In December 1999 the earth spun toward a great shadow marking the end of a millennium and those who relied on mechanical timekeeping began to stack tinned goods into cupboards, terrified the world as we knew it might end. But I have never been concerned about storing food. Instead I helped my disabled daughter move into her own flat. I painted the floor with Grip Guard, organised a handyman to attach a steel bar to the door. My daughter would be able to hit the bar with her electric wheelchair and get in all by herself. A wet Christmas followed, a wet Boxing Day and then we watched the old millennium clap shut on TV. The world didn’t end as the clock struck twelve. Chaos waited, moved at its own speed.
Beside a respirator, steel blue, my daughter fights to breathe. There are iodine smears on her skin. She is unconscious. Time has stopped.
I should have taken better care of her but I was tired. Tired from Christmas, tired from the university course I’d started, tired of caring for her two younger brothers, and looking forward to an adult party where someone else could do the work. Yet I had felt this coming all through the windy day, cool enough to wear a jacket in the Australian summer, the ocean breeze too strong.
Earlier, when I took my youngest son to the rock pool, there had been so many crabs, some as big as my hand. They scuttled, waving crab eyes on thin crab stalks. And then when I was gathering laundry I saw a huge spider clinging to a sheet, a spider as big as a frog. It dropped to the ground and waddled away as the phone began to ring. My daughter was on the end of the line. She’d spilled a cup of tea in her bed. And then suddenly she was crying—about life closing in, about not having children, about wanting to dance just one night until her feet hurt. My mermaid. Knives through her soles.
I wanted to know if her flatmate and part time carer was there. ‘Can I come?’
Yes, the flatmate was in the next room. But no, don’t come.
‘But perhaps this living independently is too much. Perhaps you are ill. I’ll call a doctor.’
No. She wasn’t ill. She hated doctors, said all they did was point a bone at you, tell you which muscles were going to get weaker. She believed if she didn’t look at this disease, didn’t pay it attention, that nothing would change, nothing would get worse.
I rang the wheelchair company to complain about the new footrests for her wheel chair. Hadn’t they arrived yet? This was something that could be fixed. I snapped at the receptionist to find the order and ring me back with a date.
Ten minutes later the phone rang but it wasn’t the wheelchair company; it was my daughter’s flatmate. My daughter had pushed her emergency Vitacall button. An ambulance was on its way.
My daughter is a minnow caught on the end of a line, her mouth bleached and gasping. Nurses are monitoring the oxygen in her blood. There is a tube wedged in her throat. The nurses pat her ribcage until green mucous coughs out. Algae, seaweed. You’d expect that in a fish out of water.
I sing into my daughter’s ear: You’re not sick; you’re just in love and Fly Me to the Moon. Her hands are beautiful. Slim pencil lines. Bars of music, harp strings. She curves them into an angelfish tail.
There are boy’s running shoes scattered in the hall. There are dirty dishes on the table, underwear in the bathroom. I had mowed the lawn before this happened—trimmed the edges around the footpath in a neat straight line. I had unloaded the dishwasher, and in the half hour before my daughter’s flatmate rang, I had been ironing shirts. My husband at the time was starting a new job. I wanted to clear the decks and give him a clear run—fair weather for the ship setting sail. But there is no clear weather. There is only weather rumbling and rolling over the horizon. Clouds and sun, rain and wind. The weather doesn’t know about day or night. Sometimes the sunny day in the forecast falls after daylight is gone.
It always feels as if it is night in ICU. I glance at the boy in the next bed. He leaned too far out on a railway platform and the train breathed him in. Now he can’t breathe any more. But my daughter is still breathing. She rises with the wind as delicately as a leaf. In her dreams she is travelling east to Persia, to China, rising with the sun.
They have brought in a machine to monitor her heart—a gulping noise inside an ocean. I am going down in a submarine, down, down down, surrounded by the strange wind noise of deep waves. Plunging. The bells sound at each depth.
I might need to put on a frogman’s suit. We are so deep. The water is so heavy. It could crush my bones. Sometimes I think even air might crush my daughter’s bones, bird bones, lighter than toothpicks, lighter, lighter, lighter. She is floating above me, nearer the surface. I have been looking in the wrong place, plodding down here on the ocean floor in my frogman’s suit, breathing through a tube. I have been breathing through her tube and listening to submarine gongs.
I am closing up, reserving my energy, turning into a solid rock, holding against the wind, gathering strength for my daughter. I do not want to leave the hospital but I must go home.
I cry when I see the backyard, the grass, the clothesline—the sheets still in the washing machine. The screen door blinks in the afternoon sun. During my absence, rose petals have opened and rusted at their edges and a spider has matted a web into the bougainvillea. I am like the landscape holding still, watching. I am watching my daughter get well. I am willing my daughter to get well.
There is a man in another bed from the Pacific Islands. His family tell a story of how they took him to casualty at Liverpool Hospital. The staff sent him back home. He got sicker so they returned. Within minutes of his second arrival he stopped breathing and would have died if his family had not brought him back.
Now all of this will become a story told at gatherings. Do you remember? And he almost died. They flew him by helicopter to the RPA. We slept in the waiting room.
We sit in the area outside the wards, wishing we could flip to the later pages in the story where the crisis is over—that quieter time when we can laugh again and drink proper coffee and have something amazing to say to each other. Do you remember last year? When you almost died? We were just in time.
We expect that resolution to the story. It’s just our turn to be on this page. But sometimes the turn never ends.
They have taken my daughter off the ventilator and put her on an oxygen mask. Now her face is squashed like a little girl pressed against a shop window. The oxygen machine whistles like a tiny hurricane. She coughs and coughs and they vacuum her lungs.
She is angry with the nurses. She is angry with me. She is not happy getting better. It hurts to surface.
My daughter is scuba diving among fluorescent fish. She comes up for air and coughs once more. The doctors say she will aspirate one day if they don’t put a hole in her throat and seal off the opening to her mouth. If they do this she will be mute and unable to eat. If they do this they can’t guarantee she will be able to survive the operation.
I refuse to float in an imagined nightmare. Today is today is today. I want to gather my daughter into my arms but I’ve never been able to do it properly. Too many bony bits, not enough muscle. There are too many sharp angles with this disease.
She is coming up for air again. They take off the mask, place a thin tube in each nostril. Her mouth is free.
A doctor wants to know if I have told her everything. Have I asked her if anything went wrong would she want to be revived again?
‘You do realise this is a degenerative condition.’
I reply, ‘Life is a degenerative condition. But we’re not dead yet.’
My sister has arrived. My daughter is out of ICU and in a hospital room of her own. We try to lift her to the shower. My sister holds her head. My husband carries her body. I hold the plastic fluid bags and tubes. We joke about being the three stooges nursing her. Still, I long for a normal day. One normal day.
My daughter has an Australian flag tooth-picked into her toast. She is dozing. Simon and Garfunkel are playing on the CD. There are plastic fluid bags that look like jellyfish, a thermometer in a dish, a postcard of the Virgin Mary, a Mount Franklin bottle of holy water with pink plastic tied around the top so we won’t drink it by mistake. Yesterday my sister and I walked from the hospital towards the university grounds. I showed her where I took classes. At the beginning of that course, I had been setting up my daughter’s flat, painting her floor with Grip Guard, sharing tea with her flatmate. Those days when I didn’t know I was happy.
The early morning is not as bright anymore. We have missed the peak of summer. My sister has gone home. The boys are starting school. People have to get back to work.
I am dressed in yellow plastic and white gloves. I crackle when I move. My daughter has golden staph. It came through one of the intravenous lines in her neck. She aches all over and cannot sleep. Neither can I. I find it easiest when I am doing something, settling her feet, knees, hips, arms, shoulders. The hard part is when I relax, drop into a doze, wait for the moan that will drag me back to my feet. Not being able to rest at all would be better.
When she was a baby she never slept. Night after night dipping the dummy into honey. My parents bought her a special rocking cradle and still she would not close her eyes. During the day I would sweep the walk while she screamed and screamed and screamed, her little head foaming. Nothing would make her stop, except me awake, picking her up.
Twenty-four years on and I still wait for the tiny hiccup, every muscle screwed into a knot. Thin fingers claw out for me like tiny crabs.
Don’t touch me any more
Touch me forever
Leave me alone.
My youngest son and his classmate are wearing the same yellow hospital gowns and plastic gloves. They have begun Year Seven at a performing arts school. They dance a corny version of the hula. The nurses have given my daughter an alphabet board because she is unable to speak. She points to letters. She tells her brother he is very funny. Now she wants to hear a song.
My son’s classmate has a high, high sweet voice. He sings with no accompaniment, the notes sailing over the bleeps of medical machines. Young boys. Beautiful young boys.
My eldest son has streaked his hair blonde. He says he wants to feel good again. It is too long being sad and scared. His younger brother is supposed to produce a piece of art that says something about himself. He has drawn a Warhammer figurine. He says it is the best lighting he’s ever done.
My daughter wants to get better. She has refused the surgeon’s recommendation. She will eat despite the risk. Today she pulls herself into a half-sitting position using the toilet chair and counts to thirty. ‘I will get better.’
We listen to Carole King as I wrap her hair around rollers. She asks me to buy red and yellow cellophane, and a sparkle pen. She is going to make Valentine cards.
I return home. The nurses tell me I need to sleep in my own bed. I hang out the wash, take it back down again. Fold sunlight into sheets, press T-shirts to my nose.
The nurse rings in the dead of night. My first proper night in my bed and I am lost in brambles, pricked with thorns. ‘What? What?’ The nurse hands the receiver to my daughter. She is shrieking, squeaking into the phone.
I shout, ‘I know you are sicker than me. But there are millions sicker than me and I must sleep. I must eat. And the truth is you may need to be uncomfortable for a moment because other people are human.’
I yell. Then I soothe. I draw a fine line between both of us.
And then rub it out again.
This has always been on the horizon. The drooping mouth when she was a toddler, the winged scapula when she was six years old. I saw the bones stick out when she was in the bathtub and then didn’t look again.
My friend Cathy says, ‘Whenever I screamed in pain my mother hit me.’ Don’t scream like that. You frighten me.
I remember falling off my bike when I was ten and my mother’s angry face. What did you do to yourself? She scrubbed the grit out of my arm with a hard face washer, her eyes filled with terror.
There is a sign above the cashier in the medical centre parking lot. It says, ‘Your mission today is to dazzle every customer.’
We have bought my daughter so many things to keep her grounded in this world…necklaces, teddy bears, soaps, scents, lamps, clothes…and yet she still eludes us. She is so slender, a piece of quicksilver; everything is too heavy for her to wear or carry. Yet we collect these things—as evidence that she is here.
I take a bath. My knees sink into the water like two small white islands slipping below the surface tension. That thin skin of molecules that holds a spider skating on a pond.
I stay at the hospital for four-hour shifts. My battery will only last that long. My daughter holds hard to that last fifteen minutes, stretching them out until I become a broken toy monkey playing a drum—rat-a-tat-tat. And then she’ll want something else and I’ll try too hard to do this ONE LAST THING. And no matter how I do it—it won’t be right. I will have hurt her and she will be sore—her neck, her shoulders. I go home feeling bad.
See, I will not forget you…
I have carved you on the palm of my hand.
Today I find this little card on the dressing table beside her bed. Someone has left it. There is a drawing of a hand cradling a child.
A cloud of rosellas fly by the window and then an ibis sailing. It is late summer. A young man has delivered breakfast. The trolley rolls away. Hospital sounds. Cleaners. A mop and a pail.
My daughter breathes quietly into her mask. I love to slip beside her, curl my hands through her long fingers. I love it when she squeezes back. Happy to see me. I am happy to see her.
Some wish to frame their lives in inevitable death. My daughter was diagnosed with Facioscapulohumeral muscular dystrophy when she was five. That spiralling story towards her demise. This is where she is headed—why fool anyone with the in-between stage? Yet in doing so they would fool the very nature of life.
Genetic specialists want to take my blood. They want me to ring my parents in Canada and request they have their blood tested as well.
I stare at a picture of my daughter’s senior high school class. A special school. There is the clumsy giant boy and the student with no bones flopped in a chair. Ripley’s Believe it or Not.
I am a wingless, soundless moth holding my breath, my heart barely shivering. I am shaking forever without moving a muscle—a blurry hush in the dark.
Autumn. My daughter is going home. There is no more to be done. She can talk again but still she cannot sit up, even with a body brace. She has come up with an idea to modify her wheelchair. The backrest is lowered. The arm rests reversed. She lies over the seat prone, her arms stretched to reach the remote control. She says she will pretend that she is an actress who has had a skiing accident. She asks me to paint her fingernails. She wants to go shopping again.
Big brown leaves scatter over the road. My daughter has found a shop in the city that sells dark chocolate and ginger. She takes me there, wearing her dark blue scarf and black gloves. We manoeuvre the wheelchair through crowded streets and come to a crossing that is gridlocked with traffic. When the light turns green people squeeze between cars but there is no room for a wheelchair.
A young man comes to our rescue, almost challenging drivers to a duel. ‘See what you’ve done!’ he screams, as if they have put my daughter in the wheelchair, given her this disease. Cars inch out of our way.
Another boy saves her when the lock is jammed on a disabled toilet. He bangs on the centre management’s door and comes back with a man carrying a drill.
My daughter’s life is full of heroes. Men bring her yellow roses in the street. They can’t bear her being so beautiful.
The cooler ocean water is the colour of opal. The crabs now huddle in cracks, some green—some almost black. I float like a flat frog skimming the surface. I used to be scared of cold water. My breath would come too fast. I might die.
I am not scared of dying. Sometimes I walk out in to the road without looking.
The results of my blood tests have come back conclusive. I have deletions in my genes, a mutation that occurred at my conception. My mother is silent on the telephone. My sister reads up on the science. In a white office the researchers show me sheets of paper, the rows like bar codes on the side of a jar of jam. They point at the missing dots. I imagine rows of teeth falling out, a pearl necklace with missing beads, a chewed string at the bottom of a jewellery box.
My daughter is none of these things. She draws wonderful designs lying on her stomach, and I continue with my university course. I am learning about post-modernism, the end of grand narratives. Was ours a grand narrative? I only know that I have muscular dystrophy too—ever so slightly—and that this is my beloved daughter. We go to cafes and the Art Gallery, visit designer shops. We are truly adaptable, mutating, deconstructing, falling apart into something else. The deletions widen. We laugh at people who stare.
There will be more to come. My husband will find this all too relentless and leave. The muscular dystrophy will progress. But my daughter would agree that this is the best place to end this particular story. Time stopped here. This sweet memory that is at the truth of things.
Carol Major was born in Scotland, immigrated to Canada as a schoolgirl and now lives in the Blue Mountains, Australia, a place that captures three landscapes in one. The heart in geography is one of her passions and in addition to writing short stories and novels, she consults on the importance of retaining a sense of place within urban design. Carol holds a master and doctorate degree in creative writing from the University of Technology, Sydney and her work has been published in a variety of formats in Canadian and Australian literary magazines, performance pieces and anthologies.