Epilepsy manifests itself differently for every person. There are lots of different types of seizures. Every seizure is different. That can be different because of the type of seizure but also the conditions. I could have the exact same type of seizure but it would be different whether I was in the shower or in bed. Whether I was out for dinner or watching a movie on the couch. Whether I was alone or with my husband, a relative or a friend. The seizures would be different if I was in bed on a lazy weekend, or if it was in the morning before I had committed to plans. If I was in my bed at home or at my parents house. If I was in the bed of a private hotel room or a hostel dormitory.
When I first started running in races, I only registered for ones that were under $20. It meant I could register and goal-set, but in the circumstance that I couldn’t attend, it wasn’t the end of the world. It took a lot of the pressure off and I was less stressed about missing the race. Over time as my epilepsy became more stable, I began registering for more expensive races. Some of the race weekends that I have attended and have registered for have been nearly $500 (of course, part of that is the USD-CAD exchange rate).
When I go to sleep the night before the race, I do not know how I will be in the morning. Whether the registration was $20 or $200, I cannot rely on my brain to be there for me in the morning. I can trust in my body. I can trust that my running and cross training has my body prepared for the race ahead of me. When I run, I trust entirely in my legs to get me through it, whether its 5km or a half marathon. I am ready, physically prepared, to run the race. When I wake up the morning of those races, no matter how physically prepared I am, I cannot trust that my brain will be there for me. I cannot trust my brain.
Because every seizure is different, if it happens, I don’t know whether I may be able to get up and go, or if I will be incapacitated and stuck in bed all day. I might be able to have the seizure, and then go run and finish the race. To date, I haven’t yet missed a race that I’ve registered for (knock on wood), but I have had seizures while running and been unable to finish.
If I am going to be writing about this, I would rather write it in the context of races. It’s easier than to think about than more serious times. Events such as my wedding. A lot of people traveled to be there. I knew, when I was planning the wedding, that there could always be the chance that it might not be able to happen. The morning of that day, of the biggest event I had ever looked forward to, I could potentially have a seizure and not be able to attend. It was something that I knew, that my husband knew, that every guest knew. We were all aware of it. Yet, they still travelled to be there. I wanted to be there, and I was so afraid because I couldn’t trust my brain. I was very fortunate on that day, for so many reasons, beginning in the morning because my brain was there for me.
The brain. We have so much power in it. Our personalities, our abilities, our choices. Everything. The brain is both the source of our mental strength and the foundation for our physical strength. If we do anything with our bodies, that decision has to first be made with our mind. In a motivational context, if we set our minds to doing something, we can accomplish anything. That is easier said than done.
Being epileptic means that my brain sometimes does its own thing. It means that I do not always have the control over my body the way that neuro-typical people do. I can be as prepared as I want to, to race, get married, or just to simply wake up and have a normal day. It doesn’t matter how organized I am, how much training I have done or how planned everything is. I do not always have the basic control to decide what will happen in my day, or how my day will start. Some mornings are completely unremarkable. Some mornings I have seizures, and some mornings I just don’t feel “right”.
Not feeling “right” in my own brain is not a reason to avoid looking forward. Not trusting my brain is not a reason. It could be an excuse. It is not a good one. I may not be able to trust my brain, but that is not the end of the world. I have epilepsy and there will never be a time when I can make a plan and know that everything will happen the way I want. Epilepsy is both outside my control and literally inside me. I cannot change it. But…
That is the only thing I cannot do.