Letter to Louis

by Alison White

  Mr Monsam lifts his Dictaphone up to his mouth. You double over in giggles as you listen to him speak.

  *

  We leave the hospital and go straight to a Dr Martens shop in the centre of Bristol, where we buy you a pair of boots. You try them on in the shop, stand and balance across the room. We can’t wait to get home to try them properly.

  *

  In the car on the way home you play a game with Greg. You call out from your seat in the back.

  ‘Hello, Mr Monsam.’

  Greg lifts his hand to his mouth and pretends he is speaking into a Dictaphone addressing the secretary.

  ‘I inspected Louis White with his parents today full stop. They explained there are concerns about his splints, sores and the question of over-exercising full stop. I can clarify that Louis White’s current exercise programme is imperative to his well-being full stop. Err, let me rewind that a little … I suggest a flexible leather boot with lacing, to replace his current splints full stop. I will review again in three months’ time with the view to considering Botox injections in the future full stop.’

  *

  We email a photograph of you to Mr Monsam’s secretary. You are wearing your orange puffy winter coat and have gloves pulled onto your hands. It was cold that December day but the sun was bright. It was a perfect day to go down to the beach to practise your walking on the hard golden sand. I’ve taken your two hands and helped to tug and pull you out of the chair. Your body is bent and you straighten up uneasily, your feet are hidden but I know they are twisting inside your boots, but the soles look flattish on the sand. You make tiny steps to keep stationary and then I let go. You walk away squealing. Greg snaps the photograph as you come towards him, capturing the joy on your face, your new black laced-up Dr Martens boots.

  Greg is my Peter Sellers; he’s funny, creative and complex, and his presence livens up our family, helps to make some days become lighter. His gift of laughter in most circumstances makes me think of a Gulag story I once read: men were packed into trains heading across Siberia; they were starving and dying along the way. It was the funny men who were the heroes, the author wrote. It was they who saved the others on that journey to hell, who kept up their spirits, even though there was nothing to hope for, had them laughing together, forming close bonds as they swayed.

  *

  And I’ve noticed you appreciate humour too; you’ve recognised Greg’s and tapped into it. Take today; you’re sitting in your wheelchair at the kitchen table eating four Weetabix, mashed up with warm milk, swallowing without a chew.

  ‘I don’t like Phil Kay.’

  ‘Hey Louis, do you remember him? That’s a long time ago. You were only little, maybe five, when you last saw him,’ I respond.

  Years ago Phil would pop around to our flat sometimes.

  ‘Hi guys, how are you getting on? How’s our wee Louis doing?’

  And you would throw yourself backwards onto the floor and thrash around. Phil, with his tangled hair and expressive arm gestures, would look bemused; he was used to being found charming, and I’d steer him out of the living room away from you, instinctively knowing you found him frightening. It’s probably his energetic manner I’d always thought, although you could not tell me.

  *

  ‘You remember Phil?’ I ask again now.

  A high-pitched scream erupts from your mouth. ‘I didn’t like him.’

  ‘You couldn’t speak then; you couldn’t tell us.’

  ‘I don’t like Phil Kay.’

  ‘But Louis, you like everyone.’

  ‘Not Phil Kay.’

  ‘Why not?’

  There is a long pause, long enough to think you will not answer, then without looking up from your breakfast you speak with a smile on your lips.

  ‘I don’t know.’

  You’ve gone silent, concentrating on lifting large spoonfuls of Weetabix into your mouth. I begin clattering around in the kitchen as I hear you speak again in a giggling voice.

  ‘Hello, Phil Kay.’

  I hear a rustle of paper, Greg clear his throat.

  ‘Hello, Louis,’ he says. He draws out the ‘hello’ and almost shouts out the ‘Louis’. It is as if Phil has entered the room.

  ‘Go away, Phil Kay, I do not like you.’

  ‘Och come on now, Louis, surely you must like me?’

  Greg raises the word ‘me’ to a higher pitch. Screams erupt from your mouth.

  ‘Go away, go away.’

  ‘Knock, knock, knock.’

  The kitchen table thuds as Greg speaks.

  ‘Who’s this knocking at the door? Why it’s your good friend …’

  ‘Stuart,’ you shout out quickly.

  ‘No, it’s not Stuart, Louis, good try. It’s your good friend …’

  ‘Callum.’

  You are starting to shake.

  ‘Och no, Louis, not Callum, it can only be … Ph Ph Ph Ph …’

  Screams erupt that turn into uncontrollable laughter.

  ‘Stop!’ I call out, laughing. ‘The noise, it’s hurting my ears!’

  *

  You enjoy screaming you don’t like Phil Kay so much that you want to play the role game again and again in the kitchen and we start to call it your drama therapy.

  The first day you meet Colin, you have a surprise. The Phil Kay game has got out of control. Now everywhere we go and everyone you meet is greeted with a scream and a garbled line, ‘Go away, Phil Kay, I don’t like you.’ And you grin at them wide. Of course no one understands what on earth you are saying. You love to listen as I try to explain in the supermarket, on the street. But the day that Colin walks through our front door it is different.

  Colin strides in to meet Greg; they met recently when Greg composed some music for Colin’s zoo television programme. Colin could not be more alpha male, he’s a wild Glaswegian in Wales and I know that you’ll love him, spot his accent as soon as you hear his voice.

  ‘Louis, this is Colin,’ Greg says to you.

  ‘Nice to meet you, Louis,’ Colin shouts.

  And you scream at the top of your voice, ‘Go away, go away, Phil Kay, I don’t like you at all.’

  And Colin hears you, hears every word. He towers above you and answers in his strong Glaswegian accent in a clear loud voice.

  ‘No, Louis, I agree with you there. I don’t like Phil Kay either.’

  You are astounded. You are staring at him with your mouth wide open.

  ‘You’re dead right there. Phil Kay? That man is a pain in the ass.’

  The ‘ass’ comes out with a sharp ‘a’ and a hiss. And that’s done it. Oh no! There’s another expression that you take and savour and repeat over and over.

  ‘Phil Kay, he’s a pain in the ass.’

  Your lip is jutted forwards and lowered. You are lying in your bed clutching your maps. I’d heard shouting, heard Greg say something about you having his phone again, and the bedroom door closed firmly. I’ve come down to check what is wrong.

  ‘I’ve been naughty. I took Daddy’s phone.’

  ‘Don’t worry, it’s okay.’

  ‘I rang Colin; it’s his birthday tomorrow. Can I ring him?’

  ‘Yes, of course you can.’

  Colin will get a birthday song early tomorrow. Colin will get a birthday song every year of his life unless he changes his number. You do this to everyone who knows you; you sing them a birthday song first thing in the morning on the day of their birthday. You remember the date when you ask them and then pass over your address book, ask them to write down their phone number for you to call them up when the day comes. Sometimes you have two or three people to call on one morning; I don’t know how you remember all these dates, but it’s very endearing.

  ‘I rang someone else too.’

  ‘Who did you ring?’

  ‘I rang Phil Kay.’

  ‘Oh, Louis, you didn’t!’

  ‘I did.’

  We haven’t spoken to Phil for years.

  ‘Did he answe
r?’

  ‘Yes.’

  ‘What did you say?’

  I don’t really need to ask this, do I?

  ‘“I don’t like you.”’

  ‘And then what?’

  ‘Stop. Stop asking me questions.’

  You’re shaking.

  ‘It’s okay, don’t worry.’

  I’m suddenly struck – we were having a long conversation. This is new, it hasn’t happened before.

  ‘Will Father Christmas still come? Will I still get lots of presents? Have I been a bad boy?’

  You can’t understand Father Christmas is not real. I’ve tried to tell you gently but you can’t comprehend this. You’re fifteen years old and as excited as a five year old about Christmas coming.

  ‘It’s okay, Louis, don’t worry, but it’s not nice to tell someone you don’t like them. It’s not kind.’

  ‘I don’t like him.’

  ‘Yes, I know, but you don’t really know him any more and you don’t need to tell him that.’

  ‘I’ve been naughty, haven’t I?’

  ‘Well, try not to do it again. You must stop taking our phones without us knowing and ringing people.’

  ‘Are you going for a bike ride?’

  ‘Yes, Louis, I am. Goodnight, see you in the morning.’

  You give me your maps that you are clutching tightly. You know you will wake if they fall off your bed in the night. Our routine is working. I go out of the bedroom and gently close the door. I no longer have to zip my coat up and down a number of times for you to hear in the hall. I don’t even have to go out of the front door into the blowing gales and rain to sneak back in. Now I can stand silently in the hall for a few seconds, then slam the front door and edge the living room door open so I can creep in. I hear happy whoops from your room as I complete my manoeuvre holding my breath. Greg is lying on the sofa watching the telly.

  ‘Louis got my phone tonight,’ Greg says over the sound of the news.

  ‘I know.’

  ‘He seems to have rung Phil Kay. It says the call was two minutes long so I think he may have left him a message.’

  I savour the few seconds before I respond. I try to keep my face blank, stop my mouth from curling, then I can’t hold back any longer.

  ‘Phil answered. Lou spoke to him.’

  Greg sits bolt upright from his slumped position.

  ‘Oh no, what did he say?’

  I laugh. ‘I think you can guess.’

  I am sitting on a bench eating a cream scone in the garden of the Druidstone Hotel and you are scooping up ice cream from a bowl. The hotel is perched on the edge of a cliff and our picnic bench is behind a high weathered stone wall. I look around the flowered garden and feel exhaustion and elation at the same time. I cannot believe we have come so far. The word had got out: Louis was attempting to walk all the way from Broadhaven to the Druidstone along the coastal path. When Jane the owner had heard the news she asked Johnny the chef to bake some scones and she greeted us with this surprise.

  *

  It was all your idea.

  You’d cried a few years ago when some friends of ours had offered to drive you home from the Dru so that Greg and I could have an hour to ourselves walking back along the coastal path. ‘I want to come too, I want to come too,’ you’d cried out from your wheelchair and I’d had to tell you it was just not possible. So you’d told David that you wanted to walk to the Druidstone. In his usual measured way he’d said you could try it in time.

  Over the last year you’ve been trying out sections of the path with the walking frame; we sourced all-terrain pram wheels and attached them to the legs of your walker to help you get over the rough ground. And today the sweat dripped off your face, your shirt was damp and your tie in shreds. At each bench you sat down with David and he gave you a quiet pep talk. You looked just like a coach and an athlete as you listened to him, I thought. Then you’d awkwardly rise, hold onto the frame and go a little bit further. The walk was two miles long and it’s taken you six hours to get here. Ten of us joined you and David and helped to lift the walking frame in places, helped to take both your arms and balance you through narrow sections of the path. Today you have proved to us all that if we just try we can sometimes achieve our dreams.

  SIXTEEN

  You fell off your walking frame today. You’ve been getting so strong with your swimming, your exercises with David, that you’ve started hopping onto the back of your frame and back down. You push your hands on the handle grips and straighten your arms, raise your body up like a gymnast and swing your legs forwards as your bottom rests onto the back of the frame and then you slip quickly back down. It must feel releasing to have this new ability but it’s dangerous so we warn you not to, so of course you do it more, it’s become a compulsion.

  Your jump comes with no warning and you do it at the most precarious of angles and moments when we are taking you from one place to another. And now you have fallen at school. The frame lifted up and flipped backwards and you landed hard on your back and screamed.

  You’ve not hurt yourself badly; it’s just a graze and some bruising but it’s given you a shock and you are refusing to use the walker now. You howl at school and demand your wheelchair. The school has asked for your chair to be sent in every day and now I’m worried.

  We have a meeting.

  ‘If we allow Louis to be in his wheelchair all day at school it will be disastrous for his walking.’

  ‘But he’s in danger. It’s become a serious health and safety issue, Mrs White.’

  ‘But he needs to walk for his health.’

  ‘Well, he has the right to his own free will in what he does.’

  I can hear the alarm bells going off in my head; I’m going to need to tread carefully.

  *

  A further meeting has been arranged and a health and safety sheet has been drafted itemising the current risks posed by some of your actions and compulsions. Falling off your walking frame has been placed in red as ‘high’. A letter from the safety official at the council has arrived. Their legal department is concerned: ‘Does this child have to be allowed to walk in school? We deem the risk level too high.’ And I am struggling to keep things in perspective and find the words to explain that of course it is important that you walk every day in school. You don’t help. You scream over and over to get into the wheelchair.

  *

  I find a solution; I design a seat that can be lowered in your frame that you can sit on. I tell you to sit down when you have the urge to hop up. And, although it makes no practical sense in stopping you from hopping, it works. But it’s not allowed in school. It cannot be approved for health and safety reasons. Any attachments need to be designed and authorised by the manufacturer of the walking frame company.

  ‘Well, do they exist? Does this manufacturer make such a seat?’

  ‘I don’t know,’ comes the vague voice of the physiotherapist.

  ‘Well, could you find out?’ the headmistress asks with an exasperated voice. She’s on my side at last.

  And they do exist. The manufacturer does not show them in their catalogue but they will fit them on request. At the meeting the following week the physiotherapist explains she will have to write a report that will need to go to committee. It will take at least four months to get approval. And then it will have to be sent off to be fitted. My heart sinks.

  ‘How much is it? I’ll try and find the money,’ I say.

  The headmistress interrupts.

  ‘Just order it, will you? I’ll find the money somehow, we can’t wait.’

  And when it comes it is perfect for you for all sorts of reasons. You are happy again walking around the school and resting in your seat when you need to.

  ‘Hey Louis, my number one son. I’ve made you lasagne!’

  You squeal, doubled over in excitement.

  You rang up John yesterday alerting him that you were coming. You told him you want to eat lots and lots. We have come over to Bristol agai
n for you to have your feet checked by Mr Monsam. Now we’ve driven across the city to Babs, John and Adam’s house. Babs is one of my oldest friends and her house is always filled with laughter. It acts as a haven, a resting point for us before making the long journey home. John is a brilliant cook and delights in feeding anyone who enters – he seems to go out of his way for us.

  ‘I’ve been working on this all day for you, Lou,’ John says with a broad smile as he lifts out a large bubbling glass dish.

  ‘This is an interesting one for you, Lou. Let’s see if you can tell.’

  Your face has lit up, you are squealing as John is mashing up the lasagne in a bowl, adding a little cold water to cool it for you. You pick up your dessertspoon and shovel it into the bowl. You lift up a large scoop of the mashed lasagne towards your mouth – but your arm has paused. You are listening to John.

  ‘Ooo just wait and see what I’ve put in this today, Louis. I wonder if you can guess?’

  I jerk in my seat, say rapidly, ‘John! Louis’s allergies, can I check?’

  ‘Oh, it should be all right, Al, it’s Quorn and lentils,’ he whispers.

  ‘Stop, Louis!’

  I knock the spoon out of your hand as it’s reaching your lips; it clatters onto the wooden floor and splatters lasagne everywhere.

  ‘I’m so sorry, John. Louis is allergic to lentils.’

  ‘What! To lentils?’

  ‘Yes, to lentils.’

  ‘Oh! I thought it was nuts, peas, fish, sesame, chocolate. I didn’t realise it was lentils too.’

  John’s got the list right. His voice is higher, he’s trying bravely to mask his disappointment. ‘I’m sorry, Lou, you can’t have it.’

  ‘You’ve put in lentils?’

  Your voice sounds incredulous.

  ‘Yes, Lou, I didn’t realise you were allergic. I’m sorry.’

  ‘Why? Why did you do that?’