Making the invisible visible

Meet real Canadians living with brain injury

We spoke to real Canadians living with brain injuries so we could tell their stories. Driven by our commitment to ensuring the research we fund leads to real impact for Canadians living with brain conditions, Brain Canada is proud to present the following stories from nine survivors of brain injury.

Brain injuries are diverse, complicated, and for many, life-altering. Nearly every brain injury survivor we talked to told us the same thing: they felt invisible.

Though some survivors carry external signs of their injury, many of the most common symptoms – from language and memory loss to cognitive fatigue, environmental sensitivities, and splitting headaches – can be difficult for survivors to articulate and can remain hidden from others. In addition, nearly two-thirds of those with the worst brain injuries deal with depression or other mental health challenges in the years following an injury.

According to Brain Injury Canada, nearly four percent of Canadians – or more than 1.5 million people – are living with a brain injury. These are classified as “traumatic” when they come from a physical injury to the head, and “acquired” when the result of a stroke or other illness. The majority of brain injuries are the results of accidents or illness, but many people each year are injured from failed suicide attempts.

Many felt like the severity of their injury was recognized too late, stunting their recovery, or noted months- or years-long gaps in getting connected to resources. Nearly everyone said they had to do their own research – many while dealing with debilitating cognitive side effects – to self-advocate for the care they needed.

Seeing The Invisible Disability

After suffering a traumatic brain injury (TBI) in 2012, Rob Staffen founded the Brain & Mind Matters Community Fund to support brain injury charities, navigating challenges like cognitive fatigue and personality changes, and emphasizing the need for early support and long-term recovery strategies for TBI survivors.

You Will Never Be The Same Person Again

After a car accident led to a traumatic brain injury, Barb Aldan struggled with severe cognitive and emotional changes, but with the support of friends and a mentor, she adapted to her new self and found fulfillment in finishing a quilt

The Incredible Power of Neuroplasticity

Former ultramarathoner Stéphane Rouleau, who suffered a stroke from a carotid dissection and was initially told he would never walk again, has made a remarkable recovery through determination, neuroplasticity, and a focus on health.

A Lonely Path That Impacts Everyone

Many of the brain injury survivors we talked to noted how lonely the experience was. “You are on such an individual journey,” says Nicole Hagley, who survived a biking accident that left her with a life-altering TBI in July 2020.

From Injury to Advocacy

After losing nearly everything after surviving a spontaneous brain bleed, Bob Murphy is now an advocate for those on disability and experiencing food scarcity.

“I Am Not My TBI”

After a severe TBI from a bike accident in 2015 exacerbated by previous head injuries, Nathalie faced significant physical and emotional challenges, leading to long-term disability and medical retirement.

A Soccer Player Turned Brain Health Advocate

Jay Randhawa suffered a head injury during a soccer game that ended his career. “When you face adversity and opposition, you have two choices,” he says. “Stay down and give up or get up and fight!”

The Crisis For Caregivers

Susan Marsh, whose daughter suffered a catastrophic TBI, is adamant about preserving the dignity of those with invisible disabilities. “Just because people have disabilities doesn’t allow the able-bodied to tell somebody what they can and cannot do.”

Support, Attitude, Motivation

Peter Kyriakides, who survived a life-threatening trauma to the brain, sees a desperate need for more mentors and coaches for patients. He wonders if paying survivors to mentor others could fill gaps in the system

Engaging Survivors To Improve Research

Thanks to the generous support of the Galati Family and their gift of $850,000, Brain Canada is introducing a pioneering project on traumatic brain injury (TBI) to ground its funded research in the needs of diverse stakeholders.

“For people with a brain injury, there is no map,” says Dr. Anneliese Poetz, Senior Program Manager, Knowledge Mobilization for Social Innovation, who is leading the effort at Brain Canada. “To achieve research impact, you need to put the time and effort into finding out what the actual problems and priorities are.

“We’re encouraging research outcomes that directly help people and can better improve practice and policy,” Poetz says. “What we learn from stakeholders in this process will be used to inform the research agenda at Brain Canada and beyond well into the future. This approach is a significant step forward in improving patient lives with targeted research. Things should be easier for people, not harder.

Led by Matthew Galati, a Canadian physician and brain injury survivor, the Galati family founded Brain Changes Initiative. Together, Brain Changes Initiative and Brain Canada are partnering to double their impact and support bold brain research in TBI. A new funding program will be announced later this year, informed by the input and feedback from people living with brain injury.

“We are energized by this new approach,” says Viviane Poupon, President and CEO of Brain Canada. “Engaging stakeholders in this way aligns with Brain Canada’s mission to advance a better understanding of the brain – and to improve the lives of Canadians directly affected by brain disease or injury.”

Offering Hope To Others

The people we talked to are using their own experience to help others. Many, like Rob, Barb and Peter, have served as mentors for brain injury patients and their families. Bob is on the West Park Hospital Patient Family Advisory Committee, making sure patient voices become part of the decision-making process, and the Brain Injury Society of Toronto Advisory and Advocacy Committee. Nicole, an educator, is using her personal experience to help influence and change the policies and expectations for students and staff coming into school after acquiring a concussion or traumatic brain injury. And of course, everyone who shared their stories here and through other brain injury awareness platforms are bringing hope and visibility to brain injuries. Thank you.