An act of senseless violence led to Phil developing epilepsy. Then, he decided to devote his life to researching the condition.
Phil Haydon remembers the day that changed his life forever. For many, it was a sunny day in 1972, in the south of England. For Phil, who was 15 at the time, it was the last day of school before the holidays, and the exciting start of weeks of freedom.
He and a friend were cycling home, when he suddenly felt a heavy thud on the left side of his forehead.
“I didn’t realise at the time,” says Phil. “A drunken teenager with a grudge had thrown a house brick at my friend, but his poor aim meant I was the victim. The blow caused me to veer across the road. Blood streamed down my face, so much that I couldn’t see out of my left eye.”
As the pair weren’t far from school, they decided to backtrack there, rather than go home. Phil thought he’d just suffered a bad cut. But on arrival, the school secretary’s face told a different story. “Her face turned white and she almost fainted at the sight of me.
Before Phil knew it, he was rushed to hospital in an ambulance where his parents were waiting. Yet the local infirmary didn’t have the facilities needed, so he diverted to Radcliffe Infirmary in Oxford and underwent emergency surgery.
Doctors had to remove a shard of brick lodged in his forehead. It was here that Phil found out how serious his injury was.
“It wasn’t just a bad cut. The impact of the brick on my head was sufficiently violent to crush part of my skull. A surgeon had to remove a two-inch diameter piece of my skull behind the forehead.”
That first week after the accident was a blur for Phil. After arriving at the hospital, he started having multiple tonic-clonic seizures. He spent another week in hospital, after which he was discharged with prescribed epilepsy medicines phenobarbitone and phenytoin.
“I didn’t realise the magnitude of what had happened to me nor did I understand the potential long-term consequences. Perhaps this was lucky, as it meant I was not holding back from moving forward.
Phil spent the rest of the summer recovering, and when he went back to school, he found it a struggle. It was difficult to concentrate and he frequently felt dizzy. But his parents were adamant that he attended every day and told him to do his best. Phil later discovered that his dad told his teachers not to go easy on him, and to treat him like any other student. His dad was concerned about Phil using his condition as an excuse not to try.
“This was tough love, and not something I’m certain I could do, but for me it was effective. Despite my hard work however, I still failed half of my O-Level classes. But I scored well enough in my A-Levels to be accepted into The University of Leeds in 1976.”
It was Phil’s personal experience with seizures that inspired him to study a subject that could reveal more about the mysteries of the human brain. “Just before a seizure, I would get an aura. It feels like the beginning of a seizure, but you’re still conscious, and then your brain suddenly takes over. I remember thinking, ‘Oh my goodness, I think I have control, but I do not’. The brain is just allowing me to think I have voluntary control.
“To this day, over 40 years later, I still remember the auras that came with my seizures. I started to ask, how does one have a seizure? What happens to the neurons and the networks in the brain?”
Phil became fascinated to know more, to help him gain a better understanding of what was happening to himself. He chose to study physiology, and then began to specialise in neuroscience as soon as he could. This led to him researching various neurological conditions, such as Alzheimer’s, depression and epilepsy.
His first two years at university were a struggle, he admits. “I don’t do well remembering facts and when combined with being a bit of a rascal when I was younger, I didn’t perform too well in my exams in those years.”
However, in his third year Phil found his calling: his classes were almost exclusively focused on practical lab research. “It was logical thinking and practical work, and that’s where I really caught fire in terms of what I wanted to do.”
Following this, Phil wanted to pursue his education towards a doctorate but hit a stumbling block. “My professors at Leeds dissuaded me from pursuing a PhD, saying that my grades weren’t good enough. I argued with them, then offered to pay my own way, using funds I’d gotten as compensation for my injury. The reality was I only had enough funding to support myself for one term.”
However, Phil’s motivation and passion for his field meant he wasn’t about to give up. He applied anyway. “When I want to do something, I try not to let obstacles get in my way. I had no idea how I would pay for the second term, but I thought if I let that get in the way I would never succeed.”
Phil also managed to land a weekend job as an ECG technician in the local hospital to help fund his studies. Then one day, the chair of his department encouraged him to apply for the Emma and Leslie Reid Fellowship for post-doctoral studies. Phil thought this was a little unusual, applying for a post-doctoral fund, despite not being a post-doctoral student, but went for it anyway. When he heard back, it was bad news, or so he thought.
“I was told I interviewed well but couldn’t be awarded a fellowship since I wasn’t a post-doctoral student. I had a sinking feeling – I thought it was all over and that I would need to go to back to my hometown to find a job. But in the next sentence, the panel told me they would be granting me the first annual Emma and Leslie Reid scholarship for graduate studies. What an emotional swing in just a few sentences!”
Phil was over the moon. He had landed a scholarship that paid for his entire three years of PhD study. “Words cannot describe the feeling. They believed in me and now the only obstacle to my getting a PhD was whether I was creative enough to perform the science. It was remarkable.”
Phil initially studied synapses, the gaps at the end of neurons that allow signals to pass between one another. Then, a chance encounter led them to examine glial cells, which are cells that provide vital support for the neurons in the brain. Phil and his team discovered astrocytes, a type of glial cell, could also release chemical transmitters.
“This was one of the observations that we had to follow up on since it was so novel. We published the first paper on this in 1994 and since then it has been our focus. We have been able to identify more roles of astrocytes. We looked at how they control synapses, regulate sleep and wakefulness, and how they contribute to epilepsy, among other conditions of the nervous system.”
Phil went on to complete his PhD in physiology and undertake his post-doctorate training at the University of Iowa in the United States. “I was attracted to neuroscience because there was a certain degree of being able to relate to it.”
Phil studied fundamental neuroscience for several years and while working as a Professor at the University of Pennsylvania School of Medicine, he collaborated with Professor Doug Coulter. He was an expert in epilepsy, and together with him, Phil was able to focus some of his work into this area.
“It’s been so rewarding to identify potential mechanisms underlying epilepsy. When I moved to Tufts University to be the Annetta and Gustav Grisard Professor and Chair of neuroscience, I was fortunate to be able to hire several new colleagues. One of the areas that I emphasised research was in epilepsy. I hope that by doing so I have been able to help the community and to accelerate research in this area.”
Today, Phil has been seizure-free for more than 40 years thanks to his epilepsy being medically controlled. However, he finds discussing his auras difficult. “If I’m asked, I describe them but generally stop before finishing. Even the thought of auras is so vivid and realistic that I need to stop, as I’m concerned it might trigger a seizure.
When he’s not conducting research in neurology, Phil dedicates his life pursuing another passion: sailing. Before his injury, Phil was a competitive white-water kayaker, which he then had to give up on due to his condition.
“That got pushed aside as I went to college and had a family. As my kids started to leave home for college it was time to find a hobby that I was passionate about. Being on the water was what I loved. Kayaking, I can’t do that – it’d be too dangerous. So, I decided to give sailing a shot. In 2007 I took classes on the Delaware River. And then I got hooked.”
While Phil was living in Boston, he bought a boat in 2009 that he named Prairie Gold and has sailed on it for around 18,000 nautical miles. Then, in 2015 Phil decided to take it up competitively, entering a 2015 New Year’s Day race.
“I was immediately bitten by the racing bug and that summer went to compete in more events further afield.”
Phil now sails on a Quest 33S named Cepheus, a 33-foot sailboat. “She is quite amazing to sail. With just a little wind she picks up and gets moving. There aren’t many creature comforts on her but feeling her move through the water is quite thrilling.”
Despite Phil being seizure-free, he still has to be careful with his epilepsy when he’s on the water. “With any medical condition you have to put boundary conditions on what’s reasonable. So, for example, sleep deprivation can be a trigger for seizures in some people.”
So before Phil went offshore sailing, he practised sleep deprivation at home. He took an hour’s nap at night, woke for an hour, slept for an hour, then woke for another hour. He’d do that for several days to discover how his body would react, within the relatively safety of being at home.
Luckily for Phil, his seizures never emerged, and he was comfortable with doing longer trips and races.
“Another concern is taking medications on time. I have a logbook where I document the boat and my medications. If I’m sailing for several days, I can get fatigued. This logbook helps make sure I don’t forget to take my medicines. I also have an app on my phone to measure my reaction time, which can highlight how tired I am. I calculate this in advance and use it as a method to let me know when I should take a nap.”
As well as this, Phil makes use of safeguards that are recommended for any sailor out on the water.
• Being attached by a tether to the boat
• Using a satellite tracker so people can monitor his journey
• Having regular check-ins with satellite phone calls and emails
• Filing a plan with crew onshore, so they understand the journey and can see if there are any changes in his route. In 2019 Phil had a problem with his boat that caused an alteration to his route. Thankfully with his safety measures, his crew knew he was fine
Phil also knows that sailing can be a dangerous experience, especially alone. To prepare, he hits the gym several times a week with a trainer, to gain strength and endurance. Funnily enough, he also practises napping, which is essential to staying alert and able when sailing. “This is very important, as it allows me to very quickly take a 20-minute invigorating nap.” Phil also attends safety seminars and medical training, including learning how to self-treat if he ever needed.
Phil has since sailed as far north as Maine to destinations as far south as New York, Bermuda and the Caribbean. Along the way, he’s learned how to deal with some challenging situations. In 2019, during a solo race to Bermuda, Phil’s boat hit some turbulent conditions. He had a problem with one of the boat systems and needed to fetch some tools from below deck. The next thing he knew, a wave slammed into the hull, throwing him across the boat. Phil landed on a piece of wood and suspected that he’d broken some ribs.
“I decided for safety that I should turn around. I activated my safety measures and the shore crew were told I would be coming back. The voyage home took two days. The hardest part was getting the sails down so that I could dock. I was alone and had to do this with one arm – the other was tightly held against my rib cage. I have learned through experiences that it is quite incredible what a motivated mind and body can do and overcome.”
Despite this scary encounter, Phil has learned not to hold back. He says that sailing has unlocked a real passion in him. “When you’re on a boat, you’re the skipper. You forget about everything at work and what’s going on with your health. You just have to focus on sailing, making sure you’re safe. Then, with time, I learned to love the sound of the water just rushing by the boat and trimming the sails just to get that extra little bit of speed.
“And, there are the stars. There’s an incredibly starry night, and you’re just at one with the environment, your boat and your mind. I can’t fully describe the sensation. It’s just amazing. You’re looking after the boat; you’re checking for issues. Then, you’re looking at the Milky Way stream across the sky like you’ve never seen before in your life. And then you have time for your thoughts.”
Phil is now preparing for the challenge of a lifetime in 2021: a three-year voyage that will take him around the world. And he’s doing it in aid of a condition he developed that fateful day, and what motivated him to devote a lifetime of research towards: epilepsy.
“Our Sail for Epilepsy mission is to inspire people with epilepsy to take one more step towards achieving a fuller life. Our three-year circumnavigation will inspire people with epilepsy, raise funds to support research into the causes of intractable epilepsy and to raise awareness about epilepsy.”
During the team’s voyage, Phil plans to disembark at stages to meet with epilepsy communities around the world. These destinations include Bermuda, Panama, Tahiti, Sydney, Bali, Madagascar, Cape Town, Rio de Janeiro and the Caribbean, before returning home to Boston.
The Sail for Epilepsy endeavour will also post photos, videos and blogs as they travel around the world. People will be able to track Phil’s ship via the Sail for Epilepsy website, and they plan to have live interactions with people living with epilepsy. For those who want to follow their voyage, there will be a weekly email newsletter available as well as regular posts to social media.
Like the scientist within him, Phil is being readily prepared for his voyage. “I will monitor and analyse my sleep patterns, stress levels and any medical challenges I face while sailing. Our hope is that this voyage will inspire epilepsy patients, their families, and their caregivers to ask themselves, are you able to do something to improve your quality of life? Can you take one extra step to do something you haven’t done before, with the necessary guardrails in place?
“We want those affected by epilepsy to join us on this journey and are planning an online community to share inspirational stories of taking one more step towards a fuller life.”
Despite Phil’s impressive research profile within epilepsy, he wanted to give even more. “I want to give back to the community. Can you imagine if one person got inspired and it changed their life? What if one person learns that epilepsy doesn’t have to be awful and they told their family and friends? I think big things can come from little steps.”
A proportion of all the funds donated will go towards the partners of Sail for Epilepsy: Epilepsy Foundation New England, and Tufts University School of Medicine. Then, at the end of the five-year program all assets will be sold, and all funds will also be donated towards them.
Funds going to Tufts will be used for research into the basic causes of epilepsy. “From this work, the goal is to identify new causes for epilepsy. This will set the stage for discovery of the next medicines designed for those patients who are currently treatment-resistant.”
With the Epilepsy Foundation New England, Phil plans to help support people and families with epilepsy. “We’ll also contribute to their camps that allow patients to enter programmes, including sailing camps! These programmes resonate with our ambition of inspiring people to take an extra step and to try to accomplish new goals.”
For more information on Phil’s voyage, visit sailforepilepsy.org