I first became involved with Epilepsy Southwestern Ontario when I moved to London for University. I was looking for a support system to help me deal with my epilepsy. Moving away from my family was hard, but I did not want to let my epilepsy hold me back. I was so fortunate to find a great group of people who helped introduce me to others around my age with similar concerns. Through ESWO, I was able to participate in a group of youths affected by epilepsy. We spent an afternoon bowling and having lunch, where we were able to share our stories about how epilepsy has come to affect our lives. Thanks to the ESWO, I was exposed to the daily lives of people with epilepsy, their own personal struggles, and how their lives mirrored mine in several ways. Nothing was more comforting than speaking about my seizures and knowing that the people around me completely understood what that aspect of my life was like. I also had the opportunity to volunteer with ESWO at their gala in 2012. Epilepsy can be an unexplainable and puzzling disease, often without many concrete answers or solutions. To witness a large room full of people devoted to helping those affected by epilepsy was beyond heart warming and encouraging. Every outlet ESWO has brought my way has allowed me to connect with others and feel like I am not struggling alone.
My first seizure made for an unexpected morning. I was 17 and getting ready for school when my mom heard a loud bang. She found me having a generalized tonic clonic seizure on the bathroom floor. I do not remember much from that morning but I do recall being scared and completely unaware of what had just happened. My sister, who is one year younger than me, had also experienced her first tonic clonic seizure a few months earlier. With no other family history of epilepsy, I remember thinking that after a few tests, we would both go back to being our normal, healthy selves, and this would all be in the past. A short while after, my sister and I were both diagnosed with Juvenile Myoclonic Epilepsy. I have since been prescribed countless medications, and have also received a Vagus Nerve Stimulator. Ten years later, it is still not uncommon for me to wake up on the bathroom floor after a seizure.
Epilepsy has affected my life in just about every aspect. It’s who I am; but only a part of who I am. I am fortunate to have been able to complete school and hold a full-time position. I have had to cancel plans to further my education because of my current struggles with my seizures. I cannot drive, but am blessed to have amazing friends and family in my life who help me get to where I need to be — even though I have completed Driver’s Ed twice! I am engaged, and my fiancé has already devoted a lot of his love and care to helping me with my seizures; which I am forever grateful for. Epilepsy has affected my mental health in ways that I did not anticipate. The fear of being alone or in public when I have a seizure can cause me to overthink and create feelings of anxiety and depression.
Throughout my epilepsy journey so far, I have surprised myself with how strong I can be. I have spent a majority of my time trying to understand the unpredictable seizures, lack of answers and countless attempts to control my epilepsy. I have had to stop looking for reasons behind each seizure. I have discovered how strong I can be, and that strength flourished when I accepted that the seizures will still come, and what matters is that I am still here to face them. I would have never discovered this level of strength within myself if it hadn’t been for my epilepsy. I have allowed much more time for self-reflection, and have come to accept that epilepsy is beyond my control. I am far more accepting of myself and refuse to view my seizures as a flaw.
I want everyone living with epilepsy to know that they can embrace their epilepsy. Although epilepsy may restrict some of our activities (such as driving), this must not be your focus. We need to remember that our health and happiness is in our control, even if our seizures may not be.