My first seizure was December 29, 2014, at the age of 12. It was a tonic-clonic seizure that happened late morning-early afternoon, and I do not remember anything about the morning prior to the seizure. I woke up in the hospital, and can vividly remember the amount of pain I was in. The walls were too bright, the light made me cry, my head was on fire and I had a bruise on the left side of my face from my eyelid up to my forehead.
I first got involved with Epilepsy Southwestern Ontario (ESWO) in 2016 at the Annual Seize the Day Walk and the YEP! (Youth Engagement Program) program. I enjoyed both very much! It was really nice to take a break from everything and be with people who share the same ‘normal’ as me, and I made a few friends.
Over the past five years, I have come to terms with the fact that epilepsy does affect me negatively, but I have learned how to maneuver around it in life. I never was a very open kid and I enjoyed being in the background of everything. But over time, when I started having seizures in more public places, I started gaining a lot of unwanted attention. I had trouble coming to terms with how much medication I had to take and how many times it changed. I felt truly broken because I couldn’t ‘fix’ myself. It was hard to see my younger sister take care of me and my parents worry about me all the time. I still don’t like it but I know I need it sometimes.
I want people living with epilepsy to know that although seizures suck and may make life seem hard for you and your family at times, you just have to get used to a new ‘normal’. Help is always in reach no matter how much or how long you resent it. As soon as you truly want help, everything changes and you get another new ‘normal’…a new start. Help is available through programs such as those offered by ESWO. Family members are also a great help for emotional support. There are many different websites and apps that connect people with similar types of epilepsy such as MyEpilepsyTeam. For me, the three most helpful sources were ESWO being there to educate my family and me about seizures and epilepsy, my family believing in me and supporting me emotionally, and the most helpful was myself and being able to understand my own needs to make it through the day safely. I have learned that baby steps are worth celebrating and a week without a setback is a true milestone!