Every year I wonder of its impact. What minds are being awakened and new things learned? Do people come to an understanding of what it’s like to live with brain injury? Are folks even paying attention?
Over the years I have attended various conferences, and volunteered as a peer support mentor. Of all the survivors I meet and all of the voices I listen to, the common theme I hear over and over is of people feeling alone and misunderstood.
I am misunderstood, often. I feel like people hear me, but don’t listen.
“Hello, is anybody out there?” I want to scream. “Do you get it?”
But when I really think about it, contemplating my own thoughts and replaying conversations, I realize: isolation is not winning. Hopelessness and ignorance do not always come out on top. People care, learn, and adapt.
I am a graduate, I am honoured with diplomas, I own a home and have a good job. From everything I have accomplished, and through all of the challenges I have faced, I have learned.
As a brain injury survivor and advocate, people applaud my presentations; they enjoy my blogs and value my mentorship. A written memoir of my life and challenges with brain injury has gotten respect and admiration.
I. Am. Awareness.
Everyone who speaks up and moves forward is awareness.
Life is awareness. It is happening all of the time, more often than we, or I, may think.
Is it enough? I don’t know the answer to that. Is there ever a time we should stop moving forward? To stop learning and teaching?
Helping to create brain injury awareness is part of me and who I am. It is part of a lot of us. And it is all of OUR legacy, being aware, creating hope, understanding, and inclusion.
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.
June is here and that means Brain Injury Awareness Month is here once again. Last year, I wrote a post about how awareness isn’t enough and we need to see action, in particular in terms of how concussions are responded to and prevented.
I wrote this piece from a very interesting standpoint: I had my first brain injury nine years prior and had experienced a concussion again in April of 2017. What I learned was, not a thing has changed in terms of what happens when you go to an emergency room with a head injury.
Even after nine years of increased awareness, it could have been 2008 all over again. My diagnosis was slow, multiple doctors were unfamiliar with symptoms and none took them seriously. My analysis of our healthcare system failure ended at the emergency room doors when I exited and returned to work two weeks later.
It is said that once you have had one head injury, you are likely to be susceptible to another, and surprise, I had another concussion in September 2017. I bent over to get something I had dropped on the floor at work and hit my head on the edge of a desk. Depth perception issues were apart of my original injury so this isn’t too shocking. Based on my last experience, I skipped the whole emergency room circus, I knew the drill at this point and wasn’t showing any signs of a serious head injury such as vomiting or loss of consciousness.
I thought I had recovered from my head injury until I started experiencing, by far, the oddest and unfamiliar brain injury symptoms I’ve ever had. Between the rapid blinking eyes, stiff arms and shaking, it looked like I was having seizures yet all of my tests for epilepsy were normal. Fortunately, I found a great neurologist who has been successfully treating these symptoms through medication but it was an uphill battle to get to him and to treatment.
Last year, all I wanted was for the medical profession to put brain injury awareness into action. After my latest brain injury, I’ve seen them in action and it isn’t pretty. This wasn’t the action I was hoping for and isn’t what I need as a person with a brain injury.
In the past six months, I have had doctors tell me the type of brain injury I had ten years ago was impossible with no proof otherwise, attempt to diagnose me with mental health issues and not consider my pretty significant brain injury as a factor related to my current health issues.
I’ve sat through four hour long appointments where I was taken through every detail of all four head injuries I’ve had and questioned about every decision I have ever made. It felt like I was on trial as a victim of a crime being cross examined by a defence attorney. If I couldn’t remember something, I was questioned why that was. Maybe it’s the brain injury? I hear those could cause memory issues but just a guess.
Last year, all I wanted was action. This year, I want a pause. I want the medical profession to take a pause and really take the time to learn about traumatic brain injuries and educate themselves beyond the symptoms we commonly associate with these injuries. Doctors need to have a more comprehensive understanding of symptoms that go further than what they read in a concussion pamphlet if they are going to treat them.
When I acquired my brain injuries, I had to open Google and crack open some books to get the information I needed. People with brain injuries don’t have time for the medical profession to take a pause so better crack open that textbook.
Alyson is 26-years-old and acquired her first brain injury ten 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 or on The Mighty
Where did you come from? I never asked for you. You snuck into my head and caused a great deal of damage when I was a young boy, defenceless to your attack. You tried your best with your seizures and placing me in a coma. You robbed me of memories, physical strength, speech, and understanding. You made me feel trapped.
You tried to pull me into the abyss, but I would not go. I would not surrender.
With all that you stripped of me, I somehow made it back.
PHOTO: MARK KONING
Maybe it was the love of my mom and dad, or my little sister who wanted her big brother back. Maybe it was my friends who wrote me cards and drew me pictures while I was lying there, motionless. Maybe it was something you just could never quite take away; my heart and my soul. My character.
Somehow you managed to shield yourself from my awareness and understanding. You did this for quite some time. And while I knew something wasn’t right, I just didn’t know.
I want you to know that despite trying as hard as I did and always, sometimes blindly, moving forward, you still made life growing up, difficult. Challenging. Torture.
But I kept moving.
I never wanted you.
But I kept moving.
People didn’t and still don’t, understand. I don’t necessarily understand.
But I keep moving.
You are an unwanted guest, still lingering after all of these years. Hiding in the shadows like a monster. In my weakest moments, or sometimes when I’m just not paying enough attention, you unleash your poison. You bring about the pain, the fatigue, the frustration and the tears.
It is hard for me to know that others don’t see my unwanted guest. It is hard for me to know that you refuse to leave. But despite these things, despite how tired and angry I get, I know. I am the strong one, you are the weak. This is my path; and in a weird and strange way, you are the one who is now trapped.
Because I realized something that I don’t think you ever intended; it is NOT the end. I am a Survivor. Not just of the initial impact, of my time in the hospital, but every day. I survive; I thrive; I learn; I grow. And when you knock me down, I get back up. I will ALWAYS get back up.
Truly, NOT yours,
Mark
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
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
As I lie in my bed I breathe in and out while staring at the ceiling. I can feel all of the bones in my body as I stretch myself awake. I rub the sleep from my pupils and rise to a seated position.
Five fingers;
Five toes;
I extend and wiggle.
I climb to my feet and slowly shuffle my way into the bathroom.
The mirror on the wall stares at me.
Two eyes to see with;
One nose to smell with;
A mouth full of teeth.
Mark Koning
There are no physical scars or indentations on my head. There is no numbness to my face. My arms and legs have full motion, so there is no need for a wheelchair or use of any other kind of assistive device that can be seen. I know that not all injuries are the same, but still…
What is wrong with me?
Do they know what they cannot see?
Do I?
I feel the skin on my cheekbones and look toward the mirror with pretty clear vision.
I sometimes feel that part of me is forever hidden.
Shadowed; unseen.
Maybe it is not what they don’t see, maybe it is what they don’t understand.
While I may live with a brain injury, my brain lives without borders, and what I mean by this is that my limitations only go as far as I let them bother me. For me, one plus one may not always equal two, and what I need to do is come to the conclusion that this is alright. There is no shame in it. It hurts me to know that not everyone else can find this same reasoning.
Because of it though, I still often find myself waking up only to look into that mirror and wonder. What is depression supposed to look like? Is this chronic fatigue that I feel, this confusion and frustration, this struggle to retain information, this cognitive search for words that quite often get lost, this uncertainty that I am challenged with, the extra time I require and need to slow down, are these things real? Are these things a result of my brain injury?
But I know the answer to these questions. And even though it is a continuing struggle between what I feel and that which cannot be seen, I know. I know of the strength and of the beauty and of the patience. I know of the possibilities, the potential, and the greatness that lies within. I know that if you only allow your eyes to see, you can end up missing out on a lot.
Volunteer Appreciation Week is just around the corner – and we at BIST have been using the month of April as an opportunity to congratulate the winners of our Volunteer of the Year Award: Christiane Kokko (Caregiver Category) and Rob Ashe (ABI Survivor / Thriver Category). Stay tuned next week when we announce the winner of ABI Ambassador Category! In the meantime, find out more about the hardworking members of our Brain Injury Awareness Month (BIAM) Committee below!
Members of the 2017 BIAM Committee: (L-R) Tonya Flaming, Kelly-Anne Rover, Jordan Assaraf, Meri Perra, Matthew Chung, Celia Missios, Colleen Boyce and Joe Pileggi Missing: Alex Piotti (chair), Ian Bowles, Ian Furlong, Miranda Hong and Vivian Ng (on leave)
At our last meeting, BIAM Committee member and long time BIST volunteer Colleen Boyce mentioned, “I have a display of Brain Injury Awareness events going back to 2000 in my basement, would BIST like to have it in the office?”
Colleen said that just after committee chair Alex Piotti handed over a DVD of a BIAM event from fours years ago she ‘happened’ to find amongst her stuff. Take away: you know you’ve got a committed group of volunteers when members of the committee literally carry the history of the work with them.
Colleen said her reasons for sticking on the BIAM committee all this time have stayed the same, “The goal at the time and still is awareness and for me personally to give back to the community and the brain injury industry. I did and still feel you need to talk the talk and walk the walk!”
(top L-R) Vivian Ng (third from left) and volunteer Rob Ashe (in blue #areyouaware shirt) at Sunnybrook Hospital in 2016; (bottom L-R) Alex Piotti, Ian Furlong and volunteer Mychal Reeves in 2016
There are several BIST committees, and all of them are where work crucial to BIST happens, our major fundraising events such as Birdies for Brain Injury, the 5K Hero Run, Walk and Roll and the Mix and Mingle would be impossible without these volunteers. Simply put, without volunteer hours, BIST would not be where we are today.
Enter the BIAM Committee, where some members such as Boyce (who was the founding chair of BIST in 2004) has been involved since 2000, before BIST existed.
Throughout this time, the committee’s work has expanded from throwing Brainstock events at Nathan Phillips Square (check out none other than Mr. Ben Mulroney as our special guest in 2012) where members of the ABI community would gather, snag some swag and celebrate the strength of brain injury thrivers / survivors in the heart of Toronto.
Committee member Tonya Flaming helped organize Brainstock events after joining the BIAM committee (because a colleague told her it was ‘fun’) in 2009. Jordan Assaraf, currently a BIST board member, has sat on the committee for three years. New-this-year members such as Celia Missios (also a board member), Matt Chung (a former Communications Committee member) are contributing new ideas and energy to the group, as is Kelly-Anne Rover who replaced her colleague and long-time BIAM Committee member Leslie Allen this winter.
Joe Pileggi, director of client services at Thomson Rogers has been active on the BIAM committee for years. He and Thomson Rogers partner Ian Furlong ensure the committee has meeting space in the Thomson Rogers boardroom, including free coffee and doughnuts as a bonus. (Legal assistant Esther Wiik helps a lot with this part!) Joe is also responsible for giving the committee free access to professional design services through Lime Advertising for BIAM’s print materials.
Super BIST volunteers Tonya Flaming and Frank Bruno at a TTC Brain Injury Awareness campaign in 2015.
BIST Volunteer of the Year winner in 2012, Ian Bowles, joined the committee six years ago, he says partially as a survivor representative, but also because he was interested in ‘reaching out to people who do not know the implications of brain injury.’
Members of the BIAM Committee at Brainstock in 2013, (bottom right) Ian Boyles wins BIST Volunteer of the Year award for his work on BIAM and the Communications committee in 2012.
In 2014 and 2015, the committee, along with dedicated BIST members, went into the TTC during June to distribute brain injury awareness messages.
Last year, the committee invested in ads in the TTC and held awareness booths in Toronto hospitals.
Screen Shot of areyouware.ca
In 2014 and 2015, the committee, along with dedicated BIST members, went into the TTC during June to distribute brain injury awareness messages.
Last year, the committee invested in ads in the TTC and held awareness booths in Toronto hospitals.
Former BIST executive director, Michelle McDonald and BIAM committee member Vivian Ng at the TTC in 2015
The switch to focussing on social media and the #areyouaware message worked, and in 2015 the committee won an award from the Ontario Brain Injury Association Advisory Council for their work:
The Ontario Brain Injury Association’s Advisory Council award, proudly displayed in the BIST office with #areyouaware material from previous years above.
This focus is continuing in 2017, so be on the look out for brain injury awareness booths in Toronto hospitals in June, our booth at Pride Toronto and another great social media campaign!
And thanks to all BIAM Committee Members (past and present) for their hard work!
Meri Perra is the Communications and Support Coordinator at BIST – she feels very lucky that she gets to work with so many amazing people at her job – including this committee!
June is brain injury awareness monthand the fact that a focus is being put on this acquired disability is wonderful! I think it is great to have a time frame where a lifelong injury, such as brain injury, is put forward so that it is a little more prominent in people’s minds. So that we pay a little more attention to the hardships and struggles, the success stories, the services rendered, the caregivers and the survivors. It is a time to listen to and respect one another, a time to discover and learn new things, a time to share and a time to make new and important connections.
Awareness is the ability to perceive, to feel, or to be conscious of events, objects, thoughts, emotions, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something.
And there is the trouble. Do see it? Did you read it? “… [W]ithout necessarily implying understanding.”
When it comes to an issue such as brain injury, just how aware can one be without understanding? The answer, in my opinion, is that you can’t be.
So when I refer to the above ‘community’ I am referring to brain injury survivors, the dedicated caregivers, the service providers, rehab workers, therapists, etc. Unless you participate, unless you have an open mind, unless you ask questions and listen to the answers, are you truly aware?
Just because you know of brain injury, doesn’t mean you know what brain injury is.
I have lived with a brain injury for many years and I have had people tell me that they understand ABI, but then turn around and question my challenges when it comes to keeping up a quick pace, why I have difficulties retaining certain information, or why I would require certain accommodations.
I am also a caregiver to my mom who recently acquired a brain injury. I recall a time when someone said they knew of her injury yet couldn’t understand why she needed my assistance with communicating.
Awareness is great, but it unfortunately does not mean understanding. In fairness,I suppose brain injury understanding month does not sound, or flow, as well. But that is really what it needs to be – understanding – because awareness doesn’t quite live up to what is trying to be accomplished by having this month dedicated to brain injury.
So I challenge you to ask questions, to listen, to try and empathize and to keep an open mind. Let’s grow together.
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.
But I keep moving.
