June is brain injury awareness month in Canada. Other nations use other months to raise awareness about brain injury. But what does raising awareness mean? Do we simply want people to hear about it over their morning coffee, then go on about their lives, oblivious to the suffering all around them? Or do we want to change the lives of people with brain injury for the better so that they can actually heal from their injuries, live within society, regain their dreams and families?
Back in 1980, a young man who had survived osteogenic sarcoma declared he would run across Canada to raise awareness for cancer. Back then cancer was seen as fatal, a shameful disease that people didn’t talk about much or they whispered sympathies behind closed doors for anyone caught with having grown a tumour. Children with cancer would, of course, die tragically, as everyone knew. A cure was not possible. Talking about the disease and advances in treatment was restricted to those with it or within medical circles. And then Terry Fox dipped his artificial right leg in the cold Atlantic waters off of Newfoundland, Canada and set off in his quintessential one-good-leg, one-prosthetic-leg hop to run a marathon-a-day across the second-largest country in the world.
Not many noticed his leg dip. But as he ran day after day on the highways of Canada, people began to pay attention. There was no social media, so it was word of mouth and local papers (which still existed back then) that spread the news of Fox’s Marathon of Hope.
Hope . . .
And the one-legged hop of a young man braving to put a public face on a dread disease.
Those are what caught the media’s attention so that by the time he hit Toronto, Canada’s largest city, so many people knew about his mission that crowds swallowed him up and overflowed his fundraising coffers. They cheered him on as he exited the city and turned north.
Cancer snuck into his Marathon of Hope and suffocated his dream.
People had seen that bone cancer had taken his leg. They had assumed he was alright and was awfully brave for running a marathon a day. But when cancer came back and crawled into his lungs, it exploded the myth that people were fine if they continued to live after a cancer diagnosis.
Canada was invested in the life of this man; heartbroken when cancer stole his dream from him; mourned when he died. Canada’s collective emotion drove people to talk about cancer out loud; to donate and fundraise for a cure through Terry Fox runs. Funds pouring in fired up researchers and clinicians to search harder for a cure and to treat people kinder and more empathetically; tangible awareness inspired others to provide support and services to boost morale during dreadful cancer treatments. When someone received a cancer diagnosis, friends, family, neighbours now knew what that meant and rallied around to provide lifts to appointments, hot meals, coffee time. Other countries heard about Fox, and Terry Fox runs sprouted up all over the world. Some cancers are now curable. Children no longer automatically die.
No one with cancer is ostracized anymore.
None of this is true for people with brain injury. They remain in the shadows; mainstream researchers and clinicians talk about strategies and acceptance, not curable treatments; those who understand neuroplasticity and have developed effective treatments remain unknown or dismissed as shams; family and friends are given permission to abandon their injured loved one. And no one is expected to rally around for the years it currently takes to recover and the decades of living within its constricting walls.
Shame and disgust sideline people with brain injury into day programs — keep them busy so that they won’t notice society wants nothing to do with them. Shame and disgust lead so-called experts to judge injury-driven behaviours instead of treating the neurons so that the person can be themself again. Shame and disgust lead most to avoid reading up about it, to avoid the injured person, and to deny the need to accommodate.
We talk good game about concussion in athletes and troops, but we don’t change our attitude to fund treatments, to talk out loud about how the brain affects every single part of you and so every single part of you from your thoughts to your heart can be injured and so need treatment. Talk is solely about the mysterious CTE or PCS — aka untreated brain injury — and donating concussed brains to science.
We need a Terry Fox-type ignition for brain injury.
Brain injury awareness months just aren’t cutting it. What tour de force will ignite a nation, spread awareness of brain injury around the globe to finally change lives for the better?