‘I know I can be brave’: Ruth Fitzmaurice on her husbands motor neurone disease and finding salvation in the sea

By Ruth Fitzmaurice

Ruth by the sea near her home on the east coast of Ireland
Ruth by the sea near her home on the east coast of Ireland

My husband is a wonder to me but is hard to find. I search for him in our home. 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. His darting eyes are the only windows left.


This little house of ours holds a lot. A family of five young children, a father who can only move his eyes, a mass of medical equipment that hums and squeaks. The footfall in this house is high. Nurses and carers steer tactfully around us. Lint balls gather in corners. My husband needs a ventilator to breathe and a person to stay with him at all times. Often that person is me.


Motor neurone disease is a tough thing for a child to say. They call it ‘meuron’ disease instead. ‘Will Dadda ever move again?’ they ask matter-of-factly. ‘No, he will never ever move again,’ I reply, and that’s the truth. ‘Aw, really? He’s still a good Dadda even though he can’t move,’ they shrug.


‘He is my own secret doll Dadda,’ sings toddler Sadie, mid-semi-pirouette. She climbs up on the bed beside Simon to croon sweet nothings and secrets into his ear. ‘Can I watch Care Bears on your TV, Dadda?’ she whispers. Will he say yes? Make a wish, keep your eyes closed. ‘Yes,’ says the computer voice. ‘He said yes!’ she shouts in endless surprise. ‘He’s such a good Dadda,’ she laughs, twirling his fringe through her fingertips.


Ruth with her husband Simon and their children (clockwise from left) Arden, seven, Raife, nine, Jack, 11, and twins Hunter and Sadie, four
Ruth with her husband Simon and their children (clockwise from left) Arden, seven, Raife, nine, Jack, 11, and twins Hunter and Sadie, four

‘Will I ever get meuron disease?’ asks Raife with a twisty face. ‘No, you will never ever get meuron disease,’ I reply. He walks around for a week with a limp and I get called into school. I find him in the sick bay with a worried face.


‘Hey guess what?’ I cry. ‘The doctors and scientists did some tests on Dadda’s blood and do you know what they said? None of us will ever get meuron disease, they promised.’


‘Is that true?’ I nod firmly.


‘My foot feels a lot better,’ he says.


‘Let’s run on the beach,’ I suggest.


Arden doesn’t say a word. He places a framed photo by his bed of his Dadda cuddling him when he was a year old. Rings of rolled fat reach up to his dad’s face and he is laughing.


They don’t like it when their dad leaves the house. The noisy air mattress is laid bare and there’s a big empty wheelchair space. ‘Where’s Dadda?’ whines Hunter when Simon and the nurses are gone. I want to whirl around in my underwear and leave the bathroom door open once the house is all ours again, but the kids freak out. ‘I…miss…my…Dadda,’ wails Hunter between tearful gulps.


Some days the truth slaps hard. Most days I wake with a gasp. Who is this man in my house who can’t move? Where is my Simon who pinches my waist with a cheeky smile?


My children are truth detectives and some days I can’t keep up. On these days the air is gloomy. The sky is a heavy grey jumper with no air holes. I feel like I haven’t slept when I have. My limbs are so weary I could lie down on the ground and let the leaves cover me. I am married to a bearded stranger with intense eyes. The children deserve better than a mother who feels like this.


‘Come in here and meet my Dadda,’ says Raife to his schoolmate with a shifty grin. ‘He has meuron disease and a computer voice and he can’t move. It’s OK, come and say hello, I dare you.’ Raife is having fun with a glint in his eye. This is pure entrapment. He just wants to gauge his friend’s reaction. When meeting Simon most kids have eyes like saucers. Some are curious and ask questions; others run from the room yelling that it’s too weird. ‘It’s just my Dadda,’ says Raife with a shrug. I want to protect him but the joke is that he is protecting me. Through five pairs of eyes I see that Dadda is just Dadda. Things are what they are.


On the bookcase in Ruth's home is a picture her son Arden as a baby with his ‘Dadda’ 
On the bookcase in Ruth’s home is a picture her son Arden as a baby with his ‘Dadda’

When we moved back to Greystones on the east coast of Ireland to be closer to family and friends for support, our marital bed became a hospital contraption.


It had multiple tilts and reclining functions. We are mid-30s living like 80-year-olds with a bed built for easy TV watching. I lie on my well-padded mattress at a moderate tilt with restless pulsing limbs. Motors hum like machine guns all around me. Television sounds seep into my dreams. This bedroom is a sensory assault of sound, light and equipment. Benedict the night nurse is slapping cream on to Simon repeatedly and I can smell it. He massages his limbs and it feels like a small earthquake.


I take to sitting in cars for a little peace. Hunter sleeps in his car seat holding a naked plastic baby. Sadie is snoring. I wish I could sleep and wake up renewed, but I never do. I would love to sleep for a month, be on my own for a month, leave and live in isolation to think and drink tea, hear the clock tick and rest my limbs on a quiet bed. All I have are the bleary warm moments in cars and it’s never enough to feel restored.


Our marital bed is damaging my soul. For months I wander the house at night, I pass out on couches and crawl in beside kids like some kind of bed gypsy. I have claimed the spare bottom bunk in the boys’ bedroom. They are giddy with excitement. ‘We like having you here, Momma,’ they giggle with camping-adventure delight. I fall asleep to the sweet lullaby of warm, rapid boy-breaths.


My ears are at peace but my head is too busy to sleep deeply. I did my very best, but a deep bond has been broken. Simon sleeps alone with a baby monitor and a nurse listening in. I love him; but now I just look at him from far away. The silence is deafening. My heart falls into my stomach repeatedly. Our marital bed is gone. I sleep fitfully.


I have thought about murdering my husband and I’ve accepted these feelings as completely natural. But I could never actually kill him. His suffering is great but he has no desire to die. There is no guilt; the murderous thoughts only mean I truly love him. There are moments when tears flood his face into a frozen grimace and his eyes are wild and wretched with agony. When empathy pulls you into his unscuffed shoes for a mere five seconds, even a heart of stone would be moved to end this much suffering.


Who is this man who can’t move? Where is my Simon with his cheeky smile?

Every time love takes me here, I am pulled up short by our children. They dote on him, seek him out and put their hands on him. His face glows like a lantern, his eyes gleam and, although there is so little movement left, you know he is at peace. Sadie pats his face. Hunter grins at him. Jack burrows for cuddles. Raife talks his talk, and Arden leans nearby in true cowboy style.


I plonk the kids in front of the TV with our carer and sneak out to the cove. The tide is perfect. I leave a small pile of clothes on the rocks. My mind relaxes as soon as I smell the air and my feet touch rock. Cold sea can blow those flies away in one swoosh! Three dives later I know that real magic is here. The stones hold secrets and the dread in my heart flows free. It is so solitary and dream-like I wonder if it is real. Twenty minutes later I am home.


My friend Marian announces that the harvest moon is on 16 September. I chuckle in disbelief. ‘Simon and I got married on 16 September. It’s our wedding anniversary.’ There is dumbfounded silence. Then screams. I make breathless calls to the other ladies of our group, nicknamed the Tragic Wives Swimming Club. Rise up, ladies. The full-moon swim is on.


In the week prior to 16 September the moon teases us with an increasingly curvy shape. The 14th is the anniversary of Galen’s motorbike accident, which has left him in a wheelchair. Friends gather that morning at the harbour with him to swim again. This year his wife Michelle gets in the water, too. Galen slips into the sea and rolls on to his back with outstretched arms. I watch him survey an expanse of sky and his mouth opens wide with laughter. His face has floated right up out of pain’s reach.


Ruth and her Tragic Wives Swimming Club
Ruth and her Tragic Wives Swimming Club

There is a lump in my throat as I watch them swim together. I tread water because I want to stay in the sea as long as Galen does. Stubbornness almost freezes me because he doesn’t want to get out. This amphibian nutter will turn me into a blue-lipped Smurf. I don’t believe we are just numbing ourselves in this sea. I look at my friends coping and surviving. Like the rolling of waves, the thrill of the dive, the rush of cold, they choose to stay unchained. This is as free as we can possibly get.


Swims like this clean the cobwebs from my mind, like clearing the laundry basket with a good run of washes.


I am a woman restored.


This is as free as we can possibly get. I needed this moon swim to save myself


‘Happy Anniversary,’ I say to Simon with my usual morning kiss on his forehead. ‘Can you sit with the kids tonight while the girls and I go for a naked full-moon swim?’ We have run ourselves ragged together for so long. Now I need this moon swim to save myself. The smile in his eyes gives me hope he understands that. I’m still not sure; he might just be enjoying my gift of a mental image composed of all-girl nakedness.


I hum around the house all day, dreaming of full moons. I can taste the thrill of shy bodies standing naked over a dark sea. Our birth scars, broken veins and secret wobbly bits will bask in moonlight. We can defy our brains and dive deep with hammering hearts. The moment feet find water, bodies will work against worried brains. We’ll leap and mainline right into the pulse of nature. There is so much fear around illness, and this is the opposite of that. I am terrified.


We climb down rocks to a small inlet. Huddled together on our secret beach, wrapped in blankets, we watch the moon rise. It is large and pure orange. Marian, Aifric, Michelle and I cuddle together like a wolf pack with the wild urge to howl. It is utterly beautiful and I feel total love for these women. Sharing this view with my Tragic Wives feels mightily un-tragic.


The moon rises high and darkness falls. ‘Look at the moon-path on the water,’ whispers Michelle. ‘I want to swim in it.’ She has a crazed look in her eye; if she follows that moon-path she might never come back.


The Tragic Wives Swimming Club gets some new members for the night. Alison takes photos. Helen hands out towels. Margie is here for the full swim. Marian has never swum from the steps before and is determined this will be her first time. A fully female energy is harnessed on those rocks as we drop our towels. The water looks like black velvet and is teasingly rough. Waves slap up and hit the rusty step railings. The cold and the moon have silenced us to startled gasps as we plunge, dive and swim in circles.


We race to the warmth of the pub afterwards for chats and hot whiskeys. I look around the table at this awesome group of women I now count as friends. They are brave and honest and we give nothing but love to each other. It is a powerful find of belonging to feel steeped in your own tribe. One-to-one friendship is wonderful, but tonight we weave together as a group. It is a night full of real joy and laughter. I feel more content than I can remember in a long time – or else the whiskey has gone straight to my head.


I know I can be brave as long as the waves keep pounding. That’s just what waves do. I hope Simon and I can be kind to one another. The landscape may change, but it is always surprising and beautiful.


This is a great love, after all, and that’s just what love does, too.


This is an edited extract from I Found My Tribe by Ruth Fitzmaurice, to be published by Chatto & Windus on Thursday, price £14.99. To pre-order a copy for £11.24 (a 25 per cent discount) until 16 July, visit you-bookshop.co.uk or call 0844 571 0640; p&p is free on orders over £15. 


 Photographs: Alison Mckenny, Marc Atkins