I Found My Tribe

by Ruth Fitzmaurice

  Simon grew up by the sea and wanted to stay by the sea. We searched for a house there first. So many shores to choose from on this island. Our search spanned Sligo to the vast golden sands of Donegal. We whispered on wild rugged coastlines about a different life in a cottage somewhere. The kids could run free. They’d have an amazing childhood until puberty hit. Then they could spend days mowing our massive lawn wearing large resentful headphones. They could have real hate in their hearts. It was a romantic vision.

  A property boom had boosted our first family home in Greystones through the stratosphere. We sold it for crazy money. We were giddy with the notion of living mortgage free in a creative wonderland. Brimming with love and promise, we set forth across the land. We would settle for nothing less than pure magic. Possibilities are endless when you feel invincible.

  Sometimes I have a temper. I bang a pot off the kitchen sink so loud that all my children cry. Jack dashes from the room. I try my best but sometimes I lay my stresses out like broken glass at their feet. My friend Aifric never rages. She ponders and contemplates. One morning her three girls were screaming so much, she slowly spread peanut butter on her toast and climbed up on the kitchen counter. She just crouched up there quietly and nibbled her toast until it was eaten.

  Aifric is like a wishing well because you could tell her anything. It wouldn’t even occur to her to pass it on. She doesn’t just keep secrets, they fall for ever somewhere deep. She moves gently and gracefully. She remains calm and wise as, all about her, the world rages. It’s a source of great irony to me that she is surrounded by three fiery pixie daughters. They dance around her in circles. Sometimes she looks slightly perplexed. She is their smooth centre.

  We found our first house in an unlikely place. Half an hour from where I grew up. There was no sea in sight. Leaving the sea was one of the biggest acts of love Simon ever showed me. I see it in retrospect only because I could never leave the sea now. Not even for him. In Co. Louth on the edges of Monaghan, we named this house North Cottage. It had rolling hills and apple trees. The kitchen had a range cooker and a half-door out the back. Out front was practically picket-fenced. At dusk on a nearby hill, a dray horse stood in silhouette. For two romantics this was a dream come true.

  We knew nobody at first but didn’t need anybody. Friends were secondary. We were our own tribe. We existed in perfect harmony. Our children ran with the wind and had grass-stained knees. Our cat went wild, leaving mouse gut massacres at the back door. Simon was writing his first movie script. I was pretending to write a book but mostly mooning over my babies. We had cots, old bookshelves and a warm stove. We walked the fields in our wellies.

  I believe a few things about friendship. Good ones are based on mutual attraction. They are born from love. If I were gay I would totally fancy Aifric. She is a righteously gorgeous babe. Her attractiveness is more than physical, it’s mystical. She reminds me I should never have the arrogance to think I know people inside out. As her friend, my whole life I’ve been reading the most beautiful mystery novel that can never ever be solved. This mystery is no trickery. The wishing well just runs deep.

  When you’re young, girls can be scary. They say one thing and mean another. It’s just mean. What do they mean? It’s the greatest mind-melt brutal Mensa puzzle of all time. I have stifled memories of being trapped in a hot sweaty sleeping bag full of sobs and snot. At a girls’ sleepover party, I hide in my hurt cocoon as the other girls laugh and jump over me. I can’t remember why except that they’re mean.

  I grew up with four brothers. Boys are easy, straightforward. If it’s mean, it’s clearly meant to be. When they’re hungry they eat. One best boy memory is wrestling my brother’s friend to the ground in our garden when he teased me. Then we shake hands. Easy. Girl wrestling was monumentally more tricky.

  MND ruined the romantic vision. It made North Cottage a prison. Illness does funny things to friendship. You feel small. How do you attract friends when you find yourselves unattractive? Having just each other was suddenly not enough. This thing was too big to bear.

  Family helped but we both craved friendship. How could we find new friends now? How do you keep friends with illness glaring in the half-door? Forging new friendships felt impossible. There were no roots here. Did we belong anywhere? We would continue to wander like ghosts with no grasp on real matter. Our shape kept changing and people walked right through us.

  Before I found the sea and my swimming tribe I had Aifric. I am always content to share the same space and admire the mystery of her. How do you find something like where to belong? MND had robbed us of free choice. We moved back to Greystones where it was safe. A network of family and friends existed to knit themselves around us.

  Aifric and her husband lived in Greystones too and, in beautiful symmetry, we found that we were not-so-far-away neighbours. We gathered in my kitchen with our collective gaggle of kids and made dinner. It was a shared space beyond words.

  Aifric is a friend I never had to find. Beyond Aifric, I worried if I belonged in Greystones. How could I begin to find out? Most things you don’t have to find because they are there all along. Throw another wish out there any way you can. Will it make a splash? Just wait and see what you fall into.

  Ergonomics

  Simon has a system of shirts. His shirts are so fancy they have secret buttons. They come wrapped in soft tissue and smooth boxes. They arrive in firm glossy carrier bags. Swanky bags are embossed with big names, ribbon ties and rope handles. The shirts make Simon feel good. They are gifts from his mother. They make him feel so good that his mother keeps on buying them.

  Some shirts are funky. Some are flowery. Some are zany with pictures of bicycles or stars or tiny teapots. So many are stripy, or spotted or checked. All of them are lovingly and expertly ironed by his mother’s skilled hand. She places them symmetrically in our bedroom chest of drawers.

  Statistics are a belief system in which many people hold faith. The statistics for MND don’t jangle many faith bells. They just make you feel really, really unlucky. In Ireland approximately 110 people die of MND every year. In the US, somebody dies every 90 minutes; in the UK six people die each day, just under 2,200 per year; 100,000 people will die worldwide in the next 12 months. Cap it all in a considered margin of three or four years left to live. One neurologist tells us that a diagnosis of MND is like winning the lottery backwards. That’s going too far for me. I measure out his words carefully. ‘What a dick’ is statistically my most likely response.

  Illness by its nature is disorderly. A public system swoops in to serve and take good care. Doesn’t it? Occupational therapists, social workers, dieticians, physios, public health nurses, a butcher, baker, candlestick maker. They are all super nice and speak in loud voices. Meetings are very important to them. Many meetings take place, where plans are made. Plans must be written down. It’s called a Care Plan. I may sound bitter but mostly I feel bemused. ‘I’m just ticking boxes, Ruth,’ is my favourite meeting catchphrase of all time.

  Sometimes systems are nice. We cope in the world as creatures of habit. I make my coffee every day in the same order. The wrong cup ruins my mood. My son will not get dressed unless he puts his socks on first. Is that sweet? Before MND Simon would leap from our bed every morning and pull back the curtains. On his knees, his arms outstretched, he would salute the sun, or lack of it, eyes closed, whispering a silent prayer. His was a simple system of thanks.

  Safety systems soothe our sick souls. A religion for the unwell. Systems will save us and bring forth serenity. Time is a prison of planned habits. Cherish order in all things. When does it become obsessive? Freaky? Cultivate your compulsive side. Disregard any disorder. Embrace your inner freak. Perhaps we’re all a bit sick.

  The public system can’t work fast enough. MND can always work faster. Theirs is a system with its very own language. Language is important, just like ticking boxes. Great care must be taken, even with what name to call Simon. An Invalid is not valid. There’s no patience f
or Patients. How’s your form? Just fill in this form. Incurable implies imperfect and Disease equals disgust. We shall call Simon the Service User. Is he confined to a wheelchair? Perfect. Box ticked. We’ll call him the Client. The word Client sits well in the realms of confinement.

  We’ll just pop out to the house to do an assessment. Assess what? Who is being assessed? Them or us or me or him? Our children? The word assessment sets me on edge. Social workers send me edgier still. Are they judging me? Should I say thank you? Why are they here? Will I offer them a cup of tea? What do you need? they say. We’ll write it down. Someone to talk to? Well, they’re not offering that. No counselling for me beyond talking to trees. Best not to mention the trees.

  Factor in the ventilator a few years later and MND leaves statistics behind. On the vent, Simon invents a safety system all his own. Who could blame him? He cannot move or eat or breathe. He can feel everything, including fear. In the face of fear how do you feel in control? When trust is in the hands of another and nurses are just passing through, how can you feel safe? His own system helps. The most marvellous, magnificent, mind-blowing system of all time. Tasks must be performed specifically in a set order. Do not dictate to the man in the bed. Good nurses can learn the system. Simple. Forget the order and you start again. Those nurses can leave.

  Way back, when Simon has been in the wheelchair a few months, I am sent on a manual handling course. I am an eager student. I’ve learned a few manoeuvres already. Proud of the tricks up my sleeve and how we’ve adapted, I am keen to show off my moves. I make some rude ‘man handling’ jokes to my husband as I set out from North Cottage to the training centre in Co. Louth.

  It’s a course for carers and nurses and for me. I sit with happy Howaya’s and comfy Nigerian women who clasp their hands under their bosoms and laugh along. My hand is constantly in the air with questions. Each of my moves is met with a frown and a big fat fail. All approved moves of the Client require a minimum of two people. At home it’s just me. I am an army of one. I try not to cry every time the jolly instructor talks about the Service User and ergonomics. What the fuck is ergonomics? I will have to go home and look it up.

  The perma-tanned girl behind me whispers that it’s hard not to get attached when you’re in the home. Oh God. She thinks I’m a nurse like her. She doesn’t realise I am the home she’s talking about. I need to go to that home now. The Service User, the Client, belts, slide sheets, banana boards. I buy a packet of cigarettes and sit in my car smoking half a Marlboro Light, with sunglasses on. I don’t even smoke, or wear sunglasses. The glasses steam up from crying. These fags are gross. Nothing works. Maybe I need hard drugs. There’s a permanent knot in my stomach.

  Ergonomics is human engineering. I looked it up. ‘The scientific discipline concerned with the understanding of interactions among humans and other elements of a system and the profession that applies theory, principles, data and methods to design in order to optimize human well being and overall system performance,’ says the internet. Maybe I need another cigarette. It’s hard to find any magic in ergonomics.

  My son Raife runs into the kitchen at 6 a.m. with an excited screech.

  ‘I did it, I DID IT! I finally DID IT.’

  ‘Did what?’ we all respond as eagerly as you can at 6 a.m.

  ‘Last night, while I was asleep, I got control of my dream.’

  ‘Wow,’ says Jack. ‘That’s impossible.’

  Impossible? Raife could be the Power Ranger of all sleep, the Overlord of lucid dreamland. His reign as High King of dreams is not impossible. It’s a lot more likely than me ever getting to grips with motherfucking ergonomics.

  The shirt system keeps coming. MND took away all my treats, Simon says. All I have is coffee, whiskey and my shirts. I don’t begrudge him a treat. How could I? There are so many shirts I buy a second wardrobe for the twins’ bedroom. I move most of my clothes in there to make room for more shirts. His mother can’t stop buying shirts. How could she? They help him. The shirts clearly help her too. She widens her scope to well-cut jackets, pyjamas, plush cords and trousers that fit just right.

  A big cartoon moon sits over Greystones seafront one night. A big cartoon grin spreads over my face as we stop the car. I’m used to staring out to sea in broad daylight. By night we hear dark waves crashing. This crazy bright beast fills the sky. A mile of moonpath is dancing over dark waters. I fish out my phone to take a photo. That’s why I love the moon. You can’t catch it on a smartphone. On my phone this monster looks the size of a pencil torch. Clever moon.

  You can’t catch MND with ergonomics. Soon after the manual handling course in Co. Louth I am running back and forth between babies in the house. Simon is in his separate studio across the garden. I skid over gravel bringing him tea and fall down some concrete steps. It’s a bad fall. There is nobody to pick me up, so I just lie there. I chuckle at the state of myself. Social workers, come see me now. Ergonomics and systems won’t ever win. They’ll just grind your face into the gravel over and over again.

  Meanwhile the moon and MND keep on dancing.

  Tragic Wives

  My friend Michelle is a warrior. Not just in spirit. I think she is an actual warrior; she may have chain mail under her T-shirt. I’m sure there’s some manner of sword tucked under her pillow.

  I first met Michelle in my boyfriend’s kitchen. She was cooking up a vegan feast in his house. Mouth-watering smells seemed to charge from her fingertips. She could cook for forty people with no more than an old pot and a stick. This tiny dynamo was the dark pretty girlfriend of Simon’s housemate Galen. It was just the four of us for dinner instead of forty, so we ate well.

  Back then, Simon was a waiter. He was spinning plates and stories while studying for a master’s in film. I was working in radio and Galen was the rare beast who lived downstairs, a journalist skipping between social events. He would turn up at all hours, his shirt unbuttoned and tie askew. We gathered regularly to eat mounds of Michelle’s food and laugh as much as possible.

  Michelle is like a cool breeze over solid rock. Whisper her name across the waves. She is Pocahontas-pretty with a wildness behind the eyes. This girl will giggle girlishly and then tell you she works as a forensic psychologist. She deals with so many of the country’s hardcore murderers, criminals and rapists that at work she has a fake name. I imagine her in her job like a suited Clark Kent, all ponytail and black-rimmed spectacles. In work she’s no warrior of the sea. She’s a fine lady called Laura with sensible shoes.

  ‘Momma, remember the time you dreamed Sadie fell down a pothole and you couldn’t catch her because it was so deep and then she died?’ I don’t need to remember my own dreams because my son Raife does it for me. Why on earth did I tell him that about his little sister? Must have been some fine parenting moment. But also, how does he remember it in such detail?

  ‘It’s because I have a golden brain’ is his reply.

  Golden brains make for golden memories. Details are not as important to me as feelings, which is lucky, because I don’t remember details. What year, which month, what time and how long? Who cares? Not me. Memories don’t mind. I claim ownership as long as I can feel it, body and soul.

  The world is big but often small people can walk tall. With her well-seasoned past and a dash of daring, Michelle has swum oceans and climbed mountains. She has thrown street parties in New York. There were rock band road trips on tour buses and adventures in vineyards. No big deal. Michelle took it all in huge strides with those tiny legs.

  There’s a first time for everything. Have you ever felt so alive and inspired that it feels like sparks are coming out your fingertips? Your body is fully charged. You are pumped and fizzling. Your insides sizzle, your gizzard feels cooked and your hair follicles tingle. First times can be fearful or fun or a first-time fusion of both. We had sworn to take the plunge after Galen’s marina swim. I don’t recall the exact date of that first dip with Michelle and Aifric, but the feeling was positively golden.

  Mi
chelle loves dogs. She climbed down a sheer cliff in Greystones once to save a large lurcher stuck on the train tracks. He was carried to safety in her arms and the owner still sends her Christmas cards. She knew those cliffs well from truant school-days perched up there between classes. Like many people, Galen and Michelle took a gap year in Australia with their kids. Unlike many, they shipped a new car home along with a giant purebred white Swiss shepherd called Casper.

  The first time I kissed Simon I got slammed up against a nightclub wall. We went home, stayed up all night with candles around us, talking, talking, more than talking, like there was so much to say we could never stop. His beard ravaged my face raw the next day into four pink points. My four-pointed star he called it. Better than a swim? Oh, well, yes, don’t kid yourself. A swim is not better than this.

  Michelle, Aifric and I huddle on the cove beach, trailing an ever-moving entourage of kids. Under-threes are running amok. Michelle’s war baby Bodhi, sits Buddha-like at the epicentre, stuffed snug in his car seat. With a name like Bodhi he’s a future surfer dude for sure. Or else an accountant. Either way he’ll get some Point Break moments right here. Casper the dog is running hurricane circles around us, the most eager to swim of all.

  Where were you when you found out? We all remember. Galen crashed his bike on the N11 dual carriageway. His head was down, he was pedalling fast. That head hit a parked truck on the hard shoulder so hard, his helmet split in two, along with his spine. Galen’s crash is like our own Greystones JFK or Michael Jackson. Out of disbelief, we all swap stories.

  There is a secret society of the hurt. We harbour pain skilfully under smiles. Observe a subtle strain behind the eyes. A certain tension in the jaw muscles. ‘You grind your teeth in your sleep,’ one night nurse tells me matter-of-factly. The hurt seek each other out wordlessly. We gather on a stony beach that may as well be a deserted car park. Expect some dodgy deals. We swap pain silently like illegal contraband.