Hi! My name is Ashleigh. I have been diagnosed with epilepsy. I want to share my story because, while epilepsy is part of my life, it doesn’t define who I am.
My first tonic-clonic seizure happened when I was 11 months old. After that, I experienced seizures about once a year until I was officially diagnosed at six. I remember going through a bunch of tests and medication adjustments to keep my seizures under control. But they began happening more frequently in my early teen years.
Throughout elementary and high school I was an athlete and played competitive soccer at the highest level. Living with the fear of having a seizure and constantly worrying, 'What will others think?' took a toll on me. Then it happened – a seizure right in the middle of the soccer field, in front of hundreds of people. I thought that would mean the end of my playing days. But the overwhelming support for me to continue proved me wrong.
My neurologist told me repeatedly that I could do whatever I wanted to do, so I continued playing. Back then, it was hard to believe my diagnosis didn’t define me. Over time, I realized that every time life knocked me down, I could choose to get back up. The only one standing in my way was me.
After high school, I went away to college, which meant learning to live on my own. The anxiety was intense, but I proved to myself that I could do it. In 2020, I graduated college, received my diploma, and was accepted into university—just as the pandemic hit, and brought me back home.
By this point, we’d tried many medications and tests, but my seizures weren’t fully controlled. Fast forward to March 2022, when my neurologist suggested testing at the London Health Sciences Centre (LHSC) as my epilepsy was medication-resistant. That November, in the middle of my university placement, I was admitted for a two-week hospital stay. Everything had to stop as I underwent MRIs, scans, EEGs, and other tests without medication to pinpoint the source of my seizures. Despite the disruption, I successfully graduated from University in June 2023.
The testing results were inconclusive, so I went back in September 2023 for even more invasive procedures, including my first SEEG, more scans and more MRIs. This time, I got the news I was eligible for surgery and was placed on the waitlist.
Between September 2023 and September 2024, I lived with the uncertainty of surgery dates, facing delays and frustration. But finally, I was scheduled for surgery on September 5, 2024. The procedure went smoothly, and I was so grateful to have my family and the LHSC team by my side!
Recovery has been a rollercoaster, but I know it’ll be worth it in the end! I’m learning to be patient and kinder to myself. Since the surgery, I haven’t had any seizure auras, and though I still have steps to go, I’m taking it day by day.
I hope my story inspires you to keep pushing toward your goals. You never know what is going to come your way or when it's going to come. Only you know what you’re going through, so trust yourself and your journey—and don’t let epilepsy control your life!
Embrace the power of purple!