Looking at the Stars Read online

  My teachers use prompts too. I have a learning support assistant (LSA) with me in all my lessons and it’s her (or occasionally his) job to give my memory a nudge with a key word. For example, if a teacher asks a question and I put my hand up, there’s a good chance that I’ll have forgotten what I was going to say by the time I’m picked. A good LSA will ask me to tell her my answer immediately, so when my memory fails she can give me a clue. Unfortunately, I’m not allowed any memory prompts in exams, which pretty much makes them a waste of time. How can anyone be expected to remember work they did a year ago when they can’t even remember what they had for dinner the day before?

  I was so fed up that I did a Facebook post about it after my GCSEs, and a woman messaged me back saying that she was a scribe who helped people like me take their exams. (A scribe sits with kids who have problems with their writing in lessons and exams. The kids talk and the scribe writes down what they say.) She said she’d often come across exactly what I described, and asked me if I’d be prepared to help her approach Ofqual, the exam regulation board. Obviously I said yes. So just before Christmas 2017, we got a letter back from Sally Collier, Ofqual’s Chief Regulator, saying that the letter was ‘receiving attention’. We’re taking the fact that it wasn’t a no as a real positive.

  As it was, the only GCSE I passed was food tech because it’s more coursework than exam.

  The seizures wipe my short-term memory, which means that anything that happened in the hours before I have one is lost forever. It’s made my school days an incredibly frustrating cycle of learning and forgetting – I’ll sweat over a list of spellings or a maths formula then have a seizure, forget the lot and have to start all over again.

  My memory – or rather my lack of it – is definitely my biggest challenge. We’ve developed all sorts of strategies to help. I used to have this Velcro ruler with pictures of all the things I needed to do that day stuck on it – everything from ‘read your English book’ to ‘have a drink’ – and I spent my childhood chanting rhymes and singing songs to try and make things stick. (We sang the times-table song so many times I think it’s actually engraved on my brain.) These days I have alarms on my phone and I rely on other people a lot, too. At home, Mum, Chloe and Jessica make sure I’m up in time for appointments, that I’ve replied to an email or eaten my lunch; and I had the brilliant Mrs Ford at secondary school. She really had my back and was always going off to buy things I’d forgotten for lessons. She was especially useful in food tech because I was always forgetting to tell Mum what ingredients I needed. But the truth is that every seizure I have damages my brain a little bit more. And it’s not going to get better. In fact, it’s probably just going to get worse. Does that upset me? Yes, it does.

  I can’t be on my own

  If I had to look after myself, I’d be dead within a day. All it’d take would be for me to have a little tiny seizure and walk into the road. Either that or forget to take my medication. I need 24-hour care and will do for the rest of my life.

  At home that means there’s a monitor in my bedroom, an alarm in my mattress and if I want to have a bath, I have to leave the door open and sing while Mum sits outside on the landing. It’s a draughty experience and not very relaxing, so I don’t bother very often.

  At school – and now college – it means I have to have an LSA with me all the time, not just in lessons but walking to and from them, at break, lunch and when I go to the loo. It’s partly because I can’t remember where I have to be or how to get there (I managed to get lost in the school corridors on my last day at secondary school, even though I’d been there for five years!), and partly because I could have a seizure at any time.

  Even the smallest seizure leaves me so out of it that I’m a danger to myself, but mine come with an additional hazard because I’m at very high risk of something called SUDEP. It stands for ‘sudden unexpected death in epilepsy’, and basically it means that when your heart stops beating because you’re having a seizure (which it does), it doesn’t start up again (which it should). So you die. Mum’s known that I have this level of risk for years, but my doctors only told me when I turned 16. My first reaction was total panic, of course, but it doesn’t scare me too much now. I wear a wrist monitor all the time which sounds an alarm if my heart rate goes above or below a certain level. It’s reassuring to know it’s there.

  I can’t go on school trips or to other people’s houses

  If you’re disabled you only get to go on the special disabled outings. At my school, that meant a day out fishing in East Meon every year. East Meon is a village about half an hour from where we live. I’m not really a fishing person, but it was quite fun (one year one of the kids managed to catch the science teacher), and there’s a picture of me holding an enormous trout in one of Mum’s albums. She says I got a prize for it.

  You don’t get invited to other people’s houses either. Or I don’t, anyway. My condition makes people nervous and I can’t say I blame them; what with the seizures and the possibility that I might die, I am something of a liability.

  Once, when I was about seven, my friend Stanley invited me to go swimming with him and his mum at the local lido. It was a hot day and Stanley’s mum was sitting on the grass in the sun watching us play in the pool. It was a toddlers’ one so the water only came up to our knees. We were mucking about, kicking water at each other, when apparently I just stopped and stood there in my armbands, completely rigid.

  Are you OK, Lewis?’ Stanley’s mum called, and rushed right over.

  ‘My head hurts – really hurts,’ I told her.

  She grabbed her phone and called my mum.

  ‘There’s something wrong with Lewis,’ she said. ‘I’m bringing him home now.’

  Then without stopping to get a towel, let alone change, she carried me to her car with Stanley jogging along beside us. Our house is only 20 minutes’ drive from the lido, but I’d thrown up over the back seat three times by the time we got there.

  Stanley’s mum banged on our front door and Mum opened it to find her standing there in her leopard-print bikini with me in her arms, still wearing my trunks and covered in sick, while Stanley looked on in his armbands. We must have been quite a sight. Mum took one look at me and called the ambulance. I was having brain surgery for a blocked shunt two hours later.

  After that, Stanley’s mum was the only person outside the family who’d look after me. The way she saw it, the worst had already happened while I was in her care. How much worse could it get?

  I can’t tell when I need a wee

  The bit of brain that tells me I need to pee doesn’t work.

  I have an alarm so I don’t wet myself.

  I can’t sleep in a normal bed

  I sleep in a hospital bed, complete with rails to stop me falling out, a hoist so Mum can lift me and a motor that makes it go up and down. (Currently there’s a giant hole in the wall behind the bed. That’s where Mum managed to get the back stuck when she was moving it one time.) I spend a lot of time in this bed.

  I can’t drink alcohol

  I’m 17 so I don’t drink yet anyway, but I’ve been given the warning already. One beer could bring on a seizure. So could a Red Bull, for that matter.

  I can’t write or read well

  As I said at the start, the seizures have weakened my muscles so much that I find it hard to hold a pen. I’ve missed so much school that I’m not that great at reading either. I like audio books, especially biographies of my favourite YouTubers like KSI.

  And here are some of the things that Mum can’t do because of what I can’t do:

  She can’t work

  She gets Carer’s Allowance, and when I turned 16 she got a letter calling her for a review about going back to work. Mum was really excited. She said she would do anything at all but before she started, the council would have to provide 24-hour care for me. The interviewer crossed her off the list. (Now she says she works for me as CEO of Friend Finder, but I don’t pay her. She’s my mum!) />
  She can’t sleep

  My monitors and alarms mean that Mum can hear what’s going on with me all the time, day and night. They keep me safe, but being constantly interrupted by electronic devices isn’t very relaxing for her. (She does get her own back though; the monitor is two-way so she can speak to me when she’s not in the room, and she likes to do ghost noises down it. They scare the living daylights out of me. One time, she spooked my support worker Matt, too. It was hilarious.)

  She can’t go on dates

  Who wants to date someone who can’t leave their disabled son? Recently I realised that I was so busy helping others make friends, I hadn’t noticed that Mum gets lonely too. That does make me feel sad sometimes. Maybe I should put a post on my social media about her, like an advert, and find her a boyfriend. That would be really funny. She’d go mad!

  It doesn’t look great set out that like that and over the summer of 2015, I did get really low. I was 14 and I had this vision of me at 30, still living at home with Mum looking after me because I can’t look after myself; we all know that that I’m not going to get better. I was due to have yet another operation, this time to change the programmable shunt (which hadn’t agreed with me) to a fixed-pressure one. I remember wishing that there were two of me.

  ‘I would like there to be two Lewis Hines,’ I said to Mum one day, ‘so I could be the one who wasn’t ill. Then I’d be able to go out and have some freedom.’

  I told the surgeon (a new one – Mr Sparrow had retired by then) that I didn’t want any more operations.

  ‘But it will make you feel better,’ he said.

  ‘You doctors are always promising that,’ I replied. ‘But nothing ever does.’

  The truth is that at this point, I’d had enough of my life in general.

  My Top Tips for Life

  Just because something has always been done a certain way, doesn’t make it necessarily the right way. Don’t be afraid to stand up for what you believe in.

  Every movement starts with one person. Be brave, be that person. It will be hard work and there will be days when you wonder whether it’s all work and no reward, but if you stick at it, you’ll make a difference.

  SCHOOL

  I’D HAD ENOUGH of school too. My memory issues mean that I have to work really hard to keep focused, so daily life is exhausting. I find it difficult to concentrate if there’s a lot of noise around me, so the simplest things caused me problems. Like paying for lunch in the canteen – I couldn’t work out how much my food was supposed to cost, so I wasn’t sure if I had enough money to pay for it. It sounds daft now, but it didn’t occur to me to ask for help and sometimes it was easier not to get lunch at all. (In the end Mum decided just to give me a £5 note every day but I used to forget to collect the change – I was the only person in the school to tip!) And as for lessons… well, I did my best, but when it takes all your energy to listen and you know you’ll have forgotten everything five minutes later anyway, it’s tempting to give up. But although it was a pain being tired all the time and struggling with lessons, it didn’t really bother me. I wasn’t going to school for the education after all. The reason I’d had enough was that I didn’t have enough friends.

  Primary school wasn’t too bad. I went to a small Catholic school and when I started, I was pretty much doing the same as the other kids. I guess I was a bit behind, but not so much that my classmates really noticed. They noticed the scar on the side of my head, though (you can’t miss it; it stretches from the nape of my neck to the top of my ear), especially when I went into school with new stitches. But when I explained that they were from another operation to replace or repair the shunt, the kids just nodded and accepted it. Small children are good at that.

  Stanley was my best friend. He was a real character, quite full-on, but he was always there for me and he made me laugh. He came to visit me in hospital once. He turned up with this giant bag of cookies and chocolates and then, when Mum went out of the room, he climbed onto my bed and started playing with the controls. He put the back right up and we were sliding down it. We didn’t know the room had a video monitor and that the doctor could see everything. Apparently he called the nurses and said, ‘I think Lewis must be feeling better – he’s hanging upside-down off the bed at the moment.’

  Stanley came for a sleepover once, too, and I had a seizure and managed to wee on him. (I lose control of everything when I’m convulsing.) I only found out about that recently, when Mum and I were talking about him. It must have been gross, but Stanley never said anything to me – I think that’s the mark of a proper friend.

  He was pretty bright, so we went to different secondary schools, which made it difficult to keep in touch. We still message each other, even see each other sometimes, and when we do he still talks about that day in the swimming pool when his mum rushed me home in her arms.

  Things started to get more difficult at school after the epilepsy kicked in. My seizures affect my balance, so I’d fall over a lot and bang my head, or just go all floppy and collapse. So when I was seven, the hospital gave me this helmet to wear to protect my head. I swear that helmet was the curse of primary school. It felt to me like it made the teachers really over-protective. They were so freaked out by the idea that I could smash my head and die that they made me wear it almost all the time – even when I was eating my dinner. Have you ever tried eating with a strap under your chin? It’s tricky, to say the least. Mum had found me one of those padded rugby helmets, a slight improvement on the hospital’s version, but even a cool rugby helmet only looks cool on the rugby field – in a classroom it just looks weird. Especially coupled with the headphones I had for when things got so noisy I couldn’t concentrate. To be fair, the other kids never took the mick, but I hated that helmet and the headphones. I hated that they made me stand out and I hated that they made me look different.

  I’d started to use a wheelchair by then, too. Not every day, but because a bad seizure can leave me too weak to walk, sometimes it was the only way to get me into school. And occasionally, I just needed it so that my body could chill out. I found school exhausting both physically and mentally and Mum soon realised that I had more chance of lasting the full day if I went in my wheelchair.

  And that was important because I missed enough school as it was. My attendance fluctuated between 30 and 60 per cent, getting worse as I got older and the seizures and shunt problems became more frequent. I had a home tutor called Ruth who helped me a lot because she taught me visually – she did maths with Lego bricks rather than written numbers, stuff like that – but I was struggling to keep up with the work my teachers were setting each day. And I was falling behind socially, too. I missed so much school that even though it was a friendly, small and supportive community and there were all sorts of measures in place to help me (I even had my very own quiet room to sleep in when I needed to), I began to feel more and more isolated.

  Mum did everything she could to help, including throwing the most ridiculous parties for me. She’d save up for ages, invite the whole class and create these amazing themes around whatever I was into at the time. I was obsessed with the Power Rangers when I first started school so, for my fifth birthday, Mum got my uncles to dress up as the black and red Rangers; it was really exciting – you didn’t see the Power Rangers walking around Portsmouth very often. I remember we had hot dogs, and Meridian News, the local ITV news channel, came. At the time, we were helping to raise money to keep an ASBAH charity advisor in our area, and everyone had donated the money they would have spent on a present for me to ASBAH instead.

  I had a Star Wars party for my tenth birthday, complete with Darth Vader and a bunch of storm-troopers. I know now that Mum had somehow managed to hire the official George Lucas-approved UK Garrison impersonators, but we all thought the real characters had come. There were candyfloss and popcorn machines, and a chocolate fountain which one of the kids kept sticking her face into. There must have been 40 or 50 of us, including my classmates’ brother
s and sisters, and as the grand finale, we all walked through a tunnel of Star Wars characters before being presented with a lightsaber each by Darth Vader.

  I know it sounds over the top, but when your mum signs at least one consent form each year that says there’s a high chance that your son will die if he has this operation – and surgeons tell you he’ll almost certainly die if he doesn’t – then I suppose each birthday must feel like cause for a massive celebration. And I think she was trying to make me look cool in front of my classmates, too. I certainly needed her help.

  We hired out a nightclub for my thirteenth birthday. I knew we didn’t have much money and that Mum had to save up really hard for these parties, so I decided to write, with my sisters’ help, to all these companies asking them to donate drinks and food. I just told it as it was. I said I’d had a load of brain surgeries, our family didn’t have much money and I wanted to throw a big party for my birthday. The response was amazing. One company donated 1,500 bottles of soft drinks; others sent crisps and sweets and cake. I was really touched. We even got a DJ to come down from London after he saw a post asking for help with the music on my Facebook page.

  So it was every 13 year old’s dream party, right? Wrong. Yes, we had a food fight and shoved all the bottles of soft drink down the loos (what can I say? There weren’t any bins and it seemed like a good idea at the time), but out of the 100 or so people there, about 90 were Chloe and Jessica’s friends. I’d invited ten and only some of them had turned up. It’s easy at primary school because your mum just invites the whole class and everyone comes, but at secondary school you have do the asking yourself and I only had a few friends to ask. It did upset me; it’s not a great feeling to have so few friends that you need to borrow some from your sisters.