Alek’s Story
I grew up as a completely “normal” kid. I never knew about or tried to understand what epilepsy was. All of this changed when I was sixteen years old. My parents were in Tobermory at our family cottage. I stayed home and ended having a few friends over to watch some movies after work. There was nothing out of the ordinary throughout the course of the evening or the night. When the evening wrapped-up, we all went to bed, I in my room and the others near by, on air mattresses arranged on the floor. The next thing I remember was my older brother waking me. My friends had alerted him that they could hear me making strange noises, like I was choking or gasping for air. When they checked on me, they realized that something wasn’t quite right. I was having my first ever grand mal seizure. Over the following few weeks, I underwent various tests and met with a neurologist who confirmed that I had epilepsy. That name rang through my head for weeks. I was so confused as to what it could mean. My lack of knowledge about seizure disorders also made me think that I wouldn’t ever be able to live a normal life.
Once on medication, my seizures were mostly under control for the rest of my teens and early 20’s. I would suffer just one or two grand mal seizures a year. I decided to keep my diagnosis quiet except for family and very close friends. Even if I had wanted to tell people about it, I wouldn’t know where to begin. I found out that the effects on epilepsy patients can vary widely. So, having but one seizure a year seemed like I had lucked out.
Things changed, when I was 24, in March 2014. I suffered a pretty severe grand mal at work. I had felt off throughout the morning, but I had chalked it up to too-little sleep and the strain of a new career. I woke up on the floor of the bathroom in my office. When I collapsed in the bathroom, I hit my head on the edge of the sink and suffered a pretty serious concussion. Since that date, my seizures have been uncontrolled. I experience 30-40 myoclonic jerks per day, 2 or 3 grand mal seizures per month, and have begun to experience absence seizures, which is something I never suffered from previously. Working with my neurologist we have attempted numerous medications to help reduce the severity and frequently of my seizures. Unfortunately, we haven’t been able to control them yet.
Epilepsy affects your life in so many ways. During the first year of my niece’s life I avoided holding her out of fear that I would have a seizure and drop her. I’m sure this is probably the first time that my brother and sister-in-law are reading this. For that reason, I apologize.
I have always wanted to be a father I’d love to coach my child’s hockey, lacrosse, or baseball team. The fear that I suffered with regards to my niece manifest itself again when my wife and I discussed the possibility of having children. It delayed our plans for a family. But, thankfully I have started to get over this fear. I would much rather be a father suffering from epilepsy than not be a father at all.
My wife Brittany and I moved to Grey County approximately 3 years ago. She suggested we look into local events dedicated to epilepsy awareness. It soon became clear that there wasn’t any. The closest being over one hour away. We then took the initiative to research and reach out to Epilepsy Canada in hopes to raise awareness and create an annual event in Grey and Bruce county.
We created Grey/Bruce Epilepsy Awareness on various social media platforms in hopes that our posts would encourage and inspire others, like myself, who are dealing with epilepsy.
Epilepsy Canada is near and dear to my heart because it is dedicated to finding a cure through research.
I believe that funding research for new medications, so that fewer people suffer from uncontrolled seizures is a fantastic mission. If you’re reading this story and it has impacted your life, never hesitate to reach out.
Whether you’re a patient, or a loved one, always remember that you are not alone in this.
CURE Epilepsy and Epilepsy Canada recently entered into a strategic partnership to accelerate scientific progress and drive research forward to find a cure for epilepsy. To celebrate this new partnership, and in honor of Epilepsy Awareness Month in Canada, we speak with Alek and Brittany Stewart, husband and wife advocates for Epilepsy Canada.