Still fully dressed, we stand clustered against the wind. Shoes get removed first, collectively. It’s our wordless signal to stop hesitating. This swim is on. Teeth hold my towel in place with a face grimace as I negotiate limbs into my flowery swimsuit. We may have walked in from the shore that first day and then swum to the steps. First-timers soon learn that diving straight in from the steps is best. My battered body gives a brief shy shiver, finding itself in a swimsuit in September, but it’s short lived. We go out in pairs so there’s always someone with the entourage. Michelle and Casper swim both times.
In the depths of winter, a rubber hat is our only concession to the cold. I like to freeze my feet walking on cold stones before the plunge. People pay money to walk over pebbles in fancy health spas. Hobbling over sharp rocks towards the steps, I can see why. Call me masochistic but this feels amazing. I will learn these pre-swim rituals but there is no getting used to this. I stand on those steps every time with raw fear. Your brain screams NO! It’s the first time every time. To dive you need to turn your brain off. Shut up, brain. Steer past your brain because something else is steering you. What the fuck am I doing? This makes no sense. That’s why it makes perfect sense. JUST DIVE.
Cold water hits you with 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 shall pass. Ten seconds later you don’t feel the sting. Ten seconds later is pure freedom. Wind hits the sea surface and scatters salt spray on your face. Icy waves push and pull at bodies so relentlessly, they take your breath away. Seawater seeps into shocked mouths. They gag with a metallic salty aftertaste.
We climb out of the water back up the steps with numb, pink bodies. Hands grab the rusty railing to avoid a slip. Talking, talking, we just can’t stop talking and laughing. We are kings of the world. Bonded by sea, we’re laughing and sharing this feeling. Better than sex? Don’t delude yourself, it’s not better than all of it.
Why isn’t everyone doing this? People stroll past on the footpath overhead. Down the path a few steps and you are drinking in rock and sea and salt and wild. Hey you with your dog and headphones! Switch off your brain! Join us! Dive in! We could happily become the worst kind of swimming evangelists. Let’s change the world one dive at a time.
The shivering swimmers shine like diamonds. My lips have gone blue. Michelle’s face looks wide open. She’s walking taller. Aifric looks mostly astonished.
Dog-walkers greet Michelle by the shore. ‘How’s Galen?’ they gasp with pity in their eyes and squeeze her salty sea arm. ‘You’re just great. You’re both great. I don’t know how you do it. You’re so brave ’.
‘Jesus, Michelle,’ I mutter, ‘we’re like the Tragic Wives’ Club.’
‘So what the hell is Aifric doing here?’ says Michelle and we let rip a wild collective cackle.
Aifric has no business being in a Tragic Wives’ Club. Her husband Phil is way too healthy. He grew up with Simon and Galen in Greystones. They are all best friends. Phil sits in their collective wheelchair company often. Both Simon and Galen are blessed with full heads of hair. ‘At least we’ll never be bald like Phil,’ teases Simon one day. Bald as a tragedy just cracks them both up. It’s wheelchair guy humour. Aifric has no business being here but that’s OK. Neither do we. We can’t claim ownership. Neither do we.
Superheroes
I have decided to become a superhero. I shout it out the half-door right into the starry sky. BRING IT ON, MND! I believe in love and love conquers all. I can be a superhero for love. The Nun hears her holy calling from way up high. But I’m not stupid. All superheroes need a decent costume.
It all started in Simon’s foot. His right foot went floppy. I blamed his stiff clutch. The funky black convertible he drove way too fast with our eldest boy Jack in the back. It was an education in loud music. Go easy, Simon. This fast-moving dad made your heart skip beats. It was a pure thrill driving fast with Simon, his music pumping. Jack is as wide-eyed as me. His chubby hands dance along to tunes, with a headshake and glorious toddler cheeks wobbling.
When I hear the superhero call I quickly find my costume. I buy a novelty T-shirt online that says I’m fine in black letters across the front. Seeping from the ribcage is a disgusting fake mass of bright red blood. I love that T-shirt but it scares the children, so I don’t wear it much. My regular housewife costume will do just fine. I’m a superhero in disguise.
The floppy foot wasn’t the car, of course, it was MND saying hello. Simon is limping now and using a stick. I can hear him in North Cottage limping up and down the hall with a walker. He wants to get stronger, but MND has other ideas. Each scrape of that walker on the tiles pulls a little more romance out of our country home. Romantic dreams limp farther away.
‘Poor Ruth, you’re so brave !’ people gush, until Aifric or someone who knows me well enough elbows them to silence. Don’t pity her, they mutter with covered mouths. She hates that. For God’s sake don’t pity her. I want to tattoo that across my forehead. Don’t pity me. Fuck off and don’t pity us. I’m fine with blood seeping out of my ribcage. WE’LL BE JUST FINE.
Break-ups are always nasty. Romantic dreams are hard to break from. Simon limps into hospital with me when our third child, Arden, is born. It is six months since his diagnosis. He sits beside me to hold my hand. His face is the colour of ash and he’s soon limping away again. His mind is locked into beating this thing his way. I’m sure the sight of his new son makes it stronger. He needs something to save him.
I’m skinny with secret muscles. I could lift grown men and children at the same time. Try and stop me.
Healers and holy men take his money as he limps around the country with his mother. He got the cure for warts once by washing his hands in the dirty bird bath of some creepy old house when he was a kid. They believe in this stuff. They don’t believe the medical doctors who deal in dismal diagnosis. They believe in wart cures. I believe in the power of what you believe in because it gives hope, so they have my blessing.
A healer called Nicholas tells Simon that everything is going to be OK. I cry when he tells me the story of this man who took his hand to give hope. Your poor wife, says the man simply. For some reason I take his pity. It hits my heart hard. We name our third son Arden Nicholas after this man who is the seventh son of a seventh son of a seventh son. He is born in December so everyone thinks it’s a Santa thing, but we know differently.
Arden is our war baby and he has always been brave for it. In a windswept schoolyard, he is the kid standing with his coat wide open, his trousers possibly back to front and his tie askew. His mind is just above these material things. When he was three, he hurled himself down a massive water-slide in France. In primal parent fear, I hurled myself down after him. A manic mother scream rose out of me. I caught him in a catch pool and checked for signs of life. Are you OK? He was fine, with a smile and a shrug. My braveheart lion, I call him.
North Cottage is no longer home. Simon needs saving and this break-up is hard. At the heart of a break-up is an urge to go back to who you once were, an older version of yourself. It’s someone you can understand and recognise. MND draws Simon back to his family. Their pursuit of an alternative diagnosis takes them through internet searches and blood tests for Lyme disease. When the holy men don’t work they look for wart cures in tick bites and complementary medicine. It takes them to an industrial estate in England. This place calls itself a hospital. They suggest he has Lyme disease. They want him to go on intravenous antibiotics and vitamins and possibly have a back operation. Simon limps over to England with his mother and sister to live in an apartment. He gets a PIC line put in to flood his system with salvation.
Alternative diagnoses seek unconventional cures. It’s a road that Simon is compelled to limp and trip upon. I am happy as long as he holds on to hope. The apartment is soulless so they rent a little cottage in the English countryside and bring Simon for treatments every day. In winter it is Christmas card pretty and snowing. We Skype at night
, cottage to cottage in our back kitchens and talk about deep snow.
Simon is gone for months and I am knocking around North Cottage with our three boys. We run in the garden but we’re not free. Where’s Dadda? Jack whines. I light fires at night and feed the baby but there are no limping sounds from the hall. The countryside is silent. I don’t feel scared under this starry sky. There are worse things to be scared of, but we still miss him so much. Everything is moving so fast but in the wrong direction. Simon’s fast car is outside with a dead battery. I hop in my own car with the three boys and satnav my way across water. It’s a long bridge from one cottage to another.
I arrive to find a country paradise. The snow has melted. Simon was whisked away to get fixed. Control is a crutch and a press full of vitamin jars. The limp is heavier now and he leans on a pair of crutches. Simon leans on his family. They make organic meals and healthy snacks. They have laminated lists of life-sustaining vitamins to be taken in specific order at breakfast, mid-morning, lunch and dinner. His mother is thrilled to give baby Arden his first bottle. It is so pretty and comfy here. I can see why Simon feels safe. To me it’s as safe as a padded cell.
Now aged seven, Arden is reluctantly getting his hair cut in a fancy salon. He weaves his head away from the scissors as much as possible. Can you tidy it up? I ask the lady doubtfully. Arden’s hair is pure pathetic fallacy. It’s a wild emotional weather forecast. There is just no bringing this boy to heel. He likes to linger on the edge. Footpath edges, ten yards to the fringe of the group, that is where you will find Arden. Dangling on the edge of danger, he is a born heartbreaker. This boy will grow up, leave me, and travel the world without a backward glance. I can only hope he returns for the odd hot dinner.
The nice lady calls me over to look. See the way his hair grows, she demonstrates. I can’t tidy it. It is growing in ten different directions. You just cannot tame this boy. Even his hair says so. I look at the back of Arden’s hair growing up and down in swirly chaos and I feel inspired. My mind screams back to the memory of a polar opposite view. Rows and rows of vitamin jars.
I used to sneak into the room just to look at them. I would open the doors and gasp in wonder. That well-ordered press of vitamin jars. Face your fears. There couldn’t have been fewer than fifty of them. Those clinical white smooth tubs of varying size. Each label faced forward the same way. I would touch them and fiddle with them and then fearfully straighten my fiddling. I had stared for too long and seen too much. The horror. That vitamin press scared the living shit out of me.
It was then I decided to become a superhero. If this is the superhero Simon needs, then I can do it. You have to do this, Ruth. Claim your husband back. Get him home and we can have our own vitamin press. His family are exhausted and have done all they can, so we’re all in agreement here. Get him home. The hospital post over crateloads of IV vitamins and charge him for telephone consultations. It’s worth it just to see a light in his eyes. Isn’t it?
Back in North Cottage, my vitamin press is messy with labels lost somewhere three jars deep. I am mainlining magical pink mixtures of vitamins right into my husband’s arm. His veins are pumped but he’s still miserable. Tap out those air bubbles because they might kill him. I run between husband and babies. I try my best but I can’t fix things this way. My superhero costume is the wrong fit and that’s when I fall face first in the gravel.
Things are moving too fast and Simon’s footsteps are getting slower. I hear an almighty crash in the hallway and run out to find him folded on the floor like a half sandwich. He is lying face up on his back, with his legs underneath him the wrong way. I am afraid he’s broken, but he’s not broken. His legs have just stopped. I help him into the wheelchair that has been a shadow in the corner for weeks. It has been camouflaged with a colourful army of well-placed teddies.
Things are moving fast but now Simon can move fast too. I strap the baby to my front and two eager boys park themselves on Simon’s lap. Let’s get some tunes pumping. We are racing down ramps and footpaths with running wheels. Chubby hands are dancing. We can get Simon moving and hearts skip beats. I am strong and we gain momentum as I push from behind. I can push with everything I’ve got. This superhero costume fits just right. I’m fine. We’re fine, but our new wheels don’t fit in this place. It’s time to put the call out to some superhero friends. Let’s just pray they answer the call from up high. I hope they have decent costumes.
Truth or Dare
On good days we are beachcombers. Sorry souls are drawn to the sea. They come to the cove for solace and leave clues behind. Some days we are the best detectives who beachcomb and find every clue. There are treasures here. We find a cluster of stones left on a ledge. The stones are scrawled with fine-tip, delicate drawings of owls and animals. Who drew these? Can we keep them? This could be somebody’s shrine, but maybe they were left to be found. My son hands me an owl stone so I can put it in my pocket. We only keep one and leave the rest.
Motor Neurone Disease is a tough name for chewing around in a child’s mouth. 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. ‘Aww, really? He’s still a good Dadda even though he can’t move,’ they shrug.
Today at the cove we are treasure hunters. Jack likes gnarled bits of wood and the tiniest rocks. Raife looks for heart-shaped stones. He gathers smooth round pebbles to take home and tie with string. He will glue on some googly eyes, turning them into pets. Arden seeks coloured sea glass and dismembered body parts like crab claws. Sadie stamps her foot for real actual pirate gold but will settle for sparkly stones or a fancy shell. Hunter chases dogs.
‘He is my own secret doll Dadda,’ sings Sadie in a 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? Close your eyes, Momma, and wait.’ Whisper. 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.
Treasures are waiting to be found. We climb the cove ledge and find two glass jars perched high up on the rocks. They are filled with rainwater and folded bits of paper. My five wild urchins circle the jars hungrily. Treasure! I don’t want to disturb the jars. They could be somebody’s wishes. A big label is on each jar. TRUTH, DARE. Curiosity takes over. It’s a truth or dare game. The game is long over and soaked by time. Can we play? Let’s play just once. We allow ourselves to pick one secret per jar. The truth jar asks in a childish scribble, ‘Have you ever peed in the sea?’ YES, we all nod bashfully. The Dare jar says: ‘Throw a rock at somebody.’ NO says the mother with a firm headshake.
‘I think I remember running on the grass with Dadda in North Cottage,’ says ten-year-old Jack, ‘But I wish I remembered his voice. When I was little I used to point the TV remote at you, Momma, and pretend to turn your sound down.’
Sometimes, on rare beachcomber days, a man with bagpipes marches up and down the ledge blasting gutsy melodies that shake my bones. I dive off the steps to the sound of bagpipes into sunlit sparkled water. My tribe of children whoop from the shore. They throw their shoes to climb rocks barefoot. On good days we are scavengers gone wild.
‘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 with Christmas cheer. ‘All of the doctors and scientists did some tests on Dadda’s blood and do you know what they said? None of us will ever ever get Meuron disease. They promised.’
‘Is that true?’ falters Raife.
‘Truth, ’ I nod firmly.
‘My foot feels a lot better,’ he admits.
‘Let’s run on the beach,’ I suggest.
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Children are like truth detectives. They hunt for it without mercy. I envy my children their truth when mine is space-bound to the moon in swirly grey shadows. There is no truth, only feelings. Can you see the moon’s face? Sometimes I can, but the shapes keep changing. Feelings shift moment to moment and truth moves along with them. Stay true to your own feelings. That’s the best I can hope for.
Arden can’t remember but he doesn’t say a word. He quietly places a framed photo by his bed of his dadda cuddling him when he was one. Rings of rolled fat reach up towards his dad’s face and Simon is laughing.
They don’t like it when he 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 just want to whirl around in my underwear and leave the bathroom door wide open, but the kids are freaking out. ‘I … miss … my … Dadda,’ wails Hunter between tearful gasping gulps. ‘We don’t like it when Dadda’s not here,’ they all whinge.
They may not remember but I do. Some days the truth slaps hard. Most days I wake with a gasp. Who am I? What place is this and how did I get here? 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 leaves cover me. I am married to a bearded stranger with intense eyes. The kids deserve better than a mother who feels like this. I don’t want to damage my children. That is my only truth on these dark days.
I Found My Tribe Page 5