by Lewis Hine
It was hot in that room and, since I didn’t think Friend Finder had a hope in hell of winning, I started to take off my tie as the shortlist was read out. Big mistake. I’d just got the knot undone when the announcer said, ‘… and the award goes to Friend Finder!’ Still, at least my taped-up trouser hems didn’t fall down.
It’s not every day that my condition affects a grand three-course awards dinner in a posh London hotel, of course, but it does have an impact on my own and other people’s lives on a daily basis; and, as Friend Finder has become better known, that impact has become increasingly public.
Two days after the Digital Leaders 100 Awards, I was due to give a TEDxTeen talk at indigo at The O2, a venue next to the O2 arena. It holds over 2,000 people and the talks are also streamed live to 150 countries around the world. I hate public speaking, as you know, but I said yes to this because TEDxTeen is the perfect audience for Friend Finder. The TEDxTeen programme was set up to enable communities and individuals who are interested in social action to have conversations and connect. The theme for that day was ‘Bold Moves’ and I’d been asked to speak about the bold move I’d made when I posted my video and told the world that I was disabled.
There was a rehearsal the day before, but I had a massive seizure in the car on the way there and by the time we arrived, I was in no fit state to do anything but lie down. The organisers had given us a family room at the Intercontinental so we went straight there, which pleased Mum and Chloe because they love staying in hotels. When the guy came to ask if we needed anything, Mum was so excited she said, ‘It depends. What do you have that’s free?’
He thought that was really funny. ‘Quite a lot, actually,’ he laughed, to which Mum replied, ‘Well, we’ll have one of everything that’s free then, please.’
I was really embarrassed, but he came back ten minutes later with this tray piled up with stuff – toothbrushes, razors, slippers – which I must admit was pretty cool.
I wasn’t feeling much better when I woke up the next morning, and I could barely speak when we got to the indigo. It was obvious that I wouldn’t be able to give my talk. Mum went to speak to the organisers and they agreed that, rather than not do anything at all, they would play the birthday video. When my turn came (there were other speakers, including a Syrian refugee who became a UNICEF ambassador of education and a young woman who set up an anti-bullying app), someone stood up and said, ‘Today’s theme is Bold Moves and today Lewis has made the bold move of admitting that he is too ill to do his talk. Sometimes the biggest challenge is admitting that you can’t do something.’
I was really touched by that, and when the video ended I got a standing ovation. I hadn’t had to say anything. Result! It’s not often that being ill actually works in my favour.
Not long after that I had a seizure at an awards ceremony. I’d been made an #iwill ambassador (#iwill is a UK-wide campaign that aims to make social action part of life for as many 10 to 20 year olds as possible by the year 2020, and is co-ordinated by the charity Step Up To Serve), and on Wednesday 22nd November 2017, I was one of 50 ambassadors lucky enough to be invited to this big celebration at the Tower of London.
I was having a rough week. A couple of days earlier I’d had a seizure so violent that I’d fallen into the telly and smashed it (I don’t often break things, luckily), and then I had two more on the way to the Tower, so it was hardly a surprise when I collapsed again.
We’d just been shown into this room where we were supposed to relax before the ceremony started. Mum has two criteria for calling an ambulance when I have a seizure: blue lips, or a seizure that goes on for longer than five minutes. This one ticked both those boxes, so she dialled 999. I remember the paramedics were really excited.
‘We’ve never been to the Tower of London before,’ one of them said, as he strapped me into the wheelchair (the room was two floors up so they had to carry me down to the ambulance), ‘it makes a change.’
That made me laugh – I may have caused a scene and missed out on getting my certificate, but at least I’d given the paramedics a day to remember.
They sent me the certificate in the post. Because I have both the memory of a goldfish and a proud mother, it’s stuck up on my bedroom wall, next to the Points of Light one that arrived out of the blue on 17th July 2017. That day, I’d been sitting on my bed playing on my Xbox when Chloe came in holding a white A4 envelope. It had ‘10 Downing Street’ printed across the top.
‘What is it, Lew?’ she asked, once I’d got it open.
I scanned the contents, bewildered. ‘Seems to be a letter from the prime minister,’ I said. ‘Can you tell me what it says?’
‘Sure!’ said Chloe excitedly, and began to read it out: ‘“Dear Lewis, I want to congratulate you on becoming the UK’s 724th Point of Light. The Points of Light Award recognises outstanding volunteers who are making a real difference in their communities. You are changing lives through Friend Finder and the Friend Finder Prom, helping to provide a supportive network for young people with illness or disability. Your work has inspired millions and has done much to raise awareness of the loneliness faced by young people battling long-term illness. Up and down the UK volunteers like you are helping to build a country that works for everyone. The Points of Light Award is a small thank you on behalf of the whole country in recognition of your exceptional service. Best wishes, Theresa May.”’
I just sat there, while Chloe shouted for Mum and Jess. ‘Hey, come in here. Guess what, the prime minister’s written to Lewis!’
They rushed in, half expecting it to be a wind up. I showed them the letter.
‘Wow, that’s brilliant Lew,’ they laughed and gave me a massive hug.
‘I really don’t know what to say,’ I stammered when they finally released me. ‘I’m shocked – the prime minister has heard of Friend Finder! That’s really made my day.’
I haven’t put my GCSE certificate up on the wall. I’ve always known that I’m never going to be a rocket scientist and my results prove it. I got a U for religious education, an E for food tech and a grade 1 in both English and maths. Most people would have been devastated, but I hadn’t been expected to get a grade at all in English, so you could say there was something to celebrate.
I was disappointed with my food tech result, though. It was my favourite subject at school and I was pretty good at the actual cooking bit. Obviously, I can’t follow recipes and I need other people to chop things for me because I’m not really safe around knives, but with a bit of help, I can create tasty dishes. I had to make lasagne, noodles, pizza and chocolate mousse for the GCSE and my family scoffed the lot as soon as I got it home. I pretended to mind, but it felt like a real achievement.
My grades weren’t anywhere near good enough to get me into sixth form college but luckily for me, the head thought that all the things I was doing outside school were as impressive as lots of exam passes, so he let me in. The first couple of weeks were tough – there are 4,000 students there and I had no idea what to expect – but once I’d settled in, I really began to enjoy myself. It was so different from secondary school – no one seemed bothered by the fact that I use a wheelchair sometimes, and if anyone mentioned my scar it was just to ask what it was from; once I’d explained, that was it. Some people had seen the birthday video and had heard about the prom, but it wasn’t a big deal. I was just another ordinary student and that was exactly what I wanted.
Things did change a bit after the TV documentary My Big Prom went out on 14th November 2017 as part of CBBC’s My Life series. There was a lot of media attention afterwards and the college posted a link to the documentary on their website, so it was hard to stay anonymous. But although I was dreading going into college afterwards – I’d been seen on national TV in my pyjamas, after all – everyone was really supportive. Lots of people came up to talk to me about it, and most of them offered to help with the next two proms.
I didn’t get to watch the documentary live because I was doing a radio int
erview about it for BBC Radio Solent at the time, but we did a big screening of it later that evening and invited all the volunteers who had helped to come, too. It was a weird experience to see everything we’d done over those months documented on the telly. Watching it made us all realise what a massive team effort it had been, and how much we’d accomplished together. A lot of people cried that night.
The day the documentary screened was especially crazy. That morning I’d been in London being interviewed on This Morning with Phil and Holly. They had asked Izzy, one of the guests from the prom (you can read her story in ‘My Big Prom’), to come too, and we’d all stayed the night before in London. We had to get up at the crack of dawn and when we got down to the hotel lobby, we found that ITV had sent Izzy and I separate cars to take us to the studio. We felt like proper celebrities! We were taken to make-up as soon we got there. I hate having to wear make-up; they have to put powder on your face to stop you looking all shiny, but it feels gross. Then we were shown into the Green Room. That’s a waiting room, basically, and we walked in to find a bunch of fashion models, ten puppies and Kelly Brook in there already. I managed to grab a selfie with Kelly.
I don’t mind doing live telly. I know it sounds crazy for someone who says he hates public speaking, especially when you think how many people are watching (around a million people tune in to This Morning every day apparently); but it’s the idea of an audience in front of me that freaks me out, and the great thing about telly is that you can’t see anyone except the people interviewing you. Izzy was really relaxed, but Mum was so nervous she didn’t say anything unless she was asked a direct question.
The response to the CBBC documentary was amazing. I’d done interviews about it on BBC Breakfast, Radio Five Live and Newsround the day before too, as well as an interview for the digital and online radio station Fun Kids that I had to do in a cupboard at the This Morning studio. (I was so busy that the interviewer from Fun Kids agreed to talk to me while I was waiting to go and talk to Phil and Holly. The cupboard next door to the Green Room was the only quiet place we could find!) By the following week the Friend Finder GoFundMe page had received £3,000 in donations.
I know I’ve said it before, but people’s generosity is incredible. That money will be used to help fund the next proms, which are being held in Portsmouth and Birmingham. Two is a lot to take on, but so many people contacted me after the first one, asking if there was something similar happening near them, and saying that I had to expand. And we are a bit more organised this time – there are two planning committees and several team leaders who’ll be in charge of different areas, like dresses or fundraising.
Friend Finder has become an official registered charity since the prom, too. It took ages because, quite rightly, the Charities Commission want to know everything from your safeguarding policies to how you do your accounts. But on 2nd November 2017, Mum had an email from them. It read, ‘We are satisfied that Friend Finder Official is a charity and it has been entered onto the Register of Charities with the Registered Charity Number 1175539.’ I was so proud that I printed it out and stuck it on my bedroom wall with the other certificates.
The decision to apply for charity status was a tough one, because once you become an official charity, you no longer have complete control. Before, I could decide to hold a Friend Finder swimming day or a fundraiser at Portsmouth’s Spinnaker Tower, say, and I could just go ahead and do it (the fundraiser raised £5,000, thanks to brilliant auction lots like ‘Spend a day as CEO of Portsmouth Football Club’ and Mum’s auctioneering skills). Now I have to run every idea by the board of trustees first. That does slow things down, but the massive upside is that it means I’ve created a legacy. Now that we have serious professional people to help us – like Donna Jones, leader of Portsmouth City Council, the brilliant businessman Paul Barham, IT specialist Jock McEwan and event management superstar Zoe May – I know that Friend Finder will always continue, regardless of how well or ill I am. They all say that as the founder, I’m still top dog, but it doesn’t worry me either way. What matters is that we now have expert help. And seeing as I told an audience of about a million on This Morning that I plan to take Friend Finder global and I have no idea how to do 99 per cent of the stuff that this entails, I could really use some help.
My Top Tips for Life
My life is constantly throwing up new and unexpected challenges. I’m terrified half the time, but I refuse to give in to the fear since it’s part of making Friend Finder a success. This is how I prepare before I have to do something I’m scared about:
I talk it through with someone, usually my mum. I tell her how I’m feeling and she helps me get it all into perspective.
I draw a picture that represents how I feel. (I draw because I have trouble writing, but you could write it down or just make a mark on a piece of paper. As long as you know what it means, that’s all that matters.) Then, next to it, I draw a picture of something that makes me happy, like my Xbox or my dogs, Poppy and George. I find it helps to connect something I like with something I’m worried about. Sounds a bit crazy, I know, but it works for me.
I don’t want to let my fears control what I do or don’t do, so I’ve decided to take each request as it comes and give it my best shot. After all, the things we worry about are usually less scary in real life than they are in our heads, so the best way to get over them is to face them head-on.
NEXT STOP, THE WORLD
‘WAKE UP, LEW!’ Mum said – too loudly – as she turned on the light. I groaned. It was still pitch dark outside. ‘Come on. We’ve got a plane to catch.’
Then I remembered. We were going to Hawaii. Mum didn’t need to tell me again: I was already up. The trip wasn’t a holiday; I was going – along with Mum and Jess (Chloe couldn’t get time off college) – because in September 2017, I’d been made a Bakken Invitation Award Honoree. The award was set up by the medical device manufacturer Medtronic to recognise people who’ve overcome health challenges with the help of medical technology, and who are using their ‘extra life’ to help others. The programme is named after Medtronic co-founder Earl Bakken, who says that medical technology – a pacemaker, insulin pump and heart stents – have given him ten or more years of extra life to give back to society and make a difference. Mum had read about it somewhere and decided to nominate me. It’s a worldwide programme and the panel only select 12 honourees each year, so it was a bit of a long shot; but since the prize was a $20,000 donation to a charity of your choice (that’s around £14,500), plus an all-expenses-paid trip to Hawaii to participate in community service projects and workshops, she thought it was worth a go. And the gamble paid off. We were chosen.
Which is why Jess and I found ourselves squashed up against her suitcase in a taxi at 6am on a freezing morning in January 2018. I was excited about the trip, but travelling is always a hassle for me. There’s all the luggage, for a start. As well as normal stuff like clothes, we have to take my wheelchair, a rucksack full of meds (we have to carry those with us because we can’t risk them getting lost somewhere en route) and another cabin bag with spare clothes for me in case I have a seizure. Try navigating your way through a busy airport with that lot.
Sitting still for long stretches of time makes my back hurt, so we’d decided to break the journey in LA. That’s over 11 hours on a plane, and by the time we arrived I was exhausted. And a bit confused; LA is eight hours behind the UK time-wise, so it was still only 3.30 in the afternoon. I felt like I’d been in a time warp.
Some things stay the same however far you travel. Like people shoving in front of you to get on the hotel shuttle bus, as they did at LA International Airport. We were near the start of the queue when the bus drove up, but we still ended up missing it because no one had the patience to wait for the driver to lower the wheelchair ramp. We’d have missed the next one, too, if an off-duty pilot hadn’t turned up and held the other passengers back. Then, when we finally made it to the hotel, we saw that the entrance was three steps up fr
om the pavement. There was a lift up to the entrance (basically a metal box, minus a lid), but none of the hotel staff seemed to know how to open it. Then, when someone did eventually get me inside, it got stuck and I was left sitting there like a lemon while they tried to fix it.
That kind of stuff happens when you travel in a wheelchair, and I try not to let it get to me. Travelling is hard but life is for living – that’s my motto. I may have been trapped in a lift, but at least the lift was in LA!
The next day Mum hired a car and drove the three of us to Hollywood, which was pretty cool. It’s not every day I get to pose for a photo on the Walk of Fame, or shake hands with a life-size Oscar statue. I felt like the luckiest person alive.
But what happened two days later pushed my – and Mum’s – patience to the limit.
We were back at the airport for the onward flight to Hawaii. Mum had booked assistance and a lovely woman took us over to security, where we joined the queue for the X-ray machines. Jess went first but when it came to me, we were told that no one was available to search me in my wheelchair; so the assistance person just parked me to one side and told me and Mum to wait.
We did. For ages. Mum was stressing about Jess, who was on her own on the other side of security. Eventually one of the airport staff came up to me and said, ‘Can you get out and walk?’
‘I suppose so,’ I shrugged.
Mum wasn’t happy about it. ‘He had a seizure not long ago. He’s not very strong.’
The guy just looked at us. We didn’t want to risk missing the plane, so Mum helped me up and I followed her through the scanner. My legs were so weak that once we were through, I had to hold on to Mum and Jess while we waited for my wheelchair. Loads of people were watching and I got a bit upset, especially when Mum had to help me put my shoes back on. It was embarrassing being stared at. My mum’s pretty cool, though, and she just told me to take a deep breath and move on.