When surfer Jared Muscat was accepted into the University of California San Diego back in 2007, he was excited about getting to live so close to the ocean and thought of all the surf sessions he would score in his off time between studying. But the inevitable presence of stress that comes with beginning college also crept in Muscat's brain and caused his first grand mal seizure. Shortly after the episode, he was diagnosed with Focal Cortical Dysplasia, more commonly known as epilepsy.
While meeting with his first neurologist to learn more about this new unexpected, scary and extremely inconvenient facet of his life, Muscat's doctor informed him that stress triggers the seizures. The doctor also advised that, in addition to managing his stress, Muscat should also stay healthy and engage in regular physical activity. Muscat responded, "Yeah! I'm physically active I surf twice a day at the very least." The doctor gave him a discouraging look and warned Muscat that surfing would be very dangerous for someone with epilepsy.
"I said, ‘Sorry Doc, but no. I can't not surf. If you want me to be stress-free then I can't be salt-free,’" says Muscat now.
Since then Muscat has managed to balance his condition and his love of surfing. Muscat was reared as a surfer in the punchy and rip current torn waves of Ocean Beach, San Francisco which instilled a long-lasting taste for big waves which he didn’t stop charging once he received the diagnosis. He even charges Mavericks–a break many surfers would consider stress-inducing–yet Muscat has never had a seizure while surfing.
When not hunting heavy waves, experimenting with all manner of surf craft, or managing social media for Patagonia, Muscat stays busy raising awareness about his neurological disorder with End Epilepsy, a chapter of the Epilepsy Foundation-An organization that Muscat is forever grateful towards because they helped him get connected with neurologists that would eventually pinpoint the bundle of trigger-happy neurons in his brain causing the seizures. Now, several months after his open-brain surgery, Muscat is seizure free so far and wants to share his message of hope and bring awareness to all, especially epileptics who surf.
SURFER called up Muscat to learn more about surfing while prone to seizures and his journey with epilepsy.
What does it feel like having a seizure?
There are hundreds of types of seizures but the main one is the grand mal seizure. When you have to try really hard to keep your eyes open and your mouth wide enough so you don't bite your tongue while shaking uncontrollably. You're battling with yourself while your body is battling against your brain.
Immediately after a seizure you're gasping for breath, your body's basically just done a marathon worth of calorie burning. There's an immediate loss of understanding that settles in. For example, an EMT will ask you, "What's your name? Where do you live? What's your date of birth?" You'll hear the answers to these simple questions in the back of your head, but they won't come out of your mouth correctly, this weird phase will last for about 10-15 minutes.
After that you'll start to feel normal mentally but then a severe headache starts to pulse, like the worst migraine you can imagine. Once that settles in your body’s done in terms of wanting to do anything productive.
One thing I remember most from the seizures I've been through is the look on the faces of the people near me. I specifically remember the look on my mom's face after my first seizure, I've never seen a sadder look on her face. Same thing with my wife, after the first few seizures she witnessed, her face looked like she just saw hell.
That must really feel like a bummer, knowing that something you have no control over has caused this look of terror on a loved one's face.
This is a point I try to emphasize about seizures: they're a bummer for everyone involved, not just the person going through it. Although the human going through it can be strong, it really takes team work. The scared faces don't help the person, even though that might be someone witnessing a seizure's first reaction, it's really about just being there and trying to understand it's a part of their life. Luckily I haven't had a seizure in four and a half months and I can't remember how long it's been since I've been seizure free for that long.
Is that because of the procedure you recently underwent?
Yeah, right before the surgery the doctor said that there's a 70 percent chance that I would be seizure free. They did a lot of research to stay away from any cognitive harm. Not to go super scientific but what I had is known as Focal Cortical Dysplasia. It's an abnormality that you're born with and it's basically a batch of neurons that like to fire at all times. There are times when they get too happy on firing and that's when a seizure starts. These neurons have a limited response to meds, you can go a few months with no serious episodes and then you'll get a solid seizure that will trigger more serious ones at a shorter interval.
Because of this, the doctors were able to run tests and figure out exactly where this batch of neurons was and pull it out. They were really close to my hippocampus, which is responsible for memory and my mental dictionary. They were able to run a test during my surgery and were able to stay clear from my hippocampus while being pretty confident they pulled everything out. This still trips me out that my skull was off of my head and my brain was exposed to air [LAUGHS.]
You’ve never had a seizure in the ocean but you seem to put yourself in some pretty stressful lineups like Mavericks-how does that work?
I grew up surfing Ocean Beach, San Francisco for the most part. The first time I paddled out there as a truly devoted grom I just got beat the f--k up on the paddle out. Then I remember sitting outside and being scared for the first wave but when I caught it I felt like I understood how to surf bigger waves. From that point on I just tried to take every opportunity to charge.
Late drops have always appealed to me, maybe it's some type of high-opportunity stress. At the end of the day the ocean is where I'm able to drop anything that's going on in my personal life, whether it's work or personal stress. Even during the surgery process that I was going through, which took a lot of energy and caused a drastic change to my lifestyle for six or so months, the one place I could wash it all off was the ocean.
So one of the doctors who helped you prepare for the surgery was a surfer?
Yeah, Dr. Antonio Escueta, I didn't really know he surfed at first. He told me during my post-surgery three-month follow-up appointment. He asked me, "So have you gotten your first wave yet? If so I want to hear all about it and see pictures." So I showed him some pictures and he was like, "Oh that looks a little small. I remember the first time I surfed Sunset…" I knew he had grown up in Hawaii but I didn't know he surfed. He told me he ended up quitting surfing because he was so passionate about the brain and neurology. He's one of those incredible humans and I think neurology for him is something like surfing is for us-he doesn't stop thinking about it and he's always working to advance it.
That's awesome, you hear about surfers with a medical condition always being at odds with their doctors. It must have helped to know your doctor understood a surfer's mindset going through something as serious as having part of your brain removed.
Every neurologist I've had has given me a weird look when I've mentioned that I surf. But he was the first one that when I told I surf was like, "Hell yeah!" I wouldn't have him as my doctor if it weren't for the Epilepsy Foundation.
How’d you get involved with the Epilepsy Foundation?
I started long distance prone paddle boarding in the summers because there are not a lot of waves in Santa Barbara, where I currently live, that time of year. I reached out to the Epilepsy Foundation to see if they wanted to collaborate on something with my paddling. I even told them I understand someone with epilepsy spending all that time in the water could be a little controversial. But their first response was, "We need you to show people that you can live a life with epilepsy."
The Epilepsy Foundation is incredible. They’ve done a lot of lobbying on behalf of epileptics, most recently the approval of CBD oil to treat the condition by the FDA. They have a bunch of local chapters and I got hooked up with End Epilepsy in LA. They not only connected me with my incredible doctor but provided a network of support. For example, if I had a seizure I could reach out to someone on the team to help me go through the horrible headache and hangover that follows one. They're always asking how you feel about your current treatment and if you'd like more medical opinions. When I said I felt like I wanted a fresh opinion, they were supportive in helping me find new doctors.
What else do you want people to know about epilepsy?
1 out of every 26 people has epilepsy, so I'm not the only surfer in the lineup that is seizure prone by any means. I know other humans who surf that have epilepsy and I know at times they will get very scared about having a seizure in the water, they'll battle with that. I want them to not have to deal with that and be able to enjoy the ocean the way they want.
The biggest thing that I'd like to bring awareness to for the epileptic community is how to take care of someone having a seizure. That person coming out of a seizure has just physically and emotionally finished a marathon that they got dead last in. The best thing you can do for that person is help make the after effect as minimal as possible. Make them feel comfortable, don't make them feel like they were the center of attention. Provide water. If you can, make sure that the person understands what happened. If the person knows they had a seizure, and has experienced them before, then you don't need to call an ambulance because there's not much the ER can do for the person.
For for information on how you can help a person experiencing a seizure, click here.
For for details on Jared Muscat’s surfing exploits, epilepsy awareness campaign and journey through brain surgery, click here.
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