The First Seizure
I was 12 years old when I had my first seizure. It was a day like any other, filled with the usual excitement and exhaustion that comes from returning home after a sleep-away camp. I was buzzing with adrenaline from the adventures and late-night chats with my cabin mates. My dad was engrossed in an episode of ER on the TV, and my mum was discussing dinner plans. Suddenly, everything changed. I had my first seizure. My parents did not know what was happening and were not very familiar with seizures or epilepsy. After an ambulance ride to SickKids and many hours and visits with the amazing neurology department, I got my diagnosis, and the journey of education and adjustment began.
Early Years of Isolation
Epilepsy made my early years feel very isolating. Many of my friends and schoolmates had never even heard of a seizure, let alone epilepsy. In the early years of my diagnosis, as I was trying to find the best medications and treatment, I was having seizures around my classmates much more often. I was an avid swimmer and participated in high dive—both activities that required the people around me to be very aware of my epilepsy. As the years went by, I learned that if I shared and helped to educate people, it would benefit everyone. This realization helped me feel less isolated and more empowered, knowing that I could turn my condition into an opportunity to teach others and foster understanding.
Embracing Epilepsy in High School
When I started high school, I began to embrace that my epilepsy was a part of me. I became more open to sharing and started to enjoy educating people, showing them that epilepsy was not something to be afraid of and that it was something you could live and thrive with. I participated in many sports and was part of a very competitive rowing team. As I approached 16, I had gone two years seizure-free and was looking forward to getting my driver’s license. Unfortunately, on my final lesson, I had a seizure and was no longer cleared to drive. This caused large feelings of setback and being different from my friends. I was no longer “becoming normal” but was back to trying to figure out the best medications and solutions for managing this ongoing battle, and I once again felt different.
Impact on Mental Health
This setback impacted my mental health significantly. I felt isolated and like I wasn’t able to celebrate the same milestones as my friends. I wasn’t gaining the same independence and felt constantly dependent on others. The non-visible effects of epilepsy are just as much a part of the battle as the seizures but are often not spoken about or acknowledged. They are very often underestimated since they are not easily explained, leading to a “suffer in silence” mentality.
Support System
I had a very supportive family and a close network of friends who were educated on what I was going through and knew how to help me if needed. I also saw a therapist to help with my mental health. Despite this support, the struggles I faced due to epilepsy were not easily explained to those not experiencing it—the brain fog, the difficulty in thinking and putting thoughts together, and the non-visible effects of epilepsy.
Acceptance and Giving Back
As I approached my twenty-first birthday, I started to accept that epilepsy was something I would live with for my entire life. I decided to embrace it and celebrate it. For my 21st birthday, I worked to raise funds to sponsor an epilepsy dog for a child. Giving back allowed me to feel like I was making a difference in others’ lives, especially those who had many more seizures than me on a regular basis. It also gave me an appreciation for all I have and the support system around me that was so willing to help and support the cause.
Managing Epilepsy as an Adult
As I grew up, I learned more about my epilepsy and how my hormones, stress, and lifestyle affected it. My epilepsy is highly affected by sleep (or lack of it) and stress. I began to find solutions to better manage my stress and adjust my lifestyle. I moved out of the city to a more rural setting and made adjustments to better manage my stress levels. Now, my medications are balanced, and while my seizures haven’t stopped, they are much more manageable. I still battle side effects and absence seizures regularly but have been able to build a life and work environment that allows me flexibility, understanding, and a level of independence without driving.
Embracing Support and Educating Others
I’ve learned to slow down and connect with myself, to turn off and decompress, and enjoy quiet to help quiet my mind. I’ve also embraced accepting support and help. What used to make me feel bad (such as asking for a ride or an accommodation) now gives me a chance to appreciate those who care for me and educate those new in my life about epilepsy.
Conclusion
While I still have moments of struggle and acceptance that this is something I will tackle my entire life, I now couldn’t imagine my life any other way. I believe there is a reason I have epilepsy, even if it’s just to help educate others. Everyone needs to know they aren’t alone and that there are many different ways epilepsy can present. While people will always say they understand, it’s hard to understand something you can’t see and don’t experience. The only way we can help those not directly affected is by sharing our stories and helping people to understand.
Stories like the one you see above highlight the crucialness of why donations are so important.
Your generous contribution will provide much-needed funding for research, education, awareness, advocacy, and client support, with the goal of increasing the quality of life for people of all ages who are living with epilepsy every day of their lives.
Please Donate.
