Living a Fuller Life with Epilepsy
By Phil Haydon
In 2022 we sailed across the Atlantic Ocean with the goal of inspiring those with epilepsy to live fuller lives. What an experience. Broadcasting live videos back to our worldwide epilepsy community, meeting people with epilepsy in the Azores, Portugal and Morocco. Seeing new connections made while also hearing stories of health inequities and parents barely able to feed their children let alone pay for the medications to control their seizures. How did this all happen?
Let’s go back to July 6th, 1973, when I was riding home from school on my bike. Someone threw a house brick that caused a depressed compound fracture of my skull. Within an hour I was having tonic clonic seizures. A year later I had a vitalium alloy plate inserted into my skull. I struggled through high school and later university with phenobarbitone as my medication. Eventually, I became medically controlled. I often fell asleep in class, but with the gentle encouragement of my family and through much persistence, my studies improved. I obtained a Ph.D. a faculty position, and as I write I am the Annetta and Gustav Grisard Professor and Chair of Neuroscience at Tufts University School of Medicine. In 2011 I developed Stevens-Johnson syndrome in response to the medication I was taking as part of my medical control. As I lay in a hospital bed and later convalesced, I wondered, “how I can give back?” After much thinking I developed the concept of the nonprofit “Sail For Epilepsy” (S4E).
The goals of the nonprofit are to educate the public about epilepsy and to inspire those with epilepsy to live fuller lives. I look to examples from my own life where I’ve not let epilepsy hold me back. For a year back in the 70s I had a section of skull missing, and as a kid in England on summer holidays I wanted to play cricket. But how? The choice was simple, sit and do nothing, or find a way to overcome. My parents got me an ice hockey helmet to protect my brain and we changed the rules for all who played so that there could be no fastballs. Together we found a way to make it work. I used safety measures to allow me to play cricket, rather than letting my disability dictate the way I was living my life.
At S4E we have developed the One More Step (OMS) Challenge in which we ask people with epilepsy (or their caregivers / families) to take a step towards living a fuller life. My One More Step is to sail the oceans of the world despite my epilepsy. We now have people taking their own step in 21 countries across the globe.
About a year ago, I was invited to speak to the JoshProvides Epilepsy Support Group, where I talked about my journey and encouraged audience members to participate in the One More Step Challenge. Heather Crane, an adult with epilepsy, attended with her mother Jenny, and then joined the Challenge and became a virtual shipmate!
Is there something you could do to participate in this challenge? If you have epilepsy, what could you strive to do, that you haven’t done before? If you are someone who performs research and/or has clinical expertise in epilepsy, is there an extra step that you could take to help the community? As a neurologist in Agadir Morocco said when we recently visited “I realize I have treated my patients incorrectly. I normally focus on telling them what they can’t do, I need to encourage them to do more (with safety guardrails) and to take the OMS Challenge.
I distinctly remember a mother talking to me about her daughter. Her daughter wanted to join an epilepsy sailing camp. Her mother initially said no, but eventually allowed her to participate. At the end of camp, the daughter hugged her mum and said “You are the best mum in the world. Thank you for letting me attend the camp.” The daughter did have a tonic clonic seizure at camp, but with the safety measures in place there were no negative consequences. This is a true example of not being disabled by your disability.
To take the OMS Challenge and read about some of the ways our global network of virtual shipmates are living fuller lives, visit: https://www.sailforepilepsy.org/join-one-more-step-challenge/shipmates/
