Ruth Fitzmaurice was living an idyllic life in County Wicklow, Ireland with her filmmaker husband Simon and their three children, when in 2004 Simon received the devastating news that he had Motor Neurone Disease, an incurable illness where the nerves in your brain and spinal cord slowly stop working leaving you unable to move. It was, as one can only imagine, a life-changing moment not just for Simon, but the family as a whole. Ruth quickly found herself having to bring up three children and hold the family together in the most traumatic of circumstances.
It was at this time that Ruth discovered the therapeutic and restorative benefits of cold water swimming. With her band of sisters, named the ‘Tragic Wives Club’ they would gather at the coves in Greystones and launch themselves into the freezing Irish sea.
‘I Found My Tribe’ is one of the year’s most uplifting books, a poetic memoir of tragedy and survival, and a call to arms for all of us to stand up and face life head on. This letter of love is set to be a best-seller and with the film rights already snapped up by the producers of the Oscar winning film ‘Room’ a movie version looks in the offing. The MALESTROM sat down with Ruth for a humbling and inspiring interview.
The MALESTROM: Ruth, how do you feel about your private life now being in the public eye?
Ruth Fitzmaurice: It’s not something I’d planned actually. My husband, Simon started it because from the time he went into hospital with respiratory failure through Motor Neurone Disease, he wrote an article for the Irish Times and began to document some of what was happening to him and our lives, and that catapulted us into the public arena in Ireland and I was very much on the back-burner, I never set out to write about myself.
TM: Are you generally quite a private person?
RF: Yeah I’m quite shy. But then with the process of the illness I started writing with my writer’s brain and it became a way of helping me cope. It was just a notepad sitting in my bag and I’d get it out in between school runs and stuff, if I was feeling a bit overwhelmed I’d take out the notebook and just pour out all the miserable s*** that I was feeling, and actually thinking I’d be horrified if I actually read this back. It was just for myself you know, I used to have panic attacks that I’d left my book somewhere and the thought of anyone reading it would give me a full body blush, so that’s how shy I was, my thoughts we purely for myself.
TM: Did writing it down help you get through the tragedy that was unfolding around you?
RF: Yeah it did, it did. At that stage it was the only release that I had… you’d feel overwhelmed and write it down and have a bit of a cry and you think you’re going to break, you think this is my breaking point and with the writing you reset yourself and move on. I’d actually been writing for years before I got into the swimming and it ended up as a love letter to swimming. It was actually Simon who wanted me to send my writing into the Irish Times and the editor printed it. It then went viral, just nuts, and suddenly agents started ringing us at home and then the book came together with all the notes in my notepad.
TM: Did the book come together quickly then?
RF: Yes, because I had all this raw emotional stuff that I’d written down already and little windows into exactly how I felt at a particular time… and then when people tell you that they like what they read, it’s a huge confidence boost, so it was enjoyable to get it out there and because it was my private life written in a very therapeutic way, it felt good to share it.
TM: You were happily married with two children and pregnant with your third when Simon’s foot suddenly went floppy. Were you aware immediately of what was happening to him or was it all a slow transition?
RF: When at first his foot went floppy it was very much in the background of our lives, we had two young kids and he was busy with his film. His short film had just been accepted into the Sundance Festival and he was all excited that that was his moment, the moment where his career was going to take off, so we were quite dismissive, and to get a diagnosis of Motor Neurone Disease takes about six months of testing… then that was the starting point of the shock that my husband has MND, that’s when it hit home.
“My husband is a wonder to me but he is hard to find. He breathes through a pipe in his throat. He feels everything but cannot move a muscle. I lie on his chest counting mechanical breaths. I hold his hand but he doesn’t hold back.”
TM: How did you first get introduced to wild water swimming?
RF: Like most things in my life I fell upon it by accident. We live in Greystones in County Wicklow in Ireland, which is a seaside town anyway, but I never took any notice of the sea. Our friends Michelle and Galen, they were regular sea swimmers and they’d often drop by the house dripping wet, being quite alternative and saying, ’Oh we had a swim, it was amazing, you should join us.’ But we never listened to them and didn’t take to it. Then in September 2014 we went down to the sea to watch Galen get carried into the water, because the previous year he’d been cycling his bike on a dual carriageway and went into the back of a lorry and it left him a paraplegic, and it was a high injury, around his T4, so he’s only got a third of his lung capacity too and that September 2014 was the first year of the accident and he wanted to get back into the water. So his friends all congregated on the seashore and carried him back into the water and he swam just using his arms, in fact it was such a revelation that he swam all the way round the headland and it was just one of those things you never forget… amazing, inspiring.
“Galen is swimming out to sea for a reason. He is swimming quite simply to save his soul. When tragedy hits, you need saving. You search for moments to save yourself. I have saved myself so many times… I’m exhausted.”
TM: Wow, what affect did that swim have on him?
RF: He got into the water, paddling with just him arms and he lay back and just looked up to the sky and his whole face just relaxed, it was like pure happiness you know. Then I decided to go in and I was petrified because it was so cold, choppy and windy, but I got in and really enjoyed it. I was with another friend of mine Aifric and we saw Michelle, Galen’s wife just standing there on the shore with their young baby and she just looked so sad, really upset and sad, so we decided we had to get her back in the water. The next week Aifric and I invited her back to the coast for a swim and the three of us got into the freezing sea together and we just loved it, it was a huge success and we said, ‘let’s do that again’.
TM: That must have had a big affect on you?
RF: Huge, but it’s still like groundhog day every time I go. Every time I’m petrified before I get into the water and the shock of the cold water kind of resets your brain… and the voices in your head, the negative ones about what your going through, it numbs them, shuts them up, it clears your head and we have this saying amongst us, ‘You might not like the person who goes into the sea, but you’ll always like the person who comes back out’, and that just about sums it up, how it makes you feel. It’s that mental process you go through. You’re bypassing your brain, you’re telling your brain to shut up, your brain is saying don’t do this and you’re doing it anyway, it’s a mental hurdle that you get over, a sense of achievement and when you get out you think, ‘Hey, I did that today’! And you feel really good’.
TM: When you came out, did you feel more able to cope with what was happening at home with Simon and your children?
RF: Yes, totally. It’s a little window in the day, an escape and even if its winter and its really freezing, its the one thing in the day that you always have, no matter how bad your day goes, you always have the swim to look forward to. Some days it’s the three of us who go swimming, which we jokingly labelled ourselves, ‘The Tragic Wives’ Swimming Club.’ And other days it’s just me by myself. Some days when I’d be feeling overwhelmed I’d just go down by myself and have a quick dip and come out and feel good again. When you know you’re doing it for your own good its addictive.
“Some days the truth slaps hard. Most days I wake up with a gasp. Who am I? What place is this and how did I get here? Who is this man in my house that can’t move? Where is my Simon who pinches my waist with a cheeky smile?”
TM: When you do go swimming, is everything still on your mind, or does it let you forget about it all for that short moment?
RF: Well, the place I go to has become this magic spot for me, a place of solace. My home is a really busy home, there’s nurses on 12 hour rotors in and out looking after my husband, and Greystones is my own little place by the sea, even my daughter says, ‘hello sea’. Its my place, the brain just relaxes when I’m there, even if I just go down and paddle, the whole place itself has that affect on me.
TM: That’s really quite special. You probably won’t say, but what do you talk about when you’re out there swimming at sea?
RF: Sometimes we laugh, sometime we cry, sometimes we cry together and have a group hug out there at sea. We feel free, the sea refreshes us, it’s a safe space out there to say whatever the hell you want and yes, you’re right – I’m not going to tell you what we say (laughs).
“Cold water hits you like a head-slam. Don’t fight the cold. Let go and let it seep in. But it’s so cold! Keep treading water. This too will pass. Ten seconds later you don’t feel the sting. Ten seconds later is pure freedom.”
TM: Were you always a strong person?
RF: Ha, ha, I don’t know. I’ve always thought of myself as a ninny, I never think of myself as a strong person, but I know I am an adaptable person. Some people say, ‘you’re so brave’, but I never feel brave. I’ve just had to adapt to circumstances, I’ve got young kids, they’ve got to be fed and you’ve just got to get up and get on with the day and most people who are considered strong and brave, they’re doing what they’re doing because they have to cope, you have to find a way.
TM: Did you ever feel at anytime that you wouldn’t be able to cope?
RF: Oh yeah, all time! Overwhelmed! And with Motor Neurone Disease, it’s a gradual loss that happening over time, and then it plateaus and then it gets worse again, so you’re in this constant mode of sifting sands. It gets you used to one reality and then it shifts again and at each stage there’s a loss of functions, voice, eating, breathing you know, and at each one you think this is it, this is the one that’s going break me now. So you do hold yourself in the moment, you stop thinking ahead, you just stay where you are and hold on, then you cry and think you’re going to break, and each time you don’t break you’re pleasantly surprised and you realise you’re stronger than you thought you were, that then gives you the confidence to carry on. I know now that it would take a lot to break me.
“Fold that wheelchair up and throw it into the boot. Heave Simon into the front seat on a plank of wood and let’s drive. We have the freedom to go anywhere we please.”
TM: Do you ever feel anger or rage?
RF: The anger yes, but very much at the beginning. I can tell you I’ve kicked a few cars in my time and banged plenty of pots in the kitchen, but that was in the early stages of the grief, the loss, there’s a lot of angry stuff, but that was in the past. You learn to exist and swimming probably sorted all of that out for me. Ironically I don’t wish for a different life because, out of all this pain, amazing things have happened to me.
TM: That’s interesting? You don’t wish for another life?
RF: No, no I don’t and although I could never have predicted how things would have gone, some of the best things in my life have come out of some of the worst and most horrendous situations that have happened. Any feelings of, ‘why me? or ‘it’s not fair’! disappeared a long time ago. There’s always happiness to be found.
TM: That’s very inspiring!
RF: Well, I kind of learned it over time.
TM: You mentioned in the book that you pondered over whether it was better to lose someone slowly, or to lose someone suddenly?
RF: Hmmm, well the jury is still out on that one because for Michelle, her life just changed overnight when Galen became paraplegic, and for us with Simon and Motor Neurone Disease – it is a very slow decline, so which is worse? Hmm, I still don’t know.
TM: What about your children, growing up in a situation like this, there must be so many hopes and fears?
RF: Yeah, yeah, yeah, sooooo many hopes and fears for them, and their existence is different to a lot of peoples and I am aware of that…
“Come in and meet my Dadda”, says Raife to his school mate with a shifty grin. “He has Meurone disease and a computer voice and he can’t move. It’s ok! Come in and say hello.”
… and their reality is very different from a lot of other peoples and my hope is that all of this will make them more sensitive people, with more empathy for other people, that’s my aspiration for them.
TM: That says a hell of a lot about you and the journey you’ve been on. Have they come to terms with the situation their father’s in now?
RF: They have but it changes. I’ve learnt a lot off their attitudes, the joy and the way they laugh and their little witticisms of the way they see things and I love it. At different ages it changes for them, the twins are now five and they watch dad and realise that he can’t do things and they make sense of that, although that’s slightly heart breaking to see, but they’re so matter of fact about it. And the older ones I feel like you have to have a certain amount of honesty with them, they’re too wise to just jolly along, but they know they’re dad lives with nurses and that their dad is safe. I say to them dad is okay for now, he’s not going to die, but if things are going to change I’ll let you know, so just park that worry for now, and they accept that. I wouldn’t claim to have any answers about it, I’m just learning as I go, but the thing I worry about most is how they’re coping, rather than myself.
TM: It’s certainly an incredible journey you’ve been on and the sea is a big part of that?
RF: Vital. Absolutely vital. It totally saved me and as I said in the book, it saved my soul. Even my daughter will say to me on a bad day, ‘You need a swim mama’. And its true, if I don’t get one, I get irritable.
TM: What does a bad day entail?
RF: It can be a million things. Sometimes you can get blindsided by the things you don’t expect, our dog dying was particularly bad. But it can be the smallest of things. It can be something to do with Simon or something else quite small triggers it again.
“Lost shoes are a permanent problem in our home. ‘It’s gone! It’s GONE!’ wails Raife, running around the house. He limps into the kitchen with a single secure sock and one sorry-looking exposed sock. My children are wildly dramatic about missing footwear. Shoes are not misplaced. They are gone for ever.”
TM: If there was another woman going through a similar situation to yours, would you have any words for her?
RF: The last thing I want to do would be give advice, I’d probably hug them. I think there’s a recognition with people who are in pain, they gravitate towards each other whether its similar to mine or not, its just pain, it doesn’t have to be identical. It’s like an ‘unsaid nod’, I can feel what you’re going through. A lot of people down that cove when we go swimming have a lot of pain in their lives, and they’re using swimming for a lot of the reason for what I’m using it for, so I don’t think you need to give advice, its just a case of sharing company. Like my friend Michelle whose husband Galen is paraplegic, we understand what each other is going through without words – its actually a gift having a friend like that.
TM: Do you think you’ve got through the worst and you’re now more able to cope more?
RF: I don’t want to say ‘yes’ because I don’t know what’s round the corner. I never look too far ahead and I really do just take one day at a time, you never know. The future hasn’t happened yet so there’s no use worrying about it. I could never have predicted all the good things and all the bad things that have happened to me, so what’s the point in worrying about the future.
TM: Who came up with the title, ‘The Tragic Wives’ Swimming Club’?
RF: You know it was a joke actually, it was said in jest, (smiling) it was us laughing at ourselves and now everyone calls us that. Michelle’s son jokes that we should get swimming hats with the word, ’tragic’ on the side (laughing), I really like that!
TM: It sounds like a magical moment?
RF: Yeah, we were laughing but that’s our way of coping. We just stood on the shore, freezing cold, laughing at ourselves, the ‘Tragic Wives Swimming Club’ (laughing) that’s us!