The film-maker who won't give up
Bray man Simon Fitzmaurice's return to the director's chair while struggling with the challenges of motor neurone disease is captured in a new film. What started out as the story of making a film ended up an intimate portrait of their family, his wife Ruth tells our reporter
In the spring of 2016, a charming and soulful low-budget independent film crept into Irish cinemas. Starring Evanna Lynch and Michael Smiley, My Name is Emily used mood, rural locations and haunting natural light to powerfully illustrate a 16-year-old girl's search for her real father.
But there was something extra special about this film: made with crowd-funding, it was directed from a wheelchair by a man who could neither move nor independently speak. Simon Fitzmaurice had been living with the advancing restrictions of motor neurone disease (MND) for almost a decade, but that hadn't stopped him pursuing his film-making career. A father of five young children, he's also written a memoir.
It's one thing to hear about an achievement like this, another entirely to live it, and in Frankie Fenton's intimate new documentary, It's Not Yet Dark, we're given a real sense of what Simon and his family have gone through. His words are spoken by Colin Farrell, and more on him later, but the film's other star is Simon's wife, Ruth, who recently released her own memoir. Watching the calmness and good humour with which she's managed Simon's illness, their young family and her own burgeoning writing career leaves one slack-jawed in admiration, and when I speak to her, I ask how watching this summary of their life had felt from her point of view.
"It was really weird watching it," she says. "We live so much in the moment in this family, just moving from one situation to another, so to have the whole thing condensed and pulled together and rolled into a ball and fired at you is quite a thing, and you think did we really do that?"
She is, she says, "as much in awe as everybody" about how her husband has dealt with his illness, and battled to work and live as complete a life as he possibly can. "I try and put myself in Simon's position," Ruth says, "and it's everyone's worst nightmare, you're sitting there and you can't move. I don't know how he does it, you know. His drive is amazing."
In Fenton's film, Simon explains that "the hardest thing about MND is the distance it puts between me and the ones I love. When you lose something central in your life, it's important to have a memory of it so you don't feel insane".
It's Not Yet Dark is full of such memories, courtesy of photos and video clips taken by Ruth and Simon that provide a vivid portrait of their life together.
"I think the original idea had been just to make a documentary about Simon shooting My Name is Emily," Ruth tells me, "and I don't know if they'd contemplated including his home life at all. But I actually grew up with Frankie, the director of the documentary - his older sister was my bridesmaid. And because a lot of the meetings for My Name is Emily happened at home, we got to know the producers of the film quite well, and they became friends.
"So it didn't feel like too much of an invasion really, it just felt like an extension of all the other madness."
In one of the film's most powerful moments, Ruth talks to camera about her experiences with Simon."They brought me into a dark room, and I felt like I was in a confessional. There was this screen in front of me, and I just talked. I came out in a daze. I had been in there for about an hour and I'd no recollection of anything I'd said!"
What she in fact describes, in moving but matter-of-fact ways, is her meeting with Simon at a party, their courtship, marriage, the arrival of their first child. Simon, an irresistibly charming young Bray man with big ideas and lots of confidence, had been drawn towards film-making thanks to his father's love of cinema.
In 2008, his visually arresting short film The Sound of People was selected for screening at the Sundance Festival.
He travelled there, met Robert Redford and drank in the sights and sounds of the world's most prestigious film festivals. The world, it seemed, was Simon's oyster: then he began to experience a strange weakness in his foot.
"He started complaining his foot had gone floppy when he was walking in the snow," Ruth remembers. "He'd noticed it from time to time before that, but it was more pronounced in Sundance. I had dismissed it up till then and gone, ah, you're fine, you're just being a hypochondriac - such a kind, concerned wife!
"That was in January of 2008, and when we came back, he was referred to a neurologist, and by June we got the diagnosis."
She remembers that day well. "We'd no clue there was dreadful news coming, it was just another medical appointment to us, we'd had so many of them. We were going up to Dublin and then we were going for lunch to our favourite restaurant, so when we came out, we were dazed and we said, well what will we do, so we just went to the restaurant and sat there shell-shocked. It was awful."
MND is a battle of attrition, a tale of diminishment that must be hard to watch, never mind live through.
"I have a friend whose husband was in an accident and is in a wheelchair," Ruth tells me, "and we debate the differences in our experiences a lot. In her husband's case, it was a much more swift cutting off, where everything happened at once, and the terrible drama of that, the before and after.
"But MND is the total opposite of that, it's a subtle dwindle that happens over time, and you reach a plateau and stay there for a while, and you're just getting used to it when it drops again and you lose something else. So in a way, you're in this constant process of grief, grieving things as they go, first his arm movement, then his legs, he's in a wheelchair, he's gonna lose his voice, he can't eat things. So yeah, it's shit."
Ruth faced a battle to get Simon home from hospital when his condition worsened and his lungs first began to fail: respirators are extremely expensive, and most MND sufferers are condemned to live out their days in hospital. Then they discovered that Simon was entitled to a ventilator on his medical card.
When Simon lost his voice, and the use of his hands, technology again came to the rescue. Using an eye-gaze computer, Simon now moves his pupils to write, draw and electronically talk. He used it to produce his beautifully-written 2014 memoir, It's Not Yet Dark. Then he announced his intention to direct a film idea he'd been working on for years.
"Leading up to the shoot," Ruth remembers, "there was this momentum building about whether or not he'd be able to do it, and your emotions went from anxiety about whether or not he could do it to the absolute delight of oh my God, he's doing it, and then some. As he was making it, he lost loads of weight, and he had these blazing eyes, it was so exciting to watch."
Simon got to know Colin Farrell after asking the Hollywood A-lister to star in his film. He couldn't, but the two men began an email friendship. "Then there was one St Patrick's Day I got this call to say that Colin would be calling out. He just popped around, and it became a regular thing then. He might drop in and watch a movie with Simon, stuff like that, they just became mates. He did such a great job on the voice-over, and then there was also that eerie thing that he sounded quite like Simon's old voice."
When we speak, Simon had been admitted to hospital with an infection. "We had a screening of the documentary at the Light House Cinema (in Dublin) the other night and he couldn't go, which was really weird timing in a way, or typical timing, you might say, given the way Simon does things. He would have loved to be in the thick of it." Does he still talk about making more films?
"He thinks about doing more everything," Ruth says, "he's constantly wondering what he'll do next, those aspirations never go. Physically, whether he can do another film, I don't know. But then, I was worried he couldn't do it the last time, so what the hell do I know."
It's Not Yet Dark is out now in selected cinemas