By Julie Russell
From the first time he caught a wave as a child in Northern California, Jared Muscat developed an indelible love of surfing. “All I wanted to do was get out there and feel the ocean,” says Muscat. “The root of my true happiness and ability to remain calm was always surfing.”
It was a passion that was put to the test when, at 17, Muscat had his first seizure. A week later, he was diagnosed with epilepsy and faced his doctor’s blunt assertion that he had to give up the sport he loved. “The doctor told me that I could have a seizure and drown,” says Muscat. “And I told her: The ocean is my home.”
But taking his doctor’s cautionary words to heart, Muscat assembled a care team that understood his active lifestyle and came up with a plan that would allow him to keep surfing while also staying safe and healthy. Now 30, he still uses his love of the ocean as a jumping off point for his work as an epilepsy advocate. He serves as a brand ambassador for the Epilepsy Foundation’s End Epilepsy initiative and annually takes to the waves for a surfing or paddling event to raise awareness, as well as funds, for the disease. “My role as an ambassador is to share my story and inspire others,” Muscat says.
He’s also often a resource for other young individuals dealing with a new diagnosis or living with the condition. “A lot of the people who reach out to me are surfers or outdoor enthusiasts who simply need someone to talk to,” Muscat says. “Those conversations typically begin with me asking them about their favorite outdoor activity and what they’re passionate about. Then we dive into what medications they’re taking, doctors they are seeing, tests they are getting, and how their parents and friends are dealing with the diagnosis. They feel connected to me even though we’ve never met.”
In the summer of 2016, Muscat had an idea for his first advocacy event: a long-distance prone paddle. Imagine kneeling or lying face down on a paddleboard and using your arms to propel the board through the water. Now imagine doing that for 17 miles. Muscat envisioned a trek from his home near Santa Barbara down the shore to his office in Ventura, where he works as a social media content producer for Patagonia.
Muscat contacted the Epilepsy Foundation of Greater Los Angeles with his idea and was connected to Nathan Jones, brand manager for the Epilepsy Foundation. “When Jared first said 17 miles, I was stunned,” says Jones. “But then I said, ‘OK, I’m all in.’” A friendship was born, and Jones became committed to helping Muscat bring his vision to life—and ensuring that people would see it.
And so the journey began, with Muscat live-streaming the paddle from a smartphone mounted on his board and Jones piloting a support boat, also live-streaming, taking photos, and giving Muscat energy bars and water. “It was a beautiful moment,” says Jones. “It was great seeing him out there paddling for an important cause and doing what he loves most.” The long-distance paddle netted thousands of views and raised more than $8,000.
Muscat got involved with End Epilepsy to help others, but it also made him realize that he needed to focus on himself. After more than a decade of living with epilepsy and battling his seizures, Muscat decided to tackle his condition the same way he tackles the waves: head-on and fearlessly. “I talked to my doctors extensively and went through months of testing,” says Muscat. He was ultimately diagnosed with a kind of epilepsy that can’t be controlled with medication, and his doctors believed that with brain surgery he would have a 70% to 80% chance of never having a seizure again. So, on March 12, 2018, Muscat had the surgery and has been seizure-free since.
This new breakthrough in his health allowed Muscat to pursue another passion: becoming a father. His son, Atlas, was born this spring.
“Jared and the other End Epilepsy ambassadors are creating a ‘ripple effect,’” says Jones. “As they band together in advocacy, they inspire hope, amplify knowledge, and empower others.”
Jones may be right: It might be a ripple effect, or it could be
a mighty wave.
If you have epilepsy, do not try surfing, or engaging in other active sports, without consulting with your doctors first.
Originally published in EpilepsyAdvocate Fall 2019.