For 30 years, Remi Rivard's kept a big part of himself hidden.
The 42-year-old was diagnosed with epilepsy at 12. He's kept it a secret from most people, until now.
“I don’t want to be alone anymore, I’m sick of being alone. I want support, I’m sick of sitting at home doing nothing; I want people to accept me. What I have, I don’t want to be a defective part for them. Once I’m done this I’m going to go see my firefighters, my brothers and sisters, and I’m going to tell them,” said Rivard, who is originally from Timmins and lives in Hearst right now.
While this week is the first time sharing his story, it's not the last.
He'll be talking at the 3rd Annual Hoe-Down for Epilepsy at The Victory Tavern on Nov. 30.
It's organized by Jessica Palubiskie, who went public with her story about living with epilepsy before the first fundraiser in 2017.
Rivard and Palubiskie have known each other for nearly 20 years.
They were reconnected through the Timmins Seizure and Brain Injury Centre, and only recently discovered how similar their stories are.
"Twenty years later I find out she has epilepsy and I didn’t even know it, and I didn’t tell her nothing either. It’s just the timing, it’s just impeccable,” he said.
According to Epilepsy Ontario, epilepsy is a "common brain disorder characterized by recurrent seizures" that can start at any age.
Rivard's story starts when he had an accident as a kid and hit his head on pavement. Shortly after he started having seizures.
While there have been ups and downs in his journey, today he takes one pill a day for it and maintains a healthy lifestyle. His last seizure was in 1999, and that's when he started changing his life for the better.
It's arm wrestling that he said saved his life.
“I started that and then I went into MMA, had more confidence in myself and then finally the big picture, now I’m a full, active firefighter volunteer,” he said.
Through all the successes, he's kept his epilepsy hidden from most people. He's afraid of how people will react.
“I prevent myself from going to somebody and say ‘I have this’ and I don’t want to beg, can you give me a shoulder to lean on. I’ve been doing it since I was 12, but people don’t understand,” he said.
Palubiskie can relate.
“It’s the same feeling I had. When I came out I was scared of the reaction that I’d have, and for me the reaction was amazing,” she said.
The secrecy about seizures, she said, is because people treat you differently.
“A lot of people don’t want to hire somebody with special needs and if they know you could have a seizure...they feel it’s a liability, which it isn’t. They don’t know what to do,” she said.
She doesn't regret sharing her story.
“It was the best thing I’ve ever done. I never knew how much support I’ve had around me and...how much they would support me during all of it,” she said.
The 3rd Annual Hoe-Down for Epilepsy is once again supporting the Timmins Seizure and Brain Injury Centre.
The pre-party is Nov. 30 from 3 p.m. to 7 p.m., with the main event from 9 p.m. to 1 a.m.
Tickets are $5 in advance or $10 at the door.
There will be live music, and games, the jail is going back up, and there are prizes for the best cowboy and cowgirl costumes.
“The first year I did it, Ed Geisler shaved his beard so he’ll be doing that for donations again. And whoever does donate towards that, their name goes into a draw to do the first cut for Ed’s beard,” she said, adding he hasn't shaved since the last event.
Last year's party raised $2,200 for the centre, and Palubiskie is hoping to surpass that this year.
To donate or for more information, call Palubiskie at 705-363-7035 or contact The Victory Tavern on Facebook.
