Filmmaker dies as cinema audiences view life story
Simon Fitzmaurice was 43, and is survived by his wife Ruth and their five children.
Mr Fitzmaurice was the first filmmaker in the world with MND to direct a feature film despite being unable to move or speak.
My Name is Emily was released in 2014 after Mr Fitzmaurice directed the road movie, starring Evanna Lynch, using ‘eye gaze’ technology where he communicated using a computer.
The film became a hit on the international festival circuit, bringing the Greystones family’s story to the world.
Mr Fitzmaurice, whose short films, including The Sound of People, were well-received at Sundance, was planning to make his first feature film when he was diagnosed with MND.
He and his wife Ruth, a young couple in their 30s, were expecting their third child at the time and vowed to keep living life to the fullest, going on to have two more children.
Mr Fitzmaurice went on to write a best-selling memoir, It’s Not Yet Dark, about his experiences of living with MND. The documentary based on that book, directed by Frankie Fenton, was released in Irish cinemas just two weeks ago and remains on release.
The documentary, told in Simon’s words but narrated by actor Colin Farrell, is a moving account of his determination to live with the disease for as long as possible.
“I have MND. It’s a neurological disorder that causes increasing muscle weakness and eventually paralysis. I have lost mobility in my limbs. I can no longer speak, swallow, or even breathe without artificial help. But I can still feel everything. I had a different life before this one,” he says in the film.
“To manage to do this with MND. To overcome all that it puts in my way, shows me how much it means to me.
“When all this happened, it was my writing that saved me. When my life fell apart, my writing was there for me. And, like writing, the passion of film has never left me.
“So My name is Emily is both of my passions combined. I’ve been dreaming this project all my life, and now it’s here.”
Mr Farrell, who knew Mr Fitzmaurice, recently told why he got involved with the documentary.
“There’s so much life inside this man just fighting to get out and be expressed,” he said.
“Even though the situation is seemingly insurmountable, what he’s achieved in the last five years, creatively, is unbelievable.”
Simon’s wife Ruth gave her own account of their lives in her recent memoir, I Found My Tribe.
The bestselling book is being developed into a feature film by Element Pictures and tells how she swims in the sea at Greystones daily.
It has helped her manage the strains and demands that MND has brought into her family’s lives, she told this newspaper earlier this year.
“The cove itself now has become a bit of a magic place for me. It’s my safe place. Sometimes I just drive by, I circle the seafront, and say ‘hello sea’. The minute I look at it, my brain just shifts into a different gear.
“Probably because my house is a bit of a public space, it’s somewhere I will go, where my brain can go somewhere else.
“It’s like a reset button. The minute you jump in the cold water, you know you’re going to come back out and you’re going to feel differently to when you jumped in, and there’s a real addiction to that.”
Speaking of her husband’s illness, she marvelled at his bravery: “I suppose it’s only now, in the later stages of Simon’s illness, that I have had to grapple with the fact that the way he deals with it is possibly difficult for me.
“The man who is my husband, yes, he’s still there, especially when it comes to the kids.
“I don’t know how Simon exists as he does. It’s incredible. It says something about human adaptability.” Cork Film Festival organisers were among those who paid tribute to Mr Fitzmaurice, tweeting: “So sad to hear of the passing of Simon Fitzmaurice, such an inspirational & talented filmmaker & writer. Our thoughts are with his family.”
