“I didn’t realize that we could possibly die from a seizure”

Louise’s brother Jack returned home to Cornwall for a cousin’s wedding. They had a blast at the wedding and visiting old friends. By Sunday night Jack died from a seizure. It rocked Louise’s world. “I didn’t know that we could possibly pass from a seizure.”

Like Jack, Louise has epilepsy. Her brother’s death was a wakeup call.

Talking about having epilepsy helped Louise overcome survivor’s guilt. It gave her a purpose to help make sense of why she was here when Jack was gone.

“Jack was the life of the party. He lit up the room when he walked in,” Louise remembers, “He had a thunderous laugh, hugged everyone. Loved to dance, loved to be silly. He was very caring, very funny, very charming. He was one of my best friends.”

When Jack developed epilepsy in his twenties, he had a hard time accepting it. According to Louise, “he didn’t take it very seriously, sadly. Didn’t take proper care of himself.” For example, he would forget to take his medication and didn’t seem too concerned about it.

Louise understood where Jack was coming from. She often felt ashamed of her epilepsy; she didn’t like to talk about it or her symptoms. Instead, she hid it.

Once Louise lost her beloved brother, that all changed. She started to take better care of herself so her two little girls, who were three and five at the time, wouldn’t have to grow up without a mom. “I exercised more. I spoke about it more. I stopped hiding it.” It was talking about having epilepsy that helped Louise overcome survivor’s guilt. It gave her a purpose to help make sense of why she was here when Jack was gone.

Part of that journey involves her volunteer work with Epilepsy Ottawa where Louise is a peer mentor for Epilepsy Connect Ottawa and a co-facilitator for UPLIFT – a program to help people with epilepsy and depression or anxiety. Louise thinks that having access to these kinds of programs when they were young could have made it easier for her and Jack to accept living with epilepsy.

It’s been twenty years since Jack passed away, or as Louise calls it “twenty years of still loving Jack.” Whether it’s the fond memory of Jack dancing at her wedding or in his influence to improve the lives of others with epilepsy, as Louise says, “I still carry him with me.”

You can help people with epilepsy like Louise and Jack.

With your support, programs like UPLIFT and Epilepsy Connect Ottawa will remain free and accessible in Ottawa and the surrounding rural regions.