Kassidy’s Story
My story all started in 2010, when I was 10 years old. There were times when I just couldn’t speak but I was fully aware of what was going on around me. When I was a kid, I REALLY liked to talk, I just assumed that I had too much to say, and my brain was taking time to think and that’s why I couldn’t speak. Until this started happening more frequently, at this point I was taken to the hospital for the first time. There they ran tests but never diagnosed me and suggested I get a second opinion. After my second and third opinion the doctors still had no idea what was causing these “episodes” where I lost the ability to speak. My mom and I travelled all over Ontario to attend appointments; EEGs, MRIs, ECGs, Ultrasounds, and even a therapist. All these appointments ended with the doctor saying “I’m sorry, I see nothing wrong”. I was told it was my anxiety and that it was all in my head.
My public-school librarian Mrs. Quan, reached out to my mom and voiced her concern as she believed I had epilepsy. Doctors had mentioned that epilepsy was a possibility, but the tests continued to show no abnormalities to suggest it. Mrs. Quan continued to support my mom and I. She advocated to the school to put further supports in place for me. I remember having my classroom teacher explaining to the class that a new educational assistant was entering the classroom to ensure I was safe and to record whenever I had an “episode”. I remember feeling different and ashamed, I hated that feeling. Then after about 4 months of having up to 50 of these “episodes” a day, they just stopped. We thought nothing of this and believed the doctors were right, that it was just my anxiety.
Fast forward to when I was 15. I started having these “episodes” again. I was referred to a neurologist at my local hospital, there he looked at me past EEGs and MRIs. He gave me the answers I had been waiting 5 years to receive, that I had epilepsy which caused focal seizures. These seizures were the reason I couldn’t speak. My mom and I were both grateful for an answer, and I finally felt heard for the first time since this journey began.
I began medication that day and have been seizure free ever since. I still must be cautious of my triggers and I am constantly explaining to people that when I have a seizure, I just go quiet for 30 seconds but I am still fully aware of what’s going on. The big thing that people don’t believe is that I don’t fall to the ground.
If there was a cure for epilepsy, I would worry less. I wouldn’t have to worry about my triggers or about my medication not working. I wouldn’t have to worry about thinking if I’m about to have a seizure or if I’m about to have a panic attack. I wouldn’t have to worry about losing my license or feeling different from others around me. But until than, I will continue to be an advocate and raise awareness surrounding epilepsy. I will continue to be proud of my diagnosis.
I am grateful for my amazing support system of people who have always supported me! Thank you, Mrs. Quan, my mom, my sister, my grandparents, my friends, and my boyfriend Jason!
The courage of those living with epilepsy,
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