Sophie (30) is a filmmaker based in Munich, who doesn’t really like living in a city. A hardcore girl from Austria, she’d much rather be on top of a mountain (with or without snow under her feet) or on her surfboard early in the morning ‒ and she also really wants to own a Parson Terrier! Diagnosed with epilepsy when she was twelve, Sophie has lived and surfed around the world. We asked her to tell us more about her journeys abroad and how she got into surfing growing up so far from the sea.
Hi! Tell us a bit about yourself.
Griaß di` (that’s ‘hi’ in Austrian dialect). People would describe me as this adventurous, always on the run, creative and stubborn girl from Austria ‒ with a weird loud laugh! I don’t like to stop: I want to create, I way-to-often feel that I’m not good enough. My life might seem out of control but it isn’t: that’s what I want ‒ to not stand still. To have the freedom to go anywhere, at any time I choose. I guess I’m like that as I don’t want to be stopped by Mr. Epi Lebsy.
What sports and activities do you do?
I love to ski, hike and surf. Apart from that, I just started to do yoga. I really couldn’t understand the hype at first but now I do enjoy it. When I’m not out playing in nature then this is my city activity. All of it definitely helps me to calm down, to find my inner peace with Mr. Epi Lebsy
"I soon found myself in Bali, watching the wild ocean for the first time. But I still had too much respect for the sea to surf properly."
Coming from a landlocked country, how did you get into surfing?
When I was sixteen I ran into my neighbour’s daughter. She was carrying a surfboard and I was like “ha, so you´re going to go surfing?” and she said “yes. You wanna come with?” It turns out there was a river wave only fifteen minutes from my house. That was the start of everything: I soon found myself in Bali, watching the wild ocean for the first time. But I still had too much respect for the sea and my epilepsy to surf properly. It was only when I was nineteen that I decided to fly to Fuerteventura and learn how to surf at a surf camp. After that, my life changed and ever since I can’t see myself going on holiday without being able to surf. Flat ocean? What is that??
Do you take part in competitions?
No! I’m really not that good. I’m already happy when my fitness allows me to stay out there for more than an hour.
Austria and Munich are pretty far from the sea! Where do you go and how do you get there?
I usually go to Spain, Portugal and France. Easiest way is to fly, obviously, and luckily I have a few friends who I can always visit. Especially in Portugal. The best place to surf? Well I can’t really say. Most of the best known surf spots are crowded and full of ‘I’m-so-cool-that’s-my-wave’ idiots. The best waves I’ve had so far were those with my friends around me and us having a good time, even in tiny, shitty waves.
"Travelling is one big adventure after another... so I can't really say there is this one big adventure"
Is surfing an expensive hobby?
Once you have a surfboard no. But I guess it also depends where you go. If you’re in Costa Rica all you need is a surfboard and a bikini…. When you go surfing in Portugal you need an expensive wetsuit and all that. So in the end it can be expensive. But going to the gym is very expensive too and half as much fun.
Did you ever stop surfing or skiing because of epilepsy?
I actually started surfing one year after my fifth seizure. And I´ve been skiing since I was three years old. But I’m lucky: I don’t have to suffer from constant seizures. I have to say that I tried to ignore the consequences and risks of epilepsy. That’s no good either. So now I try to get enough sleep before I go surfing or skiing. When I don’t feel good, I don’t go.
What is your biggest adventure to date?
To be honest, it’s hard to say. I´m very lucky that I´ve been able to travel a lot. Travelling is one big adventure after another. I used to live in Costa Rica, Spain and in the wonderful ski resort Lech am Arlberg for five years, where I experienced big adventures too. So I can’t really say that there has been this one big adventure.
So, what was your latest chapter in the adventure?
I had a break from work last year in September. I took a plane to Portugal and visited my friends who own a surf camp there. I love it there. It’s not an hectic, stereotypical surf camp. It’s more a place of friends coming together to go surfing or to do yoga and so on. I stayed there with my boyfriend for nearly two months. We travelled to the South of Portugal for a few days as well. After that we went to Austria to go skiing and stayed there for two weeks at a wonderful old school hut in the middle of nowhere. I can’t really complain.
"Just one month after I got my driving license I had another seizure while I was driving. I was lucky that I didn't kill anyone."
Can you tell us a bit about your epilepsy?
It all started after I just turned twelve. Out of nowhere, in the morning a few minutes after I woke up. It literally just hit me. Four more seizures followed (always in the morning) in just three weeks. Officially, they were tonic-clonic seizures without any notice before a seizure. So they kept me in the hospital under medication (Valproate) and I was fine for years after that. They even took me off the medication by the age of seventeen. I got my driving license, I was free, my epilepsy was gone. Well that’s what I thought. Just one month after I got my driving license I had another seizure while I was driving. I was lucky as fuck that I didn’t kill anyone. Nothing happened to me or the car.
Within three years I had two more (and maybe another more during my sleep). I started taking Keppra and then I was fine for another six years. In that time I was travelling, drinking, sometimes not sleeping basically having a ‘normal’ life for a woman in her twenties. And then it came back. Again. This time I could feel it. I don’t know what’s better: to know something is going to be really wrong or just waking up to something very wrong. After that my doctor put me on Lamotrigine. My life changed, I wasn’t tired anymore and I was suddenly full of positivity.
I was only seizure free for another two years that time, then again two years. June and December 2017 were my last ones (and in my case too many compared to the big gaps I used to have). Now I’m searching for answers: what medication, do we higher the dose, try a completely new medication, change my whole lifestyle? I haven’t found the right doctor and therefore solution yet. The doctors I’ve had so far? Well I can’t take them anymore. I’m not just another case out of the med-books. They can’t find anything when they test me. We’re all different and you can’t just treat everyone the same.
"Try to keep your life going. Go for a swim, get your driving license, go out and party, travel. But do it with more care."
Why did you start your Instagram account?
After my seizure in June last year I felt very upset and I tried to find people who I could share my fears with or get some motivation for myself. I could not really find positive and motivating accounts. As I’m really open about my epilepsy I thought “well if there’s not many motivating accounts out there, I’ll just do it myself.” Craziest thing about it, there’s nothing out there in German at all…
What would you say to someone who has recently been diagnosed?
It depends what kind of epilepsy that someone has. When it´s similar to mine, (meaning ‘we don’t know why’) try to keep your life going. Go for a swim, get your driving license, go out and party, travel. But do it with more care. My biggest advice: listen to yourself. It’s hard. Very hard.
Do you have anything else you’d like the readers to know?
Well I actually want to know something. I really, really think that hormones control my seizures. Thanks to my Instagram account I found out that a lot of my fellow female epilepsy warriors say the same. I am now searching for a doctor who thinks the same. I really wonder how important those hormones are and how they’ve secretly become the reason why. We need more awareness, more research and alternative treatments. The brain is so complex and people don’t really have answers. I guess we have only just started to ask the right questions.
You can follow Sophie, and answer her question, on Instagram @brain_thunder_storm