Looking at the Stars Read online




  Published by Lagom

  An imprint of Bonnier Publishing

  3.08, The Plaza,

  535 Kings Road,

  Chelsea Harbour,

  London, SW10 0SZ

  www.bonnierpublishing.com

  Hardback ISBN 9781911600770

  eBook ISBN 9781911600800

  All rights reserved. No part of the publication may be reproduced, stored in a retrieval system, transmitted or circulated in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without prior permission in writing of the publisher.

  A CIP catalogue of this book is available from the British Library.

  Designed by Envy Design

  Copyright © Lewis Hine 2018

  Lewis Hine has asserted his moral right to be identified as the author of this Work in accordance with the Copyright, Designs and Patents Act 1988.

  Every reasonable effort has been made to trace copyright holders of material reproduced in this book, but if any have been inadvertently overlooked the publishers would be glad to hear from them.

  The author and publisher shall have no liability or responsibility to any person or entity regarding any loss, damage or injury incurred, or alleged to have incurred, directly or indirectly, by the information contained in this book.

  I would like to dedicate this book to all the doctors,

  nurses and healthcare professionals who have saved

  my life and supported me over the past 17 years

  CONTENTS

  A Bit of Background Before You Begin

  1.Mr Sparrow Saves the Day

  2.Surgery, Seizures and Holes in the Brain

  3.School

  4.Friend Finder is Born

  5.Hello, Wembley!

  6.Thinking Big

  7.Going Viral

  8.My Big Prom

  9.Everyone Needs Backup

  10.Recognition

  11.Next Stop, the World

  Over to Mum

  Afterword

  Acknowledgements

  Images

  ‘I love what Lewis has done with his life, it’s so inspiring to hear. Giving him his Radio 1 Teen Hero award on stage at Wembley made me very proud, and hearing how loud the crowd screamed just showed what people thought of the amazing work he’s doing. I saw first-hand the incredible things he is creating with Friend Finder when we worked on the prom together. Lewis is changing people’s lives and he’s a true teen hero.’

  NICK GRIMSHAW

  ‘To be comfortable in your skin was the biggest topic for me because I’m somebody who’s always judged just by how I look. Lewis is showing the world it’s OK to be different and that disabilities and personalities make the world colourful. Lewis said I’m his hero, well, he’s mine. He is so young and going through so much just to stay alive and yet he gives his everything to help others and make a positive impact in the world. Keep fighting Lew.’

  KID INK

  ‘To me, in this day and age when we have so much bad news, it’s so wonderful to see someone so young doing something so brave and so wonderful. It teaches us all a lesson. It’s just really inspirational.’

  ELTON JOHN

  ‘Lewis continues to do incredible things in his life and constantly proves that one person can make all the difference in other people’s lives, and for that I (and everyone else) am forever grateful.’

  KSI

  ‘Lewis is a true inspiration for us all to remember to never give up on our hopes and dreams – stay positive and keep fighting! I feel very honoured to support Lewis with this book that also raises awareness of epilepsy.’

  JENNIE JACQUES

  (QUEEN JUDITH IN VIKINGS)

  A BIT OF BACKGROUND BEFORE YOU BEGIN

  MY NAME’S LEWIS, LEWIS HINE. I’m 17. I spend a lot of time sitting in my room playing Xbox games and watching films, and I can’t leave the house without a responsible adult. Usually my mum.

  I live just outside Portsmouth in a place called Leigh Park. It’s the biggest council estate in the UK and, if you Google it, it comes up as one of the worst places to live in the whole of England.

  Not long ago, my little sister Jessica and I were walking back from the Co-op when she nudged my arm.

  ‘Hey Lewis, look at that,’ she said.

  I turned. This bunch of little kids was coming towards us holding a plank of wood between them. They could only have been about eight years old, but the plank they were waving at us had nails sticking out of it.

  ‘Hey!’ they shouted at us. ‘Hey, you!’

  Then they started coming towards us.

  ‘We’re in trouble,’ I said to Jess.

  We were only about 15 metres from home but the thing is, I can’t run. I’ve got epilepsy and every time I have a seizure my muscles get weaker. I have a lot of seizures – anything between 30 and 50 a week is normal, so there’s no strength left in my legs. Half the time I’m in a wheelchair.

  ‘Don’t worry,’ Jess told me, grabbing my hand.

  She pulled me over the road and we made it across just before a white van drove past. That stopped the kids and gave us time to duck into our local corner shop. We went down the back aisle where all the cleaning stuff is and hovered about until we were sure the kids were gone. The bloke who runs the shop probably thought we were nicking something. There’s a lot of shoplifting around here and there had been a nasty incident once when he’d suspected me. I’d gone in to buy some chocolate and when I picked the bar up, my hand clamped – that’s an epilepsy thing too – so I had to balance it against my body. I was just trying to make sure that I didn’t drop it, but the shop owner assumed I was trying to put the bar in my pocket. There are a lot of misunderstandings when you’re disabled.

  And although I don’t look disabled unless I’m in my wheelchair, I am. All in all I’ve had 13 life-saving brain surgeries so far, which means that my brain looks like Swiss cheese. All sorts of stuff has fallen through the holes, like my memory trigger and whatever it is that tells you when you need to wee. The epilepsy started when I was six, but I was diagnosed with a brain tumour and hydrocephalus, or water on the brain, when I was 17 months old. The surgeons managed to remove the tumour, but they couldn’t cure the hydrocephalus. They’ve put a kind of tap in my skull for that; they call it a ‘shunt’.

  I go to the local college. I’m still doing maths and English because I failed my GSCEs, and I’m also doing a foundation learning course that includes a module called horticulture. That’s gardening, basically. I hate gardening but the only other option was sports and, as you’ve probably guessed, sport isn’t exactly my strong point. It’s only a one-year course and I don’t know if I’ll pass anyway. It doesn’t matter though, because I don’t go to college for the education. I go because that’s what normal kids do and so much of my life is not normal that I really enjoy the bits that are. Even if it means having to pretend to be massively into plants.

  So college is OK and I actually like living in Leigh Park. Despite the odd wild kid, our neighbours are nice. People look out for each other. It’s been home to me, Jess, my older sister Chloe, my mum Emma and our two dogs, George and Poppy, since I was a baby. Poppy’s a Yorkshire Terrier and so is George officially, but we suspect he might actually be half wolf. He doesn’t bark – he howls.

  So in lots of ways I’m a pretty normal teenager and probably not someone you’d think would ever be asked to write a book. But I was. A woman called me saying she was a literary agent, and asked me to meet her. We had lunch in a cool burger bar in London and she talked about a hardback book with my face on the cover and my story inside.

  If that sounds mad to you, it sounded completely insane to me. For a start, I can hardly write, because the muscles in my han
ds are too weak. But she’d seen the Facebook video about my life – I’d posted it on 17th March 2017 for my sixteenth birthday, and it went viral. She said I had a story to tell. And it turns out that you can talk a book into a digital tape recorder.

  So I said yes. And I said yes for the same reason that I made the video: because I don’t believe that disability is a bad thing. The bad thing is keeping silent about it. My life is a bit of a challenge. I’d be lying if I said I never mind missing out on something because I’ve had yet another seizure, or that it doesn’t ever bother me when someone asks me for the millionth time why I have a giant scar in the shape of a candy cane on the side of my head (it’s where the surgeons cut through my skull to fit the shunt that drains the excess fluid out of my brain), but the truth is, I think I’m lucky.

  When you’re told you might die at any moment, every day feels special and it certainly means that we Hines don’t sweat the small stuff. I did all the interviews for this book sitting in a camping chair in the sitting room, because the sofa Mum had ordered was six weeks late.

  Mum finally called the company on 17th December.

  ‘We have friends and family coming over for Christmas,’ she explained. ‘And I don’t think Nan and Grandad would be very comfortable on fold-out chairs.’ And she laughed.

  The delivery man said, ‘You’re dealing with this very well. I’d be losing it by now if it was me.’

  Mum just shrugged and replied, ‘Well, compared to what we face every day, a missing sofa’s not really top priority.’

  She’s right. Living with illness changes your perspective on life, and I think that’s a good thing.

  My physical and mental challenges also mean I understand how isolating disability can be, especially for children and young people who miss so much school that they can’t make friends. That’s what led to me launching my charity Friend Finder, and since that day in October 2015, Friend Finder has taken me on the most brilliant journey. I’ve met so many super-generous people who’ve supported the charity by donating money and time, and lots of incredibly strong people who are facing challenges much tougher than mine.

  And I’ve done some really amazing things, like meet Prince William and Kate and go to the Royal Albert Hall to see the UK premiere of Star Wars: The Last Jedi. But best of all, I’ve been given the chance to tell my story and show the world that, while illness and disability might define the length of your life, they don’t have to define how you live it. It’s OK to be disabled. In fact, disabled people make the world more colourful. We can light up a room with our stories. I’ve written this book because I want everyone to know that by supporting each other we can all achieve what we want to achieve.

  When we were trying to come up a title for the book, someone read me the quote ‘We are all in the gutter but some of us are looking at the stars’ (it’s by the famous writer Oscar Wilde). I thought it was really cool. My take on it is that, no matter what stuff we have to deal with, we just need to think big and remember to look at the stars.

  I hope you enjoy reading my story as much as I’ve enjoyed living it so far.

  MR SPARROW SAVES THE DAY

  I WAS FIVE DAYS OLD when I made my first trip to Southampton General Hospital. It was a small thing, fixed in an instant with a pair of scissors. I had been born tongue-tied, which meant that the tip of my tongue was attached to that funny flap of skin underneath it so I wasn’t feeding properly. The midwife spotted it, sent Mum and I along to the hospital for a quick snip and then we were home again. Sorted.

  My second trip, 17 months later, was a bit less straightforward. I was only a toddler, so I don’t actually remember any of this, of course, but Mum tells me that she’d been back and forth to the doctor with me for weeks because she knew there was something wrong. My head was massive – so big I had to wear T-shirts made for five year olds – and I’d begun to regress; I’d stopped walking and started crawling again. The doctor said big heads ran in the family. It got to the stage where Mum was practically camped out in the surgery, but it didn’t make any difference. They thought she was making a fuss.

  Then one day we went on a trip to Longleat Safari Park for my big sister Chloe’s birthday treat and apparently I just cried all day and kept banging my head with my fist. There’s a photograph of me with Chloe; she’s smiling her head off and I’m beside her with my dummy in my mouth, looking really miserable. You can see my eyes are bulging and my head is huge. Seriously big. I’m not going to lie; when I see it now, that picture shocks me.

  Anyway, we got home and the next day Mum went round to Nan and Grandad’s house in tears.

  ‘There’s something really wrong with Lewis, but no one will believe me,’ she said.

  She must have been in a real state, because Nan offered to take me to the doctor herself. Mum had just exchanged contracts on the house we live in now (we were moving from a two-up, two-down house around the corner, with no heating and a bathroom so tiny it had this extra-small bath you sat up in); so Nan told her to go round and measure up for curtains or something, as a way of taking her mind off things. Luckily for me, Nan saw a different doctor, who took one look at me and said, ‘He has sunset eyes.’

  Sounds pretty, eh? It isn’t. It’s when your pupils sink down, so more or less all you can see are the white bits. You look like a zombie, and it means the pressure in your head is so high that it’s about to burst your eyeballs.

  The doctor knew how serious it was straightaway. ‘You need to take him to hospital right now,’ she said. ‘Have you got a car?’

  Poor Nan and Grandad. They couldn’t get hold of Mum, so they called my Uncle Mike and asked him to go round to the new house and fetch her in his car. I can just imagine it: there’s Mum with her tape measure in her hand, chatting to the woman whose house she’s buying when Uncle Mike turns up saying, ‘Don’t panic, but Lewis has been taken to hospital.’ I bet panic’s exactly what she did.

  By the time Mum arrived at Portsmouth’s Queen Alexandra Hospital they’d already taken me to the assessment unit to do a scan of my head. They did it with an ultrasound, which wasn’t usually possible with a baby my age, but my head was so stretched that they could scan through the soft spot. When Mum was shown the scan she saw something that looked like a ball on the inside of my brain and her first thought was, ‘My God, he’s got a brain tumour.’

  A doctor took her into a side room and told her to sit down. That’s never a good sign.

  ‘Have you heard of hydrocephalus?’ he asked.

  She hadn’t.

  ‘Well,’ he explained, ‘it’s a build-up of fluid inside the skull, which can increase pressure and cause damage to the brain. Lewis has it, and if you hadn’t got him here today, he could be dead in his bed one day very soon.’

  Mum and I were bundled straight into an ambulance and transferred to the neurological unit at Southampton General. It must have been scary, but ask her about it now and she’ll say she was actually quite relieved, because she’d thought I had a brain tumour and no one had mentioned that.

  Her relief didn’t last long. I had more scans as soon as I arrived, and these ones revealed that as well as all the water on my brain, I actually did have a tumour: a choroid plexus papilloma, to be precise, which looks a bit like a cauliflower. They’re pretty rare, accounting for less than 1 per cent of all brain tumours and, to make matters worse, mine was in an unusual place. Most choroid plexus papillomas are found on the fourth ventricle, but mine was on the third, making it rare enough to get the medical staff excited. When I arrived in the high dependency unit, a whole bunch of students were brought in to look at me. It was my first taste of fame and I was too out of it to notice!

  Mum was told that the best surgeon for an operation this risky was the amazing Mr Sparrow. Or Mr Crow, as Nan insisted on calling him. (It got so embarrassing that we had to ban her from being around at the same time as him.) I owe that man everything – he saved my life several times and when he removed the tumour, he even sewed my skull
back together in a zig-zag so the hair would grow back better.

  We had to wait a couple of days for him to be available. Parents aren’t allowed to have a bed in the high dependency unit because of all the wires and machinery, so Mum just climbed into mine and refused to leave. She’d do exactly the same today, if it came to it.

  She says the night before that operation was the worst of her life. I was pumped full of steroids and painkillers and kept being sick on her and she knew that there was quite a high chance that I wouldn’t make it out of surgery. But I certainly wasn’t going to survive without the operation. When the doctors came to take me down to the operating theatre, she tucked this white Andrex dog that had come free with some loo paper under my arm.

  The operation took eight hours. It’s hardly a spoiler to say I survived, but my heart stopped while I was in recovery. Mum, who’d been sitting outside in the corridor the whole time, saw the doors crash open and six people in gowns, masks and those weird Croc shoes run out pushing a bed. She couldn’t see who was in it, but she caught a glimpse of the Andrex dog so she started running, too. When she was finally allowed in to see me she passed out. She was four months pregnant with my little sister Jessica at the time.

  I feel sorry for my mum. I can’t even imagine how hard it was for her to go through all that. And four weeks later we were back in hospital doing it all again. My fontanelle – the soft spot on the top of a baby’s head – had never fused together after I was born and Mum had noticed that it was starting to bulge. (She learned later that it not fusing was a sign of a problem, but it had also helped to save my life because it meant that my head could swell; if it had been hard, my head would have burst under the pressure.) Another round of scans confirmed everyone’s fears; the hydrocephalus was still there. Everyone had hoped that removing the tumour would cure that problem too, but I was unlucky I guess.

  If you Google ‘treatments for hydrocephalus’ it tells you that the most common approach is the surgical insertion of a drainage system, called a shunt. That’s what I’ve got. It means I have a valve behind my ear (it was made in a factory in Switzerland, where all the hi-tech watches are made), and a tube that goes from the valve down into my stomach to drain the fluid. It’s a clever bit of technology and it keeps me alive, but like anything mechanical, it can go wrong. Blockages are the most common problem, but sometimes the tube slips out of the valve. This means that, rather than draining away, the fluid leaks everywhere. And the whole thing can get infected too – I have to be really careful about coughs, colds and mouth infections.