Looking at the Stars

by Lewis Hine

  ‘Scared,’ I said.

  But when I walked into Prom HQ a couple of days later and told the team that we’d hit our £15,000 target, everyone was so thrilled, cheering and hugging each other, that I couldn’t help but feel better. We had all worked so hard for so long, begging favours from the council and caterers and members of the local community… and now, all of a sudden, we had a proper budget. It was amazing. That was the moment when we all realised that this prom wasn’t just a crazy dream; it really was going to happen. And it was going to be great.

  My Top Tips for Life

  So many people try to fit in and change themselves to be like others, but we should all just be ourselves. Admitting to yourself who you really are is hard. Making my birthday video and telling the world I am disabled was embarrassing, and the reaction was even more embarrassing, but I’m happy being me. My disability makes me who I am, and I’m proud of that. Whether you are big or small, have hair or are completely bald, be proud to be you. I bet if you haven’t got any arms, you can use your legs far better than anyone else and probably leave people in awe of you, so be proud. Yes, our disabilities make our life a challenge – but you can rise to that challenge. My mum doesn’t have a disability in the formal sense, but she definitely goes a bit crazy sometimes worrying about me, money, bills and being a single mum, so she uses her experience to help others and that gives her something to be proud about. My sister Chloe isn’t classed as disabled either, but she dresses funny and that makes her happy, because it’s her way of being herself.

  We are all unique; we all have our own challenges. Don’t hide from them – use them! Remember, our differences are what makes the world so interesting and colourful.

  MY BIG PROM

  WE SENT OUT 150 handmade invitations that week – one for every young person who had applied. The range of disabilities was huge. We had autistic kids, kids hooked up to catheters and breathing apparatus, and kids with terminal illnesses. We had a full medical team booked for the night, but each young person had to come with their own carer. As disabled kids ourselves, we were used to the problems people like us face at public events, and we tried our best to eliminate as many as possible. We had a team of chaperones who would come and sit and talk to the children while their carers went to the loo, for example, and I managed to track down a photo booth with enough space for a wheelchair and two carers. We may have had to compromise on lots of the plans, like the supercars and the film premiere lights, but there was no way we were going to let anyone’s disability prevent them from being fully involved. I was determined that no one was going to feel excluded.

  As the acceptances came flooding in, it really hit me that some of the kids who were coming were very sick indeed. I didn’t want any of the team organising the prom to be upset by what they might see on the night, so I invited Neil from the Stress Management Society to come and teach us how to cope with any stressful incidents.

  He gathered us all together and told us to breathe in and out very slowly. ‘Breathe,’ he kept saying. ‘Breathe.’ Then he gave us each two sweets.

  ‘Just eat the first one normally,’ he told us. ‘But with the second one, I want you to close your eyes and suck it really slowly. Don’t think about anything except what it tastes like.’

  We all did what we were told (except Jess who just went, ‘Whatever. Why would I get upset by a disabled kid when I live with one?’), but I didn’t have a clue how it was going to help us deal with kids having seizures. Still, no one did freak out on the night, so perhaps it worked after all.

  Neil didn’t charge us for his time, which was incredibly generous because he’s a busy man and his advice certainly gave us some fun with Mum as well. She was super-stressed on prom day, and every time any of the Friend Finder lot saw her, we’d say, ‘Breathe, breathe. Suck the sweet!’ It made her laugh.

  The epileptic boy who had the very frequent seizures was there with the folding screen we’d managed to get hold of. His mum was concerned about how other guests would react but, of course, no one took any notice because every single person there had a problem of some sort, or cared for someone with a problem. It was quite funny, seeing this screen popping up and down all night.

  There was a girl who was waiting for a heart transplant who hadn’t danced for six years (she certainly made up for it on the night); a transgender boy whose school had refused to let him wear a suit to prom because they said he was a girl; and an 18 year old in a wheelchair who also had a condition that meant her skin was very sensitive. It had been difficult finding a dress that wouldn’t irritate it, but in the end we got hold of this fabulous red one that was big enough to pin to the back of her wheelchair and drape over her. She had feet a bit like mine too, overlapping and out of shape, but we managed to get hold of some gold shoes that we strapped to the bottom of her wheelchair so that she could just rest her feet on them. She looked beautiful.

  I don’t remember a lot about the night itself. I do remember walking from the Premier Inn to the Guildhall in my suit and my brand-new gold Versace trainers (the entire family had saved up to buy them for me – they were two sizes too big so there’d be room for growth), and I remember standing in the lift afterwards with a bottle of Shloer and a carton of cheesy chips, but a lot of what happened in the middle is a blur. I know I danced a lot and that I spent a long time at the sweet table – there was a giant Ferris wheel of sweets which a woman called Kelly generously donated after reading about the prom on Facebook. And I know I made a speech.

  Everyone says they hate speaking in public, but it’s no exaggeration to say that I’d almost rather have brain surgery than make a speech. It’s not just shyness; my memory is so bad that no matter how much I practise what I’m going to say, I know that as soon as I stand on the stage, I’ll forget everything. And there’s no point in anyone writing my speech down for me because I can’t read very well. Especially when I’m nervous. And the worst thing? Thinking about what an idiot I’m going to look when I forget my speech makes me anxious – and anxiety triggers my seizures. The idea of having a seizure on stage makes me even more anxious. It’s not good.

  I’m asked to speak in public quite a lot these days and most of the time I say no, but sometimes I need to do it as a way of saying thank you. The prom was one of those occasions. People had been so generous, donating money and clothes and food and decorations and, most of all, hours and hours of their time. The prom was only a success because of their support. So the least I could do was stand up and say ‘Thank you’.

  But when I walked on stage in front of all those people, nothing came out of my mouth. I just stood there staring at everyone for about 30 seconds. That’s a lot of silence when there are 300 people expecting you to say something. Eventually my brain re-engaged.

  ‘All I want to say is thank you, everyone, for coming tonight and enjoying yourselves and showing your support,’ I stammered.

  Everyone clapped and cheered and I got off that stage as fast as I could.

  A few things went wrong on the night, of course. We forgot to cut the giant 15kg chocolate cake for a start (I shared it with all the volunteers the next day and, since there was enough for 300 people, I took the rest around to our neighbours), and Jessica managed to convince the DJ that it was OK to play the uncut version of a hardcore rap song. One minute we were all dancing away, and the next Mum was running across the room like Usain Bolt, screaming at the DJ to turn it off. It was hilarious.

  The next morning I woke up and I couldn’t feel my legs at all; it was as if they’d been amputated. It was my own fault; I’d been determined not to use my wheelchair on the night because I wanted to dance and be the cool kid in his gold Versace trainers who had organised a massive prom – not Lewis Hine, the boy with legs so weak he has to use a wheelchair. I know it sounds silly, especially when there were so many kids in wheelchairs there, but I’d been planning this night for a long time and that’s the way I’d always envisaged it. The next day was horrible, really painful,
but I don’t regret the decision.

  I’m still moved by the stories I heard that night. One of the girls who came died soon after, and her mum called us to ask whether her daughter could be buried in the dress she’d worn for the prom. There’s only one answer to a question like that.

  We gave everyone who came a pen and a white card and asked them to write down how they felt about the evening. Reading the cards back is a humbling experience. We kept them all. These are some of my favourites:

  ‘I’m so happy to watch my three sisters have such a lovely night.’

  ‘Thank you so much for finding me some friends.’

  ‘Thank you so much for doing this prom! I honestly thought I would never go to one. Thank you for making the impossible come true. It’s good to feel like a princess.’

  ‘Thank you for tonight. I was so relieved to find someone else who knows what I’m going through.’

  ‘My son spent so many years in and out of hospital. Tonight has meant so much to him.’

  ‘I made more friends tonight than I have done in my entire life.’

  ‘I watched my daughter dance for the first time in six years. It made me cry.’

  I think the best comment of all was from Izzy, a young woman whose brain tumour had eaten away the side of her face. She’d had reconstructive surgery not long before the prom and this was the first time in her life that she’d had the chance to dress up. She wrote, ‘It’s so nice to see that there are other people out there like me and I don’t have to give up hope and that it’s OK to be different.’

  That’s why I put on the prom – to prove that being different is good. It’s why I do everything I do.

  Izzy’s story

  I was four when I was diagnosed with a rare brain tumour. I underwent numerous surgeries, chemotherapy and high-dose radiotherapy. I went back to school when I was six, but it soon became obvious that my brain had been damaged and mainstream school wasn’t for me. I started going to a special needs school when I was eight.

  It is the best place for me, but going to a special needs school can make you really lonely. When I first started there, the school only had 12 pupils, ranging in age from eight to 18. There are 40 of us now, but the age limit has increased to 20 so there are still very few students that I can call my friends.

  I have lots of multi-disciplinary hospital appointments every year and I still have to be seen at the Royal Marsden every four months for an oncology check-up. I’ve had over 80 operations in all.

  My older sister did a prom at 16 and 18 and it has been my ambition to go to one myself for such a long time. Mum found out about Lewis and Friend Finder on BBC News and then got me to like his page. When he posted the message about the prom, Mum sent an email straightaway.

  Going to the prom changed my life completely. It was the first time I’d got to dress up and play princess and it made me realise that I’m not the only one who is lonely and feeling sorry for myself – there are others like me around, too.

  Callum’s story

  I have something called fetal valproate syndrome (FVS). It has things in common with autism. I also have attention deficit hyperactivity disorder (ADHD), which means that I struggle to manage my emotions. I’ve recently been diagnosed with depression, too, which causes me to self-harm when I’m stressed.

  I had really poor social skills when I was younger; I wanted everyone to be my friend and if I felt rejected for whatever reason, I would lash out. I threw things, swore and, in extreme cases, I’d have a total meltdown, banging my head on walls, rolling into the foetal position on the floor or under tables and crying uncontrollably. That could go on for as long as 25 minutes. I have had lots of support over the years and I’m happy to say that I can now control my emotions a lot better. I haven’t had any extreme outbursts since I was at primary school.

  I went to a mainstream school until Year 10, but I struggled to cope in large classroom situations so I moved to a specialist school to give me a better chance to succeed academically.

  I missed loads of school because of my emotional and social difficulties and I really struggled to socialise. Before I came across Friend Finder, I spent most of my time at home. Then, in October 2015, my mum saw a post on Facebook advertising a Halloween party for children and young people who struggle to make friends because they miss a lot of school due to illness or disability, and thought it would be a great thing for me to go to. I had a really good time. It was great to be able to have fun with other kids like me.

  Friend Finder has been brilliant for me. It’s helped me with my social skills, and the parties and outings mean that I now have somewhere I can go and be myself, where I don’t have to worry about what other people think of me. It has also given me a better understanding of the challenges other kids face in life.

  Saffron’s story

  When I was 13, I developed an autoimmune disorder called post-streptococcal disorder, which means that when I get a cold caused by streptococcal bacteria, the antibodies that are produced start to attack my body – in particular my brain, heart and eye muscles. It has also caused reactive arthritis, which means I have difficulty walking. My immune system is also weak, so I usually spend most of the winter months ill and off school. Some of my summer holidays were spent in hospital having and recovering from surgery.

  This illness has also left me with chronic fatigue syndrome which means that I find doing normal things like going to school extremely tiring. From the age of 13, I could only manage to be there for half the day. I also had to reduce the number of GCSEs I took. Never being in school at lunchtime meant that I missed out on chatting to my classmates; I found within a term that the friends I’d made at school had forgotten I existed.

  I wasn’t able to go out because I couldn’t walk very far, which made it hard to see my friends from outside school who were all starting to be more independent. A friend did introduce me to a girl called Katie who lives nearby, but as we both have chronic illnesses we rarely got to meet up!

  Life is lonely when you’re sick, and most people can’t understand the difficulties we have just trying to do ordinary things that they take for granted. I hate making plans too far in advance as I know that the chances of me being well enough to follow through aren’t great. And even if I am, I get tired very quickly. I also have to be really careful in the winter because there’s such a high risk of me catching another infection that will take months to recover from. I spend a lot of my time on my own.

  I first heard about Friend Finder through Katie. Her sister had been in contact with Lewis and she asked if I would be able to go to the prom. It was amazing to be invited. I didn’t think I would be well enough to go to my school’s prom on my own and I didn’t really want to be the only girl with her mum tagging along!

  I found out about Friend Finder once I had been invited to the prom. My condition is a rare one (affecting around one in 100,000 people), so there aren’t any support groups and it is very isolating when there is no one that really gets it. Meeting Lewis and lots of other children who can relate to the same things as me was so lovely and it has made my world a less lonely place. Including all children regardless of their ‘condition’ is something that was missing, and it’s given me a lovely group of friends who ‘get it’. I’m really looking forward to helping Lewis and the rest of the group with the next proms!

  My Top Tips for Life

  We all have our own challenges in life. Every single one of us has our own story of things we’ve been through. The trick is to use those experiences and feelings as fuel to help push you forward. I chose to use my fuel not only to help me keep fighting, but to help others keep fighting, too. Friend Finder and the prom gave everyone the opportunity to make friends and experience a night to remember forever. I used my disability to understand and help others just like me. I changed my story by following my dreams and working hard – and you can too, whether you’re like me, struggling to be seen, or a parent or sibling feeling helpless as you watch your family
member suffer. We may not be able to change our prognosis or the length of our life, but we can certainly change how we live.

  You can volunteer, help others, or challenge policies and old practices that no longer reflect today’s needs. Doing things like that will not only give you a positive focus but when you achieve your goal, you’ll feel like you’ve made a difference. You can’t restart your story, but the next chapter is still to come and it’s up to you what happens next.

  I use this thing called ‘positive affirmation’ to help me achieve my goals. When my sisters and I were small, my mum gave us all a small cardboard box. She told us to paint them and put something that represented our dreams inside. Back then, I put a toy car inside mine, but as I got older, she explained what the box really meant and how I should use it. My dream became my goal. I put in a piece of paper with these words written on it: ‘Helping others makes me feel great.’ I would look at my piece of paper every night and say the words out loud.

  There was also a second piece of paper that said, ‘Standing in my drive next to my Lamborghini and looking at the massive house I’ve just bought makes me feel proud.’ But that’s one of the chapters that hasn’t happened yet!

  I know it sounds crazy but trust me, it works. Reading your goal every night means that you don’t forget it in the business of daily life. Stay focused on your goal, work hard and you’re halfway there. Try it for yourself. Get an affirmation box (or get one for your child or family member) and read your goal every night. Imagine that you’ve just that second achieved it. Think about how it feels. Hold on to that feeling and let it inspire you to carry on. Let me know how you get on!

  I know exactly how I’m going to feel when I get my Lamborghini and big house. I visualise that moment in my head and I look pretty good if I’m honest (lol).