Filmmaker Fitzmaurice dies aged 43 af ter battle with MND
WICKLOW film director and writer Simon Fitzmaurice has passed away – nine years after he was told he had four years to live.
The father of five was diagnosed with motor neurone disease in 2008 at the age of 32 and was given a life expectancy of four years.
However, he went on to direct the film My Name is Emily, which was released in 2015, and write best-selling memoir It’s Not Yet Dark, published this year.
My Name is Emily was nominated for eight Ifta awards in 2015, while It’s Not Yet Dark was later made into a documentary, narrated by Colin Farrell.
His book described his battle with the disease and how he first noticed his condition in the form of a foot that went ‘floppy’, while he was in Park City, Utah, US showing his short movie The Sound Of People at the Sundance Film Festival. His wife Ruth found out she was pregnant with their third child on the same day her husband received his diagnosis.
The couple went on to have twins in 2012, and this year, Ruth’s memoir of her family’s struggle to cope with MND, I Found My Tribe, enjoyed huge success.
The memoir, which tells how swimming with friends in a cove in Greystones, Co. Wicklow, became the release she needed from her situation, is set to be made into a movie after Element Pictures, the makers of the Oscarwinning Room, bought the rights to the book. Two years after Simon’s diagnosis, and as his lung function collapsed, he chose to be mechanically ventilated at home against the advice of his doctors.
In recent years, he had lost all movement in his arms and legs and could no longer speak except through an eye-gaze computer he controls with his pupils. Asked in 2011 why he wanted to live, Simon wrote a very personal article.
He said: ‘Love for my wife. Love for my children. My friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. I want to live. Is that wrong? What gives a life meaning? What constitutes a meaningful life? What gives one life more value than another? Surely only the individual can hope to grasp the meaning of his or her life.’
He added: ‘You have motor neurone disease, why would you want to live? Motor neurone disease is a killer. But so is life. Everybody dies. But just because you die, just because you will die at some point in the future, does that mean you should kill yourself now? For me, they were asking me to take my own life. Or to endorse euthanasia. I refused.’
Speaking about their life together recently, Ruth said that while her husband’s disease had taken a terrible toll on their lives, it had also brought some positive elements. She said: ‘If I was looking back, well obviously if there was a chance Simon never got MND. But... things are what they are... With the worst of things, magical things happen as well.
‘Simon’s conclusion in the documentary is a motto he lived by: “It’s not about how long you live, it’s about how you live.”’
‘My love is undimmed’