Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8
Chapter 9
Chapter 10
Chapter 11
Chapter 12
Chapter 13
Chapter 14
Chapter 15
Chapter 16
Chapter 17
Chapter 18
Chapter 19
Chapter 20
Chapter 21
Chapter 22
Acknowledgements
Supporters
Dedication
Copyright
Penny Pepper is a writer poet and well-known rights activist. She writes regularly for the Guardian and has appeared on Newsnight, Sky News, BBC Radio 5 Live and Radio 4’s Today programme.
Her explicit, taboo-breaking book about sex and disabled people, Desires Reborn, was published in 2012, and in 2013 she won a Creative Future Literary Award. In 2014 her one-woman show, Lost in Spaces, premiered at the Soho Theatre before going on a successful UK tour. She has also performed in Oxford, Edinburgh and New York.
She is currently finishing work on a novel and her first collection of poetry. She lives in London.
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Book of Words. Daddy told me how fish breathe underwater. They have things called gills.
I’m flying, my legs in the air. Daddy pushes the swing. I go higher and higher, and I start to sing ‘Yellow Submarine’.
‘A washing-up machine,’ Daddy sings.
‘A tub of margarine,’ Mummy follows on, and Ant makes noises.
The sun is on my face, and my eyes shut tight as I lift in the air like a bird. ‘Custard gone all green.’
Everyone laughs. I float higher.
‘Not my custard, Penny,’ Mummy says.
Daddy’s hands are warm and firm on my back as he swings me again.
‘What do fish breathe with, Penny?’ Daddy says on the next push.
I keep my eyes closed as I think. It’s in my blue Book of Words, a G word.
‘She don’t know, Daddy, she’s silly.’
I open my eyes and see Ant. He jumps up and down, clapping.
‘I do, I do!’ I say. ‘Push me higher, Daddy, please.’
Mummy is on the bench by the swings. Her hair is big today – perfect.
‘Careful with her, Michael,’ she says to my dad. ‘She had a lot of pain last night.’
‘Girdles!’ I say suddenly, staring at my baby brother.
‘Girdles?’ Daddy repeats with a laugh.
Mummy joins in. ‘Do fish wear girdles?’
Ant starts clapping again – but I let him off as he’s only four.
‘Girdles,’ I say, as Daddy pushes the swing.
‘Does that mean Mummy wears gills, Penny?’ he says.
‘Yes, fish wear girdles,’ I say as I swing into the air shrieking, high enough to see over our holiday chalet, which I know is in Dawlish Warren. Daddy showed me on his map. I can smell the sea and high up here, on the swing, I feel like the seagulls.
‘Time for dinner soon,’ Mummy says, and on the next swing down Daddy catches me gently and I’m back on earth.
Simon comes running out of his chalet, which is next door to ours. He’s five months, six days and eleven hours older than me.
As I get off the swing, he holds out his hand.
‘I saved you a flying saucer,’ he says and drops the sweet into my fingers.
I glance at Mummy. ‘Go on, you can have it this time,’ she says. ‘But you’d better eat all your dinner.’
I slip the saucer under my tongue, enjoying the fizz as the paper melts.
Simon’s mummy and daddy come over to the bench. My daddy sits down and pulls me onto his lap. I’m suddenly very tired.
‘How is she today?’
Simon’s mummy is called Joyce and his daddy is called Peter. I don’t like it when they talk about me as if I’m not there.
Simon gets out his collection of shells and lays them on the ground, the biggest to the smallest. He’s talking about the best place to find them, but I can’t help listening to Joyce talk to my mummy and daddy.
‘She’s not too bad,’ Mummy says. ‘She had a bit of pain in her knees last night.’
Peter, who has thick yellow hair, narrows his eyes. ‘What’s wrong with her again?’
He is asking my daddy and I feel Daddy tense.
‘Still’s disease,’ he says. ‘Juvenile rheumatoid arthritis.’
I’m trying to listen to Simon. I like the shell with pink lines that curl round and round, but I can’t help listening to what the grown-ups are saying.
‘Does it affect everything?’ says Joyce.
‘All her joints. Maybe her kidneys,’ Mummy says. Her voice sounds funny. ‘She’s already been in hospital quite a lot and they keep trying her on new tablets.’
I roll my face into Daddy’s shirt. I don’t want to think about hospitals where they hurt you, tell you it’s for your own good and don’t let you see your mummy and daddy.
‘It’s very rare in children,’ Daddy says, and I can tell he doesn’t want to talk to her while I listen.
‘My gran had arthritis. It completely crippled her,’ says Joyce.
Daddy stands up abruptly, holding me tight.
Simon collects his shells. ‘Are we going for dinner now?’
‘I’m hungry,’ Ant says, grabbing Mummy’s hand.
Peter and Joyce take a step back.
‘You’re fine, aren’t you, Pen?’ says Daddy, and I rest my head on his shoulder, never wanting to leave.
‘Yes, Daddy,’ I say.
In my head I’m thinking that I must ask Daddy about putting the word ‘crippled’ in my Book of Words on the C page.
We get moved to a different house, when Daddy goes. It’s white at the front with a great big window. It’s the first thing I look for when the school bus pulls up in front of my new home in Little Chalfont. Sometimes Mummy will be sitting by it, waving to me. But not today.
The radio on the school bus is never tuned in properly. But I can just about make out that it’s ‘Jennifer Juniper’ by Donovan. Mummy bought the single for me, the first one I’ve ever owned myself.
Mags smells of cigarettes and she’s always rough. She undoes my seat belt, takes my left elbow – my sore elbow – and pulls me to my feet.
‘Your ruddy mother should come out and carry you down the steps,’ she says, smoky breath over my face. ‘Or you’ll have to use a wheelchair like the others so we can get you on the lift.’
I don’t say anything as she stomps down to the pavement, grabs me savagely under the arms to drag me. It hurts, but I won’t let her know.
Walking through the front garden, my knees are on fire from being bent up on the long journey. Ant is sitting on the step, a metal aeroplane in his hand.
‘Mummy said I must stay here,’ he says solemnly. ‘I can’t go indoors.’
‘Why not? Isn’t he in?’
‘I don’t know,’ whispers Ant.
I don’t feel very warm in my turquoise miniskirt and my favourite pink blouse with the sailor-style collar. Mum hates it anyway and says I’m only ten, miniskirts aren’t right.
I really need to go to the toilet. I press against the front door nervously and it swings open.
‘Don’t walk on the carpet!’ a voice yells from upstairs.
It’s Jake.
‘I need to use the toilet,’ I say, stepping inside.
‘I’ve just cleaned the fucking carpet, so you can fucking wait.’
My chest tightens and I sway from one leg to the other to try and take the pressure off my knees. I don’t know what to do. I never know what to do when Jake starts shouting and swearing. I wish Mummy would come back.
‘I need to go,’ I say again.
Jake comes to the top of the stairs and glares down at me.
‘I’m telling you to wait,’ he says, then disappears back into Mummy’s bedroom.
I’m shaking, stuck on the spot. My knees hurt and I’m scared I’ll wet myself. I wait for a few seconds then, holding in my breath, I edge along the wall, through the lounge and the kitchen, to the downstairs toilet.
When I’ve finished I open the door. Jake is there. I freeze.
‘You little bitch,’ he snarls and grabs my arm, the same arm that Mags grabbed. There’s a deep, liquid pain right inside my elbow.
‘I know your fucking father spoilt you, but you’re not getting any of that with me.’
He grips me and I feel like a ragdoll. His huge hand whacks hard across my knees and I scream as the fire erupts.
‘I told you no and I meant no.’
He hits me one more time then lets me go. I fall to the floor, crying, hating the pain, but hating more that I don’t understand and I can’t fight him back.
I stay still till he’s upstairs, and then go outside slowly to sit next to Ant on the doorstep. I manage to take off the patent purple handbag I have around my neck. A present from Jake, like Ant’s aeroplane.
‘Don’t cry, Pen,’ says Ant.
I pick up his aeroplane. ‘Do you like this?’ I ask him.
‘I don’t know,’ he says, gazing at me with big eyes.
‘I don’t like my bag. I’m going to get rid of it.’
‘Put my aeroplane in it,’ Ant whispers.
I hold his hand as we go down the road, towards the woods at the top of Money Hill. We throw the things into some bushes and laugh. Jake might beat us for losing them, but we don’t care. We’ll never care.
We walk home slowly, hoping Mummy is back.
‘A year in hospital is a very long time, Penny,’ says Nurse Brandy as she tidies my bedside locker. ‘But you’ll be able to go home soon.’
Nurse Brandy is the best nurse ever at Beechwood Special Hospital. She has long ginger hair. I love the moment I catch her letting it fall down, when she finishes her shift; it’s like seeing something I’m not meant to.
‘Helena Keely has been in for three years,’ I say. ‘That’s got to be a record.’
Nurse Brandy stops folding my bras and looks at me.
‘It’s different for Helena, you know that. Her parents live too far away. The other side of the world.’
‘Like Borneo?’
Dr Daniel keeps teasing me that I look like one of the wild women of Borneo when I haven’t brushed my hair, but I don’t even know where Borneo is.
‘New Zealand, Penny.’
‘She doesn’t say much. Doesn’t talk about her family,’ I say. ‘How are we supposed to know anything?’
Nurse Brandy stares at me, holding one of my bras – hateful things.
‘I’ve heard the other girls saying stuff.’ I feel awkward that she’s stopped speaking. I stare at the wall by my bed. I’ve got pictures of Gary Glitter and Suzi Quatro. But my favourite is Marc Bolan. I love his cheekbones. I managed to save up every sixpence that Nan gives me each week so I could buy ‘Ride a White Swan’. Even if I don’t have a record player yet.
‘I hate to say it, Penny, but your mum needs to buy you some bigger bras.’ Nurse Brandy waves my grey underwear. ‘I’m all for the new revolution and burning your bra, but I don’t think you’ll cope.
My ears are on alert.
‘Why can’t I burn my bra?’ I really, really hate my bras. ‘I can be in the revolution.’
Nurse Brandy laughs. ‘I’m quite sure you will be, Penny. You’ll be right there in the vanguard of Women’s Liberation.’
‘Vanguard. Liberation,’ I repeat, and look for my pen and the little notebook with the pink poodle that Mum sent me in the post.
‘I suspect Mrs Marsh will be impressed if you add those words to your vocabulary.’ Nurse Brandy nods, still holding the awful shapeless objects. ‘But even if you’re a rebel, you’ll still need some good bras.’
I write the new words slowly into the notebook, avoiding her eyes. I don’t want to talk about bras. And I know Mum can’t afford anything. My cheeks burn and I think about how to change the subject.
‘I get my marks back for the essay this afternoon,’ I say as I pretend to write some more. ‘It’s the one I did about going to the fair.’
Nurse Brandy puts my underwear in the bottom of my locker at last. I can see from the corner of my eye that she’s shaking her head.
‘Perhaps I’ll pop a little letter to your mum about it.’ Her voice becomes serious. ‘Your breasts are growing, Penny. They need proper support.’
I look up and sigh. ‘You know about Helena,’ I say. ‘Her family have left her, haven’t they? Dumped her here because of her arthritis. That’s what the older girls say.’
Nurse Brandy’s face doesn’t change. She smiles her usual smile. It’s kind and I’ve never once been scared of her.
‘I’ll come back later before I leave to hear about that essay. I’m sure you’ve done well, Poet of Ward 2.’
I carry on writing in the poodle book. I wonder whether I can write a poem about Helena. I sometimes think I’d like to be dumped on the ward. Jake would be happy but I think it would upset Mum.
Dinner is horrible. I keep meaning to say lunch, like Nurse Brandy tells me. Breakfast lunch dinner. Maybe supper. I’m not sure why it matters and the food is disgusting anyway. We’re never quite sure what it is unless it’s something obvious like fish fingers, and even those are a funny colour.
I have Mrs Marsh to myself these days because she wants me to work towards doing an O level in English. The lesson after lunch is my favourite because there’s no rushing back from physiotherapy.
Today, though, I’m nervous because I did the essay. I worked hard, checked my spelling and managed to find a good pen, which Mrs Marsh says helps my handwriting.
We sit in the small side room at a square table. I don’t know how old Mrs Marsh is but I think she’s older than Nurse Brandy. She has short hair and talks like no one else I’ve ever met. I want to ask if she’s burnt her bra, but I know I won’t.
She puts my essay on the table. I can see there are a few red pen corrections, but at the top she’s written A - and the line: ‘Penny, this is excellent. One day, you could be a professional writer.’
I tingle. I don’t know what to say.
‘It’s true, Penny,’ Mrs Marsh says. ‘My husband, he’s a journalist and he agrees. Would you like that?’
I still don’t know what to say. The thoughts in my head scream YES. I want to show off about the essay to everyone, but I’m scared no one will care. Only Nan, and she doesn’t really count.
‘Well?’ Mrs Marsh pushes the essay closer towards me.
‘Yeah, of course I would.’
I know Daddy would let me show off. Daddy would be proud.
I open my mouth, ready to speak.
‘Can I be in the vanguard and… write about Women’s Liberation?’ I say on a rush.
Mrs Marsh laughs and nods.
‘Definitely,’ she says. ‘Most definitely.’
Out at last from Beechwood. This house is a bit better than the others because my bedroom is downstairs and I can stay in it all day, every day, and Mum can manage to bring my wheelchair in.
Under the quilt I lie with my transistor radio close to my ear. ‘I Love to Boogie’ by T. Rex. It’s cold and although it’s only early evening, there’s no other way to keep warm since the portable heater in my bedroom ran out of gas.
I’ve got Radio Luxembourg on but I know my batteries are going and there’s no chance of new ones. Auntie Mary and Uncle John always give me a bit of pocket money, but I don’t know when they’ll visit next as Jake doesn’t like them. The Social installed a phone in the hall to ring family, but no one’s actually allowed to use it, so I can’t even call them to come over.
It’s dark and the house is quiet. Mum is in the kitchen, across the hall from my bedroom. I stay under the quilt even when I hear Mum’s footsteps approach.
‘Come on, get up for a bit, Pen,’ she says and pulls back the covers.
‘I’m too cold, Mum. When can you get some more gas?’
Mum sighs. ‘Maybe when Jake’s dole money comes in.’
I pick up my radio. ‘We haven’t got any new batteries, have we?’
Mum shakes her head. ‘See if Ant will get you some out of his paper-round money. Or I’ll buy them out of next week’s Attendance Allowance.’
I can’t wait for my birthday because the social worker told me I’ll be old enough to get my own little allowance, an invalid’s allowance. At least I won’t have to feel so guilty asking Mum for everything.
‘Come and sit in the lounge and watch telly,’ Mum says, bringing my crutches over. ‘We’ve got the paraffin heater on.’
I don’t really want to, but I go anyway because I know Mum is worried. She thinks I don’t have enough friends and hates that I can’t go outside unless she pushes me in my wheelchair. My life is stuck in a rut of trying to keep warm, pleading with Mum to bring me books from the library, the daily struggle to get to the outside toilet, and avoiding Jake.
He’s already in the lounge, sitting in his large armchair in the corner, smoking. It makes me want to cough but I manage not to. We don’t speak. Mum comes in, helps me sit in my wheelchair then sits on the sofa.
The Today programme is on ITV on the telly. I sigh, ready to be bored.
But Bill Grundy is talking to The Sex Pistols. I stare at the screen, at Johnny Rotten’s orange hair. At snarling Steve Jones, and amazing, shocking Siouxsie Sioux with her cropped white hair, Bowie make-up and black braces.
I only know a little about The Sex Pistols. I’ve seen them on the front of Mum’s paper. They’ve been called ‘filth’ and ‘degenerates’. Ant saw them once in London and he talked about it for days and days, even if he was chucked out of the pub they were playing in for being too young.
Bill Grundy tries to ask them questions, but they don’t cooperate. I laugh and look at Mum and Jake, who seem hypnotised.
Jake frowns and Mum looks like a frightened rabbit.
‘Horrible,’ she says. ‘They’re horrible.’
Jake lights up a cigarette. ‘Probably all fucking poofs.’
The Pistols are winning against Bill.
He tries it on with Siouxsie when she mocks him: ‘I’ve always wanted to meet you.’
‘We’ll meet afterwards, shall we?’ says Bill.
My mouth is dry and I’m tensed up that Jake might turn the TV off in a fit.
‘You dirty sod. You dirty old man,’ Steve Jones cackles and I’m laughing too.
‘Keep going, chief, keep going.’ Bill’s nasty big tie moves as he speaks. ‘You’ve got another five seconds. Say something outrageous.’
‘You dirty bastard!’ Steve is in full flow and I think I might pee myself.
Siouxsie, Johnny and the Bromley contingent snigger some more.
‘Go on, again,’ says Bill.
‘You dirty fucker!’ Steve responds and we all laugh, them – and me. ‘What a fucking rotter!’
The credits come up with the Today programme music. I’m breathless and warm and afraid. Afraid like I’ve taken a favourite drug, like I’ve swallowed the whole of a mini vodka.
Jake grunts, gets up and turns the telly over. I tell Mum I want to go back to my room, and as I walk slowly on my crutches, I can’t help smiling.
After breakfast the next day, I coax Mum to look at my clothes. ‘I’ll have a sort-out,’ I lie. ‘Throw things away.’
I look for black. I look for stuff I can cut and shred. I want to chuck out the beige tank tops, the big, pleated skirts, the piles of jumble sale nothing that mean nothing.
Mum looks a bit cross and the clothes go back in the drawer after ten minutes but I know I’m different. The wallpaper looks different. My scabby curtains look different. The air is different. I’ve got a lot to do and I’ve got to start somewhere. I get out a notebook and start to write. One poem, two poems, ten poems.
Before I go to bed, I convince Ant to lend me his razor and with a bit of handcream slapped over my eyebrows, I shave them off.
The days are the same. Mum helps me up, to bathe, to get dressed. I sit in my chair. I might read a new book, if the library has it in yet. I eat a lot of cheese on toast because it’s vegetarian and cheap. Same, same, same days.
But I’m different. Angry, changed inside, somewhere deep. The pervs, the fuckers, the Grundys of this world. They might think they can win. They might think they can push me around. Fuck that. Fuck that right out down the stupid dirty roads across the shitty estate. I’m getting out. One day, I’ll be free.
I’ve got coloured notebooks in three colours on my small table, and a pad of blue writing paper with lines on it. This is for letters to my two friends, Jackie and Chris, who went to Beechwood Hospital School with me. I owe them both, but it will have to wait till tomorrow because Jake had one of his loony moods, turned off the electricity and it’s too dark for anything.
I pick up my red notebook and flinch as a few fireworks go off outside, days early before Bonfire Night. On the cover is the anarchist A and a scratchy biro scrawl – fascist regime! In the middle I’ve written in bold felt-tip:
IDEAS
BY
KATA KOLBERT
Tonight I’m Kata – a punk in the shadows – and I hate Jake and I hate my nonlife. Now I’ve got anger on top of all the endless boredom of nothing, day after day. The social worker comes. I don’t know what to say to her. She says I might be depressed and need to see a psychiatrist.
If Jake comes in my room, I sit on my notebooks. He threatens me with burning them, even my library books. I’m halfway through Wide Sargasso Sea. It’s great, really intense. I’m trying to get hold of Das Kapital next, although the librarian told Mum it’s really heavy.
I go for the orange notebook. I’ve got a bit of a poem in there about the riots in the summer. The fascist National Front set it all off in Lewisham. Scum. I wish I could have gone, though seeing as I never go anywhere, I know that’s stupid.
I put the orange notebook back and pick up the red one, again wondering if I dare light a candle as the house stays horribly quiet. I hope Mum is okay.
I flip to the back page. Squinting and trying to read by the pale street light, I can see a paragraph of handwriting that would have made Mrs Marsh roll her eyes. The beginning of a horror story, doomed love with plenty of gore. I’m not in the mood for it and I flick through until I find a blank page.
I hear a soft thud upstairs and hold my breath. I want to scream, break the silence, shout at how pathetic it all is. But I’m scared, body all clenched. We never know how long we’ll be stuck in the dark when Jake has a tantrum.
I strain towards the glimmer of light as I pick up my pen. Romance is the first word that comes from somewhere. I want to turn it inside out, that idea. I want to be liberated and laugh at the idea that romance has anything to say to me. I can hear a dialogue, an argument.
Romance is good, the woman said.
No, romance is bad, I’ll shoot off its head.
I laugh to myself – immediately afraid I’ve made a noise. But a rhyme gets through my head, dances, opens drawers, dusts down the words. I can see the shocked faces already.
I bite the end of the biro. It’s cheap and I do yearn for a fountain pen, almost as much as a typewriter. Ant says he’ll get me a pen for Christmas. I write the word dead, and underline it to build a column of all the words I can think of. Sometimes it stays rolling and rolling on the same line. Sometimes I bend it, maybe dead and dark will weave all the way through.
The pen will do, while I dream of the typewriter. After a Jake episode I get itchy to write, and the words always come. I put the biro down and smile. I’m a million excited miles away, the nothing-days matter less and less. I’m glad I’m angry and I’m glad I’m different.
The lights come back on and I blink. The sound of the kettle whistling means I can move at last, and when I hear Jake laughing at Benny Hill on the TV in the lounge, I know his shitty mood is over, for now.
Mum makes a noise in the kitchen, a soft cough. It’s a relief.
Dr Gillette is the child shrink. She has huge, round glasses and brown-grey hair. It sits on her head like a ragged wig.
I’m at Beechwood, a brief stay for daily physiotherapy. We’re in a tiny sliver of a room on the ward. It feels funny, as it’s the place where we come to play records in the evenings.
There’s an old poster of David Cassidy on the wall, shirt draped open to show his disgusting chest. Some kid has given him a Hitler moustache. It’s done in black felt-tip. Someone else has scrawled ‘I am the Antichrist’ and drawn the Anarchy sign.
Dr Gillette sits below this, smiling.
‘I hear that physio is going well, Penny. Can you see any improvements?’
‘Not really,’ I say and stare at David Cassidy’s blobby left nipple. I know she means well.
‘How is family life?’ she continues.
I shrug and my eyes drop to the floor. There’s nothing to say.
‘Are you looking forward to going home?’ she tries again.
‘Of course I am,’ I say and scowl.
I don’t want to look at her now. I can feel my eyes burning. I hate myself when I cry. And I always do with her. I’m seventeen and shouldn’t be seeing a child psychiatrist anyway.
‘And the writing is going well?’
I look into her face and try to work out the meaning behind her glasses and her smile.
I smile back. A wide grin, showing all my teeth.
‘I write nightmares,’ I say. ‘Darkness everywhere. And monsters. Maybe with a knife. Maybe a slick, sexy monster who wants to fuck you up the arse with a spiky dildo.’
I’m showing off. I can’t help it. It’s better than crying.
Dr Gillette nods her head. Unmoved as always.
‘There’s one about kids drowning in cauldrons of hot blood,’ I say. ‘Men are lacerated in flesh-eating swamps. Ghosts violate women. Blood spews and guts get shredded.’
‘It’s good you do this, Penny. I know you excel at it. But maybe you could expand your repertoire? Write something you find really difficult. Set yourself a challenge.’
I’m thinking. Lots and lots of thinking. Everything is a challenge, you prat.
‘Do the doctors think I’m crazy? Am I crazy?’ I say and hold my breath.
‘Of course not.’ She smiles, a malevolent Cheshire cat. ‘You are just rather sensitive. And you have been a little unhappy at times, haven’t you?’
I don’t know whether she wants me to answer. We leave the question hanging in the air, caught in David Cassidy’s Hitler moustache. I know I can’t trust her to understand what’s in my head. I told her once, just once, that I had cut myself and they put me on a tablet that made me so sleepy I couldn’t write a thing.
‘There’s really exciting things out there right now. That’s why I can’t wait to go home. I’m going to make things happen.’
Dr Gillette almost laughs. I want to knock the glasses off her face.
‘You’ll make something happen, Penny, I’ve no doubt about that. But softly, softly. No need to rush. Let the nightmares fade a bit.’
I cast my eyes back to David Cassidy and decide later, you – you, ugly-mug, will be ripped right down. While I play my New Boots and Panties!! LP.
Somewhere, life is happening. And I am going to be part of it. It’s Fate and Destiny.
Home. Bored. Writing. Rejection. Then I’m back in Beechwood again. Nurse Brandy has long since left. I’m on my bed, waiting for the dreaded boss, Dr A. She bellows like a rutting bull, looks like Brezhnev in a dress and scares the shit out of everyone. Including the staff, who are more nervous than we, jumping around like fidgety squaddies whenever she marches into the ward.
I’m in for tests and physio. Again. Again. I wait, jittery, keen to get it over with. I want to put on my cassette player and listen to The Specials but I know I can’t.
Dr A laughs. The curtains shake as the deep sound blasts down the corridor. I stretch my legs out as straight as they will go and wonder whether I should have worn my miniskirt after all. It’s very short and dripping with vicious zips. I’ll be told off if she detects things are worse in my joints, and if I need a longer stay in the hospital. But I don’t mind too much because hospital is peaceful compared to home.
She’s here, large and loud at my bed, her deep-red hair puffed up.
The whitecoats herd behind her, a lot of flustered shuffling. There are the junior doctors, the sister, the senior physiotherapist, students, researchers – we are all very interesting cases. My mouth turns dry and I don’t know where to look.
Dr A has eyes that bore into you like lasers.
‘Hello, young lady, here you are again!’
I say nothing and know she expects nothing.
Her lasers switch down and bore into a page of my medical notes.
‘Bloods?’ she barks at Dr Greenberg. He is red-faced, his thick-rimmed black glasses steaming up.
‘Raised ESR,’ he mumbles, waving a pen over an invisible pad. ‘Inflammation high.’
‘And what are you up to these days, Penny?’ She says my name with a hint of menace and I know this time she is expecting an answer.
‘Writing.’ The word falls from my lips like an apology.
Dr A stares.
There is silence. It goes on. And on. I’m frozen but hot all over.
‘Well, young lady,’ she says, addressing her minions, ‘I look at the world today and I don’t think a writing career is realistic for someone like you.’
She nods her head. They nod their heads. Some murmur noises of agreement.
‘I think we’ll follow the usual programme,’ she continues, now in a conspiratorial tone to Dr Greenberg. ‘She’s a classic case and she usually responds well. Oh, set up another visit with Dr Gillette in Psychiatry. We need some sensible plans for your future, don’t we, young Penelope? Get you toughened up a bit!’
She flicks the lasers back on me and smiles like a famished bear. ‘And work hard on those knees. You can’t hide the fixed flexion from me!’
The underlings manage a chortle as Dr A marches on to the next bed.
My eyes blink with tears as I contemplate seeing Dr Gillette.
I suddenly don’t know what I want. To stay here or to go home? Either seems a dead end, and since my episode with the pills and razors in April I see the shrink at everyone’s whim – never by my choice, because I want to.
I toy with my cassette player, to relax into music as soon as I dare, and almost miss a sudden visitor.
She has chestnutty-brown hair to her shoulders, and she wheels alongside my bed, her legs out on a board. One is in a splint. Around her neck is a serious-looking, white neckbrace.
I notice most of all that she has amazing eye make-up. A soft blur of plum over her lids and eyeliner to the edges.
‘Are you a writer?’ she asks. ‘I heard Dr A having a right go about it. What do you write?’
‘Anything. Everything,’ I say, amazed. ‘It’s all I’ve ever wanted to do.’
‘Me too. I’m Tamsin by the way.’
‘What do you do?’ I wriggle myself to the edge of the bed to get into my wheelchair.
‘Mostly poetry. But I’ll try anything,’ she says. ‘Love that bloody skirt. You’re pretty brave wearing it in here.’
I giggle. Tamsin giggles.
‘When did yours start? I was eight when the sod got hold of me.’
I know what she’s talking about and am pleased the dreary subject will be out of the way quickly. We know we’re rarities. They keep telling us. But as inmates we have to ask.
‘I got ill when I was nearly three,’ I say. ‘Don’t remember much about it, other than being taught to say “Still’s disease” or “childhood rumertoid-arthur-ritus” like a parrot when I was very young.’
Tamsin laughs. ‘Oh bloody big arseholes. It’s shit, isn’t it? I mean, who cares after all? Only them.’
‘I know,’ I say. ‘Exactly.’
Within ten minutes we’re at the dining table and we can’t stop talking. We spread out our poems. We talk about CND, the crisis in Afghanistan, as Christmas looms near.
I offer to do her a tarot-card reading. She lends me her tape of Leonard Cohen and I promise to do one of The Specials. I tell her I’m KATA KOLBERT. She comes up fast with K.OSS. We talk about our cats, Ollie and Tooty. We both love Blake’s 7. Wine, vodka. Proust – at least the bits we got through in Swann in Love. And we talk about what next. Start a band. Write a novel. Have sex. Move to London. Till it’s dark, over and over again we talk.
Next, it has to be what we want.
10 August 1984: I write this in such a state of elation!! Had many letters this morning, amid them was a brown envelope with my name printed in large spiky letters. Yes!! Here was dearest Morrissey writing me the sweetest, most touching of letters!!
Dr Gillette makes me want to vomit. Tamsin begs me to stop seeing her but I don’t really know how to fight this. When I come back from an appointment I feel as if my nerves and my thoughts have been pulled outside my body, and are shrieking in the sharp cold air.
All I can do is listen to The Smiths by The Smiths. Morrissey’s voice is an enchantment that heals. And as the words of the 12” single ‘How Soon is Now’ melt into my thoughts, I know he knows.
I’ve got another notebook, especially for The Smiths.
For Morrissey.
But the nagging of Dr Gillette makes me want to do something else.
I want to put my words in a different place and hope they can do some magic.
I rummage through the pile of paper in front of me, through the scraps, the mail-order catalogue bills, the mounting postcards from Tamsin.
At last I find the pad of blue writing paper. I take a deep breath because this has to be the most perfect handwriting I can manage.
I clasp my best, most precious pen and write ‘Dear Morrissey’.
Writing letters gets me somewhere sometimes, and the one to him is the most important ever because I know he’ll understand.
I have made a pact to myself and Destiny that I will give up writing unless he replies.
I’m worn out. Loads more Dr Gillettes, beardy shrinks and telling me to be realistic. This was a test.
It takes me three hours and I have to start all over again once. But by the time Mum comes in to draw my curtains and chatter about what’s for dinner, the letter is in the envelope, with a decent photo of me, with Tooty the cat.
Addressed to Morrissey, c/o Rough Trade. Signed by Kata Kolbert.
Somehow I get through Easter. I hate Easter. And April. I don’t know why, but it always feels like a grey, boring time. Extra boring on top of the other boring, of the endless days of boring incarceration.
Mum comes in with a mid-morning coffee, amiably attacking the weather. I notice there’s a wedge of post under her arm.
‘You’ve got a funny letter here, Pen,’ she says, putting the post on my desk. ‘Bloody weird handwriting.’
I look down at the brown envelope. In jagged capital letters there’s my address. There’s KATA KOLBERT.
I don’t recognise it but as I go to rip the letter my heart is bursting from my dry throat, a bird fluttering for freedom. I’m sure my mouth is open as I look at Mum, then look at the letter.
I can’t speak. How can I? I know, without any doubt.
It’s from Morrissey.
Using my new gift of a precious fountain pen I prise open the corner slowly.
‘Shall I do it?’ says Mum.
‘No!’ I gasp and hold it to my body, hating that the sacred moment has been broken. ‘It’s okay, Mum, I’ll do it.’
‘Alright, alright,’ Mum says, rolling her eyes, grabbing my dirty clothes from the end of my bed. ‘But don’t forget there’s a social worker coming later.’
I don’t answer as she leaves the room.
There’s always a bloody social worker – and I’m not willing to let thoughts of them pollute this hallowed moment.
I finally defeat the envelope and pull out a postcard of Morrissey and Sandie Shaw. The light of illumination blasts through my senses. Rocks my world to its foundations. In black spiky writing it says:
Dear Kata,
You write delightfully, a priceless gift. And yes I accept the compliments! Believe me, I need them – please send more! The photo shall be cherished.
Be lucky, be happy.
Love Morrissey
My breath quickens. What do I do? Call Tamsin? Write in my journal?
No. Morrissey needs more compliments. So he shall have them.
I will use my priceless gift.
The ‘e’ key on my new, secondhand typewriter is dodgy. I smack it with a pencil as the key lifts up. The letter to Jamming! magazine must be perfect.
I’ve got a thin blanket over my legs because the portable gas heater has run out again – and Mum says there’s no money to get a new bottle. I pull the blanket higher and start to type. My little tinny cassette player does its best to push out ‘Atmosphere’ by Joy Division.
The magazine is beside me. ‘Breaking down the barriers’, it says along the top on the cover. I bite my pencil as the wind howls on and on.
I type a few words, staring at the latest photo from Morrissey on my desk. It’s a big one in black and white, that he sent to me personally, and it says, ‘Ever and Ever Morrissey’.
I attack the bastard typewriter and ignore the stupid ‘e’.
I yearn for friends, people like me who know they are different, who rage, who want things to change. Not just disabled people – though I’m certain there’s more than just Tamsin and me out there who feel the same, who want change.
I type ‘there are real barriers for some of us’ – then delete it.
I take a swig from a tall glass – Ant slipped some vodka in it earlier – and the burn into my guts makes me feel better.
The ‘e’ key bounces as I lose myself in a flurry for several minutes. Only Tooty interrupts me as he comes in with a small cat-chirrup and jumps on the bed.
Another few lines and another glug of secret vodka.
When I notice it’s 2 a.m., I stop and pull the paper from the typewriter, wincing at the faint ‘e’ imprints. It takes another half an hour to fill them in, in my best handwriting, and I’m so tired I don’t know if I can get into bed on my own.
Someone creeps downstairs and there’s a soft thud outside my door. I’m not surprised when Ant leans his head around it.
‘What you up to, sis? Late to bed again?’
‘You can talk,’ I say, poking my tongue out. ‘I’m writing a letter to Jamming! So there.’
Ant comes into the room and flops onto my bed in the corner. ‘That’s all you bloody do. Write, write, write.’
He scowls, but I know he’s proud of me.
‘Piss off, Ant,’ I say fondly. ‘Remind me. How many gigs have you been to this year?’
‘Loads. Can’t really remember,’ Ant yawns.
‘And could I have managed at any of them?’
‘Not really. It gets crazy, Pen, everyone starts moshing and pogoing.’
I fall silent, staring at my letter.
‘I wish you could mend the “e” on this typewriter.’
‘What you saying in this letter anyway?’
‘They’ve got this thing, right there on the front cover, about breaking down the barriers. And I’ve been thinking, do these people know about barriers? It’s not just about getting into a concert, it’s about people having a better attitude.’
Ant rubs his light stubble.
‘I’ve told you I’ll take you. We can give it a go. I’d look after you, Pen.’
The wind pushes against the windows and shakes through the shabby house. I look at him and smile.