When my husband began having seizures several years ago, one of the things that struck me was the reaction of people around him. Certainly there were almost always people who wanted to help, but there were many more who were horrified by what was happening. Their fear inserted itself into the situation like a physical presence.
Last spring, I joined my daughter Journey's fifth grade class as a volunteer on her field trip. I had the pleasure of watching a classmate approach Journey who was taking photos of a museum exhibit. The classmate suggested she turn off the camera flash; he was concerned that it could trigger one of her seizures. I was overcome with pride and appreciation for the caring, supportive community we have created in partnership with the school administration.
My daughter Journey will not live on a shelf. We may not be able to protect her from every seizure risk and she may incur some injuries now and then, but she will live life fully and share diverse experiences as a result of the collaborative efforts of her family, friends, educational team, and community.
This suggests that simply shifting our language from "epileptic" to "person with epilepsy" can alter the way others think about those living with epilepsy. Employers, colleagues, teachers, and peers may think of their friends differently if we all start referring to "people with epilepsy" instead of "epileptics."
It took two years after being diagnosed with epilepsy for me to reach the point where I wanted to talk about it. Two years of struggling to try and understand what the condition was and how it was going to affect my overall health. Two years of discovering the impact it would have on my everyday life. Two years of being afraid that other people's perception of me was going to be different. The difference in my case was that there were many others, beyond friends and family, who already knew I was dealing with a medical condition. They had seen me experience a seizure before anyone had figured out what it was. There were a lot of questions. I just wasn't prepared to answer them yet.
Can you imagine suddenly waking up in the middle of the street or at your place of work with no idea how you got there? Can you imagine losing your job or people avoiding you because they're scared of you? These are some of the experiences described to me as a volunteer Administration and Support Co-ordinator at Epilepsy Ottawa.
March is Epilepsy Awareness Month, a time when many people with epilepsy share their story to teach people about it and reach out to others with seizures. I'm glad to be telling my story, but this hasn't always been the case. This time last year, I did not want to talk about having epilepsy. I was filled with anger, frustration, and pain.
We have come a long way in understanding epilepsy since the ancient Greeks' interpretation of a seizure as divine intervention. Even still, while many researchers are studying epilepsy, the public largely misunderstands the condition. Here are five things they believe people should know about epilepsy.
It starts with the sensation of a light switch being pulled violently behind my eyes. I lose cognitive control quickly. I can't focus on even a simple task, and I forget what I'm doing while I'm in the middle of doing it. I have epilepsy. As a child no one realized I had been having seizures for many years. Instead, they misread my childhood behaviour as misbehaving.
Movember has made a very important contribution to men's health. But in addition to Movember, November is also Crohn's and Colitis Awareness Month. But most of us probably didn't know that; you can't grow two moustaches at once. Movember, along with a few other of the more fortunate charitable campaigns, is a behemoth. In its success, which is to be commended, Movember leaves a wake of other, less fortunate charities, patients, doctors and researchers. As this trend will inevitably continue to grow, I'm not entirely sure we should be comfortable with that.
Warren used to be a manager of a Sporting Life. Later on, after the fits took over, we'd frequently find Warren sitting on the pavement with a gash to his forehead, or deep cuts on his fingers. These two disparate images were challenging. I wondered what Warren brought to our world; what was his journey all about?