by Nia Wyn
Doctors call it a question of statistics; one in forty children is severely disabled for life, they say, and often there’s no rhyme or reason. Friends say bad things happen to good people—life’s a bitch! Others say God chooses special parents for special children. Alex laughs when he hears this one. He says he still remembers his press trip to the orphanages in Minsk, where thousands of special children lay abandoned in iron cots, staring at the ceiling all day long.
There are 8.6 million disabled people in Britain and at least 610 million disabled people worldwide. Fifteen to twenty percent of every country’s population are affected and yet the views and words society uses to define them still have the power to single them out.
They’re all dis words—disabled, dystonic, diseased—words that set them apart, at best turning them into beggars—handi(n)capped— and at worst negating them as people—invalid!
These words steal humanity,
reflecting views like those toward Jews in the Holocaust, and those
toward “blacks”
for a century.
Alex says people think that Joe is beautiful, and that he doesn’t give a damn what they think anyway.
I think he’s beautiful, too, but I wish I could be more like Alex.
Sometimes when we pattern, moving arms and legs in perfect choreography, singing songs with faultless timing, we’re like one, Alex and me. Dashing in and out of light rooms, passing Joe between us, ticking off exercises on the very same list.
We share one heart; we share one will.
And sometimes we’re such separated souls. When he wants the radio and I want peace. When I want to explore Joe’s condition from every angle and he wants to talk about something else. He says I never do that anymore.
There are times we only seem to see the gaps in each other.
Times we take our bodies off at night, and hang them by the bed.
Alex says there’s nothing worse than being with someone you love and watching the distance grow between you.
Sometimes I think distance and closeness are the very same thing.
The counselor in the city says our grief is “tangible,” but I know that he has no idea how it feels.
When we saw him, he asked if we’d mind being watched behind his two-way mirror for learning purposes. He had freshly combed brown hair, and had just had a holiday with his wife and kids in Ireland, which he said was “simply wonderful.”
We were worlds apart.
The counselor says we have shrunk our grief into our ever-increasing therapies, and that somewhere in the process we have shrunk ourselves. He says we should make a list to plan in time to be together, but our walls are covered in lists. There’s no space left.
It’s too late to piece back together what is falling apart. Perhaps I don’t want to deep down. Perhaps there just isn’t the time.
The counselor told us to pull the two soft leather armchairs closer together when we talked, but we both looked out through the window, Alex and I.
Alex said he wanted order, and that his life and his home were in chaos, that he missed jobs racing home to pattern with me and had fallen a month behind on invoicing.
Alex said he felt damned if we continued Joe’s therapies, and damned if we didn’t. He said it was like we’d been given “a life sentence, ” with no explanation of what we’d done to deserve it.
Alex said he wanted to be loved, the way he used to feel loved. It feels misty inside me. I think it might stay this way forever. I am losing him and feel I have no choice.
The counselor says I do have a choice. He says it’s my choice to fight Joe’s odds, whatever the cost; a choice perhaps most people wouldn’t take. He says it might not seem to me like I have a choice, but it is my choice all the same.
He says clever things, the counselor. I think he knows a lot about grief; but I don’t think he’s ever felt it.
I don’t think he’s touched it at all.
The children I meet at the hospice are dying when I go to visit. It is called Ty Hafan—Summer House—and children die here all the time.
There is a Jacuzzi and a sensory room for children who are blind and deaf, which has vibrating chairs and cushions. There are wheelchairs more like sofa beds, carers with smiles on their faces and bedrooms for parents, far enough away to sleep all night.
Joe is not dying. I just need a good night’s sleep, and so does Alex, who has stayed behind at home.
Joe looks lucky to me here, among these children who are breaking down and dying. So full of life, so full of future. I understand here what it means to have a future.
When I get home, Alex says it’s been a long weekend. He has tidied the light room and made a swing out of climbing ropes, net and carabiners, which hangs from the center of the ceiling in the front bedroom.
We lie Joe on his tummy inside it, turning the rope, and we sit together for a while, just holding hands, as Joe flies round the room like Peter Pan.
If I hadn’t been sitting in the kitchen, lifting his hand up and down, tapping it absentmindedly on the table along to the nursery rhymes, I’d have missed this moment.
If the phone hadn’t rung in the middle of his favorite tune, and I hadn’t been looking in his direction when I answered it, I’d have missed the split second he raised his fist to tap without me.
It would have been just another ordinary day.
But on ordinary days, the most extraordinary things can happen. Almost by accident, in a flash, we discover a way to break through.
“Tap once for yes,” I said, lifting his hand and dropping it once on the table. “This is twice. Tap twice for no.”
“Do you want a drink?”
No!
“A cuddle?”
No!
“More music?”
Yes!
“Do you know how much I love you, Joe?”
“Yes,” he tapped.
Today we have been talking, Joe and I. I’m sure he understands everything I say.
I started a new section in my little gold book tonight. “Notes on a Resurrection,” I’ve called it, and it’s already almost full with fresh ideas and games to play.
I call him by a new name in these notes.
As if he’s crossed some divide in my mind,
as if he’s been born again.
(Winter 2000)
WHEN ALEX left, the sky looked bleached out in Market Road. He got a flat across the city, and as soon as he got there he phoned to say he wanted to come back. He said he wanted me to ask him. He said he didn’t know what he wanted anymore.
He’s lost more weight; he’s fallen further behind on invoicing.
When Alex left, the place gaped open with emptiness. It felt like a storm had swept through a house the birds had made, and ripped it apart.
I took Joe out shopping, the day the sky was white in Market Road. I pushed him into town and wandered about for a while in the drafty arcades.
I bought a top,
had a coffee,
and in Mothercare’s changing rooms,
I curled up and wept.
Waking in separate beds across the city, we think of each other, Alex and I. I can sense it and I wish he were here.
It’s peaceful without him. No arguments, no sport on the radio.
I think of him late at night, too, when I look round the living room.
At the flowered tablecloth slung over the hard-backed chair, at the manuals about brain damage and cerebral palsy, flanking the poetry shelves like bookends.
I think about the things he thought and saw. My hollow eyes emerging from the light room, and the curve of my back as I cuddled Joe at night.
He comes three times or so a day to pattern and to play with Joe. The rest of the sessions I do with Judit, or with anyone else who offers—friends passing through, neighbors sometimes, parents.
But on the whole it’s Alex opposite me at the table, moving arms and legs and smiling down at him.
In the mornings now, when I�
��m getting him dressed, we listen to Mozart, Joe and me. A site on the Web says it’s good for healing. After that we sit at the piano together and I name the keys. I paste orange, luminous dots all over them, but still he can’t see them. I wear my sparkly wig and red lipstick in the light room; but still he prefers to commune with the angels.
I keep my books in perfect order this winter. At the back are my lists of daily schedules and appointments, all covered still in check marks, but sometimes I imagine that I won’t heal him now. That the endless stream of therapies cannot unbreak us, and that nothing whole will ever come of two such broken people.
At night I play solitaire: “If this works out he’ll talk,” I whisper to the computer; “If this works out he’ll walk . . . his vision will come . . . his hands will improve.” Sometimes the cards work out, but more often they don’t. “If this works out he’ll be happy anyway,” I whisper then. “If this works out all these games mean nothing at all.”
The health visitor says I need to look after myself more, that I look skinny, ill, and can have home help if I want it. I do. I’m getting used to them now—Kyra, small, smart and reserved, and Jenny, tall and like a party, getting the shopping in, and tidying around me as I do Joe’s therapies. They make cups of tea and will even pattern if I ask.
There are times I wonder if I’d cope without them.
Times like now, when the front door bangs and the rose petals blow up the hall, and fall like dying ballerinas all about me.
Times when the washing turns somersaults on the line, and I watch it with Joe in my arms like an anchor.
My brother says it is a sign of strength, not weakness, to accept help.
The weatherman says there’s been a fall in sunlight.
At the press ball, Alex says he’s still in love with me.
He says it means the world to him that I’ve come out in my shimmering frock and big smile—old style.
He can put his troubles aside, Alex. Talk and mingle, joke and laugh with the people I once used to mingle with.
He’s stayed the same and still treats me like a girl to be proud of.
We swirl round the dance floor, round and round in each other’s arms, and it feels in this moment that we are exactly who we are again.
I don’t recognize myself when I go to the ladies’.
The yellow, sunken cheekbone,
the face out of focus on the mirror’s edge.
(The Moorings)
We sing carols round the patterning table, Mum and Dad and I.
We take it in turns in the light room, passing Joe from knee to knee and telling him stories.
I visit the local healers.
I take him to the pantomime with Carol, Aurelia, Ambra and Teo, and William, Hari and LiIli, but it is far too much for him. His arms flail and he screams at the noise, and so we sit out in the foyer, listening to the distant echoes of boos and cheers.
When Angela, my friend from school, comes this Christmas, we lounge round my bedroom like we’ve always done since we’ve been small. She says it’s the worst she’s ever seen me, but that I’ll come through it. She tells me she’s only really loved two people in her life, that her husband is one and I am the other, so she’ll make damn sure I come through it.
When Alex calls to wish me Happy New Year, we run out of things to say before the chimes have finished.
My dad says I should come home with Joe next year. He says I need to find myself again.
I walked with him today, through the empty arcades by the sea, and he talked about a book I kept when I was young. “All the words I’ve ever loved,” I called it, and I kept it with me till I lost it on a bus to Whitley Bay.
He said it might help to write,
but I can’t think of any words I like anymore.
My dad said I just needed to find them again.
(New Year 2001, Market Road)
Usually he is walking toward me, taking those first, few wobbly steps, and I am clapping, spellbound.
There are always other people around, neighbors and half-forgotten school friends, who nod at me gently and say, “There you are, there you are,” as if they’d known all along he would do it. Sometimes they don’t notice him at all and I am waving my arms at them, wanting them to share these brief, magical moments, when dreams are so real.
Mornings are the worst of times.
I wake from these dreams to the numb sensation of Joe’s curled-up body in my side, unable to move an inch until I lift him into my arms to start the day.
Alex says he dreams, too, now we’re apart. He is always in a busy high street and Joe is walking ahead, away from him, through crowds of people. He says he sees everything at a knee-high eye level; the swinging hands and the children’s faces that he totters past.
He says the light is always extraordinary when he dreams of Joe. That the hours in our light room have changed the way he thinks of light now, but in his dreams, it’s always beautiful and life feels like a nightmare when he wakes.
Sometimes I think we’re closer than we realize, Alex and I.
When we wake perhaps or when we’re moving arms and legs.
When we’re lost in the soft, dark layers as Joe sees, talks and walks through our dreams.
Sian blows in with the wind one bright February morning, like a new beginning.
When I first called the agency in town to ask for a babysitter, and was told they provided “respite workers” to mothers like me and “care assistants” to children like Joe, I decided against it—it made me feel like I was failing him.
Now I need a break, whatever they call it.
I’m not sure what to make of Sian, this sylphlike waif with cascading chestnut hair who collapses around the place in fits of giggles and forgets her bag or coat each time she leaves.
She brings a whole new wavelength to Market Road.
She has a way about her, Sian,
she is happy.
Joe adores her. He dissolves in her arms like new love.
Perhaps people never truly know how the things they say and do affect another inside. What work they do, just by being who they are.
I don’t know if Sian knows what it means to me when I see the way she talks and plays with Joe, and when the sound of their laughter reaches me as I’m lying, quietly listening, on my bed.
How her throwaway comments heal wounds I didn’t know I had.
The casual way she calls him beautiful, and says she sometimes likes to pretend he’s her son when she takes him out.
The way she doesn’t look for milestones,
and her great love of small things.
I turn left at the end of Market Road to get to Thompson Park. I prefer it to Pontcanna Fields. It has no swings and slides and there are better things to look at. Covert meetings between camp men, a statue of Eros, and a tree with an old man’s face carved into its trunk.
I sit Joe in front of this tree and stand behind it, playing peep-bo round the sides when noone’s looking. I’m still trying to get him to look at me.
Now and again these days I think he sees my shadow. He has started to squint at the sunshine.
(Spring 2001)
It doesn’t happen, the impossible, the doctors say.
But this day, after so, so many,
when we’re up in the light room,
his small white fist rises in the darkness
and touches the light.
I guess we should call it a miracle—sight—in the eyes of our once-blind child.
My mother says it feels magical,
like the seasons have found a way to answer us,
like the earth has read our buried prayers.
My father says it’s amazing what hard work, love and faith can bring.
It is amazing.
Never has the world looked more beautiful,
than it does to me this spring.
THERE IS a letter from Gratia in March. I read it at the kitchen table.
It says that Ioho Blue has di
ed. That one day last month, he just stopped breathing.
He was two years and nine months old, and was buried in his Sex Pistols T-shirt with crystals in his hands at the Valley of the Great King in La Gomera.
Gratia says she stayed up all night in the garden of remembrance, singing him songs until the daybreak.
She says it’s so important to appreciate what we have, while we still have it.
Easter is early, with thunderous showers. Joe likes listening to them, the sudden cracks of lightning and the scattering hail upon the windows. He likes the singing in the chapel across the road, and he likes it when Sian comes, all cold and wet and warm with happy stories.
There are new routines in Market Road. Sian helps me now. At mealtimes we push the food into the corners of his mouth to encourage him to chew, and spread manuka honey on his lips to help him place his tongue.
At bedtime, we play his auditory integration tape, which claims to help the speech center in the brain. This strange, foreign music lasts for ten minutes and he makes a howling sound when he listens through the earphones.
The speech therapist says this therapy is all “pie in the sky— unproven,” but I think it does something and Sian agrees. She helps with everything, Sian—the tapes, the patterning, the light room. She remembers everything I teach her—and still forgets her coat each time she leaves.
I stop going to the oxygen tanks. It doesn’t feel right anymore. I don’t know why. Instead, Joe has music therapy with a happy, clappy duo from the Touch Trust. They bring drums and tambourines, and he lies on the mat between them, laughing.
I still take him to the special nursery out of town, tooting my horn as we go round the windy bends of Star Lane. “More,” I say, “shout more and I’ll toot again,” but he sits in his car seat behind me, furiously tapping his hand on his knee.
Sue from Bristol has sent white gloves from America, which light up in the dark, and now and again I watch with awe as his small stiff hand meets mine in the darkness.
Joanna has sent more pictures, everyday objects, in luminous reds and yellows, pinks and blues, oranges, purples, greens. Every color of the rainbow.
