I don’t remember when I had my first seizure- but I do remember the first one that truly altered my life. I was walking home from school early into my grade 10 year and all the sudden I couldn’t see. I couldn’t breathe, there was pain running up and down my entire body and everything seemed so loud. This was also the moment that my depression first grabbed onto me- though for the longest time I didn’t know the connection between it and my Temporal Lobe Epilepsy.
I didn’t tell anyone what had happened that day but over the next year, my downward spiral was obvious. I would have blacked out moments daily (absent seizures) that were accompanied by pain and an overwhelming fear. After this I would slump into an overwhelming depression. My anxiety held me hostage in my bedroom and my eating habits became disordered as a source of control.
Then there were the visions, hallucinations, dreams, and voices. I constantly heard voices that sounded like someone was standing just behind me. I would see things that didn’t exist but manifested in weird wonderland type incidents. I would see trees walking, pots and pans dance across the room, I woke up one night and was convinced my bed had been moved outside. I had always seen the world differently but had never known why. Teachers always had labeled me as a day dreamer- little did they know the cause behind it.
In grade 12 I dropped out of high school. Well… sort of. My parents helped me homeschool myself to graduation- but I couldn’t attend many classes. I was admitted to a treatment center for mental illness after a suicide attempt. I spent months in and out of there, and I am both thankful and sad about it. I am thankful to the center for keeping me safe, I am sad because I now have seen how broken our system is with things it doesn’t understand.
One of the major problems facing people with TLE and their families comes from doctors and specialists who don’t listen to the patient but forge ahead with the easiest and quickest diagnosis. You must be schizophrenic if you hear voices. You must have migraines if you have head pain and auras. You must be bipolar if you have trouble concentrating or have hallucinations or have wild mood swings.
So, the doctor prescribes what may be the wrong medication or treatment, which not only fails to address the condition, but also may cause additional physical, emotional, and psychological troubles for the patient and for the people around the patient.
I am very thankful to my family for being so patient with me and searching for an answer. They laid with me endless nights, drove me to hundreds of appointments, and argued with dozens of doctors till I was properly diagnosed.
Once I received a correct diagnosis I was put on a medication to calm the seizures down. I occasionally still have seizures, usually triggered by stress, lack of sleep, or specific sights and smells. However, I’ve learned how to deal with them and taught those close to me about them.
In the past few years of my life, I accomplished things I never dreamed of during the darkest days. My disordered eating is under control, my depression mostly stays at bay, and my anxiety becomes easier to deal with. I occasionally still hear voices but they are not nearly as prevalent as before. I’ve graduated from both Capilano University and Simon Fraser University, been president of my sorority, became Miss. Coastal Vancouver, run my own non-profit, gotten into the corporate world, and become an entrepreneur. I’ve learned anything can be accomplished with the support of the team around you.
Although epilepsy is often a source of frustration, anxiety, and near-despair, epilepsy in some ways has been my great asset. I have learned to accept the unknown, relish in
my small successes, and step out of my comfort zone to reach my goals. TLE allows me to see life in a unique way that I wouldn’t trade for the world.