When I got the idea for the art project, I was at a support group gathering and I found out someone else there was an artist. The idea just came to me—I want to curate and participate in an exhibition that is exclusively for artists that have epilepsy.
I want someone to walk into my exhibition and leave still thinking about it. It's up to the artist to decide how much they want to share of their epilepsy journey - if they even want to share their journey. As for the theme, I chose purple, for purple day. And they can do anything they want with it.
Personally, I want to do something new for this exhibition. For me this is a bit of a challenge: to sit in front of canvas and say ‘OK, how would I approach purple’. I want it to be related to epilepsy, and to have meaning. That's what I want.
When I’m having a seizure, I sort of go to a different place and I don't see my surroundings. It's like I’m running, but at the same time feeling suffocated and I have trouble breathing. But there's always a vision of person in my mind and I'm asking them to hold my hand and they're not. I think that might be carried over from the experiences I’ve had of people standing around and not helping me during past seizures.
If someone can be holding my hand during a seizure, it helps me distinguish what’s real and what isn’t; sometimes that's all it takes to help ground me.
I did a storyboard once about seizures, it was very interesting for me to illustrate that feeling of being suffocated. How do you illustrate that? On the last page I’d shown all the feelings that I had after, like the guilt and anger. My teacher came to me and said “this is amazing - the way that you describe it. You know, I never knew. ” So I knew that I had had an impact and she had gained insight into what it was like to have a seizure.
When some people think epilepsy, they think seizures and the whole shaking of the body and that’s all. My hope is for my art and this exhibition to have impact. For people to walk in the room, see these works of art and then when they find out that the artists all have epilepsy, it could change someone's perception.
If you are an artist, and would like to receive more information about this opportunity, please contact artistswithepilepsy@
gmail.com or Katie@ epilepsytoronto.org. Visit www.brainwaves.online for more information.
*stories have been condensed and edited