By Kirsten Short
Sacha, my yoga instructor, said at the end of this evening’s class: “Sometimes things don’t always go as planned and that’s okay. There will be bumps in the road, but know that you are more than able and capable to get through these challenges.” “Ugh. That’s just great,” I thought, “Here I am trying to enjoy my last savasana and be mindful, and all I can think about are my detours and embracing them. THANK-YOU Sacha!”
Okay. Okay. I wasn’t really that mad. How could I be? Sacha just gave me a great topic to write about: Embrace. Life’s. Detours. Repeat this phrase three times. Write it down. Remember it. Make it your mantra.
I am confident that Janine Shepherd would give the same advice. When a car accident shattered her dreams of representing Australia in the 1988 Winter Olympics, Shepherd was devastated. Not only would she never be able to ski competitively again, but she was also paralyzed from the waist down. Yet, it was when she was at her lowest, that she found her will to live and the strength to move on:
“I had a choice: I could keep fighting this, or I could let go and accept not only my body, but the circumstances of my life. And then I stopped asking, 'Why me?' And I started to ask, 'Why not me?' And then I thought to myself, maybe being at rock bottom is actually the perfect place to start... even though I had absolutely no idea what I was going to do, in that uncertainty came a sense of freedom. I was no longer tied to a set path. I was free to explore life's infinite possibilities. And that realization was about to change my life. Sitting at home in my wheelchair and my plaster body cast, an airplane flew overhead. I looked up, and I thought to myself, 'That's it! If I can't walk, then I might as well fly.'"
Within the year, she had earned her pilot’s license. She is now a best-selling author and a heavily sought after motivational speaker. Click here to listen to her full TED talk: “A Broken Body isn’t a Broken Person” — it’s one of my favourites.
Although my story is very different from and definitely not as inspirational as Shepherd’s, I can absolutely relate to her and her message. Shepherd stresses the power and importance of the human spirit and that we are more than our physical limitations. “I know that I am not my body, and I also know that you aren’t yours.” My concussion occurred on February 19, 2017. While at a friends house, I fell, hit my chin on the way down, and knocked myself out. I don’t remember much from the accident; I only know that it drastically and dramatically changed my life. My recovery over the last 16 months has been painfully slow. My post concussion symptoms, mainly the fatigue, chronic migraines and blurry vision, have made it impossible for me treturn to my job as a CPA (at least for now).
The good news? Yes, there is good news. In the midst of the pain, tears and setbacks, I have found an upside: passion. Over the last year (and some), I have seen how costly and frustrating the Canadian Health Care System is for acquired brain injury survivors and their families (as I'm sure anyone reading this knows). I WANT TO CHANGE THIS. I am starting small and in the city where my injury occurred: Yellowknife, Northwest Territories, Canada. (You can read an article CBC North wrote about me here.) I am so excited to see what I can accomplish!
And more importantly, I know now — without a doubt — that Shepherd was right: I AM more than my disability. Life happens sometimes. It can be unpredictable, tough and unfair. The secret to getting through these difficult times? Use the setbacks. Take the opportunity to reinvent your life. Find your spirit. And yes, embrace life’s detours.
(You can read more from Kirsten Short on her personal blog!)
By Abigail Mclellan
As someone dealing with Post Concussion Syndrome, and a student of Cognitive Science, I was very impressed by a recent lecture on pain given by Dr. Jeffrey Mogil. It appears that the paradigms used by pain researchers have not been applied or adapted to Post Concussion care, nor have pain researchers considered Post Concussion Syndrome as a case of chronic pain.
What makes post concussion pain so unusual under the pain paradigms is that it is a case of chronic pain that appears to be evoked pain, since it correlates with certain activities. Typically, chronic pain is thought to be spontaneous, that is, not correlated with a particular activity. This contrasts acute pain, which warns of a danger to quickly avoid, or tonic pain (days, weeks or a few months) which suggests rest and immobility of the pained area, to optimize healing. In contrast, chronic pain is considered spontaneous because the pain seems to persist after its cause is no longer there (like phantom limbs continuing to hurt). In the cases where the cause does persist (like in cancer pain) researchers wonder if the pain might promote general caution, which might keep the individual away from dangerous situations considering their compromised health. It certainly directs them to a healthcare professional, which hopefully increases their chance of recovery.
In all cases, pain acts as a clue that something is wrong. What makes chronic pain so strange is that often, the only thing that is wrong seems to be that the person is experiencing pain. This has been a breakthrough in thinking because it allows both the patient and the doctor to only worry about the problem of pain itself. But when something more is going on, it is important to use the bodies clue to explore underlying issues. Pain from inflammation might be caused by the food someone eats, which means that any other method of mitigating that pain would leave the underlying inflammation a serious health problem.
When evoked pain is correlated to an activity, the message is clear to avoid the activity. This works so well in the case of the broken arm. Any movement causing pain is avoided. However, with inflammatory pain evoked by food, it might feel spontaneous. This is because the pain does not occur immediately after eating the food, and it becomes a challenge to sift between many possible causes. Pain may feel spontaneous on the surface before we understand what is evoking it. How many types of evoked pain might we be missing?
I would argue that Post Concussion Syndrome is a case of chronic pain that is evoked. This means that the pain occurs when the individual does certain activities, and stops when they stop doing the activity. Like in the tonic case, this can be useful to prevent the individual from overdoing themselves. The problem is that the pain might be correlated with doing most of the things that provide meaning in life: music, socialization, exercise, reading, playing games, and thinking deeply. New research agrees that doing nothing all day in a dark room does not promote recovery. The problem is that when the sensation of pain is so strongly correlated to the level of activity, even low levels of pain stop activity. In my case, it's not necessarily the intensity of post concussion pain that makes it debilitating, it is the fact that it pops up whenever I start to do something. That, and its direct association to the times when I can't think and feel myself slowing down.
Like with a food sensitivity, the evoked pain of Post Concussion Syndrome does not always arrive immediately after a provoking event. Instead, it might take a few hours to kick in. This makes it hard to directly pinpoint which activities are more problematic. In addition, it seems to be cumulative, so that something that is usually not a problem or even energizing can provoke pain on a low day. This cumulative effect can often cause unpredictable crashes when looking at the last day. It is only in looking at the last few weeks that levels of pain and fatigue make more sense. For these reasons, the evoked pain can be even more frustrating, because it is not easy to get a grasp on. It is much more complicated than keeping an arm still.
At its most extreme level, a concussion effects almost every voluntary behaviour. When teaching children, I explain that the first step to recovery is No Activity. When asked what they can still do, we list sleep and eating as the two safe bets, though sleep disturbances and nausea may make even these activities difficult. We tell the kids to stay in this stage until they have no symptoms, and then slowly to progress up to Some Activity, More Activity until Back To Normal. We stress that at the sign of any symptom, they should return to No Activity. The underlying message to this procedure is clear: activity provokes symptoms. Evoked pain.
This procedure for an injury to the brain is along the same lines as one you would advice for an injury to the arm, with one key difference. Behaviour involving the arm is localized, behaviour involving the brain is pretty much all behaviour. Most people are pretty bad at doing nothing, which makes it essential that this advice is given in a way that increases its chance of being listened to. Doing nothing might look different for different people. Anxiety can be a huge energy drain, and crying all day can cause a headache worse than the concussion. This makes concussion protocol a difficult balancing act. The key message is to rest, the hard question is what does that look like?
90% of concussions resolve in 6-8 weeks. The numbers might change but the message we tell children is clear. Concussion recovery happens. Good rest promotes quicker recoveries. And most importantly, we stress that the rest in the beginning is the most effective: three weeks of rest right away saves the months or years needed when initial rest isn’t taken. This is where concussions become chronic: the initial healing didn’t fully happen and now conventional advice to rest becomes problematic.
But doing no activity for months and years cannot be healthy, and is in fact depressing and isolating. Something else is needed.
What is going on in this post concussion situation? Symptoms have persisted into the chronic stage, and seem to be evoked by a variety of behaviours. Some people get headaches and fatigue when they read, others get dizzy and nauseous from exercise. Individuals suffering from post concussion syndrome tend to adapt their lifestyle to avoid overly provoking symptoms. We demonstrate avoidance behaviour, the common response to pain. But when the thing we are trying to avoid is our entire life, full of its various pleasures, it becomes a delicate balancing act.
If the goal is to prevent pain from restricting one’s lifestyle, this goal must look to the future. A painkiller does not work if it allows me to push myself for one day to the point of fatigue which requires a week to recover. Likewise, developing high pain tolerance in the face of symptoms contradicts this goal if it provokes an increase in neurodegeneration and associated symptoms in the long run. What makes this question so urgent is that the opposite could very well be true. Avoiding pain could very well be the cause of neurodegneration, if the situation is comparable to the pain required to re-strengthen hurt muscles. If injured cognitive functions require targeted activity to recover, pain associated with this activity is part of recovering. Leaving the vestibular, visual, processing, and language systems unhealed does not seem good for long term brain health. If pain goes along with the recovery of these types of systems, it is not a bad thing.
This is the paradigm I have been living under for five years. To recover a deficit, I must work on this deficit. Sub-symptom threshold training would be ideal. This is when the activity is below the level that provokes symptoms. However, this is a challenge in practice when many things provoke symptoms, and fatigue is not compartmentalized. Once one thing tires me, my tolerance for other activity drops. Playing music usually helps me regain my energy, but if I am tired enough, the situation flips and it to provokes symptoms. So I can’t measure a standard sub-threshold activity's length and intensity and simply keep in that range. I have to use the symptoms themselves as a clue that I need to rest. Masking the pain that is a common symptom tends to lead to a bigger more debilitating crash later. For example, working out is healthy, but not if muscles need 3 weeks of recovery time after each session. The muscles would lose all the strength they had just gained, during that resulting inactivity. This idea is supported by concepts like the Parkwood Pacing Program. They advise avoiding cycles of high activity and subsequent low periods, and instead slowly building up strength in small increments. Extreme symptoms do not mean that further harm is occurring, but they may slow down recovery.
This concept helped my healing because it allowed a balance between still pushing, but not feeling guilt in the cases when I push to hard. Guilt insidiously turns healthy activities unhealthy, so a framework to understand pain in a positive light is important. Attitude can make the same activity stressful and energy draining, or exciting, tiring but motivating.
This is the reality when it comes to thinking about recovery. This framework has allowed me to balance the desire to avoid pain with the joy I get from certain activities that cause this pain. It means accepting pain as part of the road to recovery. No research can change this. What can change is the upper and lower limits. How much pain is too much? How much rest is too much? With many lifestyle aspects we don’t have a choice, we must learn to cope. But for other activities we do have a choice. We don’t have to take long drives, or go to loud concerts, or study at university. Certainly contact sports or military service push the limits of Post Concussion Syndrome. Activities with a high risk of re-injury should be avoided. But beyond that, the line is not clear. In the short term I might have less symptoms when I am not in school, but in the long term, school work might be the very activity that stimulates healing. More generally, what activities stimulate healing and which increase the likelihood of neurodegeneration? And by how much? The problem is, we don’t have an answer to this, so lifestyle decisions are difficult to make.
How has pain limited my lifestyle the past 5 years? Big crashes limit my lifestyle, as does chronic fatigue. But the constant presence of pain can actually enhance my lifestyle if it is used as a clue to predict fatigue. It might be the very thing that lets me maximize the limited energy that I do have.
In my lecture last week, I learnt that pain is an unpleasant sensory or emotional experience associated with actual or potential tissue damage, or described in terms of such damage. In all cases, pain feels like cell damage, but is not always. Knowing the difference is huge. It makes me wonder, if one day research will show that the pain evoked by my lifestyles does indeed cause tissue damage. Somehow, I think not. Despite living in a materialistic age, I know that I can’t grasp at immortality, and must live this life now, in these moments. I try to live a healthy life so that I can do the things I love, not to prevent me from doing these things. It would be for nothing if I spent my entire life not living, just to die with a healthy body.
Concussions. I rarely speak about them anymore to be honest. Not something I spend much time thinking about. Very few people, by just looking at me, would have any idea that I have sustained at least eight concussions, but in fact, some medical professionals have estimated that I may have sustained anywhere upwards of twelve concussions. The number is crazy; I am well aware. But I blame no one.
You see, most of these concussions were sustained playing sports, something that I love to do. I played through concussions often in high school. Most would say, “who the hell were your coaches and why did they let you”. I don’t for one second blame my coaches. They were some of the most influential, positive and hardworking people in my life, and although there were times I wish they would have told me to stop playing, how would they have known my head was becoming a problem – I had become an expert at passing concussion tests. Deep down I truly wanted to keep playing hockey, and rugby, so I did. And I did it at a competitive level, even though I am in no way a professional athlete, I can respect the effort that I put into sports and the hundreds of hours that I put into perfecting skills. I moved away from home to play sports when I was just 14. At the time I probably had about two concussions on my record. I left high school with four recorded concussions. Realistically I probably sustained closer to seven. I want to stress that I blame no one, high school was an amazing time in my life. We were a school that focused on winning, and character building. There was always pressure to perform, and I was always chasing a higher level, a call up, or some goal. I thrived on the pressure, I hard work, I loved the challenge, and never once did I feel like I was being forced to play, or do something when I didn’t want to. I agree that there is a fine line between toughness and stupidity, and I probably walked the line, but it’s hard to put into words the pull of a sport, the pull of your teammates, the pull of a classroom, and the pull of everything you had ever known. For those reasons, I blame no one and honestly, I regret nothing about any concussions, diagnosed or not, that I sustained in high school.
The thing is, it is a lot easier to hide symptoms in high school then it is in university. Academics aren’t as tough in grade nine as they are in first year. The workload is different and concentrating is something that is essential, rather than just recommended. I was ready for university, about as ready as anyone could be. I was and always have been an overachiever– I graduated high school with great grades, got accepted to McGill, and was going to be playing for the McGill Varsity women's rugby team. As I said, I was ready, and beyond excited.
My first year was going great, it really was. There was an injury on our rugby team, so I quickly jumped into a starting role, which placed me on cloud nine. It’s an athlete’s dream – to be on the starting line of your university team, when you’re only a few weeks into your first year. But there was a game that changed how things went for me. We were playing Laval, and I started the second half. I was playing prop, meaning that my job was to hit people so that other people didn’t get hit, and when called upon, inch your way up the field with the ball. We weren't playing well at all and it was turning into a bit of run around when this girl ROCKED me. Like I flew backward, hit my head on not only the other girl’s head, but my head hit the ground very hard. I wasn’t ready for the hit and take full blame for that. I remember nothing from when the hit happened until I got home about 6 hours later. The only thing I do remember was that I finished the game. But my friends remember that I was, dazed and confused. But I finished the game, I went into autopilot, went through the motions and got myself from point A to point B for the rest of the game. I don’t really know why or how, but I guess that happens. I took two practices off, to brush off the cobwebs, then insisted that I was good to go and could play the coming week. So I did. And everything went back to "normal".
What I didn’t realize is that my "normal" was becoming pretty interesting. Running in a straight line was getting tougher, but in my position that wasn’t that big of a deal, looking back, a headache was consistent throughout most days, and I pretty much stopped reading completely. It was so gradual that I didn’t really notice anything changing. It was no one’s fault, it just kind of happened. Again I blame no one.
In our biggest game of the year I got another concussion, as well as fractured my nose. I’m not really sure what happened, but I know my nose was not straight and there was lot of blood. But we scored on the play and I was so into the game I really didn’t even think about it. That was the best game I ever played at McGill. My new normal now involved the room spinning though, and I would often see stars, but it was again, very gradual so I thought nothing of it. The rest of the year went off without a hitch and I was just doing what I normally do, and trying to get better. But lifting weights was getting so hard – as in it was harder than it should have been. Getting lightheaded from lifting isn't uncommon, but this was different – I almost felt like I would black out. But I was so good at hiding it, and I would often just think that I was very out of shape, so I would push myself harder. Looking back that probably wasn’t the smartest. Not to mention I was engaging in many normal university activities, many of which often involved drinking, and if anyone knows what a party at McGill is like when you're in first year and living in Molson hall, I think you can fill in the blanks of how some of my nights went.
In October of the next year though, I just physically couldn't do it anymore. It had all come full circle and I was so done with rugby. Looking back, I wasn’t done with rugby –I was done with getting lost on campus, scared of getting hit again and again, when I had never been one to be fearful, and so damn frustrated with where my head was at. I told my coaches and teammates I wasn’t playing anymore and they were awesome. I had told two of the girls before the practice and kindly asked that they didn’t say anything until I talked to the coaches. They kept my wish and if it wasn’t for them I don’t know what I would have done – there is a good chance I would still be playing today, but they knew, better than I did, that I needed to stop playing and risking my brain. For once my stubborn pride did not win. I thought it would start getting better. But I couldn’t get myself to go to the doctor for a few months, because I refused to think I was done, and I kept telling myself I’ll be fine. But when February of 2016 came around, while already on concussion recovery protocol, I got the worst concussion of my life… from slipping at a party.
I was the sober one that night – I did not want to drink because of my concussions, but someone took my phone so I ran after them and slipped, flew backwards and smashed my head. I remember one of my best friends looking at me and I could see the look on his face, it was the look someone gets right before they say, "Oh shit". The rest of the night was hell –it's pretty personal – but for the first time in a long time, I was terrified. My friends were worried, and I don’t blame them, but from the bottom of my heart, I cannot thank them enough for sticking with me for the next year. It was just as bad for them as it was for me. I had a friend who would check in on me nearly every day, friends offered up their apartments because they knew I didn’t want anyone to know if I was having a bad night. Friends offered to write my assignments because I couldn't look at computer screens, there was mental health concerns and a good friend of mine never once ignored my calls and became one of the only people I have ever truly trusted. Friends would sit with me in the dark, and wait till I fell asleep to leave. I don’t know how my stubbornness didn’t chase them off, but every single time I needed something, they were always there, even if it was addressing the same issue for the tenth time in a month. I could go on and on about the people who helped me, but those are some things that stand out. Anyone can talk about doctors and appointments, but my friends are the people that pushed me through. I didn’t want to worry my parents, so without my friends I have no idea where I would be. When someone knows you’re in a tough spot and they allow you to be honest and vulnerable with them, and they continue to be endlessly encouraging and supportive about you getting better, those are friends and things that you cannot, and never will, forget.
There has been so much that has happened in the past year, one month and eighteen days. So many appointments, setbacks, and changes. Some things will probably never go back to the way they were. Some things happened that I will probably never talk about. I have some manageable but difficult anxiety that creeps into almost every facet of my life, that very few people understand or can identify. I have a twitch in my left eye, that started around the time I got that last concussion, and sometimes I can’t remember things, or sit still very long. I will also never play a contact sport again.
A lot changed for me, but I gained so much from the past couple years. I learned the difference between someone who asks you how you're doing and someone who asks and waits for an answer. I learned to be more forgiving of myself. With the help of some of my best friends, I am slowly gaining some true confidence. I learned to be kind to every single person you talk to and to never judge someone or their situation until you have been in it. I learned that people who care about you will make time for you, no matter what. I learned that there is always more to give, always a way to be kinder, more understanding, and that it’s ok to need protection and support on your worst days. I learned the power of an honest and simple apology. I learned that sometimes you have to laugh about the serious stuff, even if it is your brain. I learned to always reply to text messages, because it can make a difference. I learned that self care isn't selfish. Most importantly I solidified in my mind that I don’t regret anything, I learned so much, and I didn’t do everything perfectly, but I don’t regret it.
I blame no one, instead I am abundantly grateful for the friends I have, and the experiences I have been through. A few years ago I probably would have said I have tons of friends but no one I really connected to. Now I would say I have less friends, but a few whom I can trust, and that is my biggest success. Concussions changed a part of my life, but it is what it is, and I chose to make the most if it. Everything happens for a reason, but a friend once asked me if I was mad at all the people who didn’t stop me from playing and getting hurt. And I always have the same answer – They never would have been able to stop me, I loved sports too much, I needed to stop on my own. For those reasons, and all the experiences I have stated, I blame no one, and regret nothing. Concussions are a big deal and they affect every part of your life, but sometimes the only option is to put one foot in front of the other, and for me, that has never been a bad option.
by Shannon Cambell
It’s extremely difficult for me to comment on life after a concussion.
There’s two reasons for this. First of all, head injuries manifest in many different ways. Often, the symptoms and recovery period vary from person to person. Furthermore, I have very little specific memory of the months immediately following my accident.
In the aftermath of my concussion, I experienced the typical physical symptoms: fatigue, headaches, nausea, balance problems. Thankfully, these symptoms were fairly short-lived and I returned to seemingly normal life quite quickly. The funny thing about concussions, however, is that they can have a resounding impact on the deepest levels of the human brain. As a result, concussion victims often forget how to learn. In my case, I think it was probably the dangerous combination of the inability to retain information and the inability to concentrate that made this true.
Rebuilding the Foundation
I struggled through more than a year of a full-time course load before I realized something was off. It didn’t seem to matter how much time I put into readings and other studying; nothing ever stuck. The only measurable progress I was making was in my study of Portuguese, which I was pursuing on my own time.
Wait a minute.
I was making progress?? There had to be a reason why I was successful in this area of study over all my others. It was extremely frustrating, struggling to no end in school while achieving inexplicable success in a subject that would have no direct impact on my academic standing.
Learning a language requires a special combination of many methods of absorbing information. Any experienced student of languages will tell you how important it is to interact with other people in the language that you are studying. That is, you must immerse yourself. I had dedicated myself to this method of learning. I was spending a significant amount of time each day essentially living my life in Portuguese.
It took me a while to realise that it was this approach to learning to which I should attribute my rapid jump to conversationalism. I dawdled, entertaining the unapologetic notion that it was my natural ability with languages that had contributed to my early success. Eventually, I came around to the fact that learning something new comes down to one thing: the concept of immersion learning.
The next step I took was to apply this approach to my other subjects of study. It’s not always clear how to accomplish this, but I’ve developed a pretty good technique. When learning a language, you try to live your life as if you are a native speaker. The language needs to become a part of your everyday life. This means that you should incorporate whatever is it you’re trying to learn into your day-to-day activities. For me, this meant addressing each problem that my life outside of the classroom presents as if I was already an expert in my subject of study. This frame of reference not only changed my attitude towards these issues, but also had me seeking out new information beyond what was taught in the classroom. The involvement of my own life drove me to be a more thorough, creative and positive student.
The use of practical application is not an unfamiliar concept to many experienced educators. Problem-based learning is a self-directed form of study in which students work to solve a problem for which there is no defined solution or answer. This encourages critical thinking, personal research and continuous learning.
Immersion learning that many language learners recommend is a form of problem-based learning that forces us to address communication issues before we have the capacity to do so. When we don’t know a specific word, we learn to talk around it and describe what we mean. Our approach to learning other subjects should reflect the experience of learning languages. First, we encounter a problem. We must then discover what knowledge we need to directly solve the problem, and determine other potential solutions.
Immediately following my concussion, I believed that my mental capacity had been permanently damaged. My discovery of problem-based learning showed me that I wasn’t damaged. I was simply different. While this approach to learning is certainly useful for all students, my hope is that it will be specifically relevant to other concussion victims. Anyone who has suffered a concussion will be familiar with the despair that comes with post-concussion syndrome. Remember that recovery is always possible when you embrace the person you have become.
"Times of great calamity and confusion have been productive for the greatest minds. The purest ore is produced from the hottest furnace. The brightest thunder-bolt is elicited from the darkest storm."
Charles Caleb Colton
Sources and further reading:
Towards a language-based theory of learning, M.A.K. Holiday.
Foundations of Problem-based Learning, Maggi Savin-Baden and Claire Howell Major
Place-based Education: Learning to Be Where We Are, Gregory A. Smith
I am often brought to tears when I encounter testimonials of others’ experiences with concussions and brain injury. I cry because I feel for them and their pain, because I am inspired by their strength, and because I feel in those moments the most comforted and hopeful. Saying I feel part of something sounds wrong—this is not a thing anyone would choose to experience. But I feel comforted knowing that as much as it is shared pain and distress, it is a shared experience of survival and growth and pushing forward to find the cans in a journey that constantly pushes can’ts in your face. I feel very humbled to be writing in solidarity with people whose words, wisdom, and kindness have helped me so much.
I was thinking the other day, about how we mark our growth in years. It feels so rigid and inaccurate a measure. Growth happens day by day yes, but growth and change have become clear to me over the past few ‘years’ as anything but linear and consistent in tempo. Growth can happen in abstract chunks of time, following the ignition of a catalyst moment—some minute or hour whose impact somehow measures more than its predecessor. I have grown and changed more in eight months of being twenty-two than I have in any entire year of my life.
I got my concussion January 26th, 2016. I like to say I lost a fight with stairs—I suppose it adds a certain level of comedy to the sometimes confusing truth that my life changed so much because of one misstep. I feel aware that this makes me a concussion ‘noob,’ and that the road ahead is long. This makes me all the more grateful for the support and wisdom of those who are months and years into this experience.
My symptoms showed within a couple days, a fact for which I am immensely grateful. I was set to leave for a semester abroad in Europe only a few days later, and I am so lucky I did not get on that plane. I am also lucky that I was forced to rest so completely that first month, as resting during that period, I have learned, is critical. I am certainly not by nature someone who slows down, but I was physically unable to do much other than lay in a dark room that first month, leaving my house only to go to the doctors, the hospital and the neurologist.
I do not hesitate in saying this first month was the worst of my life as my injury manifested itself in relentless pain, discomfort and immense distress. ‘But what do you feel?’ This question drove me nuts, as I found and still find it difficult to articulate. To attempt: the physical experience for me included a neck injury, and constant headaches, vertigo, nausea, extreme sensitivity to light and sound, tinnitus, sleep dysfunction, and difficulty with cognitive tasks, focus and short term memory. In the first month, they were constant. Now, in my twelfth week post-injury symptoms remain constant but luckily vary in combinations and intensities.
I knew little of post-concussive syndrome and brain injury prior to my accident and did not know about the mental and emotional toll that they can take. Now, I haven’t taken science in six years, but the neurologist explained to me that my brain and neurochemistry had been impacted and imbalanced. I was just walking up stairs. Suddenly I was/am depressed, anxious and quite frankly, often very afraid.
My limited knowledge of concussions was based on a few cases that had gotten better in a week or two and though I was increasingly informed about the large diversity in severity and length of recovery, it took me until very recently to accept the truth that my injury is going to affect life for a long time. Personally I have always found it difficult to speak of my own experiences as hard or extreme, and tend to downplay negative experiences, even to myself. I feel aware things could be so much worse for me, and I feel gratitude for all that I have. I have learned however, the importance of acknowledging and owning what happened to me. I have learned it is impossible to recognize the strength and victories, if I do not equally recognize the trauma and difficulties.
In week 8, a friend sent me an interview (check it out here) with Jane McGonigal. Hearing her speak in this interview was a very moving experience; the way she spoke about her concussion was the first time I heard someone articulate an experience so close to my own.
In the beginning of her book SuperBetter, McGonigal talks of ‘post-traumatic growth.’ I was hearing about post-traumatic stress so often, and this concept of post–traumatic growth made me feel alive and inspired in a remarkable way. It echoed the way I spoke of my hopes for my recovery and appealed to my desire for a positive outlook. I want to have that growth. I want to get to the point where I feel the growth more than I feel the stress, and this thought is what fuels me. During this stress, I grow. I will feel better, be better, be stronger. I will be more me.
Yet, it is hard to remember that growth is happening, because stumbling through recovery from concussion looks like trying your best but still living in a body, thinking in a mind, and feeling in a heart that is so suddenly different and broken. It means having a day you feel hopeful about, but then having another sleepless night of nauseating vertigo, tears and fear. It means believing in your own strength but moments later having another breakdown. It sometimes means not being able to think, or not being able to clear the foggy haze of forgetting a word or why you’re walking across the room.
Some days it feels like a losing battle and progress can be hard to find. It’s always there, but it doesn’t register if you don’t readjust your thinking. Being able to stand and shower and have the lights on registers to me as normal but weeks ago I was struggling to bathe with the lights off. It’s can’t can’t can’t—but goodness look where you started. Before, I was stubbornly independent, working or in school, reading and writing tons, taking transit, running, going to cafes or restaurants—a whole list of things I can’t do right now. Comparing where I was to where I am now is unproductive and unrealistic. I am trying to arm myself with the mindset and the support system I need and the doctors and therapies I require—and trying to focus on the victories, the growth and the cans. Ultimately I am learning to accept that everything is different now, but that’s okay.
There is not a day or night since I lost that fight with the stairs that I do not experience the physical, cognitive, mental and emotional reminders and obstacles of my concussion. I am changing. I fight to embrace the changes it is making, they are me now, it is never not going to have happened and I am never not going to have been changed by this. I am growing. It is far from being over, but that is okay. I have so much more me to become and so much better to be.
April 5th 2013 is a date that has stuck with me. It's funny when doctors ask if you remember the exact date. Do you remember the date that changed your life? Um yes, I do. Duh. So April 5th 2013 means that tomorrow marks 3 years of my slow and steady concussion recovery. What was I doing three years ago today? I remember running up Mount Royale at night, enjoying the warmth of spring. Ask me that question tomorrow night and I'll tell a different story. One of an elbow in the face and a visit to emerge. The four weeks that followed were a whirlwind of studying for exams despite headaches. Pushing through pain was something I had learnt. Most of the time that drive helps me succeed. Those weeks, it was probably the factor that delayed my recovery weeks and ultimately years.
It's not only bad days that stick with us. My concussion recovery has some good days that will forever stand out. The semester following my concussion I was still in pretty bad shape. I was only taking one course. My days consisted of small achievements. Going to the grocery store. Having a conversation with out getting tired. Yet that semester had a special day. I was not the date (some Friday in October) that I remember. It was the things I did. I met a new friend and took the metro to visit La Rouche Art Hive. From there, I visited an old friend who had just moved to Montreal. On my way home that night I stopped by the Yellow Door CoffeeHouse for the first time. These might seem like small things, but let me tell you, for me, it was huge! That night, I went to bed full of energy and inspiration.
In concussion recovery progress can go slow. In can be marked in months and years. Thinking about the days can get you down. If it takes years to mark progress, that is ok. 2 years ago, I was in two classes. 1 year ago I tried to take 4 courses, and ended up having to drop 2 of them. This year, I am in three classes and keeping up with everything. For the first two years I couldn't run. Now I go for jogs and don't get any symptoms.
While I am slowly building up my endurance, I am not trying to return to how I was before. 3 years ago, I played trumpet in a symphonic band, but I didn't know how to play guitar or sing. I loved art, but rarely took out my paint brush. I had a passion for reading, but rarely the time to open a book. Today, I combine these creative activities with the my academic interests and passion for the outdoors. Going back to who I was before would not include these positive changes.
I've come so far these three years. I've learnt not to define myself by the things I do, for those can be lost. Instead I am what I think and who I love. What I think changes, but I will always be thinking, always be loving. My passion for truth will continue to drive me through the highs and lows.
These past three years have had their fare share of pain. I've gone to sleep crying in pain and frustration, unable to complete what should have been an easy assignment. I've felt lost, trying to think, and realizing that even that has been temporarily stolen. But, as a wise friend told me, suffering is an essential part of the human experience. I cannot regret that suffering, for it is a part of being human. I will put my energy into life. Sometimes, this causes pain, but more often, I am satisfied by what I achieve and learn.
So, on my third anniversary of concussion, I have decided to celebrate. I celebrate the health I do have, and the recovery I am every day making. I celebrate all the joy and love in my life.
Often I fear thinking about getting better. A part of me desperately wants to get better, and I am wary to let that part out, lest I am disappointed. Yet today I am optimistic. Today I will say, concussion GO AWAY! I am going to celebrate my 3 year anniversary with a nice run up Mount Royale tomorrow night.
It was my first Christmas at home in 10 years. My family always has a big party with all our relatives — aunts, uncles, friends, turkey, beer, stories, laughter.
I can hear people start coming in the door upstairs, asking, “Where’s Adam?” The sound of their footsteps is like thunder. It’s breaking my brain. I’m supposed to be the big-shot pro hockey player, telling crazy stories about my adventures playing in Europe.
Instead, I’m hiding in the basement.
All the lights are off. I’m literally in the fetal position on the couch with my earplugs in, my eyes closed.
I’m uncontrollably sobbing.
My mom comes down to check on me, and she sees that I’m in the middle of another impromptu mental breakdown. She knows there’s nothing she can do to help. She just sits next to me like moms always do, and she hugs me.
“I’m sorry,” I say. “I’m so sorry. I don’t know why this is happening.”
“No, I’m sorry,” she says. “I wish I could help. I just wish I could help.”
We sit there and cry.
We are thrilled to present this article written by Belle Kim outlining some of the work our club has been doing in to provide concussion support at McGill! Check out the original article here, or scroll down to read it!
Belle Kim for Her Campus McGill (HC McGill): What is SLICE?
Abbie McLellan (AM): SLICE stands for Sports Legacy Institute Community Educators. Our parent organization is Sports Legacy Institute, which focuses on concussion education, policy and research. We are Community Educators, meaning our members will be trained in the official SLICE presentation, and present what they learn to middle schools and high schools. The goal is to educate our community, including the McGill student body, teachers, coaches, and parents about what a concussion is, why concussions are worth caring about, and what can be done if someone gets a concussion.
HC McGill: Why the focus on sports?
AM: Sports have caused concussions to come into the spotlight in recent years, making it an ideal topic to get the word out, especially to young people. Also, sports injuries tend to be under-reported because athletes have grown up in the culture of sucking it up for the team. If we can use the topic of sports to educate young people about concussions, hopefully what they learn will stick with them and help them in future situations.
HC McGill: Who is SLICE geared towards?
AM: SLICE is geared towards university students interested in educating younger students about concussions. Special interest may stem from students in fields such as, but in no way limited to, kinesiology, neuroscience, anatomy, and physical education. A student who has already received a concussion may also be interested in sharing their story. In addition, our club provides support to students who are dealing with concussions.
HC McGill: How did you get involved? Have you had any personal experience with concussion? How did you deal with it then?
AM: I got involved with the program after getting a concussion on April 5, 2013 while playing basketball at Rez Warz. Now, almost 19 months later, I am still dealing with symptoms from that concussion. This post-concussion syndrome probably occurred because I didn’t handle my concussion properly. I studied for four exams right after getting hit, not realizing that someone with a concussion needs mental rest as well as physical. I realize now that I was totally unprepared to handle my treatment, and saw that other people who had concussions were in similar positions. The thing about concussions is that recovery is totally dependent on proper treatment, but once you get a concussion, your ability to make smart decisions is impaired. As a result of not treating my concussion properly, I canceled all my plans for that summer, and only took one course when I came back to McGill. My life has been profoundly impacted. Some of those impacts have been good, for example, I got back into art and learned to play the guitar. In that sense, I dealt with the aftermath of my concussion very optimistically. After my experience, I saw it as essential to better educate my community so that next time someone gets a concussion, they will know that it is a serious injury, and will have the tools to treat it. At the time of my concussion, McGill didn’t have any student support group, so I decided to bring the SLICE initiative to our campus.
HC McGill: You must already have a lot of students interested in joining SLICE. How can one get involved?
AM: You can check out the website to learn how to get involved. Right now, the two main options we offer are to become an educator, or join our support group. The great thing about becoming an educator is that even if you just do the training, the topics covered in the training are essential for all people to know. The support group is open to people with concussions, but also friends and family members of people with a concussion, in order to better support them in their life.The club is also working on a coalition between different medical experts in the field of head trauma. This will help make sure research doesn’t overlap, but also help treatment become more interconnected. Students who are interested in the research side of concussions can get in touch at firstname.lastname@example.org to find out more.
HC McGill: I know that the club just begun this semester. It must be an exciting time for you. Can you tell me what the club's hopes and goals are for the future?
AM: I think the biggest goal for us is that if a student gets a concussion on campus, they will know the steps to take: registering with MyAccess, talking to their advisor, getting accommodations, and finally resting. Or, if they don’t know what to do, they will know that we are here to help and answer all their questions. It is very difficult for students to stop studying during the school year, but sometimes rest is the most important thing. If our club can be the one to encourage and support students in the decision to rest, then we have succeeded in tackling the concussion crisis.
HC McGill: Are there any events coming up that you would like the readers to know about?
AM: We are very aware that McGill students are hitting the books for finals! Thats why we have decided to kick off our first big training session of the school year in early January. Coming to training is a great way to educate yourself, whether or not you plan on giving presentations in the future.
Check out the McGill SLICE Faceook page or their website for more information and to share your concussion stories, among other's shared on the website.
You are constantly dying. Your cells are, anyways, and they're what make you, you. Right? But if you are constantly physically changing, how are you still, mostly you?
Just after the first day of university, before the novelty of higher-level education and meeting strangers from across the globe had even worn off, I needed to go shopping for dorm supplies and groceries. I borrowed a bike, but not a helmet. This was when I made my first mistake.
On my way home, I was hit by a car. What happened afterwards was a blur, at best. Dizzy and disoriented, I trudged up the hill with my bicycle and bruised groceries beside me. Because I'd had multiple concussions before, this ostensibly resembled one of the minor ones and I thought I would be okay. Mistake #2.
I continued to go to class, listen to music, go to the gym, and even train at ultimate frisbee practices. Mistake #3.
A week after the incident, my hands starting shaking uncontrollably, my head pulsed with my racing heart, my nausea manifested itself into vomit, my legs were numb, and I felt as if I had ridden a rollercoaster for six hours straight. Something was seriously wrong.
After visiting multiple doctors who determined that I was indeed suffering from a concussion, I was ordered to bed rest. "Vegetation" was the exact word Dr. Sung had used. For three weeks, I was confined to the darkness of my room. This darkness began to seep into my mind as well, and the lack of human contact, music, and entertainment took its toll on my emotional well-being.
What many people don't realize about concussions is that they consume your life. They swallow up what defines you and disintegrate who you are. It feels as if your life has been set aflame, not only because of the physical pain the fire causes, but also because of how it spreads throughout your life. And even when you try to fix yourself, progress is as slow, excruciating, and frustrating as a lone firefighter's battle with a raging wildfire. A concussion can destroy your happiness, your self-confidence, and your hopes and dreams, as quickly and easily as a match is lit.
Since my concussion 4 months ago, I've struggled with simple math, perpetual headaches, and being able to remember details, everything from enzymes involved in DNA replication to people's names (and I used to be superb with names). I can't think or focus, I can't exercise or do any of the things I'm good at or enjoy, I'm nauseous more often than not, and I'm dizzy always. I sleep for twelve hours each day but am still exhausted. Mostly, I feel like I'm a different person than who I was before, and I wake up each day hoping, wanting, wishing, that I would just feel normal again.
I graduated high school counting my many, many blessings. I was athletic, playing at provincial and national levels, I was intelligent and diligent, I was ambitious and motivated to achieve my lofty dreams, I was making a difference in my community, and I was surrounded with friends and family who laughed and loved, and I too, laughed often and loved always.
My concussion has stripped me of most, if not all, of these blessings. And because they all contributed to my visualization of self-image and self-worth, I've also lost pieces of myself. The fear of never knowing if I'll find them again scares me most.
I received a concussion April 2013 playing basketball at a McGill Rez War event. I didn't get the chance to rest, instead writing 4 exams, and found myself helplessly upside down once summer hit. I canceled all my summer plans, and ended up returning to school in the fall for one class. Recovery has been slow but curiously rewarding.
What's In A Name?
The English language, for the most part, is equipped with a word for just about any feeling, apart from long vague concept like the German schadenfreude, which is the guilty pleasure experienced when something bad happens to someone you are friends with, but also jealous of. Even those few missing words seem easily navigable by employing a sentence to describe them, as I just did.
The first time I stumbled upon a concept I couldn't properly communicate through words happened when I received a concussion playing basketball.
I have found such a concept that has given me much grief in describing. Perhaps that is due to my concussion itself, which at times blurs my thinking, but I think it is more profoundly related to my concussion, because this concept is actually my main concussion symptom. No past medical experience has given me the vocabulary to describe it, because it is specific to my head injury. I guess the list of concussion symptoms is made by doctors and medial professionals, not the ones with concussions. Perhaps they never realized to ask about something more, something that was not on their list. It could also be that I experience a symptom unique to myself, just as my entire concussion journey was unique. None the less, I am going to try my best to communicate what relatable experiences I have had.
I am going to try my very hardest to use, not just a sentence, but many paragraphs, to describe a symptom that I hope will, in years to come, have its own unique name and its own unique scientific understanding and medical treatment associated with it.
As I started seeing doctors, I found myself bombarded with a list of symptoms I was supposed to identify with. Dizziness, fogginess, fatigue, headaches, pressure in the head… The list went on and not once did I feel confident in the identification of my true symptom. It was not that they are wrong, all of them have been felt at various times in my experience. However, I knew that they were not exactly right. They all described things I have experiences before my concussion, and a concussion was something entirely different, much more than frequent headaches and fatigue. If you asked for a lime and I have you a lemon, you'd most likely manage. Yet you would notice a difference. Its is this level of difference that leaves me feeling uncomfortable that my concussion cannot be described. I am a girl, equipped with a lemon, trying to convey the taste of a lime.
To start let me say that if you mixed a light headache, a bit of dizziness and fatigue, and maybe a pinch of pressure together in a fog and then poured that into you head after running in the wind and sun all day long, you probably would have a good starting point for understanding a concussion. For simplicities sake, one could just say headache and be done with it. But I think the uniqueness of this hard to grasp symptom is worth dwelling on, in order to address the uniqueness of concussions themselves. Where a concussion varies significantly from a headache is that it is not exactly the pain that makes it debilitating. It is more like it is actually debilitation itself, an internal protest to continuing the activity at hand. Sometimes I find it causes my speech to slur, as if by slurring my words and keeping my mouth from opening fully, I fool my brain into thinking I am not actually talking. When this happens, I become overwhelmed by an internal cringe and usually disengage from whatever activity I am involved in. And here is what truly sets it apart form a normal headache. In most cases, (exempt the most extreme), ten minutes of meditation and silence result in a decrease in symptoms. This "headache" I experience is acutely responsive to my activities. If you got zapped and random, you would keep active. But if you got zapped in direct correlation to your activity, you would stop that activity. But what about when that activity is life? My closest relatable relatable experience is not actually a headache, but the removal of my wisdom teeth. For a week or two after I had them out, I complained not exactly of pain, but more of an inability to truly open my mouth, as if elastic bands held my teeth together. Maybe what I am trying to convey is that despite the pain, it is not always the pain that is the main symptom. My head hurts, but more significantly, it resists. This often leaves me grappling to communicate to my friends ideas that are clear in my head, but 'resist' expression. The mental work of putting them to words is to much.
As I heal, I find this problem decreases, yet its often in the back of my head, a slight buzz, and I know its still here. But what is scariest of all is when I don't notice it, and it seems as if the concussion has become a part of who I am. To realize that this state of decreased health has become my new reality.
Now I know finding a word for this symptom will not help convey a priori what a concussion feels like anymore than spinning in circles can emulate alcoholic intoxication. But if what I describe is not specific to me, if it rings a bell to other people with head injuries, then finding a word for it may make people suffering understand that they are not alone, and facilitate communication for a brain that is struggling to do all the things it once took for granted.