Brain injury awareness month in June has come and gone, but the challenges faced by survivors will persist year-round.
After interviewing 11 clients of the Victoria Brain Injury Society, a non-profit organization that provides programs and services to the brain injured, it is clear to me that 30 days each year is not nearly enough time to address the misunderstanding surrounding this serious health issue.
Failure to adequately respond to this problem has dire consequences not just for the health care of those affected, but for society in general. Statistical research has shown that higher rates of incarceration, homelessness, substance abuse, and poverty are all linked to brain injury.
Each client I spoke with had a unique story to tell, but a common thread running through every interview was the stigma they experienced.
Lucille, who has sustained multiple head injuries, expressed frustration at the way some people “take advantage of her.” Like many other survivors, Lucille cannot always process information as quickly as the abled and has trouble getting her thoughts out.
Sadly, some people take this as an opportunity to mistreat rather than help her. “It feels like I’m prey, and they’re preying.”
Deemed an “invisible injury,” the symptoms of concussion, stroke, and other acquired brain injuries (ABIs) often go unnoticed by the average person.
Trouble with memory, depth perception, processing language, and sensitivity to light, sounds, colours, and even movement can all manifest in a visceral way for survivors but are not always outwardly apparent.
In her interview, Marcia explained how even going to the grocery store is a daunting task.
“I just got so overwhelmed … it felt like the world was closing in around me.” A simple chore for the abled can become a stressful and “nauseating” experience.
Lacking any obvious signifiers, Marcia said that people are not always patient with her when, for example, she holds up the checkout line because she’s having trouble finding her bank card.
Head injuries can be downplayed or dismissed by the abled world because the symptoms are not easily identifiable.
Basic courtesies that are offered freely to those with visible injuries are often withheld to those with ABIs.
Alan, who had a stroke at 51, began carrying a cane primarily for this reason.
“People don’t give you much slack if you’re slow. The cane is a signal to other people that I don’t walk so well.”
However, not everyone with brain injury requires a cane, and many survivors do not have an efficient way of letting others know about their injury.
Krista decided to get a therapy dog to both cope with her symptoms and as way to let people know about her injury.
Her condo building, however, did not allow pets. After explaining her need for the animal, one of the strata members told Krista to “stop playing the victim.”
She was understandably furious. Like so many others, a big struggle for Krista has been trying to convince people of the massive impact her brain injury has had on her physical and mental well-being.
“I tell people I have a brain injury and they say, ‘well you look fine.’ It’s so invalidating.”
For survivors, the prospect of asking for help and having to explain their injury is distressing. Brain injury survivors don’t want special treatment, and they certainly don’t want to play the victim.
They want the same level of compassion offered to those with an obvious injury or ailment.
They also want to challenge the notion that they are inferior or incompetent.
Chandar, a Ph.D recipient, published author, and historian who had a stroke shortly after he was born, had this to say: “We don’t want to be looked at any differently, we do things are own way, but we get the stuff done that we need to get done. All we ask is for some real help and empathy.”
One way to help is by reducing the stigma experienced by brain injury survivors by increasing awareness, and not just for one month a year.
Coordinated educational programs in schools, workplaces, and the community could have a positive impact on the level of understanding around brain injury. The aim would be to dispel myths and misconceptions about brain injury and challenge the stereotypes about brain injury survivors.
These programs will not teach people to see something that is invisible, but instead will serve as a reminder that, as Robin Williams said:
“Everyone you meet is fighting a battle you know nothing about. Be kind. Always.”
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