BIST (Brain Injury Society of Toronto) was founded in 2004 and has grown to 469 members, as of this week’s Annual General Meeting (AGM). I looked around at the 50? 40? 70? or so members in attendance and was rather surprised. But as the AGM progressed I thought about those growing numbers and BIST’s new focus this past year on fundraising and awareness, as reported by the various committees and 11-member board.
But from the abysmal brain injury care in Ontario, you wouldn’t know there is an epidemic out there.
When I first joined, I had no idea who was on the Board and who volunteered, even though I had a good sense of who were the active members with brain injuries from falls, meningitis, crashes, tumours (no hockey). Today, members of the Board are making a concerted effort to get out to the meetings and making known who they are. And by the end of the evening, it struck me that like the Board, putting ourselves out there where we live and engaging is what we people with brain injuries need to do.
Everyone knows about cancer; breast cancer is the charity du jour. Half the population suffer from heart disease, and the other half know someone who’s had a heart problem. Rick Hansen has done a stellar job of bringing attention to spinal cord damage, and people in wheelchairs are visible representatives (even if that is not the reason why they must use a wheelchair). But unfortunately brain injuries are invisible, though plentiful.
The Brain Injury Association of Canada says “thousands of Canadians incur a traumatic brain injury each year the majority being young adults.”
And so, as usual, we Canadians must look to the US for detailed stats (and that was true even before Prime Minister Stephen Harper nixed the scientifically sound and comprehensive look at our population, the long-form census). Every year, 1.7 million Americans sustain a traumatic brain injury. Using the ten percent rule, that means 170,000 Canadians have their brains damaged each and every year. And like Americans, twice as many men as women.
As I listened to the reports at the AGM, I thought how daunting the task and how needed to make people aware of brain injury and its devastating effects on the injured. Hockey fans are becoming aware, but only as it applies to hockey players and with incomplete understanding of its lifelong effects.
Sidney Crosby appeared recently with his doctors to talk about his concussion and their expert opinion that when he is one hundred percent better, it will be like he hadn’t had a concussion, that his risk of another concussion will be back to what it was before his two.
How can they know that? There is no technology that can look at the brain in such detail so as to know the brain matter is one hundred percent healed and regrown, that there are zero changes in neuronal metabolism and structure.
The science is so new and still in the dark ages, relative to heart disease or cancer treatment, that to say we know with certainty the future and the risk is full of hubris. But then I’ve discovered too many doctors, particularly neurologists, are like that — think they know it all in the face of great ignorance, think they recognize brain injuries when the cognitive ones zip right over their heads — and so why would the population be any more knowledgeable?
Researchers are finding that people who have traumatic brain injury have a higher risk of Alzheimer’s, Parkinsons, and so on. Yet they cannot say if the long-term effects of brain injuries are different in people like me who’ve had active treatment for cognitive deficits. But to assume not is a dreamy, potentially dangerous assumption.
I’ve met people who’ve experienced bad bangs to the head but with no broken skull, maybe only temporary unconsciousness, which they’d shrugged off and if they saw a doc, told it’s just a concussion, watch for a couple of days, then should be fine. Yet when they hear about some of my difficuties, they go, “hey, I have that too.” They always thought whatever “that” was was normal. It isn’t. I never had these injury-related issues pre-car crash. Most people don’t. Yet they had an impact on these people’s lives, and because they never made the connection, they didn’t understand the problem, never mind how to heal it and improve their lives.
It doesn’t help that even if you recognize you need to see someone about it, you can’t in Ontario because of lack of funding for neuropsychiatrists, no funding for psychologists who are on the forefront of active treatments, and severe cutbacks to community care. When no one knows about brain injuries, except as hockey concussions, why would the government fund adequate care?
Crosby and his docs have presented his concussion as healable as a simple broken leg, just takes longer. Even when concussions are recognized as real injuries with bad effects on the brain, they’re still represented as happening only to hockey players and having no lasting effects, thus no big deal.
Yes, the AGM theme is right: we need more awareness to stop injuries, to have access to good treatment, and to save the lives of hundreds of thousands of the walking wounded.