Life is pretty surreal for Ruth Fitzmaurice right now. Currently working on the film script for her debut book I Found My Tribe, Ruth’s days at the minute involve writing, looking after her five young children, fulfilling a seemingly endless stream of media commitments and helping to care for her husband Simon.
If things are surreal now, they will have certainly felt so in 2008 when Simon – a writer and film director – was diagnosed with Motor Neurone Disease. He was given three to four years to live, but nine years later, he’s still here, living at home with Ruth and the children; Jack, Raife, Arden and twins Sadie and Hunter.
A native of Ardee, Ruth is the daughter of David and Pat O’Neill. She grew up in the family home on the Carrick Road, where her father operated the doctors’ surgery before it moved out to a standalone premises. Ruth has four brothers and one sister – and now with five of her own, family is a huge part of her life.
At the time of Simon’s initial diagnosis, the family were living local – in Killany. “We had this romantic thing were we were going to live in the country and I was going to write and he was going to make movies,” Ruth tells ThisIsArdee.ie.
Ruth and Simon had Jack and Raife at that time and Arden was on the way. The news of Simon’s diagnosis didn’t stop a move to Australia and eventually a return to Greystones to be closer to Simon’s family.
“As much as we loved the countryside, it was 20 minutes from anything and the roads were difficult for Simon to drive on. We loved it out there. It was gorgeous – but not near the sea.” The sea would become a central tenet of the story for Ruth.
Simon has lived well beyond the initial prognosis of three to four years. He is on a ventilator and has no body function and can only move his eyes. He communicates using an eye gaze computer. The family home – busy enough you’d imagine with five young children – is a constant stream of nurses and carers, coming and going.
The book – out now – is romantic, honest, dark and funny too. It’s Ruth’s story of how she coped with Simon’s decline in health, dealing with family life and her coping measures when faced with the challenges it all brought. She would eventually find her tribe.
Ruth’s writing is beautiful and her sense of humour adds so much to it’s appeal and how she approaches every day. In a recent interview with Matt Cooper on Today FM, she recalls how uncomfortable she found Simon communicating – using computerised speech software – with their Amazon Echo home device commonly known as Alexa.
“That’s just the way I was built,” she says. “My family would have always been like that. It’s built into me. It’s probably a survival thing as well. There’s always humour to be found. The more miserable the situation, the more beautiful the humour often I find.”
Ruth was once too busy for swimming, as you’d imagine with Simon and five children to look after and provide for. But living in Greystones, she and her friends soon found solace in the sea.
“The swimming adventure was something we said we’d do once and it kind of evolved into something else,” she tells us. “I fell in love with the sea. I had this memory of this wildness I grew up with. I spent a lot of time in Donegal in the summers, a lot of summers in Clogherhead.
“It connected me back to that – a part of my life I had forgotten. There’s a real freedom in that. It’s a childish thing. That freedom, that relief. I suppose I do admire the way my kids are in that way. I joke with my friends that we never want to be proper grown ups. That sense of spontaneity and freedom that comes naturally to children. Watching the way my kids are and the way they live in the moment, they are all connected to me now. The minute you get in, it’s a total release.”
“The irony of being in an extreme situation – in terms of illness – like us is it becomes more urgent to find something like that and you’re naturally drawn to it for your own survival. It pushes you to this. At this stage, I can’t imagine not doing it,” she continues.
There’s always time for swimming now. As we speak to Ruth, she’s sitting in her car outside her home in Greystones, before setting off to the Cove for an afternoon swim. She expects it to be busy on a summer’s Sunday afternoon.
Whilst we chat, I hear her son Raife come and open the door of the car. He’s brought newspapers. The 10-year-old has been busy scanning the Sunday papers for mentions or articles about his mum, the book or even himself.
The kids are young but the older ones are switched on to what is happening. Ruth tells us that Raife is indignant of the idea that he could be played by anyone other than himself in the film adaptation of I Found My Tribe.
Ruth “throws myself in” to the Cove in Greystones a couple of times a day during the summer. In winter, it might be just the once. It’s busy right now. “You nearly have to elbow your way past all the teenagers down there to get in,” she says. Something tells us she manages to do that with glee.
She’s no stranger to taking a dip closer to home too, at Annagassan or Salterstown.
Ruth never intended to write a book or a film about her and her family’s story. I Found My Tribe stemmed from an article published in The Irish Times in January of last year. It was so well received, the offers were quick to arrive. Soon enough, she was getting to work penning a six-chapter sample for publishers.
“I had my journal where I wrote down all my miserable feelings down in between school runs. It was just for myself, dealing with stuff since Simon was diagnosed. Reading back through old entries, I pieced together some things that I said and it was a love letter to swimming. It was for a friend who had a neurological diagnosis. I sent it to my husband. And he said I had to send it to Roisin (Ingle).”
Ruth admits that writing for her was something always on the backburner. She previously started a fiction piece and a children’s book too. They may see the light of day.
“It was cool that people reacted so well to it. That gives you confidence. That would have been my problem.”
The summer of 2017 has been hectic. Simon has already seen a book of his make the big screen jump – My Name Is Emily, starring local actress Evanna Lynch. Released in 2015, Simon also directed it – all while having MND. The press tour isn’t something Ruth is completely new to, but now the focus is on her.
“Our lives are pretty strange anyway but in the last few weeks, they’ve reached peaks of strangeness we’ve never seen before. It’s quite surreal,” she tells us.
The last month has seen Ruth on her very own press junket. Previously having worked at places like Today FM, she was aware to a degree how it all worked. But now she was the one in front of the mic – and the camera. On a recent trip to the UK, Ruth was a woman in demand, even participating in a photoshoot for today’s Observer newspaper.
“Arriving at an airport and someone is there with a sign with your name on it – what?” she remarks. It’s all new to her. “You just come from a house with five kids screaming at you for their breakfast – it wouldn’t be my usual day to day.”
“When Simon wrote his book and did his movie, it sort of catapulted us into that arena. I was doing all this media stuff with Simon. That was stressful. Now that, I’m doing it by myself, it’s a different thing. I’m skipping in. It’s a change from the day every day home life. It’s kind of fun.”
A very busy woman, if she’s near the sea she never fails to find time for her friends and swimming. It’s her tribe.