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The Articles: Learning from Surfing with Epilepsy (FULL TRANSCRIPT)

FRAN: You're listening to The Articles, from Seize Your Adventure.

I want to give a quick content warning for this episode. During this story, Cameron goes into detail on the consequences of having a seizure in water whilst he's surfing. So please bear in the mind that some of the content and descriptions might be upsetting.

[Sound of waves fades in, then fades out]

I’m waiting for my biggest fear to appear. I’m getting prepared for the most important fight of my life and I’m ready to fight one hundred percent.

It sounds much more dramatic than it really is: if you looked at me, you would see a man lying on a bed, firmly clasped in the grips of boredom.

As I write this, I am in the Swiss Clinic for Epilepsy, hooked up to an EEG and under a twenty-four hour video surveillance, waiting for a seizure to happen. The huge window next to me and the beautiful summer weather outside continually remind me of the great fun to be had outside. I feel like a kid counting down the seconds until school is out and I can get up onto the mountain. But I must stay inside because this summer, with the help of my wife, I have decided to face epilepsy head on.

Growing up in Mammoth Lakes, a town in the Sierra Nevada mountains of California, I was lucky enough to learn how to ski around the same time that I learned to walk. Snowboarding naturally followed, and my love and fascination with deep snow developed. It was from riding the snow that my curiosity for surfing began. I wondered about the power of the water.

[There is the sound of waves in the background]

For my fifteenth birthday, I went to a surf camp in Encinitas on the California coast, nearly four hundred miles from my home. During that week, I was in the water as much as possible and I feel like I only came out to eat and sleep. It was amazing!

I remember the first time the instructor said I was ready to paddle into a wave unassisted.

I’ll be honest – it took a while to get into one!

But once I did, I realised I was partnering with the power of mother nature. I was drawing lines in the waves, creating new feelings. It was beautiful. I remember people asking me at the end of that week if I would continue to surf. My answer was YES! The truth and conviction about that was so awesome and pure.

By the end of that week in Encinitas, surfing was my new outdoor passion. Twenty years later, that fact still holds true today. What I love most about being surrounded by nature, exposed to her raw power and beauty, is that I become focused. I cannot think of anything else except the moment. It makes me feel truly alive. Expressing and experimenting on crafts in snow and water is something I always will love.

It’s interesting because I have been finding that again in all my pursuits in life. Especially in my marriage. Surfing has taught me a lot. Good and bad lessons.

I started having seizures as an adult, when I was 27. I’m one of the “lucky” ones. My seizures are relatively few and far between. At the beginning my seizures were tonic clonic big daddies. I have still had those over the years, but now they have kind of changed into more mild absences. Neither one of them are welcome.

The first seven years of my struggle with epilepsy were spent hoping it would somehow go away. I lived in the mindset of “if the darkness doesn’t show, then it’s not real”. I only dealt with my seizures if forced to. I refused to let them steal my joys from me, and continued to head out to the slopes and the surf whenever possible. Naturally, both these environments are inherently dangerous anyway, and especially for someone with epilepsy. And although it is unclear, we believe that epilepsy is responsible for my near-drowning.

By February 2014, life’s journey had taken my wife and I away from the ocean - we lived far inland. But we had just returned from a trip to Lebanon, Turkey and Russia, and on our way home we passed through Oxnard on the California coast. It had been quite a long time since I had been able to surf, and I didn’t have anyone to surf with that day. But surfing by yourself doesn’t really happen in Southern California - we knew there would be others catching waves, even if I didn’t know them, and it was because of this that my wife gave me the go ahead to surf as long as I wanted.

[Sound of waves in the background]

The waves were perfect, powerful, head-high nuggets of fun. Surfers in California tend to keep quiet and to themselves, so there was a mellow crowd, no hassles. Everyone seemed to be out just to have a good time.

After a few hours of great surf, I was grateful and happy, and ready to head back to shore. But I’m sure jetlag was taking a toll on my body. And as most of us know, sleep deprivation is a no-go for those of us with epilepsy.

I lost consciousness.

I was unconscious and drowning in the ocean.

[Waves fade out]

But there were other surfers out, and some everyday heroes pulled my lifeless body onto the beach. Five amazing people gave it their all to save the life of a complete stranger. On this platform I will spare you the details – they hold many unexplainable miracles – but those who saved my life worked on me on the beach until the paramedic unit came and took me to the hospital. I was still alive, but there was a long time without the proper flow of oxygen to my brain.

I did not have any identification with me in my wetsuit, so I was admitted into the hospital as a John Doe and put in an induced coma. But the doctors had to take a risk and wake me up to see if they could figure out who I really really was. Given the state I was in, I couldn’t speak and they asked me to write my name. I still have the paper and can barely read my own words – Cameron Schwartzkopf – it looks like a two year old wrote it.

The nurses were able to contact my mom, but she was hundreds of miles away in Mammoth. At nearly the exact same time, my wife found out that a thirty-year-old male had drowned at the beach she had last seen me on several hours earlier. She soon found out where I was.

The medical professionals told my family that I needed to be kept in the coma for at least a week, with a possible two to three week hospitalised recovery time. My poor wife was expecting to watch her husband suffer for all that time. But the hospital called her on the second day saying she should get to the hospital – they wanted her to be there when I woke up, six days before schedule. Later that day, I was moved from the intensive care unit to a normal room. On the afternoon of the third day I was able to walk out of the hospital unassisted. I don’t say this to mean “look how strong I am”. I just want to humbly say that miracles are real. Very real.

The fact that I am here writing this now led me to believe that we are meant to live fully and on purpose, and that epilepsy will not steal that from us. I am fully aware that writing this may rub salt in wounds. I know not every story has ended happily. And I would love to say that I got the full-on fairytale ending. How great would that be? But since that incident, I have had many seizures and I don’t know why they will not be controlled.

And I have been surfing many, many times since, too. I will not give it up and I will not be afraid of it. After my loved ones it is the activity that gives me the greatest joy and satisfaction.

Whilst I have not been afraid to surf with epilepsy, I recently came to the realisation that ignoring my epilepsy was based in fear. Fear that having epilepsy would change my life. But we are not meant to live in fear. We are meant to live fully and powerfully.

That’s why I have a Matrix-looking headdress on right now, waiting for my enemy to show itself. The more we know about it, the greater the chance I have of beating it. I am a warrior against epilepsy and all the negative effects it has on my family, friends, and beautiful world.

Bring it on.

[Guitar music ident]

FRAN: Hello adventurers, I am Fran Turauskis and you are listening to Seize Your Adventure and I’m here today with Frankie York because you have just listened to your very first ‘the articles’ episode. So Frankie how are you today? Introduce us to where you are at the moment

FRANKIE: Hi Fran I'm very well thank you, I am in my bedroom in Spain, it's my day off and I'm very excited to be sitting down to talk about ‘the articles’.

FRAN: Yeah absolutely, so we've just listened to the very first article episode and this is a story that was on the Seize Your Adventure website two years ago, I think I put up there in 2019, I think it went on, it might have been earlier than that but it went on to the Seize Your Adventure website before we were even a podcast, and I thought today we would do a little bit of a chat about that article because Frankie I know especially it was quite an important article for you when you saw that on the website wasn't it?

FRANKIE: I loved this article, I think this article is beautifully written but I think it resonates a lot with me because he manages to vocalise a very similar experience to myself in a way that I never could. There's things that I have sort of gone through and my friends and family have gone through with that and no one's ever been able to put it so eloquently as Cameron obviously has. I remember back when I was first learning to surf and my seizures were really bad I would always go to this article for some sort of weird moral support and I think it's really nice obviously that you can see that he continued surfing in the end, because that is a big deal not just from his personal perspective but from his friends and family as well to have that sort of trust and the capacity to be like “yeah this very easily could have killed you, but it's what you love and we're gonna support you if that's what you want to do”. It shows a lot about how strong his connection with the sport is but it also shows a lot about I don’t know, his sort of mentality and his lifestyle and how his family are really committed and he's really committed to not letting his epsilepsy?! epsilepsy?! Oh dear! Epilepsy take over his life and yeah I think that's really cool.

FRAN: I’m very tempted to leave that in there. Epsilepsy! I’ll leave in some of my mess ups as well. Yeah it's really interesting to hear you say the the way in which is written as well because when Cameron came to me with his story, he came to me with that opening was… was always there that he wanted to write it when he was in hospital, and it went out when he had left the hospital actually but he initially gave me the article and wrote it when he was in hospital when he was waiting to have some of these investigations done and so that was such a really interesting way to frame it that we were talking about something that was very active whilst he was being very inactive, and that was something which I think he quite liked to to do whilst he was waiting in hospital it made him feel a little bit more connected to the outside again and that kind of stuff.

FRANKIE: I can see that

FRAN: The article is probably one of the ones on the website and on the podcast that goes into quite a lot of detail about when things go wrong. We don't talk about it quite so much in the podcast and on the website because we all have things in place to make sure that it doesn't go wrong most of the time.


FRAN: How did you find that when you first read the story was that something that felt a bit difficult to read or was it useful to read?

FRANKIE: I think because I have a very similar experience it didn't shock me but I can see why it would be very shocking or concerning or could evoke a lot of very strong emotions if you read that as an outsider or someone that's not really experienced that environment, or even experienced a seizure. So again, I'm not sure that me being like “oh yeah I read it like it was you know the newspaper” is very helpful, but I think... Sorry going back to the fact you were like yeah but he wrote it when he was in a really inactive time of his life and it's about a really gripping very active tale, I think again that contrast is really, really cool but also potentially-- that experience being in the hospital with all the wires and stuff like that for me personally was terrifying and I can imagine for a lot of epileptics or people with seizures or whatever people undergoing those diagnostics it's a horrific feeling you're sitting there thinking what are they going to find? what is wrong with me? and I can imagine like that was the time where his family and his friends they were like oh we can take a chill pill now he's not out doing this outrageous stuff we're gonna... we might even get some answers, he's in a room being monitored the whole time and I think it's kind of the way that that flips because I know personally when I'm in the water I can imagine like everyone that is aware of my seizures and my history they could potentially and understandably be quite concerned about that and I can imagine his friends and family feel the same. Whereas for me it's like this is my ‘peace zone’ this is where I feel happy, so I don’t know I just feel like it's this weird switch between the two states not only for him but for his, I can imagine, for his surrounding people as well. But as far as it goes I can see it being quite shocking and I think it is very important that we say oh by the way this does have quite a graphic detailing of when it didn't quite go right, but I also think that it's very important that we have these conversations because we sit here and we advocate for people doing whatever they're comfortable with and even going outside their comfort zone and really reaching their capacity, but like it has to be said we do deal with a condition that can be very unexpected, do you not... I mean you can prepare everything you can have contingency plans like Cameron did...Wait am I wrong there?

FRAN: So I think you're absolutely right with Cameron's story he was saying that he basically made a mistake because he went surfing when he was tired, he'd come back from a long travel and that kind of thing so I think like you say it's a good reminder that mistakes can happen and that's true when you're surfing at any any point essentially and yeah like you say I think it is a good reminder for us to keep an eye on ourselves.

FRANKIE: I’m definitely guilty of that sometimes I’ll be out there and be like “Oh I should not be here right now, I should probably turn around and go back in”. I think, but I was gonna say... Yes, I think it's really important that we have these conversations about what happens when things go wrong and obviously Cameron was very fortunate to have people there that sort of knew how to cope with that situation. I would have potentially liked, I don't know if he would have obviously said like “oh I continue, I’ve continued surfing, this, that and the other, and this is what I do to mitigate x y and z” I don't know like I remember... I don't know if I'm getting a bit confused but I feel like he said that when he went out that day he didn't have any ID in his wetsuit but if you carried on maybe he could have said like “I always have a dog tag or I always do this…” or it would have just been maybe nice if he did you know... but other than that like I think it's really lovely, and I think like I say the fact that he did continue surfing after what happened shows real grit in his character and demonstrates how cool the sport really is that you just you can't give it up.

FRAN: Yeah I have to say, as we all know I'm not a massive water baby, not as good in the water sports at all, but I... when I speak to Cameron when I speak to you and I speak to Jared there is something in surfing and being in the sea that definitely sounds like it can be fun at times so you can see why it's such a draw. Yeah, thank you so much for your thoughts on that one Frankie I very much wanted to know your opinion on it because obviously it's one that means a lot to you. If anybody wants to hear more from Cameron we have actually done a Q&A, I spoke to him a couple of months back now in fact just after he recorded the story for us and that is going to be available over on the Patreon page so if you sign up as a patron at $10 so that's about eight pounds you can listen to that Q&A which will be out next week.

FRANKIE: I feel like I should have asked what you thought about it

FRAN: ...I mean you can ask me now

FRANKIE: Go on Fran, what did you think about it? because I’m guessing you've had a lot of behind-the-scenes interaction with Cameron, and when this story first came about when it came to publishing on the website, what were your first impressions when you read it two years ago?

FRAN: Yeah, it was a really interesting one, I think that Cameron got in touch with me via Jared. So they both kind of had a similar background in terms of surfing. And Cameron very much wanted to tell his story at that time, because he wasn't surfing at that time. And I think that it was, it was a difficult one to edit up properly, because Cameron wrote it and he did a very good kind of like stream of consciousness with it and just told the whole story and there was a little bit more backstory, and all of this kind of thing. Then there were obviously aspects in it that, like we discussed, could potentially be quite difficult to read in places. So it was finding, how much of it to tell and how much of it not to tell and there were, like you said, a couple of places where we just wanted to highlight that Cameron was aware of the mistakes that he made in a few places. So we did, we did go over things a couple of times, just to make sure that that was clear. And there is obviously the warning at the start of this episode. And the warning was on the website as well. Because it's very, it's a lot of responsibility to tell these kind of stories, and obviously, I wanted it to be both true to Cameron's experience, but as you say, not advocating for anything that could be copied in the wrong way.

FRANKIE: That's fair, that yeah… and I think sort of the responsibility of that does kind of fall... I feel like, I can imagine I would feel that falling on me, if I was you in that situation. And I remember when I brought out my own episode, how one of my friends didn't want to comment because they didn't want to encourage people in our situation with our kinds of conditions to go and get in the water in case it was dangerous. Yeah, I can see it being a fine line between encouraging it and making sure that people take don't take the risk lightly.

FRAN: Yeah definitely, I think that we did it quite well. But I would love to hear feedback from people. So if anybody does have any feedback on the episode, obviously, feel free to get in touch with us. Thank you very much for listening today. And until next time, safe adventures from me.

FRANKIE: And me! I feel like this is the most chaotic one of our recordings has ever been.

FRAN: We've had some quite chaotic ones. It's a brand new it's what can I say it's a brand new. It's a brand new type of episode. It's all gonna hopefully come together.


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