On an afternoon in 1973, 15-year-old Phil Haydon was riding his bicycle home, on the brink of a relaxing summer vacation. But before he could reach his destination, everything changed.
“Somebody threw a house brick and it hit me in the forehead, causing a depressed compound fracture of the skull, so a two inch diameter piece of my skull was crushed,” he said. “Within an hour, I started having tonic-clonic seizures.”
Phil’s friends and family were critical supporters during his early recovery. They made a point to help empower him to continue doing the things he was passionate about… even while that two inch piece of his skull was still missing. That summer, he was able to continue playing cricket with his friends because his parents got him an ice hockey helmet to wear, and his friends agreed to remove fast balls from the game.
Despite the drowsiness brought on by Phil’s new medications, his dad also ensured that his teachers kept holding him accountable for his school work throughout this transition. In spite of the exhaustion, this medication helped Phil get medical control of his epilepsy throughout the rest of high school. But that medical control didn’t last too long.
“Three weeks before I went to university, my primary care physician said, ‘Well, we don’t want Phil to be on medicine while he’s at university,’ so he took me off all of my medications over that three week period,” he said. “My first night, I was at a residence hall party to get to know everyone, and I had a tonic-clonic seizure.”
This experience taught Phil some valuable lessons about disclosing his condition to others.
“I had no choice when I disclosed, very publicly, that I have a seizure disorder. But I feel very lucky that people found out,” he said. “The next morning, my roommate put his arm around me and said, ‘Phil, tell me about epilepsy and what I can do to help.’ Even though we fear people knowing, they can be so warm and receptive once they know about it. Still, disclosing your epilepsy is a very personal choice.”
Even though Phil was working towards a successful neuroscience career, he still faced challenges when it came to disclosing his epilepsy.
“After I graduated with my PhD and went to postdoctoral training, I started looking for jobs. I was amazed when people told me not to tell them about my epilepsy. They told me I wouldn’t get a job if I disclosed,” he said. “Once it was medically controlled again, I actually went decades without even discussing my epilepsy.”
In 2011, Phil had an allergic reaction to one of his medications and developed Stevens-Johnson syndrome. While hospitalized and recovering from this potentially deadly condition, he had a realization.
“I thought, I’m a successful neuroscientist and if somebody wants to try and fire me because I talk about epilepsy, they can try. I will give them hell,” he said. “I just decided then that it was time to speak up and try to give back to my community. If I couldn’t talk about this, who could?”
As a result of these experiences, Phil founded a nonprofit called Sail for Epilepsy. It combines his childhood passion for whitewater kayaking with the lesson he learned during his first summer with a seizure disorder: You can do anything as long as you have safety guard rails in place.
“With this nonprofit, sailing is the hook and epilepsy is the message. I’ll speak at events where I share my experiences sailing across the Atlantic Ocean, I share about the Bermuda One-Two race that I compete in regularly, I share how common epilepsy is, and I teach a little bit of epilepsy first aid,” he said. “It’s all about educating the public.”
A significant part of Sail for Epilepsy is the One More Step Challenge, which exemplifies Phil’s belief that people with epilepsy can do anything they put their minds to. When sailing, Phil’s able to stay safe by having a seizure action plan in place, wearing a life vest, and remaining tethered to the boat. These types of safety guard rails can be tailored to any passion.
“The idea of the One More Step Challenge is to ask yourself if there’s something you can do that will allow you to live a fuller life,” he said. “When you sign up for the challenge, you become a virtual shipmate and we put your name on the hull of the boat. We now have virtual shipmates in over 21 countries.”
Today, Phil is 65 years old and is continuing to pursue his passion for sailing, traveling, loving his family, and giving back. He hopes that all people with seizure disorders can experience the same.
“I’ve been medically controlled for over 45 years, but a day does not go by where I don’t think about seizures. It’s always with me,” he said. “But if you have epilepsy, you can’t think about the things you’re unable to do. You have to think about what you can do, try new things, and find ways of living a little bit more.”
