Brain Injury Awareness Month takes place every June. The awareness campaign aims to bring awareness to the cause of brain injury and educate people about brain injury.
COLD LAKE – What would it be like to awaken in a world where your own reflection is almost a stranger?
It was Dec. 21, 2017. Cynthia Carson just returned to work after a year-long maternity leave, when her memory cut out like a poorly edited film - right after she got up from her desk.
One moment, she stood with some purpose in mind, and the next? Darkness.
She didn’t know how long she had been unconscious, but it had definitely been quite a few days. When she woke up, she felt as if the whole world shouted at her. Even when people spoke in hushed tones, her head spun faster - out of control.
She kept drifting in and out of consciousness, not knowing whether she was waking up or passing out. “It’s really hard to describe,” she explains.
“Everybody talks about the light,” but for her, there was no light. “It was black... extra black.”
And in that blackness were strange, floating shapes. She believes that perhaps those shapes were the doctors or the nurses coming to check on her.
Severe traumatic brain injury - that’s what the doctors said.
She was told there was a fall, but she can't remember a thing. She was like a detective, investigating her own life, but all the clues were missing.
Before Dec. 21, 2017, she wore many hats. The go-to person, she juggled accounting, staff training, and business continuity plans. She thrived creating order out of disorder.
But in the blink of an eye, everything changed.
“I almost died.”
Carson says brain injuries don’t just mess with your head, they turn your world upside down.
Her own body forgot how to regulate her temperature. If it was too hot, she would pass out. Too cold? And she would shiver uncontrollably.
Carson’s world became a landmine of “cannots.” From the simple pleasures of walking in a mall, picking up her kid on a hot summer day, enjoying the sunshine at the park or the beach - the bright lights, the noise, the endless stimulation - it was all too much.
At times, on a hot day, she has to use a cooling vest. “It looks funny when you wear it. I cannot tell you the amount of times people made fun of me because I lost my SWAT team,” she says with a chuckle.
Creating art
Carson’s recollection paused when an attendant at Beantrees Cafe in Cold Lake checked on her, to see if everything was alright. She looked at the art-filled canvasses on the table, admiring Carson’s work.
Art - that’s how Carson learned to process her trauma. She uses art as a form of rehabilitation and trauma processing.
“I didn’t mean to make art,” she says. She started to make art just to work on her cognitive function.
It began when she noticed a piece of leather art hanging in his brother’s apartment. And she remembered having a bunch of leather at home when her husband wanted a pair of moccasins. “Because he was Métis,” she says.
She began to cut up her stock of leathers and tried to make pictures out of them. She did this probably five minutes at a time. “It helped me with my concentration, re-learn my motor skills.”
She had to re-learn a lot, like putting jam on a piece of toast.
But art helped her re-learn many things, “one tiny, little minute at a time,” she says. They are tiny victories strung together in a fragile chain.
“It soon became something I could do in a world where there are many things I could not do.”
She adds, “Art is a thing that I can do. Because you need to find what you can in a world of can’ts.”
Every piece she created and continues to create carries a story – a meaning. Carson is now a mixed media artist.
Version 2.0
Without proper therapy or rehab, Carson had to navigate her new path mostly alone. She liked to read or listen to audiobooks. Some were personal development books - where some proved to be “complete garbage,” she says.
But even among the pages of drivel, she found sense in one of them. Is she really as helpless as she felt? This tiny seed of doubt grew into resilience.
Ultimately, she had to accept what happened.
“Once you learn to accept that, there is no going back,” she says. “No matter how much you want to... you can’t turn back time. You can’t undo what happened.”
And, “Eventually, I accepted that there’s a [Cynthia Carson] 2.0.”
Mark St. Germaine agrees with Carson. St. Germaine is a community living service support worker with the St. Paul Abilities Network (SPAN), a non-profit based in St. Paul, working under SPAN’s Alberta Brain Injury Network Program. His work involves assisting Carson with goals or skills she wants to develop and helping her become more independent.
“A 2.0 version... that’s also what I always tell people when I first meet them,” says St. Germaine, explaining that people who may have suffered from a traumatic brain injury have this idea that their condition will get better, or they will go back to their old self.
But traumatic brain injury may not work in that way, he says. Instead, “let’s look at it as a 2.0 version of yourself.” It’s a version that does something different than what they did in the past.
It does not change the fact that, “You’re still awesome,” says St. Germaine with a glance to Carson.
It’s about accepting your new self and embracing that change in you, he says.
Friends and family
Carson says she acknowledges that many people, following their traumatic brain injury, lose friends. They walk away. But she’s grateful to have a strong support system in place – her family and friends.
“Anybody who was a close friend of mine is still a close friend to me even though I’m 2.0,” she says.
But making new friends can sometime be very difficult. If she makes new friends, her memories betray her. She forgets their faces. When they wave, for example, she’s left confused, wondering who that person may be.
But it’s okay. She has learned to move on.
Mental Illness
Traumatic brain injury is not mental illness, says Carson. But it is an invisible disability.
St. Germaine agrees. “It doesn't matter who you are. Young or old, it doesn’t matter,” brain injury does not discriminate.
Carson says people with brain injury, while the extent may vary, go through many challenges. They may go into a complete survival mode, where they are able to realize the strength of their bodies and minds.
“Because you have no choice but to keep going. The only alternative is to turn around and give up. But you have to keep going... find the strength to keep going,” she says.
And it’s not always going to be easy. Some days may be better than others. “And that’s okay,” she says.
“And you know what, if you never go through this, I’m very happy for you,” adds Carson, pausing for a moment. “I’m very happy if it never ever happens to anybody else... but it will.”
This is why Carson encourages more awareness around brain injury. It can happen to anybody, and they need support.
