Sailing Against the Storm

I lay in my suspended bunk and waited for the next wave to lift me up and slam me down onto the hard bench below. It was the middle of the night and about 12 hours into what would turn out to be a 36-hour low pressure system. The winds from the northeast were testing me and the boat on our way to Bermuda. I was glad that I could not see the walls of waves that the Gulf Stream slammed into the hull. The forecasted 30 knots of breeze had been true and then some, as I flew off of waves at speeds of up to 21 knots even with reefs in the jib and mainsail.

This was my first season onboard Fearless, a 2020 Jeanneau Sunfast 3300. I wondered, had I prepared the boat well enough? Had I prepared myself well enough? As we ricocheted off the next wave I thought, “I sure hope the builders were at their best during construction.”

My eyes, darting from the instruments to the water sloshing in the bilges and back to the instruments again, caught on two stickers on the forward bulkhead. Two names of Virtual Shipmates—each with epilepsy like myself—one about to undergo surgery in Australia and the other the daughter of a close friend. Each suffering from uncontrolled seizures, which can cascade into a multitude of other life-altering challenges.

They were why I was out here.

At 2:30 p.m. on July 6, 1973, I was riding my bike home from school when a house brick, thrown through the air, hit me on the forehead. I lost a 2-inch diameter piece of my skull and began having seizures within hours of the injury. It took two surgeries, along with medication and dosage adjustments over a period of several years, to become stabilized. But I am fortunate to have had my seizures controlled for more than 45 years. It is now my life’s mission, through my nonprofit organization Sail For Epilepsy, to inspire others affected by epilepsy to choose to live fuller lives, as I have done, with the necessary safety measures in place.

Epilepsy is diagnosed when someone has two or more seizures which result from elevated electrical activity in the brain. Like many diseases, epilepsy causes a spectrum of impairments that are patient- specific. I am lucky that my seizures are medically controlled and there are only a few things I can’t do: scuba diving and solo piloting. So I challenge myself by racing, either solo or doublehanded, in offshore races around Newport, Rhode Island.

As part of the Sail For Epilepsy program we ask people with epilepsy, their families, and their caregivers to join our One More Step Challenge. They choose to do something they haven’t done before, regardless of where their disability sits on the epilepsy spectrum. When you accept the OMS Challenge you become a Virtual Shipmate. We put the first names of our Virtual Shipmates on the hull of Fearless, and we sail with this crew of over 500 people from 21 countries. It is their courage and determination, as they face the daily hardships brought on by epilepsy, that provide me strength when I sail.

The storm en route to Bermuda that gave me more than one bruise happened during my fourth attempt at the Bermuda 1-2 and the third I would eventually finish, taking third in my class on the solo leg from Newport to Bermuda. The storm ripped the wind indicator from the mast and saw me crawling on my knees aft to start the engine when I needed to charge the batteries. With water cascading over the deck into the cockpit, the touchscreen instruments were constantly affected.

At one point, this excess water switched the autopilot into standby mode mid-Gulf Stream. Of course, this was in the middle of the night and led to an almighty broach while I was napping. As is often the case, the next day brought a glassy sea and the sound of the mainsail flogging in no wind.

I laughed to myself as I tidied up the boat and downloaded the latest weather information, looking for the path to get to Bermuda in the shortest elapsed time. Wind models didn’t agree and forecast wind strength was light. The routing suggested a course well to the west of the rhumb line for 24 hours. I decided to head straight to Bermuda and follow the shortest path given the unpredictability of the forecasts.

With my route now planned, I took the opportunity during the calm conditions to connect with my Virtual Shipmates. I recorded a short video for social media to show everyone the contrasting conditions as compared to the previous day. I talked about being in the moment and finding ways to enjoy every aspect of life, even if things aren’t going as planned. I made a video call to a Virtual Shipmate who lives in Florida to show her what life in the middle of the ocean looked like and to hear about her journey with epilepsy.

Epilepsy can be a very isolating disorder, often making it a challenge even to leave the house for fear of having a seizure in public, or worse, sustaining an injury. I’ve found through making these connections, by showing the ways I’m living my life despite epilepsy, I can encourage others to take on new challenges: walking a city block on their own, learning to ride a bicycle, playing a new instrument, talking to their classmates about epilepsy to help reduce stigma.

This mindset informed the name I chose for my boat—Fearless. I want our followers to “fear less.” This doesn’t mean one should go through life—or sail—with reckless abandon. Rather, take a small step outside your comfort zone. Talk it through with your family and if needed, your medical team. Then, take another small step. And another. I believe by taking small steps we can achieve great things.

Up next for me is the famous Newport Bermuda Race this summer. It has the same course as the first leg of the Bermuda 1-2 but the fleet will be much larger, with boats ranging from 30 feet to more than 60 feet long. I will be racing in the doublehanded class, along with my co-skipper Alex Kraebel, who I trained with last season. We have become a solid team of just two while most of the other boats will be fully crewed with potentially 10 people aboard.

Despite being doublehanded, we won’t be alone. Fearless may only be 33 feet long, but she will have her crew of Virtual Shipmates along for the ride. Preparation, skill, and execution are all necessary to complete these races, but for us there’s one other essential component. I don’t know if I could do it without the motivation provided by this amazing group of people. When the next piece of equipment breaks or the wind builds in the middle of the night, I’ll think of Tyler in South Africa, learning to play the drums and coming to terms with having epilepsy. Or Sean in Canada, who has his own sailboat and recently chose a surgical option to control his seizures. Or West in Connecticut, who spends more time in the hospital than at home but has a caring family around her to get her through the tough times.

They will help me get across the finish line.

Phil Haydon is the Annetta and Gustav Grisard Professor of Neuroscience at Tufts University School of Medicine where he runs an active research lab studying a variety of neurological disorders. He’s sailed over 30,000 nautical miles, including an Atlantic crossing in 2022. You can learn more about Sail For Epilepsy by visiting sailforepilepsy.org.

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April 2024