I Found My Tribe: A Memoir

Heart

The Sea

Three-year-old Sadie says that Dadda talks with his eyes. An eye gaze computer sounds less romantic. I’ll ask his eyes she says when she wants something. He loves me! she exclaims like a surprise present. Love like a present is the gift we share from him. I hold it fiercely. His magnificent heart.

My husband is a wonder to me but he 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. I won’t stop searching. My soul demands it and so does his. Simon has motor neurone disease, but that’s not the dilemma, at least not today. Be brave.

I am sitting in my car in Wicklow town, looking out on the harbour. I’m watching these yacht masts dancing. Their heads are swaying to and fro, warbling along to Joni Mitchell on the radio.

Wicklow harbour is nice. It’s vast and full of blue. It has a higher, wider reach than the Greystones view. I feel as though I can’t breathe in Greystones right now, so Wicklow is good. Maybe Greystones is like all great loves. You either marvel at every familiar dancing step and soak it into your bones or, like today, the familiar edges trip you up and annoy the shit out of you. Too claustrophobic – a rat in a cage, a lift with no panic button.

Here’s the dilemma. My house is full of strangers. I have painted it bright colours and surrounded it with love, but strangers step through it at an alarming rate. Well-meaning Muhammads make tea. So many Helens and Marys and Jackies and Michaels and Deirdres and Claires and Sams and Franks and Graces smile and leave mops in weird places. I sidestep them in the hall and at the dishwasher. Our house is filled with nurses and carers and they are hurting me. It’s not their fault.

Some stay a while, but most are passing through. Some stay longer. I grow to love them and then they break my heart and leave anyway. It’s nobody’s fault. This is agency work. Some wear overbearing perfume. It attacks olfactory emotions I didn’t even know I had. I feel irrational hatred towards them because they make my house smell like them. Most of them smoke but I don’t mind the smell of that. At least it’s a universal smell, like fire or Fairy Liquid or Persil Automatic or petrol. A lot of them try and turn our home into a hospital, and I fight like a tiger against that and bare pointy teeth.

They all leave eventually, except for Marian. Marian believes in angels and blood moons. She lives purely through her emotions, and a good day always starts with this night nurse. We drink tea together on dark mornings. I wish I believed in angels. Marian believes everything happens for a reason and that people have colours and swirling energy around them, positive or negative.

If you hang out with her for long enough, you could be laughing or crying or both and you can almost see a faint outline on the walls of angel wings in the shadows. She is, of course, my angel. ‘I’m not going anywhere,’ she said to me once. ‘I’m here for you.’ I look into her eyes and I believe her.

There was a blood moon last night and the sea is agitated. My soul is agitated. The full moon gets a red glow during a lunar eclipse, says Marian, so watch out. Blood moons belong to moongazers, dreamers and to Marian. For them, the night sky is a realm of intense feeling and romance. I’d never heard of such things, so I lean in closer. We are up to eighty per cent water, Marian says, and that is why the moon and the tides affect us. That is why I jump in the sea, I say. I am trying to find a home, make a home, be a home for my five children. Sometimes I succeed and sometimes I fail.

Some people understand that the small things make a difference. A nice pen to write with that slides perfectly on the page. Hot coffee in a particular cup. These things matter when your soul is on the edge. It fills you full of holes, this life. My search for Simon is a lonely pursuit. I hope he looks for me too. Great love has brought me to the sea and I am trying to be brave. It’s important, when your soul just might need saving.

We have lost many things. But sometimes I find my husband: lips on the curve of his temple, a crawl space in the crook of his arm. Some things are lost and found again. I email him words of love, and he emails back. A mad moon tidal wave. Screen to screen, we’re holding hands at last. Two souls. It’s a marvellous, familiar dance. Great loves are for the brave.

My Cove

I have to tell you a secret. This is my cove. No really, it’s actually mine. So says an old lady who rolls up on a flowery purple pushbike one day. We are standing in swimming hats, my friends and I. Three women at Ladies’ Cove, the steps that lead into the sea at Greystones, Co. Wicklow. We are standing, turning slightly blue on a sunny April day. The air is warm but those in the secret all-year swim club know that the sun is deceptive. The sea is bloody freezing at this time of year. Colder than Christmas.

We are trying to be brave. It’s my cove, says the old lady, as she hitches a foot to the ground, leaning her purple bike into a chat. We don’t want to chat, we want to dive, but she isn’t going anywhere. She is lonely and wants to talk to us and that’s that. I aspire to be this old lady some day. I would feel lucky to grow old like her, on her flowery bike, wind in her hair, stopping to chat when she feels like it and when she needs it. Some old ladies are great like that. I aspire to be her because, obviously, it’s not her cove at all. It’s mine.

I collect stones on the beach. My favourites are the grey ones full of holes. The sea made these holes; each one is different and beautiful. I rattle them home in my pocket and arrange them on windowsills.

My swimming friend has a cousin who is one of those calm people who are healing to be around. A cup of tea with her in summer garden sunshine reveals to me that I am not a calm person. I yearn for her serenity. We were talking about a first-world problem, maybe a universal problem: the dilemma of where to live.

We have love in the nucleus of our family, but where do you put roots down with that love? An affordable bigger house in the countryside, or a commutable distant town? Or stay where you know people, in a smaller house bursting at the seams? My friend’s calm cousin cuts through the bullshit. ‘Find your tribe,’ she says. Finding your people is more important than what kind of house you live in. Decide whether you’ve found your tribe and go from there. I believe her.

The cove is my tribe and the cove is mine. My babies stand with soggy shoes on the shore, skidding on wet stones and cheer as their Momma plunges to her salvation. Yes, this is my cove and the sea is my salvation. It shocks my body back to life, as rain darts on the sea surface on a misty, romantic day.

On other days I need to weep. When your body breaks down in a parked car, it is embarrassing. A man walked by on the footpath at the precise moment my face crumbled, and I turned away sharply. Oh, the shame. The horror that someone should witness this pain in the safe routine of the school run.

On this day I can’t escape the feeling of being in a ransacked house full of strangers. I cry for all the things we have lost, my husband and I. I thought of stepping out of the car in the rain. Step out and walk in the rain to the sea, to the steps down to the cove. To just step into the waters and struggle in my winter jacket and not come back up.

I could never do that because of the five snoring beauties at home. My five beautiful children. Jack, age ten, still has cheeks like velvet. Eight-year-old Raife looks uncannily like his father. At seven, Arden is a whirlwind spinning his own way. There is nothing final about four-year-old twins. Hunter’s green eyes startle me daily. The sweep of Sadie’s curls are the closest I’ve come to a God.

Some people took over our cove one day, a group of tourists who announced they were jumping in with their clothes on. I stared at this lady in horror, with her big winter coat, and remembered I had thought of jumping in myself not so long ago. But this was no tragic, Virginia Woolf, stones-in-her-pockets endeavour. They were whooping and laughing.

‘Are they drunk?’ I muttered to my swimming friend.

‘No, I think they’re just American,’ she said honestly, and we both got a fit of the giggles. They rolled up like happy doughnuts from the YMCA. A religious cleansing? I kept eyeing the American woman’s puffy winter jacket and imagined her swirling under with the seaweed. They marched in from the shore, arms raised in triumph, and emerged John-the-Baptist-style.

But on another day I stood at the edge of the sea and wept. My feet were submerged on the bottom step and I wiggled my red toenails and sobbed. My sea-swimming friend was there to hug me. The sea was choppier but my soul was calmer and refreshed and content when I climbed back up the steps. We may be eighty per cent water, Marian, I think, but my emotions are as mysterious to me as the swell of the sea. All I know is that I could never leave this place. The cove is my tribe and the sea saves me.

We all gather here at the cove: the lost, the happy, the lonely, the young. The old lady on her purple bike, a bride posing for photos in blue sparkly shoes. So many walkers and thinkers with labradoodles, poodles, bichons and pugaliers. A lady collects sea glass on the shores every morning marching in time to the beat from her earphones. A group huddles to smoke cigarettes. Toddlers laugh and chase waves. Dogs bark. Men fish. And some of us swim. In summer, teenagers squeal at the cold and make boastful jumps from high rocks. In autumn, hardy wrinkled old-timers pace their breast stroke. But most of the year it’s just me. I’m alone at my cove and it’s mine. Come join me for a visit. Dive in for a swim. Be brave. But just remember this is my cove. No really. It’s mine.

Michelle

A group of renegades gather at Greystones harbour on 14 September 2014. The new marina at the harbour is a grey pillared beast left half unfinished. A slipway slides boats straight into the water and out to sea. This group hasn’t gathered for a boat, but for a man called Galen. He has struggled into a wetsuit in cold September. Two Trojan helpers join hands to give him a king’s chair lift to the slipway and slide him in. His legs are paralysed, but a gruelling regime has made his arms super-strong. He harnesses his lower half into motion with these arms and swims like a gently swirling fish out of the mouth of the beast and way out to sea.

My local hairdresser is a girl with kind eyes. She charms me with genuine chat that chimes like a bell. I’ve sat in her salon several times now. She always laughs and greets me as the crazy lady with five children. But she doesn’t know about Simon. I worry about people. I tend not to tell them about MND, especially hairdressers. The shock might hurt them and they are holding scissors.

But my mood is bubbly today and then, magically, Simon and MND spill out. The scissors freeze in her hand and I see her take a breath. ‘You know,’ she whispers, ‘you really remind me of another lady who comes in here. Her husband crashed his bike on the N11 and he’s in a wheelchair now. Just before it happened she found out she was pregnant with their fourth child. Imagine that! The last possible moment they could have a baby. But this lady? So beautiful! Her smile! She brings the baby in here and he has this long blond hair in a clip. I thought he was a girl, he’s so pretty!’ I nod and glow with pride. Of course I know. This lady is my friend. Like a conch of whispering sea sounds you hold to your ear in wonder, her name is Michelle. She is my sea-swimming buddy.

Six years before, a long time in MND years, Simon and I had a memorable night out. The comedian Tommy Tiernan was ranting and raving onstage with pure abandon. Simon’s immobile legs meant he was wheelchair bound back then, but his upper body was still unaffected. He laughed and talked along with everyone else. He held my hand. Tommy’s euphoric eyes are wild windows into happy madness. He turned his gaze on the wheelchair section. ‘Howya. You lads in the wheelchairs,’ he growled. ‘The ANGER comin’ off ya. The POWER of it. FUCK, it’s like a car battery.’ Simon howled with laughter.

Swimming at the marina is just not allowed because of the boats, but today, we allow ourselves to be renegades. Children skip over stones, mothers sway buggies, men put out picnic blankets and packets of crisps. This is civilised law-breaking to celebrate another man who is like a car battery. We all join him in the water to wave and cheer as he swims out to sea. He makes it all the way around the headland to Ladies’ Cove. Galen is Michelle’s brave husband. It is a year to the day since his racing bike crashed on the N11.

Greystones encloses a semicircle of sea. Driving down the hill from Bray we salute it. The seafront sweeps walkers into wildness and then back into the heart of the town. Somehow, I have lived in Greystones all this time