Author Ruth Fitzmaurice: ‘Swimming is a reset button’

The Irish writer’s debut book, about her family, her husband’s illness and the boon of sea-swimming, is being made into a film

Ruth Fitzmaurice is the author of I Found My Tribe, about life with her film-maker husband Simon, who has motor neurone disease, and their five children. It is a memoir that celebrates friendship and the curative power of swimming – in all seasons – in the Irish Sea.

How did you and Simon meet?
Simon gatecrashed a party with friends – posh boys from south Dublin. He was loud and brash and I thought: what an idiot. Obviously, I changed my mind later. Next time I saw him was at a bus stop in Dublin. I was working in radio. He took my phone number but didn’t call me. A couple of days later, walking to work, I turned my head and there he was standing beside me. We felt mortified. We realised we’d been walking to work the same way for months. It was lovely. It felt mapped, meant to be.

What year was Simon diagnosed with MND? And how did you react?
When we first got the diagnosis, in 2008, I was pregnant and, being a chronic daydreamer, felt as though I had not been paying attention. It felt completely unreal – like being thrown into an alternative reality – as if you were going to wake up. My book was written in real time, teasing out all the fluctuating emotions in my head.

Simon has written his own book, It’s Not Yet Dark, about his experience. Has he read yours?
He’s reading it on the computer and finding it hard – it is so raw. He told me: ‘It’s mental being stuck in your head, Ruth. I got freaked out, had to stop reading.’ I took that as a compliment. He is enjoying it more now – I think it was just initial nerves.

Could you explain what exactly happened when Simon was put on a ventilator?
He’d gone into respiratory failure. As an MND patient, he should not have been intubated but in the drama of the moment he was whisked away to the intensive care unit. The doctor said: “This is a mistake, you must accept this is the end of the road”, but Simon refused to come off the ventilator. So then the fight was to get him out of hospital. He spent four months in the ICU... we got together a care package with Ireland’s equivalent to the NHS to get him nursing at home. If he’d stayed in hospital, his spirit would have been broken. He would not still be alive.

Have you always been a sea swimmer?
I lived in Greystones [a coastal town in County Wicklow] but was too busy with little children to notice the sea – it was something you drove by. My friend, Michelle, and her husband, Galen, were swimmers. But after Galen’s accident [he had a crash on his racing bike], I watched him, on the anniversary after it, swim round the headland using just his arms. Michelle was watching and she just looked so tragic and young. My friend Aifric and I decided to get her back swimming. But we were petrified: your brain tells you: ‘this is insane’. We said we’d take it day by day. But then we didn’t stop.

What does swimming give you?
It is a reset button: you’ll never regret a swim, you’ll always feel good coming out of that water. It becomes a craving when you are having a bad day. It is that sense of bravery too – of overcoming – because I am genuinely terrified, especially in winter. It’s a way of taking control when so much is out of your hands. And the cove is a healing place in a hippy, spiritual sense.

What’s the best advice for helping children understand life-threatening disease?
The last thing I’d give anyone, in a similar situation, would be advice. I’d be more likely to give them a hug. Something unsaid passes between you. I’ve learned more from my kids because they live in the moment. They’re more accepting and adaptable than adults are. Honesty is the big thing. Children are so perceptive, you can’t jolly them along and pretend everything is OK when it isn’t.

You’ve filled your life with children – including twins. You say you always choose ‘more’ – why?
People are confused about the twin thing: why more children? But what the hell else would we do? It was continuing our family, something we could still do. My children are being dragged up as I was myself – my parents did a wonderful job. There were six of us. That chaotic sense of family and love is what I emulated. The first weeks with the twins are a blur. Mum was amazing. I remember her running across the room when one baby was crying, tripping over a footstool and still managing to hold the bottle up so it didn’t spill – a comic pratfall that summed up our situation – this farce of crying babies, animals, lack of sleep… we wandered round like zombies in our dressing gowns.

Is it hard to be with people who complain about small things?
I try to be big about it, but sometimes when someone says: ‘We’re so stressed because we have builders in...’ you think, really? And there is that question: ‘How are things?’ You don’t know what to say.

The book is about friendship. Why is having the right “tribe” crucial?
When something like this happens, you’re drawn to other people in pain – it’s a secret society of the hurt. You can get lost in the chit-chat that prevails at the school gates. You feel alien. Michelle and I lived together  before we were married and our husbands ended up in wheelchairs. Having someone who gets it – that’s a gift.

I liked what you wrote about mess, in our age of declutterers.
Chaos is happiness. Simon grew up in a loving but ordered house. I create sculptures of things at the end of counter-tops.

Tell me about Simon’s film My Name Is Emily. What a feat to have made it while having MND…
I don’t know where Simon gets his fire. He’s amazing. As much as I love him, I didn’t think he could do it. But he went from being the man on the bed to the director on the film set every day from dawn to dusk. The film is about a girl’s road trip – she is played by Evanna Lynch – in a lovely yellow Renault 4 to get her father out of a mental health institution.

Watch a trailer for My Name Is Emily.

Are you writing something new?
I’m working on a film script for the book. Element, the Irish company who made the Oscar-nominated Room, bought the rights. My son Raife is hilariously indignant because he doesn’t want an actor playing him. He wants to play himself.

What has your life taught you?
So many cliches make perfect sense, such as “ride the wave”. I’d go so far as to say I’m glad things turned out the way they have. I fell in love. I got married. We had two children. I was content in myself, but contentment can be complacency. The situation drew me into finding a voice. I’m so glad. I wonder who I’d be were Simon not sick. When people talk about planning their lives, I can’t cope with that kind of talk. None of us knows what is going to happen next.

Ruth Fitzmaurice’s I Found My Tribe is published by Chatto & Windus (£14.99). To order a copy for £12.74 go to bookshop.theguardian.com or call 0330 333 6846. Free UK p&p over £10, online orders only. Phone orders min p&p of £1.99

Contributor

Kate Kellaway

The GuardianTramp

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