Letter to Louis

by Alison White

  A man running the controls steps out from his small cubicle and calls across to us from the other platform.

  ‘Not on this one or the next, I’m afraid.’

  There are people queuing on his side of the platform. They are spaced along the platform in pews ready to enter the carriages once they have emptied.

  ‘Where would you like to sit? I’ll reserve the space in two go’s time.’

  ‘Where do you want to sit, Louis?’

  ‘The front,’ you mutter into your lap.

  ‘Sorry?’ the man asks. ‘Where?’

  ‘Louis would like to sit at the front.’

  ‘Okay, mate. I’ll save that one for you.’

  *

  The man jumps over the platform to help me balance you into the carriage. We both take your weight and lift you into the seat. I sit beside you and the bar is lowered.

  Oh shit, do I have to go through this? I used to love rides but not any more, I’ve lost my nerve. I scream most of the way round while you are silent, holding the bar with a faraway look on your face.

  ‘Phew,’ I say when we get to the end. ‘Are you wanting that second go?’

  ‘Yes,’ you reply.

  ‘Do you need me to stay on with you?’ I’m feeling sick.

  There’s a pause.

  ‘No.’

  ‘Are you sure?’

  Pause.

  ‘Yes.’

  ‘Okay.’ I suppose you seem safe behind that bar. I get out, my legs shaking.

  ‘Same again?’ says the man.

  Your arm is outstretched. You want to shake the man’s hand. He offers it to you and I know that your grip will be tight.

  ‘What’s your name?’

  ‘Mike.’ The man is smiling down at you.

  ‘Are you on Facebook?’

  ‘Yes, I am.’

  ‘Will you be my friend?’

  ‘Yes, sure I will, Louis.’

  And you release him.

  *

  You are back from the second go.

  ‘Okay, all out. I’ll help you lift Louis.’

  Mike is bending down, lifting the bar, placing his hand under your armpit and I’m standing over you on the other side. You make no attempt to shift your weight for us.

  ‘Come on, Lou,’ I say.

  ‘Again.’

  ‘Again?’

  ‘Again.’

  ‘Okay,’ Mike says. ‘Just one more time.’

  Mike nods at me. Your words shoot out quick and clear.

  ‘Five more.’

  ‘You what! Five, mate? You’re a chancer. Two more.’ He’s laughing.

  ‘Ten.’

  Mike’s shaking his head. He’s looking at you and up at me. I’m shaking my head at him, No! Mike has a strong handsome face, tattoos up his arms, a muscled physique. He straightens his body, leans back and looks at you with a grin.

  ‘Man, you are a card. You can stay on all day.’

  Oh no, don’t say that!

  And so you do.

  I stand on the platform, and then I sit in your wheelchair as I wait.

  ‘Is it safe? Will it kill him? How many rides can a body take?’

  ‘Ah, don’t worry about it. There’s the rollercoaster society, they come every year and they try to set a new record. I was here once when they did over fifty rides.’

  ‘Fifty!’

  *

  I lost count of how many times you went round but it was well over thirty. In the end Mike had to pretend to shut the ride in order to get you off.

  I get a phone call from Jack’s school; they want me to come in. This feels like déjà vu except the teacher and primary school are different. The new school is down the coastline with more children per class. We’ve moved both Tasha and Jack to this school to be able to make some friends. When I arrive the teacher gives me a leaflet entitled ‘Gifted Children’.

  ‘Jack is exceptional at maths,’ she says.

  I’d already guessed that.

  Jack’s been disappearing across the road to see Dave, the builder. He’s only just six, but he carefully climbs the scaffold and talks to Dave as he breeze blocks the walls to a new house opposite. Jack watches Dave with his cigarette stuck in his mouth and talks to him about numbers. How many of those does Dave smoke a day? A week? And then he calculates how many that means a year. How old was Dave when he started smoking and how old is he now? Dave appears at our house with Jack in tow.

  ‘Jack’s bright, isn’t he?’

  ‘Sure is,’ I say.

  ‘He asked me about my smoking. I felt bad about him watching. I told him each cigarette knocks ten seconds off your life. I only meant it as a deterrent but he’s calculated my demise. He said I should be dead by now.’

  The large man leans out over the counter of his van and stretches his thick hand down to yours. You pass him your tightly rolled-up five pound note. You are paying for our chips. We came down to the far side of the village when we heard the boy racer horn. We see some of the old locals have come out from behind their net curtains and formed a queue. We’d heard the rumour too: ‘There’s a new fish and chip van coming to the village on Friday evenings. The chips are good.’ When it comes to our turn to pay you grasp at the man’s fingers.

  ‘Hello, I’m Louis.’

  ‘Hi Louis, I’m Martin,’ Martin’s voice shouts over the hum of the engine and the sound of the spitting fat.

  You grin and squeal the tune ‘La Cucaracha’.

  ‘Do you like my horn, Louis?’

  ‘Yes.’

  ‘Do you want to press the button for me?’

  You are overcome with giggles. I balance you with your frame over to the front door of the van and Martin lets you in. You press down and hold. The horn blasts out over and over. It hurts my ears.

  ‘That’s enough now, Louis,’ Martin shouts.

  I have to tug your hand off the button.

  ‘Can I do it again?’

  ‘Yes, sure you can, Louis. Come next Friday and you can play it again.’

  *

  And now you are hooked. When you hear Martin’s horn in the village you want to go straight to the van. You shriek in anticipation, your excitement mounting through the week the same as my dread. I like and appreciate Martin’s kindness but it’s not how I want to spend my Friday evenings. I feel mean, you enjoy it so much.

  Spike has been walking round the garden with you looking for spiky plants and stinging nettles; this thrills and scares you at the same time. You want to touch them but you know if you do it will hurt you; it is a game that the two of you like to play. Spike’s thought again of something original that will entertain you, keep you occupied for a while. You are using your walking frame and slowly following him around the edges of the lawn.

  ‘Look, Louis, here’s a thistle,’ I hear Spike say. ‘Do you want to touch it?’

  ‘No,’ you scream.

  I have snuck up on the two of you from behind the barn living room wall. I want to capture an image of grandfather and grandson. The look on your face when you are with Spike is one of intense concentration, thought and delight, but I don’t want either of you to notice. I capture the image – a look of scared rapture, the likeness in your faces as you both look intently at a thistle.

  I often joke that you are your grandfather Spike reincarnated, although Spike isn’t dead! You seem to share the same interests and he’s so patient and caring with you. He has always been one of those crazy types. He runs over mountains and he cycles long distances. I’ll never forget the evening he arrived to see us a year ago. He’d cycled all the way from Sheffield on his bike in a day. That’s over 300 miles. He set off at one in the morning and arrived at the house at nine at night.

  ‘How did you do that, Spike?’

  I have visions of a bullet hurtling in the dark over the moors and mountains down through the valleys. He just grinned.

  ‘Well, I ran out of steam near the end. A bridge was closed and I had to do a 15 mile detour but the re
st was okay.’ Spike’s bike is leaning against the wall outside and he has a cup of tea in his hand in the kitchen; he’s still wearing his cycling gear.

  ‘When I set off I climbed up to the top of the tor then went over the dark peak. I stopped at the top to take a break at about two in the morning. It was a lovely still night. I met some young people up there. They were having some kind of a party. There was loud music playing.’

  ‘Yes, Dad, that sounds like a rave.’

  They must have thought they were hallucinating.

  ELEVEN

  We are going to try to find a bike for you and then you will be even more like your grandfather. We are going to drive all the way to London to try some out. I’ve been researching. There’s a compound in a park on the south side of London where you can try different disabled bikes.

  Oliver is talking gently to you as you sit in your wheelchair in the park compound. He’s been showing us all of the types of bike that you could possibly ride, helping us to work out which would be best for you. The bikes take a while to adjust in length and height before you can try them and we’ve been standing here for over an hour while Oliver tries to get the latest bike right.

  ‘This is an adapted recumbent bike and I think this might be the right one,’ Oliver says, lifting his head up briefly.

  We’ve already tried a double bike where we sit side by side but only I pedal, and another that was rather like a bucket truck with you sitting in the front. Both were heavy, cumbersome and disappointing.

  ‘It depends if Louis will be able to pedal on his own,’ Oliver is saying. ‘I think that he might, and it can also be attached to your own pedal bike and pulled so both options are there. This bike was designed in Germany. They really know what they are doing there.’

  You continue to watch as Oliver uses his spanner and tools and we lift you in and out to assess, then move and adjust. At last he is ready. We lift you in and twist your feet into the stirrups. I try to wedge your feet into the metal plates but they keep twisting out, it’s impossible. In the end we half-strap them in with Velcro and decide there’s enough there for you to be able to push, and we put on your seatbelt straps. Oliver has tied a rope to the back in case you take off. It is going to require you to use both your legs and your arms at the same time and to look out for people. That’s a concern: you don’t really think about others, do you? In your walker I have to hold on tight to the back if we go into a public place or you’ll just mow down anyone in your way.

  You’ve started to shake. Your voice bleats out, ‘I’m scared.’ You say it again like a cry, ‘I’m scared.’

  ‘You’ve got nothing to be scared of, Louis.’ This is Oliver.

  You look up at him and seem to hear him but then you say it again while your legs start to shake up and down, up and down.

  ‘Look, Louis, the worst thing that could happen has happened to you. There’s nothing to be scared of.’

  Ouch, that was frank. You don’t understand him. You don’t register what he has just said.

  ‘I’m scared,’ you just say again.

  ‘I’ll push you,’ Oliver is saying. ‘As I push, your feet will move round and you’ll come to see how to move your legs. And I’ll call out to you how to move your arms.’

  He is patient. Your face is still as if in shock as you register the new sensation: the movement in your legs as your feet move round on the pedals. Your hands let go of the steering handles at your side. They are held out in surprise as you move down the path. Oliver leans over you. As he pushes the bike from behind he steers with the handles too; your legs move slowly around and around as he talks soothingly, reassuringly. Half an hour later Oliver says gently, ‘You try steering now, Louis,’ and he takes you away again.

  ‘I think I’ll fix it up onto a normal bike, then you can pedal and pull Louis around the park. His legs will go round and in time he will learn.’

  It’s a winter’s day and Greg and Jack have gone down to the beach in warm puffy coats. When they arrive back at the house Jack runs into the hall and his face is radiant.

  ‘Dad’s going to make a sculpture with me.’

  Greg follows Jack in and is carrying a bag filled with round plastic bottle tops and under his arm is a plank of driftwood. They spend the afternoon sticking bottle tops onto the flat plank and now it hangs on our wall in the central area and we can look at it from the kitchen table. There are many circles stuck onto the wood in all sorts of colours: red, blue, orange, green, pink and yellow and in all different sizes.

  Later that evening when you’re all asleep and I’m sitting down in the living room with Greg he tells me about a special moment down on the beach.

  ‘The sun made it warm in that sheltered spot behind the big rocks. We scrambled around on the pebbles under the cliff finding bottle tops. There was this moment when Jack stopped still and his little face looked up at me. “Am I dreaming, Dad?” he asked me. I answered, “No, Jack, this is really happening.”’

  It is Christmas morning and today for the first time ever we will go out as a family of five together on a fun activity. I treasure the photograph of that day as we all ride around the block, Tasha on her bike, little Jack on his, and Greg pulling your bike attached to his. You let out high screams of excitement and joy. You start to sing ‘la la-ing’ sounds as we go. Here we all are, together, doing something that ordinary families do. You can see in our faces: we look elated.

  Ade the Blocker laid blocks for the house that was built next to ours. He would turn up in a bright blue Jag and get out with a wide grin on his face. He had a twinkle in his eye and a natural swagger and there was not an inch of fat on his sunbrowned torso as he laid the blocks. He was a brilliant storyteller, he had a colourful history to put it mildly and Greg enjoyed his company but I would keep my distance.

  Ade has told you that he lives near Oakwood and has a view of Megafobia from his living room window. Ever since you’ve heard this fact you’ve been pestering Greg to take you over to visit. It’s a year since the building work finished and Greg’s suddenly agreed. Ade has rung him up with a design question about his garden so Greg’s going over to look at it for him and said he’ll take you too.

  When you both get home later Greg raises his eyebrows, blows air out of his mouth and shakes his head at me. I stop wiping the table and wait in anticipation – for what? I’m not sure but I know something’s happened.

  ‘Louis enjoyed himself. But that poor kid.’

  ‘You’ve enjoyed yourself, Louis?’ I ask.

  You whoop happily.

  I’ve enjoyed myself too, I think quietly, the peacefulness in the house even though it’s been busy. I helped Tashi and Jack construct a stall on our driveway; we used an old broken door to create a makeshift table and covered it with a tablecloth, placed cupcakes baked yesterday on the table’s top and then drew up a colourful ‘Cakes for Sale’ sign and stuck it to a piece of board down on the roadside. Then I’ve tidied up the house and sorted out washing, and been cooking a bolognese for our tea in the kitchen. The house has been ringing in silence. All I’ve heard is small waves of chatter and laughter drifting up from the driveway. Now I’m standing still and curious, with a hand on my hip. I’m looking across at Greg and down at you in the hallway, waiting to hear what you have been up to.

  ‘Ade asked me out into his garden; he needed me to look at a bit at the bottom. It was too awkward for Louis so I left him in the living room with Ade’s teenage son Mark. I told him to call me if he had a problem. When we came in they were gone. Then I heard Louis. He was in their bathroom asking Mark to wipe his bum.’

  ‘Louis! You know you must ask us for those kinds of things.’

  You know but you take no notice of me. You’re bottom shuffling across the floor to your bedroom humming a joyous tune.

  I wake and it’s gone. Usually I wake with a stab in my heart. You are eleven years old and the pain has disappeared. It didn’t fade slowly; it has just gone. I’ve woken and I feel nothing but a
lifting feeling in my heart, optimism for today.

  The realisation that I have at last accepted what has happened feels like a lifting of weight from my body, my mind. It carries me above all of the tasks and the chores. I really don’t care any more what anyone else thinks. I hadn’t realised that I had but I must have. I don’t care if an old school friend shares the fact that I am the one to have the disabled child. I didn’t want you to be demeaned. I didn’t want you to be described in that way. I didn’t want you to be whispered about, discussed as something tragic and sad. I did not want to be seen as a victim. I did not want people to feel sorry for me; I didn’t want any of this. I know people can’t understand, how can they? I wouldn’t have been able to and it’s impossible to describe. I’ve just had to be stoical and now I genuinely do not care. What is this feeling? It can only be acceptance.

  Greg is not there yet. I can still feel his trauma, see it etched in his face.

  ‘You don’t seem to want to go ahead with the operation?’

  ‘It’s not that. I just want to be absolutely sure I understand the procedure. How it is necessary and may help Louis.’

  This is my third meeting with Mr Rhys, an orthopaedic surgeon. I’m sitting in a chair in a bare, strip-lit office. Mr Rhys’s chair swivels as he leans onto his desk. He is a large man smartly dressed in black and has a kind warm face. He’s studied you three separate times now on a hospital couch and always reached the same conclusion: there’s a risk that you might lose the ability to walk in time. Your feet are getting worse, are twisted right over onto their sides and your stepping has already deteriorated.