Sailing to Victory for People with Epilepsy

Above the digital navigation display screen in the cockpit of Phil Haydon’s 33-foot sailboat are printed the words “I can and I will.” When Haydon was a teenager struggling with epilepsy, his grandmother cut the phrase out of a self-help book and hung it on the fridge to remind him to keep going even when things got tough. This June, those words accompanied him in the 53rd Newport Bermuda Race, where Haydon, the Annetta and Gustav Grisard Professor of Neuroscience at Tufts University School of Medicine, sailed to first place in the double-handed division. 

“Whenever you’re taking on significant challenges like this race, there are moments of self-doubt or exhaustion,” said Haydon. “I look at those words and it gives me the strength to go forward.”

It was Haydon’s first time competing in the iconic sailing race, which starts in Newport, Rhode Island, and crosses 636 miles of ocean to Bermuda. The four-day passage was particularly challenging this year, with a dying breeze at the start and steep waves in the Gulf Stream. (“It was like being in a washing machine,” Haydon said.) Of the 162 boats that started the race, only 147 crossed the finish line and two vessels sank on the way. 

But the race contained some breathtaking moments as well, Haydon said. A pod of dolphins kept pace with the boat for a time, playing in the swirls of water coming off the bow, and the sea glowed with bioluminescence in the dark.

“The things you see on the ocean at night are just incredible,” Haydon said. “At one point we were doing a quick sail change, about to get into the really hard work, and I said ‘Just a moment.’ There was no moon and we could see the Milky Way. You have to enjoy those moments.”

Haydon competed in the double-handed division, the bracket for boats with only two people on board. He sailed to victory with his co-skipper Alex Kraebel as well as nearly 600 virtual shipmates from 21 countries – people Haydon has connected with through his charity, Sail for Epilepsy. Haydon launched Sail for Epilepsy in 2019 to help empower people with epilepsy to live a fuller life, educate the public about the condition, and raise funds for research toward a cure. He named his boat Fearless as a message for anyone living with epilepsy, reminding them that they don’t have to live in fear of trying new experiences because of their disability. He hopes his own journey with sailing will inspire others to take small steps toward achieving new things.

“We’re trying to tell people with epilepsy, ‘Fear less. Think about what you could do that you have not done before, and think if there’s a way that you could do it safely,’” Haydon said.  “Good things come from small steps.”

Most of Haydon’s virtual shipmates are people with epilepsy who are participating in Sail for Epilepsy’s One More Step Challenge, committing to taking one extra step to try something new and improve their quality of life. Their names—as well as the names of people who have died from epilepsy, sent in by their loved ones—adorn the hull of Haydon’s boat. Throughout the race, Haydon sent messages to his team on shore to share with those following the race and featured some of his virtual shipmates’ stories in social media posts. 

“When we’re sailing, we’re sailing for them,” Haydon said. “I’ll see someone’s name at the navigation station and I think of that person. In the isolation of the race, I feel like I’m in the company of all these people with epilepsy and am working hard to help them.”

Haydon developed post-traumatic epilepsy when he was 15 as a result of a brain injury—he was struck in the forehead with a brick and needed to have a section of his skull removed. He started having seizures within an hour of being hit and struggled with them for the next four years until his doctors finally found the right mix of medication to control them. With the medication, he has been seizure-free for more than 40 years. He pursued a career in neuroscience and has made strides in our understanding of epilepsy, as well as Alzheimer’s disease and other neurological disorders.

Some of Haydon’s research at Tufts focuses on sleep, investigating the mechanism that causes the brain to desire sleep and understanding some of the cognitive consequences of sleep loss. He credits a portion of the recent sailing victory to his science-based nap regimen. One full sleep cycle is about 90 minutes, so Haydon scheduled a watch rotation every two hours. One person would be on watch, keeping an eye on things, while the other went below deck to sleep. They kept that watch pattern day and night. It can be challenging to get enough rest when sailing for multiple days with only two people, but Haydon and his co-skipper didn’t even need a nap when they arrived in Bermuda.

Lack of sleep can be a trigger for epilepsy, so monitoring his rests carefully is one of the safety measures that Haydon has implemented for himself while sailing. He also prints a schedule to ensure that he takes his medication at the right time and works with his co-skipper to create a plan about what to do if he has a seizure. He encourages others with epilepsy to work with their care providers to set up their own safeguards as they take that one more step towards living fuller lives. 

“For me, my one more step is sailing the oceans of the world,” Haydon said. “But someone else’s might be learning to ride a bike or walking a block alone. It’s all about your journey and what steps you can take, and how to do those with the right safety guardrails in place.”