I stand before a sparkling sea and turn to see a gull on a rock. He looks so solid. Waves are lapping at the lower step and sucking my feet in swirls. The gull is on more solid ground than me. Michelle says we just have to ride the wave. Ride the wave and remember that a wave came before you. Even if you’ve missed it, another one is coming up right behind you. Waves go on for ever, so just go with it. She is such a lovely hippie.
‘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 in and say hello. Go on! 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 great joke is that he is protecting me. Through five pairs of eyes, I see that Dadda is just Dadda. Things are what they are. TRUTH.
Some good days at the cove start off feeling bad. It’s windy and cold until our feet hit the sand and we dare to run. It’s warmer than we thought and nobody else is here. This beach is ours and we claim full ownership. We will collect stones for Dadda. I only wish we could hand the whole cove to Simon so he could put it in his pocket. It starts lashing rain and we just don’t care. We are whooping and laughing and climbing and swimming. We will continue to beachcomb, hunt, and scavenge for clues. Treasures are left to be found and we know this is true. Sorry souls do what they can to survive, so just go with it. I dare you.
Dancing
I fell in love with some dancing hands. You don’t expect to fall in love with hands. Simon would speak words and his fingers would follow suit. His hands drew invisible letters in thin air. His fingers moved frantically to tune in his fine talk. Those hands were the dance beat weaving together the entire earblasting soundtrack. I drank in his eyes, his hands, his face, all moving together in some kind of fast symphony. This was by far my favourite song. I could listen to this tune on repeat. I could dance along for ever.
Two souls swing together and attempt to share a life. Often these souls sing to wildly different tunes. My soul is most likely a cheesy Abba song, rhyming words with a hearty refrain. Simon loves hectic jazz, indie misery and booming opera. Hell is a place on earth that listens to Leonard Cohen around the dinner table. The horror. Simon would love that. I would have to put my cutlery down quietly and jump out the nearest window.
Simon’s blue eyes now dart around a computer screen. Letters in square boxes get highlighted as he settles on a phrase. He picks words from a predictive text database. Sentences are formed. His hands and face are motionless. Fingers with long clean nails lie limply on propped cushions. The dance is slow and careful and full of wrong moves. I stand beside him shifting from foot to foot. I wait for his words as patiently as I can, but children are yelling to be rescued from lost socks, unwiped bottoms, toys on a high shelf and unopened bananas. The dance stops and starts so often I get twitchy. I linger on his beautiful eyes and attempt to change my pace. I beg with my brain to please not let our dance disconnect, but it does. His words can’t come fast enough and it’s just too damn hard. Shouts from the children have reached operatic crescendos. With heavy shoulders, I leave the room.
We danced together at our wedding and the truth is that we were terrible dancers. Our rhythm was off so we just clung together and giggled. Our parents jived around us in perfect harmony to the sounds of Mama Cass. We laughed and looked on in admiration. Our lives lay long and languidly ahead of us. There was plenty of time to get the moves right. Five years later I danced with a friend at my brother’s wedding and he explained to me patiently that one person has to lead. Then he spun me around the floor in perfect circles. I learned that lesson too late for Simon to spin me around a dance floor.
Every year since MND, Simon’s aunt buys us tickets to the Opera. Wexford Opera House is a grand and glorious place of smooth circular wood and warm lights. It is a black tie event filled with opulent old ladies draped in furs and diamonds. Simon wears a tux and his nurse, Adam, positions a colourful cravat discreetly over the tracheostomy at his throat. The air pipe snakes secretly under his black jacket, back to the crooning ventilator behind his wheelchair. We drive for two hours to get there and smiling ushers lead us in. The fine old ladies elbow past the wheelchair in a scramble for the lift. In a comical dance, they fall over his wheels and beat us to the elevator doors. Old age earns you a one-way ticket to outrageously selfish behaviour. I just love these crazy old dears.
The lights go down and Simon gets lost in the swell of the strong orchestral swarm. Tears gather in his eyes and I squeeze his hand. I think it’s all great but secretly I’m more of a Wicked girl and Simon knows this. Adam is with us. Adam is young and perpetually hungry. I warned him to eat before we left because the Opera outing is a long day. We will stop for chips on the way home. I spend most of the Opera daydreaming about future chips and the time I saw Wicked with my mum and sister and cried my eyes out.
I fell in love with Simon’s dancing hands and now they don’t move. For a long time his left hand had just a tiny twitch left. The kids called it his ‘imping’. In bed beside him, I would slip my hand under his palm when we were watching movies and his imping would dance along. One day or another it finally faded and just stopped. Simon’s fingers can no longer tune in his words, but my love for those hands still lingers. I want to keep the nails cut down because they grow too long. He gets scared that I will cut too far to the quick. I rub them and hold them and rest them on cushions. Children and nurses slip hand warmers under them when he asks. The dance has left his hands in a permanent disconnect. I can drink in the deep of those eyes, but dammit, those hands had a fine sexy beat. I miss that dance so much.
I am standing in a chipper in the town of Ferns in fine Opera clothes. My eyes are tired from driving. Pretending to be grown-ups is how I describe the Opera trip to my husband. A television screen flashes above my head in this bright Italian chipper and it’s pumping out a loud dance beat. I scrunch up my toes in tight woman shoes. I am squirming in my fake fur jacket. The dance beat is teasing me. I look up, and on the screen a young girl in a tan leotard is dancing wildly around a tiny room. This girl is twisting and throwing and bending her body around a confined space. She is a wild prepubescent animal, caged and raging with schizophrenic fake smiles. My tired eyes are transfixed and I am filled with dread.
Pretending to be grown-ups isn’t funny any more. I don’t want to be this person wearing a fancy lady’s dress. My shoes are killing me. I want to run around the room screaming at the walls and beating them with fists. I need to move, bend, drag, twist my body away from all this. I’m not ready to be bodiced into old age. The dance beat is tearing up my soul. Opera years are piling up like old ladies over Simon’s wheels. Their fur coats will smother me before we make the lift doors. I fucking hate the Opera. It’s not a joke. The wildness in me is very much alive. I take my warm bag of chips and thank the man politely. Adam and I eat our chips silently in the car with Simon asleep in the back and then we drive home.
I can’t stop thinking about the girl in the leotard. Puffy eyed with weary feet, I show her to the children next morning over our cornflakes. Six of us huddle around my laptop. ‘She is totally freaky,’ says Raife. ‘She’s dancing!’ squeals Sadie. ‘Turn it up!’ yells Jack. Suddenly we are all wordlessly throwing shapes around the kitchen with the girl. Sadie swirls her hands in the air. Hunter jiggles. Raife runs on the spot and Jack pumps fists. Arden falls to the floor in full breakdance. I throw my body in with them, laughing my ass off.
We could dance this way for ever as long as we keep the door closed. A nurse comes in and the kids self-consciously stop. I keep on kicking it and they all start up again. Keep on dancing, keep moving I tell them and everything will be OK. It has to be. I won’t give up on the dance, because if I do we are all
doomed. My Opera-weary muscles stretch out and I dream of a nowhere somewhere space with fast beats. This is the place where Simon and I are finally spinning around a dance floor. We move in perfect synch and his hands are still dancing.
Watered
Good friends know how to keep you well watered. By these watering standards our friends Daragh and Cath are good friend superheroes. It makes perfect sense that Daragh is also a water engineer. Cath and I had our first babies together. Jack and Theo were born in the same month. We would park chubby parcels between us in coffee shops and talk endlessly over jammy scones.
Before MND we were faraway neighbours in Greystones. Daragh and Simon embraced DIY. Days were endless. They did man stuff like pave pathways and rotavate garden soil. Cath showed me how to pot plants properly so they stayed alive. Then they went and emigrated to Australia, we moved to North Cottage and Simon bloody well got MND. Endless days were over.
I have always had a problem with plants. It is never as simple as just keeping them watered. Watered or not, they defy every care I give them and just die. At Christmas red poinsettias go crispy. Summer blooms hang their dead heads before I get near to deadheading them. Orchids are a conundrum and even cactuses look sad and shrivelled. My mother-in-law gave me a lemon tree once that filled me full of dread.
Marian is good with plants. She breezes through our home quietly saving tiny green souls. Orchids bloom by her hand and lemons hang fat. I love this woman. ‘You don’t water them enough and then you overwater them,’ sighs Marian, which is way too complex a notion for me. Love them too little or love them too much. Either way is not enough. Watering just got far too technical. I nod in careful agreement and then leave her to it.
When MND started to take over North Cottage, I knew in my heart what we needed. Simon had been diagnosed less than a year but was already in a wheelchair. We were soaked in vitamins and lost hope. The boys needed to see us laugh and be brave, hugging hard onto the life that we had.
I craved a Mad Hatter’s tea party and some cracked plates. Playing things too safe would swamp us. I calmly told myself what we had to do. Dive into sparkly sunshine and find the good friends who first taught us the superhero code. Get back into the light. Follow Daragh and Cath to Australia with these new wheels.
I feel nervous watching the attendants push my husband down the aisle of the plane on narrow, tiny wheels. Baby Arden is too big for the bassinet cot on the wall but my arms get so tired, I wedge him in there anyway. He sleeps soundly with a dented head. Jack and Raife shout the eleven-hour flight with loud headphone voices. I choreograph an aeroplane dance around all of them, involving nappies, wipes, bottles, toilet trips, snacks, naps and cartoons. Not knowing he can’t walk, fellow passengers scowl at stationary Simon like he’s the biggest asshole father of all time. We giggle together in the heat of their glares. Two souls take flight in this plane fuelled up on adventure.
Ironically, we get watered in one of the driest places on the planet. If Ireland is overcast and brooding, Perth is all scorched earth and sunlight. It feels free from moisture and heavy thought. The dampness and cloying doubt get burnt away. We drive through dry winds under blue skies. Smooth red roads and roundabouts circle our days. So many suburban signs slip by with a sea breeze and a sense of space. Oh yes, I like it in Perth. And Daragh and Cath are here to greet us.
Perth is such a parched piece of land, the government gives grants for fake plastic grass on front lawns. We learn a new watering word in Perth. The word is reticulation. Reticulation is the complex system of sprinklers set on a timer that folks use to water their gardens. Real lawns are so neat, lush and systematically watered that they look fake anyway. Reticulation sprinklers are only turned on at designated times of the day. It’s a system that saves all of Perth’s tiny green souls.
I am determined to get Simon well watered in Perth. I watch the sprinklers go off in sequence. Just keep his soul saturated. You can do this, Ruth. Get up, jump, skip, dodge the dark looks, keep him talking and his face in sunshine. I have arms that can carry, push, pull and heave. Baby Arden is strapped to my body while Jack and Raife sit on Simon’s lap. We walk the smooth streets this way. Simon’s wheelchair is a Daddy-shaped children’s buggy. He wraps his arms around soft boy skin. They whoop and laugh as I push them at a run and we freewheel under bright blue skies. Simon grows to love his new wheels. Wheels can be so lovable in a place with good footpaths.
We are totally invincible. I don’t even feel tired. Fold that wheelchair up and throw it in the boot. Heave Simon into the front seat on a plank of wood and let’s drive. We have the freedom to go where we please. Broken baby nights and physical days are easy because we are high on the achievement of really living again.
Systems can help Simon, and Daragh and Cath design a system of fun. We lower him by hoist into the swimming pool, arms adorned with three layers of floatie bands. He bobs around with a face full of bliss. There are trips to the museum and windy parks. We lift him together in a king’s chair and lower him on to green manicured grass. We eat eggs, avocado and feta and drink the best damn coffee in the land. This place is all sea breeze and beach toes, dazzling blues and dry heat. I think I might love it here.
Daragh does bombies with the kids in the pool as Simon floats around. I watch my boys get physical with man-boy play and it is wonderful to watch them go wild. Daragh wrestles them with hairy bear hugs. He brews beer and bakes lemon tarts. His engineering brain embraces such skills with ease. He patiently explains pipes, manholes and reticulation systems to the kids. The boys dance naked through sprinklers circling the grass. Their milky white bottoms are mini moons catching the sun.
In Australia I get superhero clothes. I literally dance in my pants. Mornings are too hot to wear anything but knickers as I clean the swimming pool. The boys hang loose in nappies, sun hats and rubber Croc shoes studded with badges. We throw the kids and their plastic shoes in the bath at the end of each day to soak away the desert dust. Knickers and flip-flops will do me just fine. I become obsessed with the two funnest domestic tasks known to mankind: cleaning the pool and hanging out washing. Clothes reduce to hard husks after only an hour’s drying.
Cath is a creative soul who cooks, plants, knits and sews. Throughout our stay she is making a patchwork quilt. Each square is a letter of the alphabet. Every morning she arrives at the door with an easy smile and another letter. She sits and sews with the kids while I help Simon get to the bathroom and get dressed. Functional carer duties are easier to cope with if you say them quickly and get them done fast. Don’t dwell on the details, even in your own mind. I have never had help like this. Cath makes it feel so simple. She sews us back together with the steely calm motion of her needle and thread.
Perth is a reticulation system all of its own. Sprinklers surround us. They spray soft water on our sorry souls. Endless rounds of sun, heat, movie dates, fast sunsets, blackout blinds, plastic Christmas trees, pizza in the park, swimming pools, scorched car seats, morning coffee, complex train tracks, children in the fridge, wees on the floor, cockroaches in the dishwasher, demonic flies, Simon’s first movie script, tears, sex, love and AIRCON busy our days. All of it is good. We are well watered and start to get steady.
Sometimes Simon goes drinking with Daragh. They come home late, giggling and smelling of beer bubbles. Daragh drunkenly helps Simon back into our double bed. I roll over one night and wake to find Daragh calmly straddling my husband to prop him up with pillows. ‘Sorry we woke you,’ they both say. This kind of bizarre help quenches my soul.
It is in Perth that I notice the sea for the first time. It sings stories to me of a forgotten wildness I once forged as a child. My five siblings and I spent feral beach days on the shores of Co. Donegal. The Slidey Beach, the Secret Beach, the Big Beach – there were so many beaches, we claimed ownership of golden sand and christened them with names. In Perth the sand is a startling white. Men heave and tanned torsos strain, as Daragh and his friends carry Simon down to sit at the water’s
edge. Waves are large enough to eat small toddlers here and Cath points up to a bright yellow rescue helicopter circling the sky. ‘That means a shark’s in the water,’ she explains. We paddle tentatively near wet sand, a watchful eye eternally trained skywards. Wildness be damned, we mostly stick to the pool for swimming.
I feel alive every day. The sun paints a happy face on my heart. The ocean air empties heads and heals broken hearts. Arden is nearing his first birthday. His blue eyes look out to sea and his face creases into the wind. I wonder about his view through those long lashes. I recall that childlike feeling of possibilities. I had forgotten the simplicity of an empty, happy head.
There are some dark days in the sunshine. In our favourite seaside cafe, Simon begins to struggle when lifting his coffee cup. Sometimes he sits so quietly, just staring at walls. I watch his spirit flicker like a candle left in a draught. I love him. I want him to have a happy life with us. That view of possibilities through Arden’s eyes should be shared with the man who helped make him. Simon sometimes sits so still that I know he is very far away from me. I don’t know how it must feel to be him and it scares me to my bones.
Are superheroes allowed to get scared? Maybe knickers are not suitable superhero attire. They are lacking in basic armour. Some days I park my car at the beach and just cry. In Perth they have designated dog beaches designed for dog-walkers and closet criers. Crying empties you out so you can fill up again. There is no denying that I am drawn to the beach and the sea. Dog Beach is a place where my mind runs free and grieves.
Systems can keep you well watered but sometimes they feel like a load of fake grass. I am not good with plants. I overwater. I worry that I am an equally bad friend. Sickness makes us crouch selfishly in a tight circle with our immediate own. Empathy for friends is lost. We just don’t have room. Superhero friends gave us their car, their house and their hearts. Some day I will repay you, I tell Cath. I have woven these people around my heart and I will never let them go.
I Found My Tribe Page 6
