by Lewis Hine
A Day in the Life: 23rd January 2018
7am: Early start today. I hate waking up early but I have to go to Great Ormond Street and we’re catching the train. I take my meds.
8:30am: The train’s packed full of business people and there are people standing right down the carriage. Lucky we booked a seat.
10:30am: We’re here. We took a taxi from the station because the tube was really crowded.
11am: I’m in the scanning department as I have to have an MRI today. They’re putting a cannula into my arm so they can put some dye into my body to help with the pictures they’re taking. They’ve just asked Mum if she could be pregnant, as the dye is radioactive. That really made her laugh.
An MRI scanner is really scary. It’s a long tunnel that you lie in for ages and it’s so noisy that you have to wear big headphones to protect your ears. They strap your body to keep it still and because they’re scanning my brain, I have to have a cage over my head too. There is a small mirror in the cage so I can see my mum, who’s sitting by my feet wearing matching headphones. Once I’m ready they move me into the tunnel. I used to panic and have to be put to sleep, but I’ve had so many MRIs now that I’m OK with it.
12:30pm: I was in the scanner for over an hour today. I’m exhausted – if you move at all they have to start again so I have to concentrate really hard.
4:30pm: We’re finished at the hospital so we start our journey home. I’m tired and the train is packed again and this time we don’t have a seat. We move to the disabled reserved seats but they’re full too. We are standing in the aisle and there’s a pregnant woman standing with us as well. My disability is hidden so people wouldn’t necessarily know I need a seat, but even if they did, I doubt anyone on this train would move. They’re not getting up for a pregnant woman, after all. Mum and I decide to sit on the floor.
7pm: Home! Jess and Chloe tell me what they’ve been doing all day. They definitely had more fun than me, although Jess did get stuck on the school bus for an hour after it broke down on the way home. She couldn’t call Mum to pick her up as she was in hospital with me, so Jess just had to sit and wait for the replacement bus. I tell her at least she had a seat. She doesn’t think it’s very funny.
9pm: Mum’s given me my meds and thinks I’m in bed but I’m on the Xbox, lol!
11pm: I’m watching a film in bed. I think today’s stress has taken it out of me because I’m not feeling too well and I sort of know tonight’s going to be rough. I feel funny, like I often do before seizures, but there’s nothing I can do to stop them. I’m a bit scared to be honest.
EVERYONE NEEDS BACKUP
THREE WEEKS after all the excitement and glamour of the prom, I was back in Great Ormond Street Hospital. It was a planned visit, one of the two or three monitoring sessions I have each year when they take me off my meds and study my seizures.
I think the planned hospital visits are worse than emergency admissions – at least when I’m rushed in, I know my life’s being saved and I leave feeling better. Invasive monitoring or, in this case, video telemetry, are just exploratory and I come home exhausted. So walking up to the hospital entrance on that June afternoon felt a bit like approaching the gates of hell. I may have been wearing my Versace trainers, but it was a far cry from the red carpet at the Guildhall.
Video telemetry is when your brainwaves are videoed over several days using a camera. After I’m shown to my room – which is just big enough for a single hospital bed, a chair and a tray – I get into bed and a doctor comes in and glues electrodes all over my head. (Once they’re on, my whole head gets covered in a big white bandage which ties up under my chin, so it looks as if I’m wearing a bonnet. Cool or what?) The wires from the electrodes are then plugged into the wall and that’s me stuck. I can’t move from my bed until the tests are over. They go on for a week. Oh, and a nurse has to put a cannula in my arm, too – that’s a tube stuck into a vein – in case I have a seizure I don’t come out of on my own and need an intravenous injection of rescue meds. There’s always a risk of that happening (Mum has a bottle of the muscle relaxant Midazolam at home for emergencies), but the chances are much higher when I’m off my epilepsy drugs.
And then the tests begin. Anyone who’s had video telemetry will tell you they’re torture. Like the invasive monitoring, this whole process is about trying to find the bit of my brain that’s responsible for my epilepsy, so the doctors need to see what goes on inside my head while I’m having a seizure. The trouble is, seizures don’t happen to order, so the doctors do all these things to bring them on. Like put huge lights right up close to my face and shine massive strobes in my eyes, or get me to breathe in and out really fast like I’m hyperventilating. My seizures are also triggered by having to think about more than one thing at a time, so they ask me maths questions and make me play board games too. I had a massive seizure playing Monopoly once, so that now seems to be their favourite; just seeing the box makes me want to snap the board in half.
So, it’s fair to say that Great Ormond Street was about the last place on earth I wanted to be at that moment. Though ironically, I’d pretty much asked to be there. Earlier in the year, I’d gone in for an assessment and my consultant had basically told me that the tests were a waste of time. She didn’t put it quite like that, of course, but she did say, ‘There’s nothing more we can do, Lewis. You can either accept that your seizures aren’t going to get any better and stop coming for these tests, or you can carry on. It’s up to you, but if you keep coming you must understand that we can’t promise that anything will improve.’
I didn’t stop to think. I just said, ‘I want to keep trying.’
I meant it – giving up isn’t on the cards for me these days – but as I felt each electrode being stuck to my head, I wondered whether I really had made the right decision.
And to make matters worse, it was the night of my school prom. I know I’d just organised one of my own, but it was still hard to see the messages and photographs coming in on social media as my classmates got ready. I decided to ask my Facebook friends to cheer me up.
‘So, I’m back in hospital,’ I wrote. ‘I’m here all week having tests and I already feel tired. I’m connected to a monitor which means I can’t leave my hospital bed, or at most a few feet around it. I’m not looking forward to this and I know that I’m just one of thousands of children today feeling like this. This is exactly the reason why I launched Friend Finder, so kids like me don’t have to feel isolated while we’re in hospital. I know as the week goes on that I’ll get worse, so I need to stay positive. I have an idea. Can you go to a window, or anywhere if you’re outside, and take a photo of whatever view you can see and share it? I may be stuck in a room with four walls, but maybe you can be my eyes. Share this post and help me see the world from my hospital bed in London. Tag other poorly children and adults as well so they can see the views around the world too.’
The response was amazing. My post was eventually viewed 38,000 times. I was sent pictures of a back garden in Surrey, a grizzly bear in Alaska, a lemon tree in Peru, a field mouse in Australia and a group of postmen and postwomen outside their depot in New Milton, Hampshire, each holding a piece of green paper with a letter on it. The message read, ‘Best wishes Lewis Hine.’ It must have taken ages to organise. I couldn’t believe they’d gone to all that effort for me.
Seeing all these pictures made such a difference to how I felt. They gave me the push I needed to keep positive.
And so did Mum. Again. It’s not an exaggeration to say that I couldn’t do anything without her constant support. I might not be a little kid anymore, but Mum never leaves me when I’m in hospital. She sleeps on a pull-out camp bed in a curtained-off area at the side of my room when I have to stay in overnight, and she sits on the end of the bed when I’m in the MRI scanner. These days I’m so used to being in the tunnel that more often than not I fall asleep, but it’s good to know she’s there.
I come from a big family – as well as the f
our of us, there’s Nan and Grandad, four uncles, one aunt and ten cousins. We all live within five miles of each other and Mum and I know that we could call any of them at any time. Mum had to ask my Uncle Ritchie to help us get from Great Ormond Street to Waterloo station once. She couldn’t manage me, the wheelchair and the suitcase all on her own, so Uncle Ritchie came up to London to help her. There’s a family Facebook page that Mum uses a lot when she’s worrying about me in the middle of the night.
My nan and grandad are incredibly supportive. Discovering that I had a brain tumour hit them really hard. Nan practically lived in the hospital chapel – she lit so many candles the priest came in and told her, ‘He might survive the operation, but he won’t survive the massive fire you’ll start with all those candles.’ Grandad said he’d sell the house if he had to. He would have done, too.
Then there are my sisters. I described them as irritating when I was asked about them in the video Radio 1 made for the Teen Award, and they are. They tease me all the time, calling me the ‘favourite child’, and Jess has been known to raid my chocolate supply; but they are also a massive part of my story.
They never let me feel sorry for myself, for a start. Chloe will come into my room if I’m feeling a bit down, and literally drag me out of bed. ‘Come on, Lew,’ she says. ‘Come on!’ She won’t take no for answer, so there’s no point in arguing with her. It’s a tough approach, but it works. Chloe’s been a bit of a role model for me, to be honest. The way she dealt with being bullied at school is one of the reasons I’m doing what I’m doing now.
And they have been forced to become young carers because of me. If Mum has to go out, one of them has to stay in. Chloe’s 18 so she does the most. She took me to the dentist recently. It was the first time she’d taken me out by herself and I know she found it hard. She had to do everything for me, from opening the car window (it’s an old car so has a handle rather than a button) to helping me walk into the surgery. And when I got there, I couldn’t remember whether I’d used the special mouthwash, so she had to phone Mum. She was exhausted by the time we got back.
Jess is only 15, but even she has to help me sometimes. I wanted to buy Mum a surprise Christmas present last year and Chloe was at work. It wasn’t just because I might get lost or have a seizure, I also needed Jess to look after the money and help me at the till. It was nice that she did it – usually Mum has to buy her own present from me and pretend to be surprised – but, let’s face it, it’s a bit weird having to ask your younger sister for help with something as simple as shopping. It does bother me that she’s more capable than I am.
Having a disabled brother has a huge impact on their lives. They’ve had to put up with endless cancelled outings and holidays because I’ve been ill, and suffer more embarrassing incidents than anyone should have to go through. Like the time I managed to wee all over the car (I was only five), or when I had a major seizure on the London Underground. We were all standing, and when the seizure started, I threw my head back so violently that I head-butted Mum. Then I collapsed on the floor and everyone was staring, wondering what was wrong with me. When the train came into the station, people just stepped over me. Mum, Chloe and Jess had to make a wall around me. I wet myself then, too, apparently.
And of course, I take up most of Mum’s time. She wouldn’t admit it, but I think that’s really affected Jess and made her do things to get some attention. She had a massive house party when I was in Great Ormond Street a couple of years ago. When Mum and I got home the next day, there were doors missing, the loft hatch had been torn off and the hall floor was completely ruined. Somebody had covered it with washing-up liquid, got the hose from the garden and turned it into a slide. It was like a scene out of that film Project X.
When Mum opened the front door, she just stood there with her mouth open.
‘It wasn’t me,’ Chloe said, running down the stairs.
Then Jess appeared from the living room. ‘Well, you wouldn’t want me to throw a lame party, would you?’ she laughed.
That did it. Mum stared at her. She was so furious she could barely speak. ‘Too soon,’ she whispered. ‘Just get out of my sight.’
I wasn’t all that bothered about the doors and the floor, but I was really worried about my room. Luckily for me no one had touched it – it was the only room that hadn’t been trashed. I think they were scared of all the medical equipment in there – it was the first time in my life I felt glad to have a bedroom that looks like a hospital.
Jess is an absolute legend around here now, but Mum won’t leave her in the house with just Chloe any more. When Mum’s away with me, Jess has to go and stay at Nan and Grandad’s.
I’m pleased to say that they do all get some time off. Chloe’s at college studying music technology, Jess goes to school and Mum receives ten hours a week respite care, courtesy of social services. She gets to catch up on sleep and I get to be looked after by Matt. He’s 25 and a rapper in his spare time. Mum was really keen to find me a young male carer because I spend so much time with her and my sisters. She doesn’t think that’s good for me.
Matt’s a laugh, more like a friend than a paid carer. One time he took me to a fair and he and his friend Joe started chucking all this face paint about. I ended up with a great big blue stripe across my face and Matt was covered in glitter. It was really funny. Another time he took me out for a burger in a pub and when we got home, he said to Mum in this serious voice, ‘I’m afraid we had to leave early because Lewis got into a fight.’
Mum totally fell for it. ‘What!’
We just burst out laughing.
Doing stuff like that makes me feel normal.
So you can see that I depend on a lot of people. I need them to help me physically and I need their emotional support, too. Knowing that Mum, Chloe, Jess, Nan, Grandad, Matt and the rest of the family are on my side and are willing me on is the main reason I’m able to achieve my goals. They were all there at the prom, for example. I could hear them cheering while I stood like a lemon on the stage trying to remember what I wanted to say. I’m lucky to have them.
I like to think that it’s not totally one-sided though. Now that I’ve started to be invited to cool things like backstage meetings with famous rappers, Mum, Chloe, Jess and I have made it a rule that we do everything together. We’re a team.
My Top Tips for Life
I talk a lot about how important family is, but family doesn’t just mean your blood relations. A family is the people who are there for you when you need them, who help you because they care about you and not because they want something in return. Not everyone has a mum or dad and there are lots of children with no brothers or sisters, but there are two kinds of family: the one we’re born into, and the one made up of people we find as we go along. We call them friends, but if they stick by you, they’re family. A good friend will be in your life forever.
Never judge a book by its cover. My mum says that to us constantly. It means take the time to get to know someone before deciding you won’t get on, because first impressions aren’t always right. You don’t have to be friends with everyone – we’re all different, right? – but sometimes people can surprise you. And when you do find a friend, make sure you’re there for them.
RECOGNITION
‘WE WON!’ I posted on Facebook on 22nd June 2017. It was late and I was in bed, but Friend Finder had just been given its first ever prize – the Digital Leaders 100 Mobile Innovation of the Year Award – and I couldn’t wait to share the news. It was a big deal – we’d been up against nine others, including the global mobile advertising and discovery platform InMobi and NHS 24’s Step It Up Scotland.
When I walked on stage to collect the award, the announcer said that Friend Finder had won because of the way we had taken existing technology, in the form of Pokens, and used it to help change the lives of people in the local community. Hearing that made me really proud – not that the other 499 people in the room would have realised that! Instead of making an emot
ional speech naming all the people who had made it possible, all I did was mutter, ‘Thanks.’ It was a black tie dinner and I wasn’t even wearing a tie when I accepted the award.
I admit that it was hardly my finest moment, but I wasn’t feeling well. We’d had a stressful day. I’d woken up with a bad head and aching muscles and by the time Mum, my wheelchair and I made it to the St. Pancras Renaissance London Hotel (which looks like something out of Harry Potter, by the way), I needed a sleep. But I’d barely closed my eyes when Mum discovered that she’d forgotten to pack my smart trousers. It was 4.30pm. The champagne reception started at 6.30.
‘Quick, Lew,’ she said. ‘There are shops in St Pancras station. We’ll have to go buy some new ones.’
There was only one pair of black trousers to be found and they were miles too long. I was ready to give up, but Mum persuaded the shop assistant to tape the hems up for us. We didn’t have time to wait while she did the actual taping, so as soon as she’d pinned them to the right length, Mum and I went back to the hotel to get changed. Or half-changed – I had to keep my shorts and trainers on, which looked a bit weird with a dinner jacket and tie. Then Mum ran back to the shop, pushing me in my wheelchair, and I put the trousers on, crossing my fingers that the tape would hold, Mum stuffed my shorts and trainers into her handbag and we arrived at the reception just in time. Mum looked like she’d been dragged through a hedge and my head was banging.
When we looked at the programme, the Mobile Innovation Award was one of the last.
‘You’re not going to make it to the end of the night, are you, Lewis?’ observed Mum.
I shook my head.
She went off to speak to the organisers and they agreed to change the running order so that the Mobile Innovation Award could go first. The woman Mum spoke to told us later that it had caused a bit of a panic – apparently they’d wanted Friend Finder to be the big finale. Trust me to muck things up!