Looking at the Stars Read online

  The first blockage occurred about three months after the shunt had been fitted. I recognise the symptoms now – I get a ridiculously bad headache, my eyes go a bit bulgy and then the pain gets so bad I literally can’t move or speak – but back then it was just a case of Mum spotting that I was in trouble. Luckily, she was good at it, because if the shunt blocks, I have to have surgery within four hours or it’s game over.

  I get sent straight into a CT scanner when I go into hospital with a suspected shunt block. It’s like a massive doughnut and I have to lie on a bed and have my head taped down to keep it still while the doctors do a scan of my head, neck and chest to make sure my shunt hasn’t disconnected.

  Any problem with the shunt involves brain surgery, but the X-rays reveal whether they have to go into my stomach, too, to sort out the tubing. It’s like a hosepipe; sometimes it gets a kink in it. That’s the worst part – worse than them cutting into my brain, because they have to go through all the layers of muscle, and afterwards I can’t sit up. And laughing is really painful. I’ve had three stomach surgeries so far and each one has left me with a different scar.

  I just needed brain surgery that first time. And the time or two after that, I think. To be honest, it’s difficult to remember exactly when and why all the surgeries took place, even with all the photographs Mum took, because after a while they merge into one; but I’d certainly had five operations on my head by time I was five years old. The children’s neurosurgery ward was as familiar as home.

  On TV, hospitals are all drama and flashing lights, but the truth is that being in hospital is really boring. Mum was always inventing silly games to pass the time. My favourite was ‘Guess the flavour of the chocolate’, which involved taking a chocolate out of the box and guessing what was inside it without looking at the little menu thing. It’s more fun than it sounds!

  I had a lightsaber battle with Mr Sparrow one time, too. I was about two and a half and I was back on the ward recovering from an operation to fix my shunt. Mr Sparrow came round to see me with this massive team of students – he always had loads of students with him; they thought he was God. I was really into Star Wars at the time and I never went anywhere without at least a couple of lightsabers, so I held one up to him and said, ‘D’you want a fight?’

  To everyone’s amazement, he nodded. ‘Yes, I do,’ he said, taking one of them off me.

  We fought for about five minutes, me sitting up in bed in my pyjamas and him battling against me with his saber. The nurses ended up in hysterics and the students and other patients stared at us, amazed. Mr Sparrow was a leading brain surgeon, after all – a seriously important guy in a suit, and he didn’t muck about. After that, whenever he saw me he’d say, ‘Oh look, it’s Lewis.’

  I was lucky. My family were with me all the time, but I remember noticing that the boy in the bed next to me was always on his own. His head was so big that he couldn’t even lift it off the bed to see what chocolate to pick from the box. I may only have been about three, but I could see that I had it pretty easy compared to most of the others on the ward. Yes, I was sick, but so were all the other kids I met, and at least I got to go home.

  The two things I looked forward to each day on the ward were the daily trollies; one was filled with sweets and the other brought our food and was shaped liked a fire truck. Neither of them would have been possible without somebody raising money to pay for them. If you’ve ever spent any time in hospital you’ll have noticed that all the nice things have been paid for with money raised by people doing brave, bold or plain silly things in return for donations.

  That started me thinking. The idea that a three year old could wake up one day and decide to start raising money to help sick children sounds ridiculous, even to me, so most people assume that Mum was the driving force and I was just a cute figurehead. But it wasn’t like that. In the world that I lived in, there were always new causes that needed money, and people were forever coming up with new ways to raise it. It was normal. I was just joining in.

  One day I was at home with Mum and I said, ‘Can we help the sick children too?’

  She wasn’t thrown by the idea. She just said, ‘OK, what do you want to do?’

  ‘Bowling,’ I said.

  I knew about bowling because I went with my godmother, Heather. She ran the local bowling centre and it turned out that the world champion trained there sometimes, so Mum asked Heather to pull a few strings. The next thing we knew, the bowling champion of the world had agreed to go head-to-head with me in a match in aid of the Association for Spina Bifida and Hydrocephalus (ASBAH, now known as Shine; spina bifida is linked to hydrocephalus). Mum helped me make some sponsorship forms and posters to put up in the bowling centre and the hospital (she and my sisters still do that stuff for me today – I couldn’t do what I do without them), and about 100 people, including the local press, came to watch. I won, obviously, and I remember that everyone wore T-shirts with my name across the back, which was pretty cool.

  Most of the events I did then were for ASBAH, but when I was five I organised a fun run to raise money for a special paediatric video unit that would help work out whether epileptic children could be helped by surgery. I had started school by then, so I persuaded 40 of my classmates to dress up in superhero costumes and run the Mini Great South Run. It wasn’t difficult – what kid doesn’t want to dress up as a superhero? (I was Superman, of course.) I gave them all sponsorship forms and they pestered their friends and family for money. Then the next day, 22 adults ran the full ten-mile course, also dressed as superheroes. I remember feeling a bit sorry for Buzz Lightyear because his costume was really heavy. The whole event raised over £2,000.

  I did it again a couple of years later, only that time I had to ‘run’ the 1.5km course in a wheelchair pushed by Mum, Chloe and Jessica because, by some weird coincidence, I had become an epileptic child myself.

  My Top Tips for Life

  My mum always says that she knew there was something wrong with me before I was diagnosed with a brain tumour at 17 months, even though the doctor said I was fine. She said it’s called parental intuition – you just know if your child’s not right. So if you’re worried about something, keep pushing, and don’t be afraid to speak to someone else if you’re not getting anywhere. Don’t be afraid to challenge the system. This applies to so many things in life, not just your health.

  I started fundraising at three years old and people thought I was mad. They thought my mum was too. Don’t let people’s ignorance, or lack of understanding, make you change your goals. Explain what you’re trying to do and just keep moving forward.

  If someone you know is trying to achieve something, ask if they need help, or offer your support. I wouldn’t have achieved anything without the support of my mum and sisters; they read and write for me, design posters, deal with the heavy legal stuff and help me get to places so that I can carry on doing what I do. This book may be about me, but there would be no book to write without my family. We’re a team.

  A Day in the Life: 22nd November 2017

  4am: My head hurts – like, really hurts – and the rails on my bed are up, which makes it hard for me to get to the toilet without waking Mum, who’s asleep on the floor. I don’t think I’ve had a seizure as my muscles don’t hurt that much, so I try to get to the toilet by myself.

  4:30am: I manage to stand on Mum’s foot as I’m getting out of bed and wake her up anyway. She says I did have a seizure about 11.30pm, and she was so tired that she’d just fallen asleep on the sleeping bag.

  8am: Time to take my meds, shower and get ready for college.

  9am: I meet my learning support assistant (LSA) in the canteen and say goodbye to Mum.

  I’m pleased to be here. There are some great people in my class and we have a lot of fun. It was weird when I first started college, but now they all just think I’m funny – in a good way.

  I have a time-out card that I can use in any lesson if I need a break or feel unwell. I try not to us
e it.

  12 noon: I meet Callum and Jasmine from Friend Finder for lunch. Jasmine’s just like Mum – she’s always checking I’ve had something to eat or drink!

  2pm: My head still hurts so the college secretary phones Mum to come and get me early. I’m meant to be here until 4pm.

  6pm: I’m feeling better so I’m playing Charlie on Xbox Live. We’re playing FIFA and I’m winning!

  8pm: I have spaghetti for dinner with Mum and Jess, but I don’t feel too good so I decide to go to bed and watch a film. Mum comes in with my meds.

  11pm: I’m still awake but I’m feeling sleepy so I’m hoping for a quieter night.

  SURGERY, SEIZURES AND HOLES IN THE BRAIN

  ONE NIGHT I WOKE UP to find two paramedics standing at the end of my bed. They were wearing green uniforms and purple plastic gloves and, before I could realise what was happening, they’d put me in an ambulance and we were off to Portsmouth Hospital. I was six years old.

  I don’t remember anything else, but this is the story I’ve been told. Mum came up to my bedroom to check on me before she went to bed, as she did every night, and found me fitting in my sleep. She screamed, like mums do, and then called 999.

  ‘I think my son’s had a stroke,’ she said. ‘The whole left side of his face has gone all droopy.’

  The operator was really calm. ‘Go downstairs, open the front door and then go back up and stay with your son. The paramedics are on their way.’

  They were at the house and in my bedroom five minutes later.

  ‘It’s not a stroke,’ they said. ‘He’s had some kind of seizure.’

  ‘He’s got hydrocephalus,’ Mum told them. ‘He had a brain tumour and he’s got a shunt in his head.’

  That freaked the paramedics out. I was downstairs and in the ambulance before Mum had had time to ask our next-door neighbour to come and sit with Chloe and Jess. (Leigh Park may be a bit rough, but the community is solid. When there’s real trouble, we help each other out.) We were in the hospital half an hour later.

  It turned out that I’d had an epileptic seizure. Mum had been warned that epilepsy could be a side-effect of a brain tumour, but four years had passed since Mr Sparrow removed mine, so she thought I’d got away with that one. (In fact, the doctors said that the seizures had probably been going for ages before this big one, because I’d have these weird times when I just zoned out; but no one had thought much of it. That’s the problem with having so many things wrong with you: there are loads of explanations for your symptoms.)

  I don’t think I was really aware of what was going on. I’d spent so much time in hospital anyway that I just accepted this as yet another admission, and the term ‘epilepsy’ didn’t seem all that scary – you’re diagnosed as an epileptic after a single seizure. It doesn’t mean you’ll have another one.

  I have between five and seven a day, on average.

  Seizures are like electrical short-circuits in the brain, and in my case, the worst ones, the tonic-clonic, happen mostly at night. They cause violent muscle contractions and I pass out – the type of thing most people imagine when they think about epilepsy. The convulsions are so powerful that they flip me right over. My pillow has special breathing holes in it so I don’t suffocate, and there are guard rails on my bed. I only know when I’ve had one because I wake up with pulled muscles, or blood all over the sheets because I’ve bitten my lips again. I hate it when that happens. There’s an alarm in the mattress that wakes Mum up when I’m convulsing. She doesn’t sleep very well, I’m afraid.

  A lot of people say that epilepsy is a hidden condition because your body doesn’t show any obvious signs that you’ve got it. If I have a seizure in the street, which I do quite often, people think I’m just mucking about. That’s the hardest thing, in a way.

  The daytime seizures tend to be either random twitches like a sharp, involuntary head turn, or just little absences when I lose track of where I am and what’s going on. They happen so frequently that we’ve learned to be quite relaxed about them, and these days Mum only calls an ambulance if my lips go blue, or if the seizure’s gone on for longer than five minutes.

  There are drugs to control the seizures, of course, but it so happens that I have a very special sort of epilepsy that is drug resistant.

  It took a couple of years of trials to work out that drugs didn’t help. That was fun. The thing about these drugs is that they play with your brain and affect your mood. One particular combination turned me into a total psycho. I remember it really clearly: one minute I was normal Lewis and the next I started attacking anything and anyone.

  One time I was at 24/7 Fitness, the gym where Mum helped out sometimes, and I went for this massive bodybuilder. I just walked up to him while he was doing some weights and slapped him on the head. He put the weights down, stood up to his full height and said, ‘It’s a good job I like you, Lewis.’

  It certainly was. He was huge.

  I kicked a nurse in the shins and once I even went for my nan. She’d come over to see us and Mum was trying to restrain me.

  ‘You’re overreacting, Emma,’ Nan said. ‘He’s just a child. Let him go.’

  ‘OK,’ Mum said, ‘but don’t say I didn’t warn you.’

  Then she went into the kitchen to make a cup of tea. As soon as the door closed, I went nuts. I threw myself at Nan, punching and kicking. She managed to get hold of my arms and push me onto the sofa before I did any real harm, but it scared us both. I knew I shouldn’t be doing it, but I had no control; it was like someone had taken over me.

  ‘I’m so sorry, Nan,’ I said, shocked at what I’d just tried to do.

  ‘I know that wasn’t you, Lewis,’ she said.

  We sat on the sofa together while we caught our breath, trying to make sense of it.

  The next drug had no effect at all, so I was given another. Still nothing. Then the doctors added a third. This cocktail just made me feel really ill. I was drowsy and felt sick all the time, so Mum and I assumed there was a problem with my shunt. She took me off to hospital for some neurological tests – the ones where you have to do things like squeeze the doctor’s fingers and hold your hand out flat. I failed all of them.

  The EEG, which tracks and records brainwave patterns, revealed that I’d gone into something called ‘non-convulsive status epilepticus’, which basically means that a part of my brain was fitting non-stop. You could see this continuous spike of electrical activity on the EEG. It’s really dangerous, so it was a no to those drugs too.

  We’ve tried a couple of other epilepsy drugs since then and the ones I’m on now do help a bit (I know that because the doctors take me off them when I go into hospital for monitoring, and then I have massive seizures all day long), but fewer than five seizures a day seems to be as good as it gets.

  Mum asked my consultant recently if my epilepsy was ever going to get better. She looked at me and said, ‘Nothing is impossible. But no, I don’t think it’s going to go away.’

  That was tough to hear, but I never give up hope – I even tried the ketogenic diet once because we’d heard that it could help. It didn’t. Eating almost nothing but fat and protein just made my breath smell. I’m a possible candidate for surgery, but so far no one has found the precise area of my brain that’s responsible for the seizures. But technology is improving all the time, and I’m due back in hospital for another round of ‘monitoring’. There’s a chance it will be what they call ‘invasive’. I haven’t had that before, but from what I’ve been told, invasive sounds about right: first they’ll cut a trapdoor in my skull, and then they’ll cover my brain with a mesh cap which I’ll have to wear for a week (cool or what?). The hope is that someone will be able to pinpoint the miniscule bit of my right frontal lobe that’s causing all the trouble. If that happens, the surgeons will be able to remove it and things might get a bit better.

  I don’t much like the idea of them taking out a chunk of my brain, if I’m honest, but it’s a choice between having surgery that might, possi
bly, reduce the seizures, or carrying on as I am. Now I’m 17 I get to make the decision myself and I really don’t know what to do. Obviously, I’d like to have fewer seizures, but every idea they come up with sounds even more lethal and scary than the one before. I’m keeping my fingers crossed that cannabis oil becomes readily available on the NHS soon. It’s part of the cannabis plant, but it doesn’t have the stuff that makes you high. My consultant says that trials carried out in other parts of the world suggest it could help control seizures, especially in young people with drug-resistant epilepsy like me. It’s already been approved for use in America, so I may not have too long to wait.

  When anyone hears about my medical history, they always focus on the brain tumour and the mechanical shunt in my head that keeps me alive, but in fact it’s the epilepsy that’s my biggest demon. That’s what controls what I can and can’t do in life.

  These are some of the things I can’t do:

  I can’t remember

  My memory is tragic; so bad that I can barely remember my own name on a day-to-day basis. There are two reasons for this: surgery and seizures.

  Brain surgery damaged my memory trigger, which means that although my long-term memory isn’t too bad, I can’t recall anything without help. Mum has made picture books of my life and filled the house with photographs, which all act as memory prompts. Without those, my life so far would be a total blank and I couldn’t have told you any of the stories in this book. She had to sit in on all the interview sessions with boxes of photos and press cuttings.