I Found My Tribe

by Ruth Fitzmaurice

  I was a bridesmaid at a friend’s wedding. At the hen party, we spent happy hours in a pottery cafe. I painted a plate for Simon inspired by my favourite Winnie-the-Pooh quote. Piglet sits quivering on a windy day. ‘ “Supposing a tree fell down, Pooh, when we were underneath it?” “Supposing it didn’t,” said Pooh after careful thought.’ Pooh and Piglet hold hands in silhouette on my plate, surrounded by swirly orange and yellow blobs. The words ‘Supposing it didn’t’ circle their feet. That plate has stayed with us from house to house and now stands guard over the boys’ bunk beds.

  Marian has crashed her car and is in the emergency room. When I get the call I go numb. My brain gets bossy and tells me to get up and go to her because I cannot just sit at home. I frantically think of things Marian likes. Nice books get grabbed from our bookshelves and I race to Tesco for a bag of hot chicken wings. Marian loves spicy chicken wings.

  ‘I wish he was the Dadda in the olden days. He just turned into a different Dadda because it wasn’t the olden days any more,’ Sadie reasons. ‘How long is it gonna be till the olden days again?’ I carry my beautiful girl to bed, stroking her hair. ‘It’s OK to feel sad, everyone gets sad sometimes. I will always love you, Sadie,’ I croon into her curls. ‘Everyone loves me in this town,’ she yawns, eyes heavy on her pillow. ‘Yes, Sadie, everyone in this town loves you,’ I chuckle. ‘I don’t want to grow up because my pyjamas are still only tiny,’ she mumbles, falling into that deep sleep of the emotionally spent. Tears still cling to her lashes. Hunter snores beside her, dreaming of dogs.

  The emergency room is a horrible hellish place and I know it so well. Moans and shouts mix with the constant scrape of cubicle curtains that open and close. Overworked hospital staff march around beds. They look more like stressed-out plumbers, frantically patching up leaks. This is no hospital, we are in Purgatory, a waiting place between worlds. I have lost days in here with Simon. Time has no meaning in this brightly lit land. There are no windows. Large headaches loom under long fluorescent strip lights.

  I snake expertly through beds, searching for Marian. There is sadness in the knowledge that I can navigate these floors with such ease. So many nurses and staff send a nod my way because they know me. A good handful have been through my home. Knickers hanging on my kitchen clothes horse are known to them by colour. They could probably pinpoint the exact patterns on all my pyjamas.

  I fall upon her family standing startled around a bed. This is a body I don’t recognise. Marian’s face is bloated and bruised. Her small frame is twisted around a back brace and she is groaning in agony. ‘I brought chicken wings,’ I falter, holding them aloft like a fool. The idea that Marian could read books or eat chicken wings right now is completely insane. Her husband takes the chicken politely. ‘They’re still a bit warm,’ I add hopefully. His smile conveys thanks, like all he’s ever wanted is this rapidly cooling bag of congealed wings. In that moment, meeting him for the first time, I know he is a kind man. I ramble nonsense, deposit my reading material and leave, feeling utterly useless. This is how our friends felt when Simon got sick, I realise, running from the place. God, it feels totally shit.

  After three weeks in Purgatory, Marian is sent home with a fractured vertebra. I visit her house in Wicklow and this time I bring cake. The door is opened by a broken woman who can barely walk. I am horrified that she even answered the door. She shuffles back to the kitchen and insists on making tea. Her hands can’t even lift the kettle. Black pools of pain are clouding her eyes. All of her lightness is gone. She forces a smile that tells me this angel is now living in Hell.

  ‘Oh, Ruth, it was so violent.’ She shivers, talking about the accident. She covers her eyes with both hands, like a frightened child. A car came out from a slip road too fast and she swerved to avoid it. Hitting the motorway middle barrier, her car flipped three times. She had unclicked her seat belt moments earlier to reach for something and got thrown from the car window like a rag. Her body was left broken on the road.

  Marian’s car is like Mary Poppins’s carpet bag. From toilet rolls to spare teabags, light bulbs, motion-sensor bathroom lights and boxes of chocolate Weetos, Marian can fetch any household shortage straight from her car. Coat stands and tassled lamps wouldn’t surprise me either. All of these things got thrown on to the road with her, along with the pretty pink cardigan she was knitting for Sadie. ‘You must have blacked out,’ I pleaded. No, she was awake the entire time. She lay on the road and one of her first thoughts was, who will mind Simon now? When the ambulance arrived she yelled at them to get Sadie’s knitting off the road.

  ‘I’m not going anywhere,’ Marian promised me once. My eyes tear up at the memory. Marian may never be fit to nurse again. Books and newspapers are piled on her precious piano in the sitting room, because she can no longer play. ‘I’m not going anywhere,’ I want to promise back, but I can’t find the words. Fractured lives with nurses and ventilators mean I can never promise anything. Tomorrow doesn’t exist yet and I won’t be held by promises.

  I go home to my children who are beating the crap out of each other. ‘Something bad happened,’ says Arden ominously. We go to the bedroom. Three boys stand in collective culpable silence. My Winnie-the-Pooh plate lies shattered in pieces. A stray shoe hit and smashed it to the floor. The plate is broken and suddenly I just break along with it. I kneel on the floor, spilling tears with crumbling delft. Why am I crying? It’s only a thing, I scold myself. Eyes still gushing, I try to glue the pieces, but my vision is blurry. Swirly blobs of yellow and orange are too cracked. I can’t glue them back properly. Everything breaks. I feel so damaged, glued, chipped and not the same. ‘Supposing it didn’t’? Oh shut up, Pooh Bear – go run off with Disney. It bloody well just did and there’s no supposing. I wearily hang the wonky plate back up again. It clings precariously to the wall but doesn’t fall.

  We go to the cove and the children run. Arden has been silent since the plate incident. Cross words were exchanged. I sit gloomily on a rock and look out to sea. The water looks harsh and formidable. I shiver and don’t feel like swimming. New nurses will come and change the shape of our home again. I miss Marian so much. Nobody could understand. I stare at impossible big waves and brush away tears so the kids can’t see. Even those closest to us have their own lives. They have hobbies and trips to escape to, partners who share tasks, a daily routine that doesn’t include us. I crave those escapes. Our routine is us and we are exhausting to live with.

  Arden walks alone near the water’s edge. He is my hardy beachcomber boy with a cowboy heart. All good cowboys like to stand solo, just a few steps out of reach. Some fragments still hold joy. I think of Simon’s magic pocket on his pyjamas. We fill it with treats for little hands to find. Five in the bed with him watch Britain’s Got Talent, laughing at performing dogs and daring tricks. These fragments sit like stones in my pocket. Today’s pain has a shape too solid.

  I feel sadness on a deep level, deeper than skin and veins and death. Clock hands circling time are overwhelming and endless. The sea looks so rough it might hurt, so I breathe in the salt air and stare at the rocks. Arden strolls up behind me. He places something in my hand without speaking. I look down in surprise. Three beautiful bits of sea glass gleam in my palm. He grins a cheeky grin. ‘Does this mean we’re friends again?’ I hiccup, openly crying now. ‘Yes!’ he shouts into the wind, already walking away.

  I smile as my soul soars out to sea. A cowboy will always break your heart. With cowboys you are at least guaranteed a good clean break. My heart is in sea-glass pieces and I am saved. I hold on to my new fragments that sparkle like diamonds.

  Christmas

  When you live with MND, milestones become difficult. We wander shell-shocked along uneven roads. Milestones at regular intervals bring you out in full body sweats. Birthdays and Christmas are such heavy rocks. They can’t be ignored and feel too cumbersome to carry.

  We’ve spent most of our MND years struggling with Christmas. Coming from two equally Christmas-obs
essed families, Simon and I harboured Yuletide yearnings all year round. From the first, we divvied up holiday time like junkies.

  It is probably way cooler to dismiss Christmas as an existential distraction. Cynics cry that Christmas is just one more colourful way to avoid the fact that we’re all going to die. Drown them out with a Wham! tune, will you? Bring out the cherished Christmas Number Ones compilation. We’re too distracted in our Christmas jumpers, kissing under mistletoe, to notice.

  I was always a Christmas fool. I believe in magic. I believed in Santa until my mother took me aside at a shocking age. I was stubborn, even after my brothers showed me secret presents. I still squint to make sure the lights are evenly distributed on the tree and get lost in a shaft of sparkly tinsel.

  Birthdays are approached like battlegrounds. For Simon’s birthday we dice with different designs. Dice can often leave you at a loss so just roll with it. For the man who can’t eat, one year we make a playdough cake. The twins try and eat it for him. What do you buy the man who cannot move, taste or smell? Coffee, whiskey and DVDs, please. If we’re really stumped, there’s always socks.

  Christmas became difficult. Families felt awkward eating around tables. Their good hearts tried to keep everything the same. Meals were subtly restructured with buffets, but our faces were strained. Seeing how different we were from our siblings’ laughing family units hurt the most. I marvelled at the ease of other couples. There even seemed to be joy in their arguments.

  For Simon’s 40th in September, I have to think bigger. I want to rock his world. Aifric puts me in touch with an artist friend of her sister. I paint the wall outside our bedroom window white, muttering about grey depressing brick. My idea is to paint a mural so the man in the bed has a magical view. Our new artist friend Mick has more mind-blowing ideas. He gathers pieces from fellow artists all around Dublin to be hung on the wall in rotation, so that Simon’s view will constantly change.

  After silently munching croissants in the kitchen, a crowd gathers at the bedroom door. We pull back the curtains to reveal Mick’s beautiful wood sculpture depicting the two main characters from Simon’s film. A procession of sparkler-holding children march by the window, waving and smiling. There are several technical glitches with sound as Hunter keeps pressing the CD buttons. Glitches are to be expected when you work with children.

  Art is on the move, outside the window, swift and fast, passed by Aifric, with baby on hip, to Simon’s brother-in-law, who straightens each piece. I read out the name of each artist to lots of oohing and aahing. Aifric’s husband Phil has made a large portrait of our five children sitting on grass. They point up to a magical cloud castle in the sky. This one has the birthday boy in tears.

  It is our biggest birthday success, and it’s all over in ten minutes. Simon leaves with his nurses for the film set because he is no longer the man in the bed. The film director doesn’t need a new view. He’s making his own.

  ‘ISN’T THERE ANYONE WHO KNOWS WHAT CHRISTMAS IS ALL ABOUT?’

  So roared Charlie Brown in his 1960s Christmas movie. His buddy Linus, with the blanket, gave a speech about baby Jesus and the King of Kings. But it wasn’t the answer I was looking for. I love the way Charlie shouts this in a moment of pure anguish. I never understood anguish at Christmas until our cuddly Christmas blanket got pulled away. Anguish is the draught that leaves you cold and shivery.

  These days Christmas presents are badly wrapped. We have a nurse roster ripped full of holes. There is far too much Sellotape. Holiday nurses arrive who don’t know Simon. Often they lack a certain luminance, like lost Christmas ghosts. They drift between jobs for the season and sleep in lonely agency hostels. It might be unkind to say that many of them are total weirdos.

  We have room-for-rent smiles on our faces as the Christmas nurses wander in. Some are bad nurses you want to bat back out the door. Nurse roster? There is no nurse roster. January looks like Swiss cheese. I’d be better off standing on street corners. HEY! You’ve got a nice face! Come with me and join our family!

  This living situation hurts. But isn’t that just so boring? Pain is so boring now. I come home and a new carer has pulled out my entire wardrobe and laid it on the bed to be tidied. I am a messy girl. She pulls my things apart and puts them back together better, neater, lovelier. Her smile is so kindly. I am horrified, violated and then laughing, because it’s absurd. This is so absurd I can’t even get offended. Also, it is so much tidier.

  With Simon’s birthdays, I am armed for battle. With my own, I run for cover. People keep buying me plants. My heart plummets in the knowledge that without Marian, these plants are doomed to die. Simon is assisted by family in buying and wrapping my presents. Written by another hand and wrapped so neatly, they bring me no joy. His family means well, but this hurts. I shove my heart into my boots and pull the laces up tight. If this is the way presents have to be, I would rather have none. Perhaps that is childish, but it is too large a reminder of all my husband cannot do. I don’t want presents passed through many hands. I don’t want anything. I’m no martyr, I am actually high maintenance because all I want is love.

  We should have turned into some kind of resentful, warped Grinch monster of anarchy, hating Christmas shitness. Yet somehow, this time of year still gets me. I’m not even religious. I still believe in magic. I don’t know how after everything that has happened to us. At the annual school carol service I wonder if it’s all that collective singing togetherness.

  Christmas time tickles me into comas of confusion with sick kids, no nurses and a blur of Christmas adverts on the radio that make me want to smash something. Like many worries, the prospect of Christmas looms larger than the reality.

  When Christmas Day finally hits, it is so busy. We get Simon to his family in one piece. The boys and I build a train table for Hunter that fills up our entire hall. Jack, Raife and Arden sport fake moustaches and laser guns from their Santa stockings. They happily stalk each other around the house. Every time I turn around Raife has new lip fluff of different colour and shape.

  Sadie runs down the hall shouting, ‘THIS IS THE BEST CHRISTMAS EVER!!!’ I laugh knowing that nothing I did really deserved that. Her words come purely from her own enthusiasm. She could have a zombie-flesh-eating catatonic mother and she would still be shouting it.

  During the holidays, I get into a Christmas sea so cold my hands shake for an hour afterwards. Raife and I go to the shops. He has to use my card to pay for stuff because hand tremors inhibit my key punches. Quaking crazy fists can’t even hold the card. We laugh like proper turn-your-stomach-inside-out kids. The deadpan guy behind the counter looks at us, slightly baffled. ‘Are you cold or something?’ he asks. Maybe it’s my blue lips.

  Some things never change. My favourite part of Christmas has always been that dregs of the day moment when the shine wears off. Families fuelled by alcohol fall back into the roles and stereotypes they carry for life. I am immersed in the same sibling fights. The same unspoken resentments linger. Messy midnight charades end in age-old arguments and childish huffs.

  Sleigh bells ring to the quiet revelation that the perfect lives of our siblings are not always so happy. Couples stress and snap at each other. Are you listening? I love all these people to my very bones. Living in this vortex of no nurses and endless days in pyjamas, I think that leading a vaguely unhappy, normal, stressed and snappy life might be nice to try some time, just for a few weeks. Then I find a really good murder mystery book to dive into and I stop thinking so much altogether.

  When my birthday comes around, Phil and Aifric visit after Simon has returned to bed. Phil is always named first because, phonetically, they must avoid becoming ‘African Phil’. We drink wine until Phil, ever the gentleman, bows out gracefully to facilitate girlie chats. By candlelight and red wine, we reminisce in a way unique to those who’ve been friends since the age of three. There is an ease of shared space and a deep appreciation of each other’s company. We laugh and cry and whisper as only girls can.


  It is 5 a.m. when Aifric finally shuffles out the door. ‘You were always so cool and aloof in school,’ she declares. ‘Like you didn’t need anyone. As a friend that made you so attractive.’ Perhaps I really am a wolf, I marvel. Aloofness back then merely masked a girl who was painfully shy. The birthday martyr just got all the love she could need. I am drunk. Thank God for my Wishing-Well Friend.

  Another Christmas is over as tree baubles hang heavy and branches begin to sag. The hoover sucks up the fallen needles with a satisfying noisy finality. The weight of another milestone has lifted. Sadie storms into the kitchen and roars cross-eyed with tiredness, ‘GIVE ME SOMETHING TO EAT OR CHRISTMAS IS RUINED!’ Oh fickle-hearted maiden. I’m laughing more than the Best Christmas Ever.

  Bed

  ‘I think I might be in love’, says Raife, matter-of-factly. ‘A girl in school keeps bumping into me.’

  ‘Does it feel like your heart falls into your stomach when you look at her?’ asks Jack quietly.

  ‘YES!’ shouts Raife. ‘But how did YOU know that, Jack?’

  ‘Oh there was a girl in France by the pool,’ sighs Jack. ‘I never talked to her, I just looked at her from far away.’

  Years before Simon and I kissed, I fell asleep at a student party. My drunken body crashed out on the nearest empty bed. I woke in the morning with a fright. A man’s face was facing mine and it wasn’t my boyfriend’s. Our noses were nearly touching. Simon had crawled into the space between me and the wall, to sleep beside me during the night. He would later claim drunken innocence. I fled before he woke up because I had no choice. My heart was falling into my stomach repeatedly. His body had deliberately bumped into mine. That handsome face lingered with me for weeks.