One of the faces of our new awareness campaign for #EpilepsyDay 2024 is Wayne O’Reilly. Wayne is a Sales Executive, and Wayne has previously featured in International Epilepsy Day activities. Wayne was awarded with an International Bureau for Epilepsy Golden Light award in 2023 and he shows no signs of slowing down in his awareness raising efforts. As part of the shoot for this new campaign, Wayne spoke to us about his journey with epilepsy so far, and why its so important to raise awareness…
I had my first seizure when I was 23. I was working in a fast-food restaurant and had a seizure in the kitchen. I was taken to hospital, and they let me out the same day. A friend collected me, and I had another seizure in his car. So, I ended up in the same ambulance twice in one day!
At first, they blamed alcohol, smoking - all sorts of things which had nothing to do with the seizures.
It happened out of the blue – no warning signs. And it meant I couldn’t drive. I live in the middle of Wexford, so I became fully reliant on friends and family to get to work. Luckily, I got a job managing a new restaurant closer to home. But like many people with epilepsy, I was initially cautious of going anywhere in case people didn’t know what to do if I had a seizure. At first, even my parents didn’t know. My life changed in an instant, and it took a while to adapt.
But once I decided to be open about it, the stress just lifted. People with epilepsy often keep their condition to themselves through embarrassment or fear. So, I decided to try and help them build their confidence and show people I met how to handle a seizure. That was when I started to feel normal again.
When I first started talking to Epilepsy Ireland, very few men were talking openly about epilepsy, especially around my age. So, by being open about it, I was hoping to get other men to open up too - instead of feeling shame or embarrassment. There’s nothing shameful or embarrassing about it! You can still lead a perfectly good life.
I’ve got two sisters and four nieces who’ve seen me have seizures when they were as young as 3 or 4. So now they know what to do if they witness someone having a seizure and at such a young age, know all about the key words of TIME, SAFE, STAY. The same applies to my family, friends, and neighbours. It’s so important that everyone follows their example and takes the time to learn more.
For all other people with epilepsy reading this, don’t let this medical condition define you or hold you back. I know it’s full of ups and downs, and it’s always there in the background like a dormant volcano. I have experienced this very recently when after a period of seizure freedom post-surgery, I’ve had a couple of breakthrough seizures.
Despite this, my message is live your life and achieve your goals. Because if you don’t, you’re only going to be in a dark hole. And that’s not where you want anyone to be.
Thank you, Wayne, for being part of this important awareness-raising campaign. Take Wayne’s advice and learn how to correctly respond to a seizure by visiting the seizure first aid section of our website.