In this story shared with us for #EpilepsyDay 2023, Jack O'Connor from Cork outlines his journey with epilepsy so far....
My epilepsy journey began in 2017 when after a night on the town I had my first tonic-clonic seizure. I had been looking at a potential option for college next year, and when my friend came into the room to find me seizing on the ground. At that, time I had no idea how my life would change from this one incident.
A year on, and I was entering my first year of college, despite not fully knowing the extent of my seizures. Alongside that, I had moved to a new city, began living independently and trying to figure out my future.
Almost immediately I found myself crumbling under the pressure of new surroundings, people, and responsibilities.
From here my seizures became worse as I would push my body to limits, I had not imagined before.
At this time in my life, I had been an avid runner, averaging about 10 kilometres a day just to clear my head and keep active and out of nowhere I was unable to run 100 meters without feeling anxious, confused, and disorientated. Having an outlet like running in my life was one of my main routines and to this day I am heartbroken every time I try to run, and my body gives up almost immediately. It’s been one of the crueller impacts of epilepsy for me – as I know not everyone living with the condition is affected in such a way.
Throughout college I made it my goal to try to educate as many of my peers about epilepsy, I found that most young people in Ireland had a preconceived notion of epilepsy being a one-fits-all kind of diagnosis but even with that experience, almost everyone who I have been open with over the years have been eager to find out more about the condition and the many way it affects people.
If I was to redo that portion of my life, I would have definitely looked upon my condition with a more positive view and tried to educate more people on how to safely care for a person having a seizure. The anxiety I felt when trying to tell my peers was excruciating yet over the years it has become easier and easier.
Post-graduation I have become better at measuring, yet enjoying my time safely figuring out how to mind myself at festivals, playing sports and working. I am incredibly lucky to have a supportive family with my mother and father educating themselves through Epilepsy Ireland and finding a support system through my closest friends – with my close friends Rory and Ewan looking out for signs of a seizure and dealing with me in a controlled manner.
I would highly recommend any young person beginning their journey through college or living independently to be open and upfront with their diagnosis. I have found that people are eager to learn about different forms of epilepsy, I found that whenever I have had a seizure, from Cork to Milan, there has always been somebody who will help a person in need, regardless of their understanding of the condition. People wanting to help is not a problem – but its so important that they know how to do correctly.
I have discarded the idea of dealing with this alone, I am done with hiding my condition and embraced that there is good in people, no matter where you turn for support, people want to help a person in need, it is just a matter of helping them learn how which is why the message of making Time, Safe, Stay general knowledge is one everyone needs to hear!
Thank you Jack for sharing your story and helping to create awareness of epilepsy and increasing understanding. For everyone reading, you can learn more about epilepsy by visiting the 'Epilepsy Information' section of our website - and please ensure you make Time, Safe, Stay part of your general knowledge as part of #EpilepsyDay 2023! Visit the 'International Epilepsy Day 2023' section of our website to do just that!