(Edited to add the link to the radio interview I did today with David Kirton CKOM: Listen here)
Today, March 26th, is International Epilepsy Awareness Day. We wear purple to support those affected by epilepsy. Approximately 300,000 Canadians have epilepsy. 1 in 26 people will be diagnosed with epilepsy in their lifetime.
I am one of them.
I was diagnosed with epilepsy almost a year ago. Ask me when I accepted that I have epilepsy and I would say very recently, and I’m still getting there.
Each day in Canada, an average of 42 people in Canada learn they have epilepsy. Epilepsy is a physical condition characterized by sudden, brief changes in how the brain works. It is a symptom of a neurological disorder – a disorder that affects the brain and shows itself in the form of seizures.
Due to the stigma surrounding epilepsy and the prejudice with which society has historically treated people with epilepsy, many with the disorder are reluctant to admit it or to seek treatment. So, the prevalence of epilepsy is likely much higher.
I 100% agree with that statement and am positive there are many people in your daily life, and even many celebrities and people in the news who have this disorder but choose not to share it. I was one of them, with only a few people outside of my family made aware.
I didn’t want epilepsy to make you look at me different. To treat me differently or worry I’m going to seize in front of you. Or wonder how I “got it” and if it is contagious (my epilepsy is idiopathic, there’s no known reason why I have epilepsy and no, it’s not contagious).
My diagnosis is nocturnal epilepsy, meaning I have seizures in my sleep and am completely unaware of them. It’s Kirk – my husband, my best friend, and now my caretaker – who has been there for them, rubbed my back, wiped my face, and then gently explained it to me the following morning.
After a seizure, I need to sleep. A lot. And I’m generally pretty tired, sore (think of every muscle in your body tensing and releasing…it’s like a full body gym workout, followed by being run over by a truck feeling) and sad. And then, after about a week of recovery, I am back to my new normal. My memory is affected. My confidence has taken a big hit, and my anxiety is flourishing. I am a girl that thrives on control and organization and this has turned my life upside down.
I have some memory loss. In the summer while I was being diagnosed, my driver’s license was suspended for a few months until my doctors determined WTF was going on with me. For a long time I was scared to run alone (which is why my first 5K in September was even more of a big deal). I did perhaps too much Googling and scared myself.
But. I’m here. And I’m fighting. I have faith in my neurologist and healthcare team, and am starting a new medication that I am hopeful will take away my seizures forever. People with epilepsy can and do live seizure free lives with medication. It’s just that you don’t hear about them because of it (again back to those statistics!)
I am going to be one of them.
So, why share now? Because I want you to know. One-third of people with epilepsy experience depression and anxiety. People with epilepsy are also 22 percent more likely to die by suicide than the general population.
I need you to know, I need people with epilepsy and other health conditions to know, that there are people like me out there too. I’m human. I cry and I get scared and I definitely get angry and feel the “why me” sadness. But I’m also feisty as hell and intend to live a pretty amazing life for my kids. To show them how nothing will keep me down. I suppose I’ve found my cause.