Learning from Surfing with Epilepsy

In the following story, Cameron Schwartzkopf talks about his relationship with seizures and surfing. This includes some of the larger risks and consequences of with surfing with epilepsy. This is Cameron’s personal experience. It may be upsetting to some, and the end was fortunate, but I think that his story is very important.     

There is no way to defeat your enemies without facing them, and I’m waiting for my biggest fear to appear. 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 and beautiful summer weather 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.

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. But I recently came to the realisation that this approach is fear-based, and we are not meant to live in fear. We are meant to live fully and powerfully.

This is something I learned 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. For my fifteenth birthday, I was able to go to a surf camp in Encinitas, nearly four hundred miles from my home. 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.

Mammoth Lakes by Jeremy Bishop

"It was from riding the snow that my curiosity for surfing began. For my fifteenth birthday, I went to a surf camp nearly four hundred miles from my home."

It quickly became an obsession. Twenty years after that day, that fact still holds true. 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 that moment. It makes me feel truly alive. Expressing and experimenting with creativity on crafts in snow and water is something I always will love. When I started having seizures, I refused to let them steal these joys from me. Naturally, both these environments are inherently dangerous, especially for someone with epilepsy. And although it is unclear, we believe that epilepsy is responsible for my near-drowning.

One day in February of 2014 I was surfing in Oxnard Shores. Life’s journey had taken my wife and I away from the ocean to live and it had been quite a long time since I had been able to surf. Surfing by yourself doesn’t really happen in Southern California and it was because of this that my wife gave me the go ahead to surf as long as I wanted. 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 having a great surf,  I was grateful and happy, and ready to head back to shore. We had just returned from a trip to Turkey and Russia, and I’m sure jet-lag was taking a toll on my body. As most of us may know, sleep deprivation is a no-go for those of us with epilepsy. I lost consciousness. I was unconscious and drowning in the ocean.

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 graphic 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 after so much time without the proper flow of oxygen to my brain the hospital staff put me into an induced coma.

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  – C a m E r o n    S c h w a rT z k o p f –  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.

Photo by Kensuke Saito Surf Photography on Unsplash

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. That incident was four and a half years ago. I have had many seizures since and I don’t know why they will not be controlled. But it will not control me. Adventure, in any form I can find it, continues to be a huge part of my daily life. I have been surfing many, many times since. I will not give it up. After my loved ones it is the activity that gives me the greatest joy and satisfaction.

"Epilepsy will not control me. Adventure in any form continues to be a huge part of my daily life. I have been surfing many, many times since that day"

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

Bring it on.

Photo credits: Mammoth Lakes by Jeremy Bishop, Kensuke Saito Surf Photography (both on Unsplash) and surf photo via Cameron Schwartzkopf

About the writer:

Cameron Schwartzkopf began having seizures when he was 27 but he only recently (after 7 years) found out they are tonic-clonic seizures. He also experiences partial awareness seizures. After a cluster of 3 seizures in one day landed Cameron in the hospital, he was referred to the Swiss Epilepsy Clinic for a week long EEG, but they have so far been unable to find an apparent cause. He has also become very health conscious throughout this journey in an effort to be able to continue to live the life he believes he was meant to live: a life abundant!

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