When I was a kid, I used to call the auras that occurred before a seizure my "storytelling seizures."
No idea where that came from - it was just something my Grade 3 teacher told my mom.
But now I'm appropriating it into my 2023 winter goal: to solo-bike across the southern tier of the United States and collaborate with people with epilepsy along the way. I hope to gather their stories, from powerful to trivial, adversity to triumph and put together a series of films and writeups for every step along the way. The pursuit is to learn about the grand diversity of epilepsy and the unique challenges faced by those impacted by the disorder, including friends and family.
I will also be fundraising for two epilepsy-focused NGOs, one based in British Columbia and the other servicing the United States. I stand by these NGOs as they work directly with adults diagnosed with epilepsy and make efforts toward educating various public groups, with the intention of decreasing stigma and fear and increasing acceptance. I not only welcome but wholly encourage any contribution to this project.
If you have had a seizure, have been diagnosed with epilepsy, have been cleared of epilepsy, employ someone with epilepsy, or are someone who is otherwise affected by a seizure disorder - such as friends and family of someone with epilepsy - please reach out, anonymously or otherwise. Perhaps we can have a discussion on the phone or in person, or maybe you want to write a piece to be included on this site... That's what all this is about: human connection and understanding. Artwork and music pieces are also welcome!
Much Love, Kelly