If you ask me, any type of brain injury is traumatic, whether it is acquired by a motor vehicle collision, an aneurism, a viral infection etc.
Living with the challenges of ABI, which can include headaches, nausea, fatigue, chronic pain – among other countless symptoms – can be brutal, and this brutality often comes in waves. Brain injury is often invisible, episodic, and quite often, not understood.
Sometimes I think the real trauma of acquiring a brain injury comes after the actual injury itself. I think many survivors of brain injury handle the initial challenges of their injury better than the ongoing aftermath, the reactions from others to their injury, and their own mental well-being.
I am happy for those that try, for those that don’t turn away. I am lucky to be in the position I am and to have the support I do. Nevertheless, at times, it feels as though the trauma continues.
There are times I think it is my fault: for pushing myself too hard, or for not saying enough. There are other times I simply want to yell and scream. Sometimes I even get confused and scared simply by looking in the mirror and questioning my own feelings.
I don’t want to explain what fatigue means for me, I don’t want to justify why or how it is that I just know my headaches are not the same as yours, I want to stop feeling stupid every time I forget something and I see that look on the faces of others.
The trauma lives on.
I am doing the best I can.
I don’t want anyone to feel sorry for me, I just want them to understand. Because if others can start to do that, perhaps I can keep moving forward without feeling like one step up means two steps down.
Then maybe, I can put the trauma to rest.
Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com
If you’re of a certain age and lived in Canada, you likely remember this classic Heritage Minute featuring neurosurgeon Dr. Wilder Penfield:
Taliesin McEnaney remembers the commercial well. A theatre professional with over 16 years acting, writing, producing and directing experience, McEnaney’s family tree includes a spirit channeling grandmother, Claire Ward. One of the spirits Ward channelled was Dr. Penfield. (For the record, Ward’s relationship with the deceased Penfield began in 1980, well before the line ‘I smell burnt toast’ became Heritage Minute famous in 1991.)
Also, McEnaney has a family member who lives with brain injury.
“I was researching epilepsy and seizures and Dr. Wilder Penfield was coming up quite a bit,” McEnaney said. “I was remembering he was [one of] my granny’s spirit guides. So I asked my aunt for all her writings and there are like 200 pages of typed up transcripts.”
After pouring through her grandmother’s notes, researching Dr. Penfield’s work and spending a year collaborating with four actors, McEnaney’s play, Brain Storm, about a woman trying to navigate through her new reality of living with brain injury, hit the Toronto Fringe Festival this week, and runs until July 15th.
(BIST Members can see Brain Storm for FREE on July 13th, and after join McEnaney to discuss the play. You must register in advance, HERE.)
“One of the ways [the main character, Kate] tries to [come to terms with her brain injury] is she turns to her grandmother, who is dead and had previously been a medium,” McEnaney said. “One of the messages she had channelled was from Dr. Wilder Penfield, and the message was that the mind goes on after death.”
Penfield’s work fascinates McEnaney because the neurosurgeon was able to change people’s reality – what they saw, smelled or heard – simply by placing electrodes on different parts of their brain. In Penfield’s book, The Mystery of the Mind: A Critical Study of Consciousness and the Human BrainPenfield theorizes that life after death is possible, if the mind can find a different source of energy. The brain, Penfield believes, is what fuels the mind.
From what McEnaney has experienced through her family member, this is similar to some of the effects of brain injury. A person’s injured brain may be unable to filter sounds and images, creating an intensity which is often overwhelming, leading to the question of what is reality and what is not.
“Without brain injury, we’re moving through the world not hearing so many things, not seeing so many things because the brain is filtering so we can focus,” McEnaney said. “When you are brain injured, everything is coming in at once and you’re becoming overstimulated because the reality is so intense. It’s like, ok whose reality is it?”
For McEnaney, it’s not important whether her grandmother really channelled spirits. (Though Ward’s notes on Dr. Penfield mimic his writings, which Ward had never read before she began channelling him.) But what is important is that her play opens up a conversation in the brain injury community.
“Every brain injury is different, and so is the one that you see in the show, but I think there are some commonalities that people will recognize,” McEnaney said.
Register HERE to see Brain Storm on July 13th with BIST!
If you can’t come with BIST on July 13th, you can buy tickets for Brain Storm HERE.
BRAIN STORM is co-created and performed by Hayley Carr, Maïza Dubhé, Shayna Virginillo, and Alexandra Montagnese. Conceived of and directed by Taliesin McEnaney, set and costume designed by Will Bezek with lighting design by Claire Hill.
15 per cent of the approximately 18,000 traumatic brain injuries (TBIs) that occur in a year in Ontario are a result of a cycling accident. Every year in Canada, over 11,000 people die as a result of a traumatic brain injury (TBI) – using the same 15 per cent – that’s over 1600 people in Canada who die as a result of a TBI caused by a cycling accident. 85 per cent of all cyclists’ deaths in Canada involve a brain injury.
A little over five years ago, I sustained a TBI while riding my bike. It was a beautiful spring morning, and I was riding my bike to work, as I had hundreds of times before. I remember leaving my home that morning, and then waking up in the emergency room at St. Michael’s Hospital, several hours later. I was told by the doctors in the emergency department that I had been knocked off my bike, hit the ground, passed out, and taken to the ER by ambulance. Several hours later I was diagnosed with a brain injury. To this day, I have no memory of the incident.
I was wearing a bike helmet, which I always did, but my helmet did not protect me against acquiring a TBI. I’d always wondered why, and recently I got my answer. I came across a TED Talk by bioengineer (and former football player) David Camarillo, who, along with his team at Stanford University, has been able to demonstrate what really happens to our brain during a concussion, and why bike helmets, and other sports helmets, such as football helmets are not designed to protect against concussion, but rather, they are designed and tested to determine how well they protect against skull fracture.
What happens to your brain during a concussion?
The standard thinking of what happens to your brain during a concussion is that the head moves, the brain lags behind, catches up, smashes into the skull, rebounds off the skull and then proceeds to run into the other side of the skull. This dynamic is repeated many times. This understanding of what happens to the brain during concussion suggests that the brain is damaged on the outer edges.
In his Stanford University lab, Camarillo and his team, with the aid of new technology, have looked closely at what happens to the brain when it is experiencing a concussion. Their investigations suggest that the current thinking about what occurs to the brain during a concussion is not entirely accurate. Firstly, he does not believe that the brain moves around as much as current wisdom suggests. Camarillo argues that there is very little room in our cranial cavity for movement, perhaps a few millimetres, and our cranial cavity is filled with spinal fluid, which acts as a protective layer. Secondly, he suggests that the brain does not move as a whole.
Our brain is one of the softest organs in our body – the consistency of Jell-O – and as the brain moves around in our skull during a concussion, it is probably twisting and turning and contorting – the tissue is getting stretched. Concussion does not appear to be something that is happening to the outer edges of the brain, but rather it is happening somewhere much deeper, in the centre of the brain.
The Laboratory – The Stanford Football Team
To help Camarillo and his team better understand what is happening to the brain during a concussion they utilized a mouth guard equipped with sensors and a gyroscope, which most experts believe can tell us what happens to the brain during a concussion. When someone is struck in the head, the mouth guard records how the skull moves at a thousand samples per second.
The study’s laboratory is the Stanford football team, young men who regularly go out and hit their heads. This allows for rich information to be obtained when the researchers extract the data out of the mouth guard.
When the data from the mouth guard, was combined with a finite element model of the brain, developed by Svein Kleiven in Sweden, it showed that the brain of football players, who have suffered a concussion does not smash around in the skull, as current thinking would lead us to believe, but rather twists and contorts. The data shows that the greatest amount of stretching occurs very close to the centre of the brain.
What’s there? The corpus callosum, the wiring which connects the left and right hemispheres of your brain. Camarillo believes that this might be one of the most common mechanisms of concussion, the wiring is being disrupted, which causes a disassociation between your right and left brain and could explain a lot of the symptoms one sees in concussion. This is consistent with what researchers see with Chronic Traumatic Encephalopathy (CTE) – when the corpus callosum of a middle aged, former football player is viewed, and compared to an individual who does not have CTE, his corpus callosum is greatly atrophied.
Although there is a rapid transmission of forces down to the corpus callosum when the head is struck, it does take a certain amount of time. What Camarillo and his team believe is that if we can slow the head down just enough so that the brain does not lag behind the skull, but instead moves in synchrony with the skull, then we might be able to prevent this mechanism of concussion.
How can we slow the head down?
The most currently used bicycle helmet is constructed of expanded polystyrene (EPS) foam within a thin plastic shell. The EPS liner absorbs the force of an impact by deforming, while the outer shell increases the area over which the force is dissipates. The main considerations when designing a bike helmet is the size and stiffness of the helmet, which impacts how efficiently energy is absorbed. As a result of the materials used in constructing an EPS helmet, the size of the helmet has been limited to a few inches. This does not slow down the head enough to enable the brain to move in synchrony with the skull, rather than lag behind the skull. It turns out that air, in an expandable helmet would be the ideal mechanism for slowing the head down enough during impact, so that the brain moves in synchrony with the skull, rather than lagging behind.
It turns out that a company in Sweden called Hovding, is using the principle of air to give the wearer of their ‘helmet’ some extra space to prevent concussion. Hovding has created what is essentially the world’s first airbag for cyclists. The Hovding is a collar, worn around the cyclist’s neck, that uses advanced sensors, similar to the sensors used in the mouth guards described in Camarillo’s research above, that can sense the cyclist’s movement patterns and will react in case of an accident. The airbag will then inflate, fixate your neck and provide a shock absorption. In experiments conducted by Camarillo and his team they have found that the Hovding collar can greatly reduce the risk of concussion in some scenarios, compared to a standard EPS bike helmet. The Hovding is currently for sale in Europe and Japan, and is CE labelled, which means it complies with European Union safety standards, but not for sale in the United States, and alas, Canada.
In the US, bike helmets are federally regulated by The Consumer Product Safety Commission. The Commission has jurisdiction over the type of helmets they approve. The test they use in order to grant approval to a bike helmet is testing the helmets capacity to prevent skull fractures, not whether the helmet is likely to prevent concussion. In Canada, The Canadian Standards Association accredits organizations to certify that bicycle helmets meet certain standards, such as CPSC bicycle helmet standard, which uses the tests described above by Camarillo.
I contacted Hovding and asked about the availability of their helmet in Canada – alas, it is not available here. They replied that, at this time, they have not investigated helmet certification in Canada. So it might take some time to get my head into one!
Even so, any helmet is better than no helmet, so keep wearing whatever helmet you have, and wear it properly.
Nine years ago, I walked into an emergency room with very obvious signs of a concussion. Despite glaring symptoms, no one would even utter the word ‘concussion’. Doctors told me I had whiplash, which didn’t even come close to describing the traumatic brain injury diagnosis I was given six months later.
This year, I walked into the same emergency room, with very obvious signs of a concussion. Despite nine years of brain injury awareness in the media, in hospitals, in schools and in sports, my experience was no different.
What good is brain injury awareness if we don’t put it into practice?
April 2017 marked nine years since I acquired my brain injury. I experience symptoms every day and it looks like they are here to stay. Like many others, I navigated the health care and education systems before brain injury awareness hit the mainstream. My family and I had to research and advocate for every bit of care I received. Even with a CT scan in hand, it was difficult to get doctors to believe, let alone treat my symptoms. This was before Sidney Crosby, NFL lawsuits and head injury protocols; the dark ages of brain injury.
This year, I learned that we are still living in the dark ages. Last month, I was hit in the head with a locker by accident at work. When my symptoms continued to get worse instead of better, I went to the same emergency room I went to nine years ago. It didn’t even cross my mind that I would be treated exactly the same as I was back then, this was the new era of brain injury awareness, right? Wrong.
There were three of us in the emergency room with concussion symptoms; the doctor barely looked at any of us and sent us on our way. I returned to my family doctor, who has seen me do this concussion dance with the health care system before, and was sent to another emergency room. The second ER doctor told me what I was experiencing was impossible and seemed shocked when I dared to ask for WSIB forms to be filled out. Despite the blurred vision, noise sensitivity, nausea and fatigue he put a question mark beside the concussion diagnosis on my papers.
June is Brain Injury Awareness month in Canada and it’s a month I’m excited for and take pride in every year. Considering how prevalent concussions / brain injuries are, I think awareness is important for everyone, but awareness isn’t enough.
Being aware is the first step but it is by no means the only step in preventing and responding to brain injuries. The next step is to put that awareness into action; this action is going to require effort and change by professionals and individuals.
It’s easy to say we are aware and be done for the day but if we don’t put in this effort for people with brain injuries, awareness falls flat and nothing changes. The very people brain injury awareness is supposed to be helping are failed all over again- stuck in the dark ages of brain injury.
The other piece of brain injury awareness that requires action to be effective is prevention. Awareness that leads to policies such as concussion protocols are great (if they are put into action and enforced) but this doesn’t lead to a decrease in people sustaining brain injuries. Brain injury prevention is going to have to come from individual change; with the increase in brain injury awareness, we know that a hit to the head can have lifelong impacts. With that being said, there is no excuse for deliberately hitting someone in the head.
Many brain injuries, especially sports-related brain injuries, are entirely preventable and occur due to individuals decisions. My brain injury stems from a youth athlete’s decision to use physical force instead of skill to win a basketball game. This is similar to Sidney Crosby, during the NHL playoffs he sustained another concussion at the hands of a player on the opposing team. It is very well known that Crosby has a history of concussions and another hit to the head could, at the very least, end his career. With the increase in brain injury awareness, we should be seeing a decrease in these types of injuries simply by individuals changing their behaviour.
My hope for this Brain Injury Awareness Month is to move beyond awareness and towards action. This includes a decrease in the number of brain injuries and better outcomes for survivors.
Alyson is 25-years-old and acquired her brain injury nine years ago. She graduated from Ryerson University and is a Youth Worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33
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.