I visit the Asian superstore that Sadie calls the silly shop. We’re not sure why. It reminds me of my veggie-flavoured Hindu-loving heart. Blocks of paneer cheese, bindis and bags of rice surround beautiful brown-eyed women and grumpy shuffling men. Love was once made of lentils, chana masala, fifty varieties of noodles, hot counters of crispy bhajis, butter biscuits, vanilla-flavoured Coca-Cola and – oh, bless us – the silly shop just makes my silly heart sing.
The only things making sense in this new world are mealtimes and children have to be fed. I mechanically cook meals but don’t remember tasting them. I visit my parents for dinner and feel lonely with my separate veggie portion. Something primal in me wants to share the same food as them, cook the beast, tear it apart and break bread. Lentils have no love in them since the ICU.
To hell with the animals when you live in hell. I have wolfish survival instincts and they are harshly tit for tat. Simon is forced to live like this and he can almost die like that. In the grand scheme of things, fuck the chickens. Life seems so tenuous and sacrificial. These hands would gladly take a chicken’s life. Let me wring some scrawny necks. My soul is starving and I need to eat.
Twins
There are five children in my house. Who put them here? I am tripping up over a dog, a cat and a hamster who bites hands. Clutter and chaos are here too. They are close friends who bring me the most calm. This is lucky, because they have me surrounded.
My childhood home always left me feeling oddly perplexed. I grew up knee deep in higgledy-piggledy. Where did six children and all the pets come from? Animals and babies crowded recklessly in corners. For years, an upturned cushion hid the melted hole where my brother had tried to set fire to the sofa.
My dad ran his doctor’s surgery from the house. He had six willing receptionists. ‘I’m not here!’ he’d yell. We all grew up with impeccable phone manners. My mother had to wade through odd shoes and Dinky cars flung from the stairwell, to answer the front door. My poor parents had to barricade themselves with a baby gate just to eat their dinner. Their plates were perched on knees for a hasty ten minutes while children pawed at the gate like zombies. I take pride in chaos because for some mad reason it means happy children.
Simon grew up in a tidy home with two sisters. He had bathrooms where the towel colours matched the shampoo bottles. Chaos never came as naturally to him but he went along with mine. He knew all about growing up with love. I casually constructed sculptures of odds and ends on counter tops. He would sweep them away like litter. I like to think we complemented each other and the result was happy balance.
I might just have a thing for babies. Animal or human, it doesn’t really matter. Perhaps it’s a kind of madness. I’m such a sucker for a cute face. ‘She’s got that look in her eye,’ my friends will mutter. Hold on to your pets and babies. I might just steal one.
In our first Greystones home, just married, a stray cat took up residence in our backyard. She gave birth to five kittens. We kept one kitten, she had another litter and the cycle continued. Where did all these cats come from? I unwittingly became resident mad cat lady of our housing estate.
Growing up, we had lots of pets but our house leaned against a busy main road. So many cats sped through some fast cars and short lives. My mother would solve this conundrum by simply getting another pet.
Our cat went wild with the move to North Cottage. She wandered far and left mouse guts by the half-door. Simon found her in the ditch one day with the life knocked right out of her. Her hair stood on end but her body had no marks. A fast lorry had swept her off her sturdy clawed feet. Even cat paws can’t dodge a death that swift.
When a pet dies, there is an empty space left where they used to be. You no longer feel or hear them moving through your world. They are just gone. There’s an empty cat bowl. The door of the cat house is left ajar. Death has come quickly, easily, as a matter of course. Dying is a brutally banal occurrence, like pouring the milk into your tea. A cat bed covered in hairs and some unopened tins in the press. It happens so quietly, definitely with no fuss and a cruel finality. All you have left is this sad echo of things.
We got busy soundproofing sad echoes. Our cat’s nine lives were up, so we searched for a puppy. We drove to Wexford and found ourselves a basset hound. He bounded on to the lawn with his brothers and sisters, tripping up over his long ears. Our own babies couldn’t have been cuter. It is love at first sight and we name him Pappy.
Simon came home from ICU on a ventilator and with 24-hour nursing care. My chaotic brain was no match for a hospital in my home.
Here is my husband back with tubes trailing out of him. Noisy suction machines and beeping ventilators bark loudly. Fear dances in his eyes. My heart is breaking so I do the only thing I know how. I dump children on his lap and animals at his feet. Kids climb through pipes and wade through wires. Their chubby hands find his face. They play. Jack grabs the back of his wheelchair and Simon drags him around the floor. The room swells with peals of boy laughter.
It makes perfect sense to have another baby, because we still can. Practical discussions and questioning of doctors don’t even come into it. For me this is survival the only way I know how. The making requires some manoeuvring with raised hospital beds and standing-up wheelchairs. Mind and body have to jump through some gymnastic hoops. But we managed.
Free from the windowless ICU, Simon has a new view. He is finishing the script for his first feature-length film, the one he started before MND and toiled over in Australia. He plans to be the first director with MND to ever make a movie. He might write a book as well. Fast-forward action flips to floods of tears in a heartbeat, but he’s trying so hard I can feel it. It rallies us together like a team. His bravery builds bonds that feel unbreakable.
Bring on the chaos, but I wasn’t expecting two of them. At the 20-week scan, we want to avoid the element of surprise. Is the baby a boy or a girl we ask nervously. ‘Which one, because you know there’s two of them,’ says the nice lady. ‘You’re joking,’ I reply. ‘I’m not joking,’ she bristles, clearly insulted at the idea. I have no concept of twins. There are none in my family. If it’s two more boys I might jump out that window, I think. Simon’s eyes get wider. ‘Twin number one is a girl,’ she says and we both burst into tears. Benedict, nurse of the mighty Tuc crackers, is with us too. His face beams rays of sunshine.
I’ve had a terrible hunger. Twins! Perhaps it was all the damn chicken. They are born by Caesarean with Simon and his wheels by my side. This feels like some kind of Caesarean birth party. I could swear that nurse has balloons under her scrubs. They let our family in straight afterwards for tears and photos. We have two new doll-sized babies, Sadie and Hunter. Simon can’t reach for them so I wedge them in the crook of his arms wrapped up like baby burritos.
Simon has a new team around him and so do I. My mother moves in for a month and we share night feeds. The twins pull everyone together with new purpose. Simon’s mother and sisters share rotas minding the boys. Friends who don’t know about the chicken leave so many spinach and ricotta bakes by our front door we turn green.
We think that, as people, our death will be more profound, more meaningful, more dramatic than the death of a pet. But it won’t. We are just the same and death is the same for all living things. We can go swiftly, silently and it could happen in an instant.
When the twins are three years old, I meet the Master of the National Maternity Hospital Dublin at a women’s talk. ‘I remember you,’ she says. ‘You almost died. It’s the best part of my job to see someone like you so healthy now when you came so close to death.’
Nobody knows why I got sepsis. They scratched their heads because it was three whole weeks after the Caesarean. I spent two weeks back on the maternity ward staring at an empty cot. They pumped me full of five different antibiotics. I wish they’d just taken the cot out of the room. I couldn’t stop getting sick. I can’t look at that neat white baby sheet. Simon’s family took the boys during the day. My mother minded t
he twins without me. She loaded the washing machine again and again. Home at night the boys loaded their loud rage and confusion right back on top of her.
I have a farmer friend whose husband had MND. Through an entire pregnancy she nursed him single-handedly and still ran their farm. The night their daughter was born, she helped him to bed, drove to the hospital and gave birth. The next evening she was back home with their baby. She helped her husband to bed again. True superheroes are so matter-of-fact. They just get on with it and it’s no big deal. This woman is mighty. Strength of the land is in her arms.
Home from hospital, I help the nurse get Simon to bed again because there is no carer. The doctor suggests I don’t sleep beside him till my scar heals, to avoid more infection, but I can’t do that. Our bed is a battleship and it’s utter defeat if I leave it. I sleep beside the humming and squelching of pumps and squeaky electrical devices between night feeds. My brain swims in panicky directions. Please, dear brain, just get on with it. Be more matter-of-fact, I beg you. I think of my farmer friend’s mighty arms often. She is beautiful and tiny and thin as a whippet. I’d make a lousy farmer. Don’t feel sorry for yourself. Don’t you dare.
I move through our house feeling slightly perplexed. Where did all these babies come from? As they grow, Pappy the basset hound guards both twins while they play. They sit on him like a hobby horse and pull his sad ears. ‘Where is Hunter?’ I ask when he’s three years old. Busy house and boys don’t answer. I find him curled up in a ball in Pappy’s basket fast asleep. The dog beside him stares at me gloomily. Hunter my little boy cub has been raised by wolves. His fat cheek rests against fur. Their breaths rise and fall together.
With each birthday my second son Raife begs me for more pets. Many people just don’t get it. Why on earth would you say yes? To me it is perfectly obvious. The grim reaper is lurking in my bathroom where the shampoo bottles don’t match. This clinical system is out of synch with our souls. What else would we possibly do? This house is our home and our home craves chaos. For some mad reason I will always say yes to more.
Worry
Our eldest, Jack, is a worrier. His mind is a massive island of many inlets. Huge harbours of heavy thoughts moor in hidden crevices. When they get too tied up, BOOM, we get hit. With Jack it could be life or death or just a Lego figure trade gone wrong. Do not underestimate the power of Lego trading. In the heat of the exchange it all seems so right. Soon after, your heart gets ripped by regret, but it’s too late. Your favourite Lego figure is in the hands of another, home in some other kid’s grubby little pocket. When you’re ten this is life and death stuff.
Worry strains his face last thing at night. ‘I can’t sleep,’ he grumbles. ‘Just close your eyes and wait,’ sighs Arden. ‘That’s what I do.’ We play the relaxing game, an old Jedi mind trick I learned in a faraway yoga class. I whisper words of love and his mind floats off with the moon. His face only ever looks worry-free in the full abandon of boy sleep.
When he was twelve, my eldest brother ran away from boarding school. We were all seated at the kitchen table when a hooded figure shadowed our plates. Worry had him cloaked in darkness and mud. A cartoon misery cloud clearly resided above his head. Chronic asthma made him a bit small for his age. Despite the cloak and cloud, on this day, he looked mighty tall. ‘Oh my God!’ my mother screamed. The lesson of not hitching a lift had been drilled into him so hard that he walked the entire forty miles home from Dublin. A week later my parents sent him back and he ran away again. He was running for his life. They didn’t send him back after that.
Hanging high over rock and sea and train line is the Greystones Cliff Walk. It runs all the way to Bray. Michelle and I like to run with it. Running is great because it requires no skill. Fancy trainers aside, you just put one foot in front of the other. Just keep moving, one step at a time.
Worry is fear that makes your brain wobble. It traps you in a spin cycle and locks you indoors. When I get worried I like to run. Choosing a running partner, it’s always best to find a warrior. Michelle is also way fitter than me. I ran with Pappy once but he was too slow. I lost him round a few bends. The sight of his basset hound body, catching up on those short legs, was something to behold.
We drive past the sea every morning on the school run. ‘Hello, sea!’ shout the five kids. ‘Is it good today, Momma?’ asks Sadie. Tide in means a step swim and tide out means a clamber on slippy rocks. Both are good. Too rough is the only bad, meaning no swim at all. ‘It’s a good day,’ I reply. ‘Hurray!’ she cheers. Sadie is quick to scold me when I’m stressed. Her questions come dressed in finger wags. ‘Momma, do you need another swim?’ queries her sing-song voice. ‘Yes, Sadie, I really do,’ is my raw reply.
I grew up in an old house. There was no grand distinguished prettiness. The house was just old and kind of ugly. A former hospital during the Famine, people had died there. Old walls are like sponges. They absorb the damp and dead souls. Then they squeeze them out in concentrated creepiness.
My dad’s surgery lay at the end of a long corridor, along with the heating switch. Children were sent there at night to turn off the heating. We all dreaded this well-worn path of doom. Siblings took turns to walk alone with the light of the kitchen on their backs. A walk into darkness lay ahead, past a glass cabinet collection of hideous antique dolls. A quick flick of the heating switch in the cold surgery and you were fucked. Lights out had you lost in perpetual black. Run back towards the light, but the warm kitchen was a lifetime away. It meant running full pelt with darkness rolling over your shoulders. Fear roared in your ears. It was a run for your life.
‘Leave the door open a crack!’ yells Raife. ‘I’m scared of the dark!!’
‘Don’t be afraid of the dark,’ I hush. ‘It’s just a hug on your eyes to help you sleep.’ Also, less soothingly, ‘You have no idea how easy you’ve got it. I mean seriously? We don’t even live in an old house. Try growing up in a creepy ass house like I did. It was a frickin’ horror show every night, hiding under sweaty duvets. There is nothing in here but empty cardboard walls – and out there? Cosy street lights!’ He chuckles but my words make no difference. Darkness breathes down your neck as a child and it is primal.
When the moon is out we rush to the front door. My five huddle around me outside. We look up with lunar love to gasp at the stars. The night before Simon returned from ICU, the stars were out in a sparkly dance. Jack wished upon the brightest one for his dad’s return. The belief that his wish came true is still stronger than Santa Claus.
There is magic all about, I tell them. Can’t you feel it? Jack is encouraged to help his father. Kind nurses show him how the machines work. He runs to place hand warmers under cold fingers. Approval from nurses and family spur him on. He creeps out of the room and I find a worried face cocooned in his bunkbed. ‘Jack, it’s nice to help,’ I say. He nods faithfully. ‘You will never ever have to be your dad’s nurse, though,’ I whisper. His eyes are wide as moons and he grabs hold of me. We hug silently and he won’t let go.
‘Running and swimming?’ I sigh. ‘Michelle, you have turned me into a total asshole.’ We don’t belong with any fancy Lycra-wearing, trophy water-bottle, run-with-your-shades-on brigade. Are they actually wearing make-up? This is no show. I still feel compelled to buy a pair of fancy pink trainers though.
Michelle has an uncanny ability to run and talk at the same time. Tragic wives run almost side by side. I am always a few paces behind. ‘Keep up, Pappy!’ Michelle laughs from up ahead. Don’t be fooled by the chat. Michelle and I are running for our lives.
We run to let our feet hit hard earth, to fall and stumble on rocks. We run because it wakes us up to be on a hill high above worry and pain and loneliness. We are sorely alive to the beauty and sadness of this life. Ignoring our souls’ hunger is too dangerous a game. We run the legs off our souls to keep them content. Like children cooped up inside for too long on a rainy day, our souls require running feet.
Worried brains will wobble and trick y
ou. My worried brain doesn’t want to run the Cliff Walk or swim in the sea. Stay safe, don’t bother. A worried brain will have me crouched in the corner, my soul clanking like an empty wine glass.
Up a few steps and running turns worriers into warriors. One foot in front of the other. The Cliff Walk hangs high above the sea. We stare down at the tides that are so changeable. Crashing one day and a still lake the next, tides change, but they are always beautiful. We gaze out at the sea, searching the horizon for love. Our minds cut corners and run tangents. Our legs climb hills and they are free.
We finish our runs by the cove steps and Michelle glances at me with a glint in her eye. This girl is trouble. Suddenly we are peeling off clothes before our run-fuelled bodies cool down. We skip down the steps in our knickers and sports bras. Giggling madly we throw ourselves in. The water never felt colder. Giggles turn quickly to shrieks. Sweaty running gear gets rejected when we climb back out. In the car my toes grip the foot pedals and shaky hands hold the wheel as I drive home barefoot and dripping, swaddled in towels.
‘I’m worried that you’re just running away,’ says a dear worried friend. ‘You say it makes you feel better but are you really dealing with your problems? No offence but I don’t even like sea swimming. It’s so tedious and the beach is kind of boring. It’s not like it can really fix anything, is it?’ I laugh out loud at her honesty. There is no fixing MND. Some things cannot be fixed. I would rather run with magic, thanks.
When I am compelled to jump in the sea, I think of my brother who ran away. He is my chronic asthmatic, heart of a lion, forty-mile hero. Running for your life, you run with gut instinct. Through the rolling of waves, those instincts are rock solid.
I Found My Tribe Page 8
