair. Because remembering is not feeling, and dreaming is not remembering. Dreaming is reliving. And then I wake up. And I feel like an old man. Dreaming of youth and waking up old. Dreaming of love and waking up alone.
And one day I decided I had a choice. I could fill my days with nothing or I could try and live again.
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It’s not yet dark
Ruth wants me to be a novelist. An easier life. But I’m not a novelist. I’m a filmmaker. 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.
I finish the script. I start looking for a producer. I find two. The kind of people who almost make me believe in destiny again. Kathryn. Lesley. We start to work.
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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’d said yes to the doctors telling me to die three years ago, they wouldn’t exist. They are life.
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Every profession is inconvenient to ALS (except perhaps a novelist or a mathematician . . .). But we don’t choose what moves us, what drives us. It chooses us. Just like ALS chose me. You are what you are. It’s up to you what you choose to do about it.
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Ruth and I struggle with this life of ours. We worry about each other, about our children. We have a different life from 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.
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So I’m a filmmaker with ALS. 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. ALS 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 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.
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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, as 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’d better get my ass outside.
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When James Joyce finished Finnegans Wake, he sat on a park bench and said he felt like all the blood had drained from his brain. That’s what I’m talking about.
I’m not James Joyce but I know what he’s talking about.
So that is desire.
The film I desire to make is My Name Is Emily, a story of a sixteen-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 slowly to 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 want to make a beautiful Irish film. Beauty fascinates me. I think about it all the time. Some films break my heart, prove that you can reach for human beauty in film, show how young an art form it is; beauty is only starting to be explored. Living as we do surrounded by the manipulation of the image, advertising becoming more and more lyrical, bending beauty to the task of selling, the question of beauty becomes more relevant and pressing. I find myself asking, what is beauty in cinema? Do we find figures backlit by the sun beautiful because they relate to some innate form of beauty within us, an idea of happiness, or is it a cliché that has formed to which we are responding? And I always come back to those films that remind me beauty is possible, that cliché hasn’t taken over yet. The films that touch me, move me, push me.
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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 ALS. This is why 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.
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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. It is mine.
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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.
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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.
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This life is a magical life. I wake up feeling blue and Ruth brings in Sadie, my now one-year-old girl, to sit on the bed beside me. Ruth lifts my hand to touch her face and Sadie points at me. They only stayed for a few moments but after they leave I am changed. She is concentrated will to live.
I go down for Arden’s first day of school. The air is fresh and bright before the heat of the day. After we drop him to his class we go down to the coast. The sun on the sea is sparkling.
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The darkness
Sadie and Hunter find me.
They sit beside me in bed or on my lap in my chair. We listen to music. She holds my hand. He touches my face. Nothing makes me happier in the world.
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I’m burning with this life.
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Ruth and I go to the Wexford opera festival. We try to go every year. Last year I missed it because I was ill. We have to book the tickets six months in advance. Every year I make it seems to mark another year alive. We go this year.
I wear my tuxedo. I don’t remember when I bought it. Ruth wears a simple black dress and I feel that familiar pride at being in her company. My dad drives us down. It puts us both at ease. We arrive at the opera house, but as we make to go inside my wheelchair won’t turn on. For the first time in three years it has broken down. Shit. It’s twenty minutes to the start of the opera and I can’t move an inch. I’m stuck. Ruth and Dad are frantically making phone calls but it’s Sunday night. Men in tuxedos run from the theatre offering their help. Ruth pulls a lever under the chair and suddenly I’m able to be pushed manually. But I still won’t move. The safety straps holding the chair to the car will not open with the angle of the chair and we cannot adjust the angle without turning it on. It’s five to. I resign myself to going home.
But Ruth won’t give up. Someone gets scissors. Ruth leans down into the dark and cut
s the straps. I’m free. Hands pull and I freewheel backwards down the ramp onto the cobbled street. More hands, and Ruth is by my side pushing with the others, propelling me across the road. Through a blur of tuxedos and ladies looking, through doors that open before us, and suddenly I’m in the packed opera house, in my place, and the doors close behind me. We go to turn on my computer but someone has left it on in the bag and it’s overheated and is broken. I have no voice.
Ruth is exhilarated after the mad dash in here. She is electrified, her face vibrant and alive. She whispers in my ear. It’s a sign, she says, you’re stripped back, no technology, it’s just you and the music. It’s just you and you’re enough. I can understand you with your eyes. She kisses me. Jesus. I’m in love with this woman.
The lights go down and stay down as the orchestra plays its introduction. I’m in the dark with all these people, as alive as everyone else. I feel a part of humanity, just sitting in the audience, no technology, no one looking. The timbre of the live instruments fills my senses. In the darkness, it’s just the music and me.
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About the Author
SIMON FITZMAURICE is an award-winning writer and film director. His short film The Sound of People was selected to screen at the Sundance Film Festival. Fitzmaurice holds honors master’s degrees in both Anglo-Irish literature and drama, and film theory and production, as well as an honorary doctorate of philosophy. His multi–award winning first feature film, My Name Is Emily, which he wrote and directed using eye-gaze technology, was released in the United States in February 2017. A documentary about Fitzmaurice, also titled It’s Not Yet Dark, premiered at Sundance in January 2017, and will be released in theaters this summer and on Netflix in December. He lives in Greystones, Ireland, with his wife and five children.
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