'A small piece of strength' stolen from motor neurone disease sufferer every day

Motor neurone disease (MND) is like a shadowy, unwelcome guest, who has arrived at her family home and refuses to leave, says Ruth Fitzmaurice.

'A small piece of strength' stolen from motor neurone disease sufferer every day

Since her husband Simon was diagnosed with the disease in 2008 — he was given just a few years to live — it has progressively attacked his body. Simon, a filmmaker, made his first feature, My Name is Emily, despite no longer being able to move or speak.

A documentary based on his book, It’s Not Yet Dark, is narrated by actor Colin Farrell.

Simon is not the only artist in the family. In her new memoir, I Found My Tribe, Ruth writes about MND and the impact it has had on her family and life. There are raw, emotional truths on every page, and joyous moments.

In the book, she describes MND as: “A tiny nerve-ending, and a small piece of strength, getting stolen from Simon every day.”

Writing it was difficult, but also cathartic.

“It’s a really gradual thing. You’re grieving the loss of things. He loses a function and then it plateaus for a while. When it plateaus, you grieve the loss of what’s happened, and then you move on, get used to a new reality. It’s shifting all the time, changing.

"When I originally started writing the book, it wasn’t really about the chronology of time. It was more chapters based around feelings.

“When I was structuring it first, I was kind of planning it around the five stages of grief; that format, because you do go through those stages.”

The book began as a journal. “What happened was, as a form of my therapy, to be perfectly honest, I had a book, a journal, in my bag. I’d date the top of the page, sitting in cars in between school runs and stuff like that, and just scribble down, pour out, feelings, how I felt at that particular time.”

She would have been “mortified” at the idea that anyone would have read it. But, encouraged by Simon, an essay she wrote about the redemptive power of sea-swimming was published in the Irish Times last year, and rapidly went viral.

Within days, she was inundated with offers from agents and publishers. A feature film, from Irish production company, Element Pictures, is also in the works, and Ruth has written the first treatment, in advance of the screenplay.

“When it came to writing the book, I was really glad that I had all that stuff there on hand. Because I didn’t want to write a book that’s… Even retrospectively, it’s so easy to get maudlin about emotions.

“I wanted to really access how I felt at those particular times. For me, that felt really true then. I could build the chapters around that.

“I hope that it gives it that rawness, that it wasn’t written with any agenda, just to access that feeling, to be true to how it felt at the time.”

For Ruth, who lives in Greystones with Simon and their five children, showing her book to her husband, who told her while reading it that “it’s fucking mental being stuck

inside your head”, was daunting.

“I was really nervous about him reading it. Men and women think in different ways, and, for me, I had to explain. He had to read a lot of hard things that I’d said or thought. He got so far with it and then he had to stop. I nervously went away and chewed my fingers for a while. It was a couple of months before he went back to it.

“I said: ‘Look, Simon, there’s nothing but love in that book, in all its forms. Everything comes from love.’ I didn’t know if he didn’t like it, what I was going to do. But, luckily, by the end of it, he said: ‘I get it. It’s beautiful. Well done.’ ”

There’s a purity to Ruth’s writing, and a universality that will strike a chord with anyone who has lost or cared for a loved-one.

But it’s about two families, the other being ‘The Tragic Wives’ Swimming Club’, a group of friends she swims with at Women’s Cove, day after day, regardless of the weather.

She smiles at me incredulously when I ask if they wear wetsuits on the Irish Sea’s coldest days.

“Swimsuits all the way! You don’t get a kick out of it in a wetsuit.”

The swimming club came about through friendship. Her friend Michelle and her husband, Galen, were avid sea swimmers until Galen became paralysed following a cycling accident. For a year afterwards, Michelle could not go back to the water.

“It was something they shared and she couldn’t go back to it. We go down there every day and it just became a lovely friendship space.

“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.

“No matter how shit your day is, basically, you know you can reset it. That’s a real comfort.”

In the book, Ruth also writes movingly about having more children, twins, after Simon was diagnosed. She is often asked about it, she says,

adding that anyone who knows her was unsurprised.

“In my mind, that makes perfect sense. Simon had been in ICU for four months with no windows, and it was all death, you know, all of that. It was a celebration of him being home, of continuing as a family. Let’s make a baby! That’s my answer to all of that stuff; bring on the chaos, really.

“When your home is medicalised, when there’s a sort of functionality, systems that come into it from having nurses there, my response to that is always: throw a puppy into the mix. It’s just about keeping it real for me. It was my way of coping, having another baby. I just didn’t count on there being two of them!

“But the minute they came along, it was an unsaid thing, but it gave everyone a lift. And it felt like, to be a total hippie about it, the universe was saying: ‘Yep, you’re on the right path there’. They were a blessing, and a distraction from what was going on, the worry of Simon being sick. They brought joy; they still do."

The West Cork Literary Festival, which takes place from July 14 to July 21, will host a ‘Coffee and a Chat’ with Ruth Fitzmaurice on Tuesday, July 18, at 10am in Bantry House tea room.

The festival takes place in and around the town of Bantry, and other highlights include readings by Colm Tóibín, Eimear McBride, and John Boyne.

Full details here.

More in this section

Your digital cookbook

Puzzles logo

Puzzles hub

Visit our brain gym where you will find simple and cryptic crosswords, sudoku puzzles and much more. Updated at midnight every day. PS ... We would love to hear your feedback on the section right HERE.


The best food, health, entertainment and lifestyle content from the Irish Examiner, direct to your inbox.

Sign up