Kate’s Story
My journey with epilepsy began in 2010, year or so before I graduated college. Every couple of days, I’d feel a wave of confusion come over me — kind of like déjà vu, followed by an episode of aphasia. I thought that since post secondary is generally pretty stressful, I dismissed them as mere anxiety attacks. Even though they were scary and incredibly frustrating, I kept them to myself out of pure embarrassment. I blamed myself — these “anxiety attacks” were nobody’s fault but my own. The possibility that it could be something like epilepsy never even crossed my mind.
After graduating, I started working downtown Toronto. A couple of weeks into my new role, I had one of these episodes during a team meeting. I was in the middle of a presentation, when all of a sudden I was hit with that wave of confusion. I tried to regain my composure, but eventually got so embarrassed that I left the room without any explanation. As I was walking down the hall, I could hear people snickering at what they thought they had just witnessed — a young, anxiety-ridden girl who needed to work on her presentation skills.
Shortly after this incident, my doctor referred me to a neurologist. Sure enough, an MRI confirmed that there was a cluster of damaged cells in my temporal lobe. He explained that what I was experiencing wasn’t anxiety, but focal seizures — the most common type of seizure. At the time, I had no idea that there was more than one type of seizure; so learning that was a pivotal moment for me. Thankfully, once I started taking the proper medication, my seizures stopped completely.
Fast forward to a night in 2019, a couple weeks after I found out that I was pregnant. My husband awoke to me screaming uncontrollably, foaming at the mouth and convulsing. When the paramedics arrived, they confirmed that I had suffered a tonic-clonic seizure in my sleep. I was rushed to the hospital where they ran a series of tests — one being an ultrasound check on the baby. Unfortunately, the baby no longer had a heartbeat.
It’s impossible to know if the miscarriage was a result of the seizure, but I still blamed myself. I tried to bottle up the guilt and grief I felt in hopes that I would eventually forget, but that just made me more hostile and angry. Thankfully, I had a strong support system that helped me to realize that rather than trying to forget, I needed to take this as an opportunity to channel my emotions differently. Rather than dwell on the struggles epilepsy has brought me, I chose to pour my energy into epilepsy awareness.
Education is one of the best ways to overcome any type of stigma. It’s not only important to support organizations that fund epilepsy research and care, but to also advocate for yourself or a loved one. The more we are educated about the different types of seizures and what symptoms to look out for, the fewer people living with epilepsy will live in fear of judgment or discrimination. That’s why I make a point to be open with my friends and family about my health journey, and regularly post epilepsy-related content to social media… especially first-aid information!
I am thankful that my seizures are under control with medication, but I know there are so many others who struggle daily. It takes hard work and courage to let go of fear and to see the bright side of epilepsy. That’s why it’s important to practice mindfulness, self-care, and to speak to a mental health professional when you’re struggling.
I hope that sharing my story will inspire others to join the conversation. Whether you live with epilepsy or not, let’s work together to help end the stigma!
PS — My story DOES have a happy ending! My husband and I currently have our hands full with a beautiful (and feisty!) 5-month-old daughter… wish us luck!
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