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Whitehorse's 'Concussion Cafe' offers support after a brain injury

Lis Pilon suffered a life-changing brain injury 3 years ago, and she's still recovering and adapting. She's now started a support group for others going through something similar.

Lis Pilon says she didn't know where to begin to find help after she was injured in 2016

Lis Pilon's life changed after she hit her head in 2016, and she's since endeavoured to learn new activities that are engaging and challenging, but also 'quieter and more gentle' — such as crocheting. (Submitted by Lis Pilon)

When Lis Pilon slipped on some ice and hit her head in 2016, she didn't realize at first how badly she was injured. She decided to carry on with her day, and headed off to work.

Only later did it become clear that she had suffered a concussion. 

More than three years later, she's still recovering and adapting. And now she's started a support group for other people living with traumatic brain injuries.

"I didn't know where to begin, in Whitehorse," she says about the initial days after her injury. 

"I was referred to physio, and I did some osteopathy, a bunch of different types of therapies, including piano ... and vestibular therapy, ocular therapy — all kinds of different things. There's an impressive list of them."

Pilon says everybody can experience a brain injury differently, so there's no clear and uniform pathway to recovery. It can therefore be difficult for people to find the resources they need.   

"I think we just don't have the wherewithal to know how to get there, or how to use it. So that's one of the goals for me in this group," she said.

According to the advocacy group Brain Injury Canada, about 1.5 million Canadians live with the effects of an acquired brain injury, (Gene J. Puskar/The Associated Press)

The "Concussion Cafe" has been meeting monthly since last spring. Pilon says the meetings are somewhat informal, peer-led discussions about struggles people are having — and progress they're making. She said there's a lot of camaraderie, and the meetings often end on a hopeful note.

"You know, we get to laugh about things together that other people just don't get to understand, and instead of feeling on the outside, we're on the inside of something — so that is special in its own way," she said.

"People are supporting each other. One person speaks at a time, and people are offering whatever support and resources they have to offer in that moment. So that's what the peer-led model means. I'm not a counselor or a social worker, so I'm just there to kind of create the space," Pilon said. 

Tanis Davey, who got a concussion from snowboarding in early 2018, says the space is much needed. She's been to some of Concussion Cafe's gatherings.

"You know, you can have the human connection, and just see other people who are going through the same thing," she said.

Just as valuable to Davey, though, is the group's Facebook page, where people ask questions and share information and experiences — without needing to organize a get-together.

"It can be very exhausting. You know, the meetings are at the end of the day. It's hard to get out, and a lot of people have to pace themselves throughout the day so that they can have the energy to be able to go to these meetings," Davey says.

"It's important to have those options for people, depending where you are in your symptoms and your healing and your recovery." 

'You can't do the things that you used to'

According to the advocacy group Brain Injury Canada, about 1.5 million Canadians live with the affects of an acquired brain injury, and the annual incidence rate is higher than that of multiple sclerosis, HIV/AIDS, spinal cord injury and breast cancer combined.

But Pilon says living with a brain injury can be isolating.

"You can't do the things that you used to be able to do," she said.

"For me, it was dramatically limited where I could walk maybe 50 steps at a crawling pace and then I would have to lie down until I felt well enough to move again. And so imagine how long it takes to get back to saying yes to going on a hike with people."

Pilon hiked the Chilkoot Pass last year. She called it her 'first big, encouraging, exciting, outdoor adventure after [her] head injury.' (Submitted by Lis Pilon)

Part of her recovery, she says, has been learning how to accept and receive support. Often that's meant being open about her experience.

"I think we just don't know how to accommodate invisible injury, and so unless someone speaks up and invites us into that, we can't do that. But when I have done that, people have been all too accommodating."

The Concussion Cafe is not just for people who have been injured. Pilon says their friends and loved ones are also invited, to learn more about what it's like to live with a brain injury and how to best support someone's recovery.

The next meeting is scheduled Thursday evening, upstairs at the Alpine Bakery in Whitehorse.   

Written by Paul Tukker, based on an interview by Elyn Jones

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