Steve Ley has Tourettes but he doesn’t let it hold him back. This is his remarkable story.
Steven Ley has Tourettes. He suffers from tics that give him involuntary movements, actions and of course makes him say the most inappropriate things at the worst possible time.But he doesn’t let it hold him back read on for an insight into how a thoroughly good bloke deals with life’s hand.
I met Steve at Estagnots in France this autumn. Steve had driven down from Croyde to watch the Quiksilver Pro and was sat in a cafe when I walked in.
He called me a ‘cunt’ as I walked past, which I thought was fair enough. As I sat and had breakfast Steve had quite a bad attack of the tics; shouting, coughing, jumping and I could see the effort he was putting in trying to suppress them. As I walked out, he called me a ‘prick’. The weird thing was, and it is tough to admit, but for a split second, I wondered why he was picking on me and felt offended. I had a quick word with myself and carried on, but throughout the next two days I heard reports of Steve surfing, and I realised a lot of people were taking offence, and there was a general lack of understanding of his condition.
The experience triggered a lot of questions; Why were people taking offence? What kind of legend would come to the busiest area of Europe knowing he would get stick, get ripped into and threatened? How can we all make Steve’s life better?
I met Steve the next night as he walked down the check the surf. His story is remarkable. One of the most upbeat and brave humans I think I’ve met.
The following is a piece Steve wrote for us. Usually we edit out swearing and offensive words as people don’t like to see it in print, but in this case, we have left it in. If you feel offended by any of it, imagine having a condition where you involuntary use this language at the most inopportune moments all day, every day. The power of language is extreme, but at the end of the day they are just words, and if the aggressive intention behind them is not there then they are powerless.
I hope this educates people because the adverse reactions of the general public are their problems, not Steve’s. And if you see Steve on your surf trips shake his hand, buy him a coffee or a beer, accept him for who he is and ignore his tics. All he’s looking for is to be treated like any else. He’s earned that and more.
My main passion is surfing, and it’s helped so much to free my mind and keep me sane through my upbringing dealing with Tourettes.
I’ve had Tourettes since I was seven years old. It started with just small tics like noises and little twitches. When I started secondary school the anxiety of being around all the other kids, and being in such a social place, made my Tourettes so much worse. I was so scared I didn’t want to go to school. Kids were not so kind, and I got bullied a lot, the teachers didn’t know what to make of it and found me hard to deal with. Being so young and not knowing what to make of it myself made school very tough and I found my education was suffering massively. My mum has been the most fantastic person ever. She is a doctor and a children’s nurse, so she understood and helped me through all of it. I couldn’t have done it without her. When I was 13, I moved to Braunton school and started a new life. I found the kids way more understanding here and they accepted me for who I was. Being so close to the sea and surfing a lot more changed my life. My passion for surfing helped me with my tics and made me channel all my negative energy from school. I got sponsored for surfing when I was 14 and used to compete a lot. I found competing very stressful and didn’t like the pressure. I found it made me worse, so I gave up competing for a while and started playing music. Music is my job as well as carpentry, but music is the main one that ultimately gets rid of my Tourettes. When I play music, I go into a trance, and I don’t even tic. It’s like medicine. I started playing the piano from a young age and found I could sit there for hours and play with no tics at all. When I was 18 I got a P.A and started playing gigs in my local pubs I found at first being on stage with a microphone with Tourettes and in front of loads of people terrifying. I would shout “Cuuuuunt!” on the mic so loud people asleep down the road could hear me. It all sounds a bit silly, but I found it funny, and so did everyone else. That gave me a tremendous amount of confidence and made me realise that so many people respected me and admired my courage to get up there and put myself in front of a whole pub twitching falling over and shouting on the mic.
People think Tourettes is just swearing and it is a massively misunderstood condition! People don’t see all the other things that come with it: Anxiety, Depression, ADHD, OCD, all the pain and trauma you put your body through
People think Tourettes is just swearing and it is a massively misunderstood condition! People don’t see all the other things that come with it: Anxiety, Depression, ADHD, OCD, all the pain and trauma you put your body through and my god the twitching keeps me fit! I have to eat about 3000 calories more than the average human, and I’m still skinny as fuck! It wears me out, and I have to make sure I get my rest otherwise I’m fucked! I’ve never been shy, and I’ve always put myself out there. I love socialising as most of my friends and people that know me know. I like a party and being the centre of attention! It helps me and gives me confidence. I love making people laugh and being a stupid twat. It kind of covers up the Tourettes and makes people focus on me rather than my tics. It’s taken years to get to where I am with it and I’m still a long way from where I want to be but doing all the things I love is helping massively. I love to travel the world and have done since I was 16-years old. When I was 16, my mum let me go to Morocco on my own to meet three of my very good mates that were staying at Anchor Point. I think she was more scared than me. I wasn’t even thinking about it. I just wanted to go surf some sick waves! I must be honest I was shitting myself as I was landing at Agadir airport. After all, I was a skinny tall blond kid with curtains from England shouting “CUNT” “BOMB” “NIGGA!” I’m surprised they even let me on the plane, to be honest. I do try and suppress my tics at airports just because I don’t want the hassle but it’s almost impossible with all the stress of it. But I still do it because I know at the other side I’m going to get sick waves and meet amazing people. I spent three months in a cave on Mystery Point Taghazout with no water; electricity just gas candles and a board bag to sleep on. For me, it was the biggest eye-opener ever, and I learnt more about life in that three months than I ever did at school! The local Moroccan people were so lovely to me and accepted me for who I was. I became a well-known person, and it made me realise that being out of my comfort zone was not so bad and travelling is what I wanted to do. I did nothing but surf my brains out for three months and get high on life and never wanted to come home.
It amazed me how in a third world country with no education where I didn’t speak the language people just accepted my Tourettes and me for who I was. I came back a different person. The next year I went back for three months again in the same cave, and I’ve been back to Morocco seven times. It’s like another home for me. When I was 21, I went to Australia. After arriving off a 24-hour flight straight into New Year’s Eve with no sleep and jet lag, I was on a bus into Noosa Heads, and these little shits started ripping the crap out of me. Before I even turned around, a woman stood up and went fucking mental at them. I was so shocked I didn’t even know what to say. I said, “Thank you.” But I was like, “Holy shit. I love Australia already!” I stayed in Australia for six months and found the people just amazing. I never really got any shit off anyone and found them so easy going and more relaxed. I liked it so much I went back three times, and now I’ve decided to emigrate there. I came back last year after being there for nearly a year and started my visa process. I’m a carpenter by trade, and that’s what I do to earn my money as well as the gigs. I found, in North Devon, there’s not much of a music scene, and I don’t fancy playing pubs for the rest of my life. And I certainly don’t want to live in London away from the sea. So I decided to move to Byron Bay. It has a lot to offer, and the music scene is fantastic, not to mention the surf: the hollow beach breaks are just endless and so many options with all the different winds. Byron feels like home, and I’ve been there a lot and made some excellent friends. One really good friend I’ve made is Matt Wilkinson. We met through his best mate Alain who I play music with in Byron. I play golf with Wilko, and he’s been such a legend and introduced me to so many amazing people who all have my back in the sea and accept me for who I am. It means so much to me that world-class surfers have my back and makes my Tourettes feel like nothing when I’m with them. I wish I could surf like them! I’ve just come back from France where I spent a lot of time with Wilko, and we certainly had a laugh with Tourettes and just sat and watched the Frenchies reactions over coffee!
The waves were pumping in France, and it was great to get away. I drove my van down from Plymouth to Roscoff and down to Hossegor. People always ask me “How the hell have you got a driver’s licence?” But when I drive, I’m relaxed and don’t have many arm twitches. I still shout “Cunt” at every car that passes and stick my middle finger up in traffic though! I’ve been chased before. It’s fucking hilarious. Some people are very fucking angry, and I’m not the person you want to see when you’re mad! I found the French very hard this time; they didn’t seem to get me at all, to be honest. I got started on every time I went out, so I didn’t bother to go out in the end. It’s so hard being around drunk people with Tourettes. They just don’t get it. I struggle to understand why you would walk up to someone with a bad twitch and making noises and start giving them shit. It makes me so angry and telling a drunk person what Tourettes is like telling a three-year-old what algebra is. I’ve been struggling badly this year with anxiety from going out and having to explain to fully grown adults what Tourettes is. They’re so fucking rude to me sometimes, so I don’t go out anymore. The most shit I get is in my local town where I’ve grown up, Croyde. It’s a beautiful place, and every surfer knows low tide Croyde. But the people that come here now are so up their ass and rich they treat us like nothing. “Yeah, see you at low tide you prick then we’ll see who’s got the chat in the pub!” Haha. I got beaten up in my local pub by five guys two months ago because they didn’t understand and were drunk. I just went to get my pay from a gig, and the only five guys left somehow managed to judge me and start a fight. I held my own for a bit, but five on one is not fair. It sickens me to death that humans can behave in such a manner and they were just lucky my friends weren’t there. I deal with this day in day out, but I’ll never let it hold me back. Four years ago I got some bad news. All the constant twitching on my neck over time has led to spinal compression. This has caused a lesion in my Brachial Plexus, so my nerves in my arm don’t work. I’ve have lost a stone in weight of the right side of my body and pretty much lost most of the strength in my right arm. This has been going on for four years now, and it’s affected my life massively. I can’t surf like I used to and can’t paddle so I only last about an hour now and can’t surf bigger than four foot. It’s made me very depressed, and I may have to have a massive operation, which is life changing. All this is because of Tourettes.
People don’t understand when they give me shit that the effect of what they’re saying adds to my daily struggles. But I never let anything stand in my way. I get beaten up by five guys then go to the pub the next night and get pissed. I can’t use my arm, but I still go out surfing as much as I can. I work full time as a carpenter, lifting heavy stuff, but somehow it works. Tourettes is something I’ve been living with my whole life. Yes, it gets me down, but everyone has shit that gets them down. We’re all lucky to be here, and we all have problems, but it’s all about coming together and supporting one another to make this life easier. Don’t judge people, encourage them, be nice. It’s not hard to be nice. When you speak or even open your mouth, think about what you’re saying to people and how your words affect things. We’re all different, and I could be a lot worse off. I’ve been blessed with many talents and without them I know I wouldn’t be here today. I wouldn’t be able to cope with what I have. I’m 32 years old and live on Baggy Point in Croyde Bay. Living by the sea has given me a sense of calmness and as it would anyone, but listening to the ocean all the time is magical for the mind, and I feel very grateful for the opportunity to do so. I live on my own and Tourettes is sometimes a challenge as I cook for myself and try not to stab myself in the face with a knife every time I cook! How I still have eyes I don’t know! When I brush my teeth, I spend most of my time washing the toothpaste spit off the mirro. So if I’m late for work that’s why! It takes me fuckloads more time to do anything, and if I’m on time, some of my mates give me a medal. I also have a tic where I run back into things. This is not fun when you’ve crossed a road and then end up back on the other side weaving in and out of cars! Again how am I still alive? Hmmmmmmm. Fat people hate me because I shout “Fat cunt” all the time and snort like a pig. Police always try to arrest me and try and be all big and shit, and I’m like “Na, mate I’ve got Tourettes you piggy cunt” Then pull out my Tourettes card and they’ve got no leg to stand on. They don’t take it to well, but at the end of the day, ‘CUNTSTABLE’ discrimination is against the law mate. Now fuck off and leave me alone.
I’ve done a few documentaries on Tourettes on the BBC and have found it’s helped massively to raise awareness. I did one called “Tourettes Let Me Entertain You” on BBC Three with Reggie Yates all about people with Tourettes that play music and come together and form a band. It’s incredible how music helps Tourettes, and I found a lot more people understand now from watching these types f documentaries. The most recent one I was in was called “Misfits Like Us” and was on BBC Three and BBC One. It’s all about helping a girl who couldn’t leave the house because her anxiety is so, so we all support her. It’s just won an award, and you can catch it on BBC iPlayer. It was released this summer and is a great watch. I found it so inspiring hanging out with other people with Tourettes and gave me great confidence in going out and about and not worrying about what people think. I’ve never taken any medication and don’t like putting that stuff in my body. I believe strongly in diet, natural produce and being happy. This all helps my Tourettes and what you put in your body certainly makes you feel and be who you are, but I still love a Dominos stuffed crust. I find when I talk to people my tics calm down. I guess that’s what I’m known for “Steve the chatterbox”! Different channels of the brain I think. It’s not all doom and gloom with Tourettes. I do find it’s given me a lot of life experience and given me the ability to work people out within seconds. There a lot of pluses with having it as well as sometimes I get to say what everyone’s thinking haha.
When I’m on a plane, sometimes they move me to first class, and I do get to sit on my own which is lovely. Well, it does save the person next to me stress! So I say that to the airline company before I get on the plane. I had a guy in Agadir walk up to me and put his hand on my heart and just walked off. I’d never get these experiences if I didn’t put myself out there and go around the world. Even going out with the pros like Conner Coffin, Ace Buchan, Bede Durbidge and Wilko who have now become good friends. They all look out for me. But people still come up and give me shit, but I think I’m blessed to be hanging out with such genuine people that care and accept me for who I am. So I’m currently waiting for my visa to move to Australia to start my new life in Byron Bay and have just written my first album which I’ll be releasing next year. So exciting times ahead. It’s been a long, bumpy road of depression, anxiety and making my life better by surrounding myself with the people that make me happy. I want to find a wife in Oz to help me build my own house out of wood and have a dog called ‘Roger’ and a few kids. To start my happiness, to try and be the best person I can for someone that gets me. That’s all I want. Being in the heat helps my back and surfing is a lot easier for me in boardshorts as it is for everyone! I’ve had to embrace my condition which has been so hard but I’m proud of the way I’ve dealt with it and will continue to swear at everyone and I’m sure life will throw more at me, but I’m ready for whatever. I feel blessed and so honoured to have the people that I have in my life and the support I’ve had locally, and around the world, it’s just amazing. The journey is the reward, and I will live every day like it’s my last. The last thing I want to say is never be offended by me I can’t help what I do and its never directed at you. Now please can someone find me a wife! Peace.