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It's Not Yet Dark tells the ground breaking story of Simon Fitzmaurice, a talented young Irish film maker with ALS (MND), as he embarks on directing his first feature film through the use of his eyes and eye gaze technology. Director Frankie Fenton presents the remarkable story of.
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It's Not Yet Dark
Premier Logo Created with Sketch. Login Follow Us. It is already being compared to defining memoirs like The Diving Bell and the Butterfly. And it's easy to see why. The book is sparsely and beautifully written. The story opens with a vignette of life as it is now, with Simon paralysed, in a motorised wheelchair, eating through his stomach, breathing through his neck, using eye movements to communicate through an 'eye-gaze' computer.
It's Not Yet Dark - Events - Universe
His is a life of difference, a life where he can never be invisible as he once was. Anonymity is a privilege that many of us take for granted. And then the story jumps back in time. Before his diagnosis in , Simon was working as a filmmaker. He had just had a film accepted into Robert Redford's Sundance Film Festival, one of the most prestigious film festivals in the world. The following month, his foot dropped. The effect was confusing. He thought perhaps it was a result of climbing a Himalayan mountain the previous year and then wearing funky shoes with little support. A few months later, the problem had not improved.
'It's Not Yet Dark': Sundance Review
He got tests and went to see a neurologist. The tests were excruciatingly painful, involving needles being prodded into nerves. He wanted the pain at the time because his wife had just had a miscarriage and he wanted to feel something.
On the day he got his diagnosis, his wife told him she was pregnant with their third child. They bought a cottage in the middle of nowhere, a place where they could both concentrate on writing full time his wife Ruth is a novelist. Simon's dream had always been to have a home cinema and he set to work on the project, even though the overwhelming sense is that life and all of their previously held dreams have changed irrevocably. He goes through denial.
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He and his family are determined to prove the diagnosis wrong, looking for any possibility of misdiagnosis, and then for research that might help reverse his condition. He calls himself, and those like him, the hopeful and the desperate, willing to try anything, to pay anything to any sort of healer or programme that might make a difference. Nothing does. The progression is stark and frighteningly fast. A few months after his foot dropped, he danced at his sister's wedding. This will be the last time he will dance.
Simon is probably one of the fittest and healthiest people with MND, but he admits it doesn't matter. It carries on, relentless. Even though the cottage was their dream, living in the middle of nowhere in rural Ireland is not compatible with life as it is now. They move back to Simon's hometown of Greystones, Co Wicklow. Despite the difficulty of such a diagnosis, Simon's joy in his children and his wife is palpable. He takes his sons out individually around Greystones.
They sit perched on his lap in his wheelchair.
His twins clamber on him in bed and touch his face. In between his unflinching account of life with MND, we learn the story of his life. His life as a boy, when his father first introduced him to his love of film. His life as a young man working abroad with his father. His life as a student travelling and partaking in rites of passage. His life as a man in love and driven to win the woman of his dreams.