Whether you are a survivor or caregiver to someone with a brain injury, it is sometimes quite difficult to find a confidant that you can feel comfortable talking with when it comes to issues such as the stresses, emotional trauma or everyday hardships that can be inflicted upon one’s life. An individual can run the risk of losing friends, or in some cases, even family members.
Its been over two years since my last concussion, which I got while playing hockey. I still have difficulty focusing and remembering small details. I have anxiety and, at times, I feel down.
Although I no longer have a concussion, I don’t feel exactly the same as I did before my brain injury, and that is exactly what has captivated me for over the past several years as a researcher.
I continually ask myself, why is it that we can’t fully understand what is going on after a concussion? What is the piece of the puzzle we are missing and how do we get people recovered to a point where they can get back to doing what they love without any consequences? How can we find a way to assess concussions that don’t rely on subjective symptom reporting? More importantly, how do we educate people about brain injuries so they make an informed decision?
These are just some of questions that go through my head.
I think most athletes can say they have lied about aches or pains they have had occur in games or practices. Many have played through broken bones, torn or sprained muscles or joints.
This is part of the team-first culture, where blocking shots, taking a hit to make the play, or playing through an injury is idolized. However, there is a huge difference between injuries to the body and injuries and injuries to the brain.
The brain is truly extraordinary. It makes it possible for us to do the things we love, such as communicate, learn, share joy and many other things. How we achieve tasks such as skating, or how we understand situations and make decisions involves complex processes with many thousands of connections, millions of neurons firing, tens of millions support cells and all of this is completed at an incredible speed.
And yet sometimes we treat the brain as just another tool in our body, a sacrifice to the team.
When I think of it from another perspective I realize this is the wrong way to look at it!
The brain is what gives us the team-first attitude, what helps us make the correct decisions, and to achieve specific skills. Without it functioning properly we can not be the best we can be. And this is the perspective I know have taken on when I talk to young athletes who have sustained a mild traumatic brain injury. But is this enough to keep them from playing is yet to be seen.
Recently I became an assistant coach for a competitive female hockey team. One of the players was tripped up and hit her head on the end boards. She came off upset, emotional, in pain and clearly could have sustained a concussion. After the ice clean she came back out and wanted to play. Despite all my knowledge about brain injuries, I found it extremely difficult to tell her she needed to sit out the rest of the game.
It is hard to tell an athlete they can’t go back out there and that they need to rests especially when its all they have known their whole life.
“Get knocked down, get back up.”
“No pain, no gain.”
“Sacrifice your body to win the game.”
But how can we change this? How can we ensure our trainers, who are responsible for pulling the players out of the game, feel comfortable and believe that it is the right decision? Or can we make the athletes realize they need to be more accountable for their own health and long-term development? Maybe it’s the combination of both?
I can’t say I have the answer, but I can touch on some ways to change this problem.
We need mentors, we need people such as Sidney Crosby or Jennifer Botterill speaking about their injuries and what they could have done or should have done to prevent those months of symptoms.
We all know that players are more likely to listen to those who have gone through similar situations, especially when their idols. I can say I probably wouldn’t have thought about the injury any differently if a doctor, teacher came up and told me not to do something or to be honest about the injury. I mean they told me not to play through a torn tendon in my knee in playoffs, which I completely ignored.
Despite the media constantly speaking about concussions, there is a lack of knowledge about the injury, symptoms, possible long term impact, what to do when you have a concussion, and what resources are available.
One example of a recent partnership is between the Greater Toronto Hockey League (GTHL) and Holland Bloorview Kids Rehab Hospital Concussion Centre. This partnership is an example of how leagues are hoping to educate their players, parents, referees and coaches.
The brain is one of the most complex systems in our body, yet there is little time allocated to teaching about the brain, diagnosis, and rehabilitation.
Many medical schools only spend about an hour or so covering concussions. Physiotherapists have limited education on the subject, which is concerning as they deal with many athletes.
We need to develop supports and education for all stakeholders – parents, coaches and trainers.
To summarize, Shireen thinks the subway line renaming, and TTC signage create cognitive and navigational challenges for people living with brain injury, and possibly people living with other kinds of disabilities as well.
Recently I’ve had a chance to visit England and walked through the doors of Headway Essex. Headway is a large organization which provides brain injury care and support throughout the U.K. I came in contact with Headway East London through discovering their art studio website. I discovered Headway Essex through Dr. Carolyn Lemsky, Clinical Director at CHIRS introduced me to Steve Shears, Trainer and Psychotherapist at Headway Essex. Steve kindly showed me the agency and I had a chance to visit and meet the people at Headway.
During my day visit, I had the opportunity to visit BounceAbility – Special Needs Trampoline Centre. Watching people of all physical abilities getting out of their wheelchairs and working on balance, coordination and stretching. There was also added “stealth benefits” (according to Andy Plowright, Service Manager) such as allowing another person to help you with your balance and relying on another person to support you on a moving surface can build trust and re-establish physical and emotional connections with another person. This supportive and trusting relationship is especially important for a person who have experienced physical trauma that have resulted in the head injury.
Visiting the day program and meeting people at Headway was heartwarming. One person showed me his ankle foot orthosis (AFO) brace that is very well made and seems to be protective of sensitive skin areas in the lower extremities. The brace was red and the owner of this brace is proud to be a Manchester United Fan; in Toronto, our AFO brace are uniformly white.
I had a chance to talk about my meditation and art program which hopefully generated some interest in developing meditation and art programming for people at Headway. When it was time to part, I was given several information guides, newsletter and a large Headway t-Shirt. Andy Plowright, Service Manager at Headway Essex was apologetic that the t-shirt would not fit me but generous in his giving spirit and gesture of appreciation.
When I came back to Toronto, I wanted to do something special and carry on the momentum of giving. I was speaking with my colleague Amanda Muise, Behavioural Therapist about my excitement and ideas. I thought it would be cool for CHIRS and Headway to connect and a T-shirt could be a good catalyst. We talked about who could wear this T-shirt and she suggested Mr. Rob Ashe.
When I told Rob about my idea and showed him the picture, newsletter and T-shirt, he was very excited about the idea. He eagerly put the Tshirt safely away in his backpack. When I saw Rob two days later, he had taken pictures of himself around the city with the help of his friend, James.
Rob and I know each other through his participation in Mindful Art Workshop – Winter 2014. During the workshop, Rob learnt to meditate and try to do an art activity that was new to him. He made new friends whom he tries to keep in touch with. Rob was able to complete his art activity quickly and was ready to move on to the next task.
So sitting still and waiting and listening was new to him. He is very articulate and easily shares his stories, successes and difficulties but this ability to articulate could overshadow others who had a harder time sharing their voices. As the workshop progressed, Rob learnt to sit back and listen. To reflect quietly, then use his articulate voice to deeply appreciate other people’s talents and gifts. He talked more about others and less about his stories and came to appreciate this new way of being. Below is a sample of his art work. He called this piece – Anointed.
After taking a series of photographs, Rob and I sat down and I helped to upload the photographs from his phone. During the summer months in Toronto, there are several festivals and celebrations.
Below are the places that Rob visited with his friends from CHIRS:
When I arrived at work on Monday morning, I found a treasure inside my mailbox. When Rob and I were sharing stories and photographs, he had tears in his eyes. Rob loves to connect with people and especially people of all abilities. He told me, “You couldn’t have asked for a more perfect person to do this task.”
Rob understands that people with a brain injury may not have the same physical abilities as they did prior to the injury. Through his travels he wanted to share with people the places and events that he has access to and hopefully through these images, all persons may have access to these places and events.
Hi!! My name is Rob Ashe and I am a client at CHIRS (Community Head Injury Resource Services) in Toronto. When I was asked to have pictures wearing your group shirt, I took on the task because I feel strongly that groups wherever and whoever need to make contact and then we have a better understanding of each other and That is Great!!!!
I want to thank you for this opportunity and let you know that I believe that having a brain injury should not hold us back as we have much to say, much to experience and above all, much TO GIVE
I can’t begin to tell you how much this has touched my heart. Sometimes the work that we do can feel like work and there are good days and challenging days. Some days are full of beautiful moments and some days are problem solving days. My motivation for doing this work is to help others, whoever comes to my door. Knowing that we can touch each other’s lives and share in meaningful moments is a good reminder for me of the goodness inside each person that I’ve met. I am sure many therapists, helpers, teachers out there will share in my experience that the work that we do is relational and it takes two to form a relationship. The support and encouragement I give to the clients that have come into my life are reciprocated in so many ways that surprises me when I need it the most. It is these moments that helps me to remember what is important to me. To help others knowing that we all have an important part in each others lives.
NOTE TO HEADWAY ESSEX FROM BIST:
We’re sending you a t-shirt from our areyouaware.ca campaign – and can’t wait to see where it goes!
Amee Le is a Occupational Therapist (OT), meditation teacher, and art therapist practicing in the city of Toronto. She developed Mindful Art Workshop based on helping people with a brain injury through periods of high stress and anxiety.
I think the hardest thing since acquiring my brain injury has been the inability to perform basic functions, such as reading, talking, walking, and just even being able to eat.
Even now, several years later, these functions still feel like a luxury.
Living with brain injury is usually an invisible disability. People may tell you to ‘try harder’, ‘not be lazy’, or that ‘you look fine, stop telling yourself there’s something wrong’. These people don’t understand that an ABI survivor’s best bet to recovery is putting their best foot forward, regardless of how they’re really feeling.
Ironically though, if you do try to live a normal life, these people will tell you that you are fine and they don’t believe that something is wrong. But when you are in such a bad state that you can’t get of the house, these same people will tell you to suck it up and stop being a baby. So, since I acquired my TBI, I appreciate those who have accepted the new reality as much as possible – the ones who have been patient.
Even something as little as needing space or not being upset if I need help reading, or if I just have the energy to stay home and watch TV are a big help to recovery. I also appreciate those who are not understanding, because it gives a more clear understanding of who you can trust or who is actually listening.
Saba acquired her brain injury in 2010, and is interested in TBI awareness and advocacy.
Last month, 11-year-old Andrew shared his story of acquiring a brain injury as a result of a stroke for our #areyouaware campaign. If you read what Andrew wrote, you know that his story is beyond powerful – his stroke occurred just this past winter, and he is facing more brain surgery in the upcoming months. But none of this stopped Andrew from heading back to grade five as soon as he checked out of Holland Bloorview, finishing his school year, and then wanting to give back.
Andrew asked his parents if he could have a website for his 11th birthday. While Andrew says, he was “just joking around” his mom and dad took his request seriously, and with some parental guidance, Andrew recently launched www.iloveyourbrain.com.
“It’s for kids who have brain injuries, so they know there are other kids who have brain injuries,” Andrew said.
Andrew wants to reach out to other pediatric stroke survivors in particular, since he says he has never met other kids who have acquired a brain injury as a result of a stroke. According to the Heart and Stroke Foundation, three to six kids per 100, 000 in the 28-days to 18-year-old age bracket will experience a stroke, which is a higher incidence rate than brain tumours.
“Not just only older people and adult can have strokes, but kids can have them too,” Andrew said.
The statement, ‘You don’t know how strong you are until it’s the only choice you have‘ is in the centre of the home page of www.iloveyourbrain.com, and strikes a chord with Andrew’s bravery during his recovery. Andrew says his mom, Nadine Vermeulen, found the quote on-line, and he also has a t-shirt with the statement on it.
“You need to be strong to survive things and fight things,” Andrew said.
Due to his recovery, Andrew’s summer activities are fairly limited right now, though the tough 11-year-old does have stuff going on. He is playing golf, and The Whitby Major Mosquito A baseball team, the Chiefs, are letting him practise with them this season. After a chance encounter with his mother, a former Colorado Rockies pitcher who lives in Andrew’s neighbourhood is going to toss the ball around with him, too.
Meanwhile, Andrew says his brain injury has – understandably – impacted his friends and family. He said before his stroke, his friends were pretty good at wearing bike helmets, but his brother was not.