Michael’s Update

Two years ago, Michael wrote about his battle with PCS. Today, Michael has written a follow-up of his continued battle with Post-Concussion Syndrome and the struggles he faces in achieving government support.

Hi, my name is Michael Corneau. It is May of 2019, I’m 20 years old, and since October 15th, 2016, I have suffered every single day with post concussion syndrome (“PCS”) due to a traumatic brain injury (“TBI”) I sustained during a hockey game. In 2017, Concussion Legacy Foundation Canada featured my story on their webpage. In that article, I wrote about my early experiences with my concussion and about the many ups and downs throughout that period of time. Two and a half years of this rollercoaster ride brings me to write this update. Think of all you have achieved in the last three years, the experiences you have had, the money you have earned and the relationships you have cultivated – old and new. For me, the answer to these questions is simply … none. My life was put on hold in October 2016.

One thing that bothers me more than anything else, that’s come along with this whole ride, is speaking to people who don’t quite understand the severity or impact this truly has on my everyday life. People do not understand the long-term impact PCS has on me and the endless treatments I have tried. I can’t blame them though, it’s an extremely complicated injury, that you can’t see from the outside. A broken bone generally has a short, fairly precise recovery timeline with a visible cast or crutches, a cut or a surgical wound has visible stitches and the loss of a loved one is directly related to visible grief. How do I explain what my daily struggles are on a regular basis, and expect people to understand? I can’t, but I try. The loneliness some days is crushing.

On days where my symptoms are worse than my average, I can barely make it through a trip to the grocery store without feeling the repercussions. Moments like that, where I can’t accomplish a simple task, are very frustrating and depressing. It makes littles chores that I need to take care of, into nearly day-long projects, due to downtime I need to take in between. There’s nothing that can prepare you for the lifestyle change I’ve had to go through. Right when I feel I’ve made forward motion, it seems that shortly after I’m thrown back more steps than I advanced.

My TBI occurred in my graduating year. I started Grade 12 in September, 2016, was injured in October, 2016, and have not been able to go back to school since. I am now 20 years old with a Grade 11 education. I have some good friends that have remained in my life and when I get moments to catch up with them and talk about the time apart, I am constantly reminded that I haven’t made progress for my future. I haven’t even graduated high school, but my friends that I was supposed to graduate with, are finishing their sophomore year in post-secondary, or are gainfully employed. Unfortunately, with my recurring symptoms, it is nearly impossible for me to commit to a proper work or school schedule, even with flexibility and accommodations that we’ve tried to make.

This injury runs my entire life – it dictates how I will feel, what I can do, how I sleep, family time, social life, you name it. It’s a constant weight on my shoulders. Where do I go from here? Will this feeling ever change? I know things could be worse for me, and I’m grateful that I’m still here but sometimes the gravity of all that has happened to me brings me to tears. During those darkest days, my mom comes and sits down on my bed, rubs my forehead and tells me it is all going to be alright. The love in her eyes is always shaded with worry. This is our new norm.

Naturally, human interaction is necessary to live a sane life, whether it’s for light conversation, new perspectives, or placing an order at your favourite restaurant. I can’t help but to acknowledge the seclusion I’m facing, away from my normal life. A feeling of loneliness, creating a darkness surrounding your mind with negative and unclear thoughts. Your own mind becomes your worst enemy, with thoughts that can plague your positivity, suffocating yourself with questions that are fabricated by that negative energy. After having everything taken away, removing the social life I used to have, the sports I used to play, my plans for a future, how do I fill that void? I wish it was as easy as just finding new hobbies, but it just isn’t.

Obviously, here I am, capable of typing these thoughts out for short periods at a time, but still to this day, I am very limited with concurrent stimuli. Whether it’s the weekend and I help my mom with errands, or it’s a holiday and I see some family or friends, I find my symptoms are amplified, rendering me incapable of doing anything exerting for days after. I wanted to touch on this because weekends for most people are spent in your social lives, doing your cleaning and grocery shopping, or just anything you may not have time to do during the week. Mine are spent resting enough to go to the grocery store then coming home or seeing some friends or family, then sleeping for 18 hours.

Think of this as your fight or flight response. For example, you have an important meeting, interview or presentation. Your body has a fight or flight response, sometimes your palms will get a little sweaty, heart beats faster, scrambled thoughts, even tightening muscles. Subconsciously, your body is assessing the situation, figuring out the most efficient way to overcome the obstacle. You will either avoid it and flee, or you will face the upcoming task. When you are in a post-concussive state, dealing with symptoms long after the brain injury, this is how I perceive everyday tasks. My brain is “stuck” in this flight or fight mode – my brain is always scanning for dangers so there is never peace of mind nor does my body release the stress of the perceived dangers. At home, there is quiet and safety. It is just my mom and me.

In all likelihood, if you or someone you know has ever had a concussion, you know most of the common effects. Generally, if it’s your first, then you were likely told to stay away from stimuli to let your brain rest and heal. Within 4 weeks, the odds are that you have healed and returned to your everyday life. Mine used to be hockey, family, friends, and then probably hockey again, but that was taken away from me in my last injury. A blindside hit to the head put an abrupt stop to everything I normally knew. So now what? I’m mentally and mostly physically incapable of working regular hours, I have a very hard time sitting and reading/writing, and even seeing family and friends consistently. Short highs and very long lows. I’ve spent the vast majority of my recovery time fighting to feel ‘normal’ again.

Eventually, since I’m only human, frustration and irritation set in. A constant cycle of “hopefully tomorrow is different”. I like to think it’s given me time to practice patience, to have faith in the process, but there are days where it’s not as easy as taking a deep breath. When you feel like you’ve put your all into a recovery that is very hard to control or accelerate, it feels very defeating. It has made me into a dependent adult.

I was prescribed medication in the form of pills at the beginning of this, and nearly every single day, I need to take a handful at dinner. No matter what, it has to be taken. Why? Well because of the pain and chemical imbalance in my brain. Pretty straight forward right? Not exactly. These medications have such a heavy impact that I cannot go a day without them. My body will actually shut down and go into severe withdrawal. Let me clarify. I got injured, needed medication to help cope and recover easier, to which I was then prescribed the bulk of my pills I still take presently. When my symptoms worsen, I get more pills. Well a couple quick “fixes” and here I am. My symptoms are “managed” under a chemical blanket, one that I would have a hard time living without.

I have tried most therapies available to me, with only temporary relief and then a noticeable worsening shortly after. Countless hours of effort, planning, and a little luck on my side have gone into going through these appointments. The little bit of luck because as things worsen, it becomes much harder to make it to these all over the city. To list a few of my symptoms I encounter regularly, severe head/neck pain, anxiety, constant muscle/brain fatigue, and depression. Unfortunately, all the symptoms fluctuate based on the stimuli and the way my brain is handling it. I have participated in some concussion-based studies to assist in research and to bring awareness to this devastating injury and my hope that it will help others in the future. My mother and I speak to as many people as we can to try to find new treatments. The latest option is a $4,000, 9-week treatment plan at a Brain and Spine Clinic. This treatment is not covered by insurance and is not scientifically proven to work. So why would I try this? Because there is no one treatment, no one pill, no one doctor who can “cure” me. I have exhausted all paid-for treatment plans and it is now time to delve into the costly unknown. What works for one person does not necessarily work for another. If not for the limited resources of a single parent, I would try anything that could possibly give me my future back.

I’ve never been one to compare myself to others, because that creates an unrealistic, inaccurate version of yourself. I’ve never been one to belittle someone based on their problems, comparing theirs to mine. But sometimes, I need a little help. There’s only so many things family members and friends can do to help out and facilitate daily tasks. I’ve tried working, I’m unable to do so consistently, and generally that doesn’t work with an employer that needs you to fill in hours. So where do I get money? I mentioned I have become a dependent adult earlier. Our government assistance programs? No, my mother. She works tirelessly to support me including working as much overtime as she can without leaving me alone for too many hours at a time. She covers all the costs of things that I need to pay for, because that’s the person she is. You might think, well parents will always want to help their kids. That is true. But if my mother is required to support me 100% as an adult, does that not mean I should qualify for government assistance, or that she should? Again, no. For the past year, we have submitted applications both federally and municipally for disability coverage. Every few months, I receive a letter indicating that my claim was denied and that additional medical information is required to show a “prolonged and recurrent disability”. So, we start the process over again with more doctor visits and updated medical reports. We have done everything asked of us and submitted updated reports as soon as requested, then the next letter comes. Again, more medical evidence is required to substantiate a “prolonged and recurrent disability”. So back to the doctor and new medical reports. Can you see the pattern? I was not deemed “disabled” enough to qualify for any financial assistance. Nothing like a gut-punch, mailed in to me, informing me that what I am going through, every single day for almost 3 YEARS, is not valid enough of a disability. It’s truly deflating, spending as long as I have feeling this way, knowing that our own government has neglected me.

I wanted to write this out, to project some of my thoughts into words, on a page, for people to have an inside look at this long road of recovery. It’s not too complicated, I’m in discomfort every day. Whether it’s muscular pain, anxiety and/or depression, there is always something to remind me that my life is no longer what it used to be. I’ve heard it a million times, “you just need to find your new normal”. For now, my new normal is this.

At the end of the day, I’m still here, with a support system that has pushed me forward every inch of the way. I hope that if you take away anything from this, it is to just be there for those who need you, in any way you can. Anything makes a difference. I can’t thank the people in my life enough for the help I’ve been offered, because there is a very slim chance that I’d still be me without them. My mom especially, she will do anything for me not to worry about what’s next, and truthfully, I have no idea what’s next.

 

Michael Corneau

Dodging Punches and Raising a Family

Jean-Martin Gauthier has immersed himself and his career in the world of boxing and combat sports. We talked to him to ask what the current outlook of concussions and boxing are like in Canada, as well as his own experience with concussions and how his recovery has affected his young children.

 

Can you give us a brief background of your involvement with sports?

I went through the regular process, played minor league hockey from age four until 17 and was on and off training in boxing gyms during the offseason. Hockey was my first love and quickly branched with Boxing. In both sports I went from fan to athlete to coach. I was President of the Senior Hockey Team we have here in New Brunswick for a little while, and am now working in an executive position with the CPBC (Canadian Professional Boxing Council) & the CWBA (Canadian Wheelchair Boxing Association). I am also occasionally working with the NBCS (New Brunswick Combat Sports Commission) as a dressing room inspector. I really love the time I get to spend with the fighters before fights. Dressing rooms before fights are a very special place and I am very grateful to have the chance to help out, meet great human beings and work in an industry that I genuinely love and respect. I get to work in different roles within different organizations.

 

Working in the world of boxing, where the object of the sport is to knock your opponent out, how are concussions handled and where do you see the need for improvement in the sport?

The Commissions in Canada (governing bodies of combat sports) have collectively moved forward with their own post-fight concussion tests and the officials are constantly made aware to always protect the fighters’ health. The general public also need to wrap their heads around the hard reality that fighters will fight regardless of what injuries they have received in the past. If they were ever some drastic measures taken to stop the sport or put ridiculous guidelines to make the sport “safer”, fighters would still find places to fight. Fighters want to fight and we need to protect them as officials and decision makers. The real work, the real education, needs to be directed to the boxing gyms. Time and effort should be put into educating general boxing gym members, so they understand what to look for and recognize if a fighter is injured. Coaches should also be trained and made aware of concussions, symptoms, and their effects.

The real damage happens in sparring. The fighters take way more damage in the gym than they would have taken in a sanctioned fight. By the time an average fan sees a “big knockout” in the ring, it usually means that fighter probably went through unnecessary punishments in their training leading up to the fight.

Now, what coaches would say is: “if we don’t train hard we won’t fight hard; fighters can get knocked out if not well prepared.” My response is that if a coach doesn’t recognize the difference between training hard and unnecessary damage then they either don’t know their fighters well enough to recognize when they are hurt and shouldn’t be in a position of responsibility, or that they have the wrong type of pride. Bottom line is, when we say you don’t “play” boxing, it only applies to the fighters. We need to put more responsibility and training on educating gym owners, members and the teams of the fighters. Sanctioning bodies can only control so much and a fight night is only one night. What about the time in between? The Commissions and the sport as a business have improved a lot in terms of fighter safety and post-fight diagnostics, but a fighter’s ‘tough guy’ mentality has not; it’s in a fighter’s DNA to fight as hard as possible. Teams, gym owners, and gym members need to hold themselves accountable and protect their fighters’ heads between fights. The concussions that are reported are treated properly – but only when reported or diagnosed. The Commissions have learned from recent injuries and measures have been taken to check on fighters after each fight, now it’s more a matter of culture. A diagnosed concussion that gets reported to the Commissions is treated very seriously and then a medical suspension gets applied. If a fighter relies on their fight’s income and sponsorships, that fighter may choose to not tell their team in order to make ends meet. There is nothing financially protecting a fighter once they are medically suspended.

 

What has been your experience with concussion?

Now here’s the thing; yes, my most recent concussion happened in a boxing gym, but all of my previous six concussions happened while playing minor league hockey and the infamous boxing matches that occurred in change rooms amongst teammates with gloves and helmets on.

For the hockey concussions, my parents really didn’t know any better. It was a different time (I’m 35) and for all we knew, it was a real privilege to be playing hockey nine months a year (summer AAA) and to box in the offseason to stay in shape.

But for my most recent concussion, I got to experience a family lifestyle, that some people reading this would never allow themselves to live. My forced recovery made me realize that although I had people around me supporting me as an individual, they did not support concussions. It was almost like a cultural thing – some people believe in Jesus, some in Buddha and some believe in concussion the very same way. You (reading this) will constantly have to prove, defend, and protect your concussion symptoms from “the non-believer”. From personal experience, I would suggest to accept that fact right off the bat. I would hear things like:

“You look fine though”,

“If you’re on sick leave how come you never go to the doctor”

And respond with:

“No, I don’t have a fever”,

“No, I’m not limping. All good there, nope not vomiting.”

“No, I don’t need to go see the doctor every week; it’s a process”

“Nope I can’t work, I get migraine quickly”

“No, I can’t drive and you shouldn’t want me to drive anyways.”

Those were my regular responses as a kid. Growing up, my experience was as good as it could’ve been at the time and place I was. As for my latest concussion, my whole experience was pretty much an epiphany as it has changed my family life and work life for the better.

What was your recovery like?

It was very effective to say the least. The first weeks of cognitive rest were incredibly hard and it took me forever to progress to the next step. Then I dropped back to complete cognitive rest again; back and forth. At first it was hard to actually stick to the recovery plan and explain to my entourage that I was going off the grid for a while. Then came the realization of “how bad” my brain actually was. Then came the odd panic attacks when thinking about money and my professional future. So, I had to block those thoughts for a while. I slept a lot and discovered the beauty of podcasts during that time.

The best part of the recovery was to spend time with my kids and catch up on lost time. It also helped me to grow as a person, build a thicker skin, and to assume the consequence of my actions. It was also tricky at times: meaning that a 2 year old toddler doesn’t really understand the word “migraine” and my oldest loves to play and stay active. I box with my daughter and play hockey with my oldest son. For a kid that sees and talks with their dad, it’s all the motivation they need to find fun activities to do. We learned how to channel that enthusiasm.

The recovery itself it’s fairly simple though; it is hard to stick to the program and learn to live with the new lifestyle. At the end of the day, lots of positives came out of my recovery. I shortened my social circle, I got to see my kids more than I ever did before (except for my daughter, I took the first year to stay at home with her while her mom went to college). I created a company out of thin air inspired by my kids, and learned so many new skills. Yes, I can’t do everything the same, but you win some and you lose some. I’m still technically on sick leave right now and waiting for my last MRI, but I don’t just “look fine”, I feel much better and really at the end of the day, it is what it is.

 

How did your concussion affect your professional life?

Well if I would have stayed at Goodlife Fitness, worked a regular job, it wouldn’t have changed a lot. I probably would have gone on a medical leave while keeping my benefits, would have had a substantial income and guaranteed employment upon return. But prior to this concussion, I left my Goodlife career behind and focused purely on making a living out of boxing and hockey. In that regard it changed a lot regarding my professional path.

For starters, I can’t box for fun anymore so I can’t be a boxing coach in a remote community. I figure I can probably only survive three or four more big fights and I’d like to save those. I also had to change the way I communicate with people – I learned to draft mock emails or texts and wait before sending them. Obviously, my mood changed and I do get irritated easier, so I learn to write my angry emails, delete them and re-write a separate email or text. Sometimes it can take up to four emails before the emotions are out. I had to shut all notifications on my phone for four days just to fully focus on this interview, so my response time is definitely different. But the biggest effect by far is the amount of sleep required to do what I have to do, and the amount of energy and concentration needed to work. Sometimes it means that it can take me up to 48 hours to reply to a text. It takes me forever to catch up on emails.

But that’s the best version of me that I have to offer, so people working with me can either live with it or move on. I tell people that no, they don’t have to be ok with the delay, but then again, they don’t have to work with me either. As bad as it sounded at the time, I had to defend my right to not reply right away if I couldn’t. I re-aligned expectations and made my close network understand that my behavior wasn’t a reflection of the importance of our relationship, but rather a consequence of my concussions. My disappearing acts are never a reflection of the importance of any specific relationships, it’s about my inability to always respond immediately. Sometimes, I have to go as far as not replying to a conversation because of the headaches and nausea it causes me.

Another way that it has affected my work life is that I had to learn to pause longer before speaking. As a Director of Marketing and Business Development for the CPBC, I need to remove myself from boxing drama and stay ahead of the pace for new opportunities and better relationships. Relationships that require time, effort, and patience, which I have limited amounts of. Resting between calls and busy times at work helps a lot. As Chairman of the Board with the CWBA, I’m the one that needs to advise and be open to all perspectives. I always make sure I have my emotions in check and rest if I have to. An emotional answer can be more damaging than no answer at all. It’s a re-adjustment for sure, but I always look forwards, towards a bright future filled with meaningful relationships and tangible accomplishments. My concussion made me find and adjust to new ways of working and making ends meet.

 

How did it affect your personal life?

It costs money to recover from a concussion. The biggest impact on my personal life was that we took a huge step back financially and lost our house because I went completely broke. Prior to living the Hurt Business lifestyle (making a living in the combat world) full time, I was the Assistant General Manager for Goodlife Fitness in Dieppe, NB. I voluntarily quit my career after almost three years, to move into the village and focus purely on my kids and working in the fighting world as it Is my passion, my dream. This means that I did not qualify for employment insurance. This left us in a very uncomfortable position, since I was my family’s source of primary income.

Did I mention that my wife is a full-time stay-at-home mommy? We had nothing coming in. Couldn’t take a loan on boxing income. We are often paid in cash for boxing. I couldn’t work and we couldn’t leave the baby at home with me. I needed to sleep and in a lot of ways, I needed almost just as much attention as the baby did. My wife tried to go back to work to make ends meet, but neither me or my son were having it. So, she stopped.

Socially, it was eye-opening. Family-wise, it was a blessing in disguise. It is harder on my family that it is on me, to be honest. I have no problem adjusting to the new sleeping schedule and to change the way we do activities, but it is harder on the people around me to understand something they don’t really believe to exist. I pretty much went completely MIA for a solid year. Deleted my Facebook, changed my phone number, and only left the house to meet the kids somewhere or get the occasional groceries. I learned to cherish that lifestyle and became very happy with who I was and who we were as a family. This is the way we live and that’s that. It’s a transition phase and we have to go through it.

Personally, the way it affected my life was through the clear detachment from the outside world. I focused on having my best conversations with my few friends outside of town. I barely talked to anyone other than my closest friends for more than a year. The rest of my time was spent on my phone, computer and in the basement with the lights dimmed.

I do more bodyweight training and walk more than I run. But it’s just a different way of living and it could have been a lot worst. I learned how to return to work in a progressive fashion. At the end of the day, I’m grateful that I got to meet people I would have never met in other circumstances. I’m okay with these changes.

 

How have you explained your concussion and recovery to your children?

My kids are my favourite human beings on Earth. They are not only intelligent but they always seek to understand what’s around them. It was easy for them to understand that Dad had a concussion and couldn’t work because he gets migraines and it sucks that Dad cannot drive but that’s cool because we take lots of walks. They are grateful that they get to spend that much more time with their dad. What was hard for them is what other people think and say about our situation. We live in a village of 1000 people. All of their friends see me walking to go get them at school and say things like “I heard that your Dad doesn’t work because he doesn’t want to.” So, I explained to them that they need to go through this with me and that this is normal behaviour for living in a small village. It is not personal and they aren’t trying to be mean, this is just what happens in small towns where everyone knows one another.

I told them plain and simple that the stories won’t stop and they can’t control the who and what, but can only control if it affects them or not. It doesn’t matter what the people in the village think; your Dad is not lazy and needs to recover “at all costs.” If that’s the price to pay to heal his good ol’ brain, then so be it. As parents, we need to explain situations to kids so they can understand. If they make sense out of situations they are usually fine. So, I explain to them that I need to recover to live a better life long-term with them and the price to pay is our low-income life for a year or two. The ends justify the means.

What message would you want other parents/families to know of a family member dealing with concussion?

Live a separate life and accept the fact that you will “parallel play” a lot with your life partner. You guys will be on constant separate vibes and can go as far as separate sleeping schedules. You guys will live “alone together” a lot and it has NOTHING to do with love or affection. In my specific case, living with my stay-at-home partner, it is hard to make a strong point on “why” I actually need more rest than she does. And that’s a huge gap to bridge, to make family members aware that our behaviours have nothing to do with love or respect, but more that concussions are a pain to deal with. You can have three bad days followed by a week of nothing. Just because you have 3-4 hrs of peak brain function, it doesn’t mean that you can go back to work. Because after those four good hours, I will need to rest for two.

Just like how teams and coaches of fighters should understand concussion symptoms, life partners, kids and family should be educated as well. People are smart and usually make sense out of what they understand, but in my particular case – in a remote French village with a ‘working man’s mentality’ – it is hard to get your point across. So, I stopped caring about what others thought and focused purely on my own recovery, my family and my teams. I’m at a point in my life where I genuinely do not care about anything else but the process. Families need to understand the dynamic of a recovery and let the injured party sleep as much as needed and to support the consequences of a proper brain injury recovery process. You can’t do anything without any risk. That’s what I tell my kids. Families need to understand that for people like us, concussions and injuries of all kinds, come with the paycheque.

Families – be patient, master your stories and do not forget that a proper recovery really is a small price to pay for a functional lifestyle. What’s two years, really? Some people spend years in jail to pay for and fix their mistakes. All I have to do is to rest for two years and deal with the social consequences, but that’s nothing. Keep in mind that it could be worse and sacrifices and hard work always pays off. Be patient.

Road to Recovery

“One Day At A Time” was my graduation theme and I have kept that theme on my road to recovery. June 26, 2002 will be a day that I will always remember. On that day, I was competing in the bull-riding at the Ponoka Stampede. While riding, I lost my balance and was struck in the head twice by the bull’s head. I was rushed to the University of Alberta Hospital, where I would spend three weeks in a drug-induced coma. Shunts were inserted into my brain to control the swelling of the brain. From there, I was sent to the Glenrose Hospital where I started all over again.

In the beginning it would take two nurses to get me out of bed. They would push my wheelchair to physical and occupational therapy. I rode that wheelchair for three months touching a balloon back and forth for balance.

While in the wheelchair I started walking with a quad cane and then a single cane with a physiotherapist walking alongside me teaching me how to walk step by step. I progressed to walking on my own, wearing a helmet in case of a fall. It took a year from the two nurses getting me out of bed to where I was eventually walking on my own with no assistance. Now I have walked 3.6 miles in one hour and fifteen minutes.

In the beginning, I was unable to move my left arm. In therapy, I would toss bean bags from the edge of a table to a pail, while trying to keep my balance; now I can carry two pails of grain with my right hand and one with my left hand and tie my own hockey skates.

Every time my Uncle Les Anderson would visit I would squeeze his hand testing the strength I was getting back.

In October, I was transferred to the Halvar Jonson Centre for Brain Injury in Ponoka. While there I learned to swim again, starting out with a life jacket and a life guard watching over me. With hours of therapy and determination I am now able to spend an hour and a half getting the most movement and functional use out of my arm. I spend a half an hour on my balance. While doing this, I listen to the music of Johnny Cash, Hank Williams and Waylon Jennings. Johnny Cash said it best, “I have mountains to climb and I always will.”

The mountains I have climbed in my recovery have taught me that what you put in is what you get out. When your back is against the wall, you raise the bar of excellence while believing in yourself, family, friends, angels and GOD.

There is no reason to feel sorry for yourself, you just have to “Cowboy Up and Keep On Keepin On.” Just when you think you are in bad shape, have a walk around a Brain Injury Centre and see happy survivors and how proud they are of themselves and how hard they work on their recovery.

There are not enough words, phrases or quotes to express the thanks I owe to my parents.

Regarding my speech, I learned to talk over again. In the beginning I wrote things down in a scribbler to communicate, putting vowels into words and words into sentences. I have now written two songs and a multitude of poems. My penmanship has come a long way. For a while, only I could read it and it is now legible.

I started fluids such as ice chips, thickened water and then the real stuff. I started eating puréed foods, then diced food chopped up into little pieces. I am now able to cut my own steak.

Johnny Cash also said, “Walk that second mile, turn a frown with a smile and give more than you take.”

There are steps that I follow every day: Proper rest, diet and exercise.

I learned early in my recovery “Fight a Good Fight, Live One Day At A Time and Make Each Day Count.” My hero, the king of cowboys, John Wayne said “Courage is being scared to death and saddling up anyways.”

Life is not a matter of holding good cards, b ut making the most of the cards you have been dealt.

An old cowboy once said “If it’s not true do not say it.”

 

Here are some quotes that heroes and friends of mine have said that have helped me along the way:

Lane Frost said “It is just as easy to make someone smile as it is to make them mad.”

Kelly Armstrong said “I may not ride bulls forever, but I will be a cowboy forever.”

Chris Ledoux said “Each step that I take isn’t worth the ground I walk on if I don’t walk it on my own way.”

Merle Haggard hit the nail on the head while singing “Hold my head up and be proud of who I am.”

Do your best every day and then better the next day. The best way to heal is from the inside out. People may not remember what you said or did but they will remember how you made them feel.

I learned to transfer from a wheelchair to a vehicle and in the Fall of 2010, I regained my driver’s license.

On my long road to recovery I learned to appreciate what I have today because tomorrow it might be gone.

Until you face some challenges in life you will never know how strong you are. There is no price on your health.

With determination and dedication nothing is impossible.

The bottom line: there’s no such thing as “I can’t.”

 

The Diary of a Concussed

After leaving my hometown and everything I’ve ever known (my family, my friends and my permanent teaching position), this is the second thing that took the most courage to do. My name is Stéphanie Ranger and I’m sharing my story in hopes to raise awareness and shed some light on TBIs (traumatic brain injuries). I am a firm believer in using your voice to share your experiences in order to help others… so here goes nothing!

To begin, a concussion can be life altering and it can turn your entire world upside down. The healing process can be very difficult to deal with mainly because your injury is invisible to the world around you and that can often lead into feeling as if one is exaggerating or faking it. No one should be made to feel that way. Throughout my healing journey, I’ve learned a lot; from life lessons to proper concussion management, and I want to share that information with you. After all, knowledge is power. My hope is that if you or someone you know is going through this, you (or they) can relate and feel more supported. Hopefully someone can learn from my experience. Although my first language is French, I have chosen to write this article in English to reach a broader audience. (À ma communauté francophone, j’ai préservé les extraits en français à l’intérieur de mon article afin d’être authentique et transparente.)

Today, my questions are these:

1. Why am I still recovering from what was initially diagnosed as a mild-concussion 11 months after my injury?

2. Why am I dealing with PCS (post concussion syndrome)?

3. Most importantly, why have I never heard of this and why is my life still affected by it?

Up until November of 2019, I had a position in a school as a teacher. With the effects of my concussion, I came to the realization that my brain could no longer take the high demands, stress and hectic environment of my job. The symptoms I started experiencing caused me to leave the classroom and find another job that would allow me to simultaneously work and heal at the same time. In my search for a new position, I was blessed to find something in my field. I am now teaching French to adults in a quieter and a more relaxed environment. I am still learning how to go through life with this condition. This includes pacing myself, listening to my body, not overwhelming my schedule and practicing gratitude. Working full-time forces me to sometimes put my social life on the back burner and this can be demoralizing at times but “c’est la vie” (such is life). I know that things could be better but they could also be way worse therefore I am counting my blessings and giving thanks to God and the Universe for the gift of life. I made this decision for the good of my health and I learned this. Often times, we are pushed to make decisions for ourselves, it’s hard but in the end everything somehow shifts in your favour! I learned the importance of allowing your cup to fill before you can fill other’s. You can’t pour from an empty cup.

Below is the story of my last concussion recovery, as told by my journal.

 

Recovery Journal

“You are not weak for needing time to rest.”

“You will continue to suffer if you have an emotional attachment to everything that is said to you. True power is sitting back and observing things with logic. True power is restraint. If words control you that means everyone else can control you. Breathe and allow things to pass.”

-Unknown

“Face adversity with compassion and forgive yourself.”

I played competitive soccer at a regional level for the majority of my childhood and teenage life. I also played basketball. In saying that, sports have always been a big part of my life. I’ve had a long history of concussions and I always found that it was easy for me to bounce back. From falling backwards into a wall, to hitting my head on the sidewalk, to falling on my head from being on someone’s shoulders at a music festival and ending up in the ambulance, I thought I knew what a concussion was…

My last concussion happened on February 21st, 2019. After accompanying students to our weekly ski trip, I reached underneath the coach bus to get the equipment out and that’s when my head collided with the coach bus compartment door. At first I told people exactly what happened, that I stood up really quickly and that the top of my head crashed into the bottom of the coach bus door which was open and perpendicular to the ground, but after being ridiculed and laughed at by people close to me, I started to change the story to avoid humiliation. I would say that the door simply closed on my head. This way, people understood the extent of my injury and I saved myself the trouble of having to explain what happened when I was already feeling beaten down mentally. It became an automatism and a form of protection for me. The doubts and comments were so hurtful and painful. If you break your leg, it doesn’t matter how you fall but people doubt your head injury by the way you hit your head. It’s sad that I had to tell a semblance of the story to reflect what I knew society would understand and accept. I was sick of being misunderstood, of having to explain myself and being doubted. If you’re reading this article and I told you this semblance of the story, I’m sorry. It was never my intention to deceive you but to protect myself.

After the incident, I went home and immediately went to bed. As soon as my head hit the pillow, the room started to spin and I wanted to throw up. I didn’t lose consciousness or vomit so I went to bed and hoped it would all go away in the morning. The next day, I went to work and I remember being in a fog all day but I couldn’t really put my finger on how I was feeling. I also remember telling a few people what had happened the night before but I wasn’t taking the situation seriously.. After my full day of teaching, I took the airplane to Toronto for a teacher convention. It took a few days for my symptoms to fully set in but I remember having a crushing headache, the room continued to spin, I was more sensitive to light and sound and I was still in a fog. I fought through the whole weekend, trying to convince myself that I was okay. I would take any chance I could, to go into my hotel room to rest. I remember crying. Looking back, I felt that I ultimately let myself down by pushing through the pain and ignoring it…which lead into my next journal entry:

 

February 27th, 2019

Je me sens tellement stupide! J’aurais pas dû aller à Toronto. J’ai empiré les choses je le sais. Je le regrette tellement. Je me sens comme de la *** et ma tête va exploser et je peux pas penser clairement. J’ai peur parce que je sais pas ce qui se passe. Je me suis jamais sentie comme ça mais tout va être correct. Je vais me reposer cette semaine et je vais être correcte la semaine prochaine.

Translation to English:

I feel so stupid! I shouldn’t have gone to Toronto. I made everything 100 times worse… Major regrets! I feel like **** and my head feels like it’s going to explode and I can’t think straight and I’m scared. I don’t really know what’s going on but it’s going to be okay. I’ll stay home for a week, rest and be good to go by next week!

After having to leave work the following Monday to go see my family physician, my doctor had advised me to stay home for two weeks but as a new teacher at my school, I felt like I had something to prove so I only stayed home for a week. I had a constant headache, my vision became blurry anytime I left my condo, I saw grey cloud particles everywhere, I couldn’t walk for more than 10 minutes, I couldn’t read, couldn’t watch T.V, being in any store made me dizzy and I couldn’t prepare my own food. Taking a shower or brushing my hair felt like the hardest thing in the world. I was completely exhausted. All. The. Time. I sat in my room for more than two days and I spent most of that week off sleeping. After that week, I went back to work. I taught for a week and a half and I was barely surviving my days. Everyday I would have pounding headaches, the pressure in my head was unbearable, I was dizzy and lightheaded, I was still seeing clouds of grey dust in the sky. I spent my prep period in my classroom, lights off, door closed, crying. I would leave work during my lunch hour to go home and sleep (luckily my work was 30 seconds away from my condo). After work, I would go home and take a nap because I couldn’t continue my days. It was awful and I want to apologize to my past self for putting myself through that pain and not putting ME first.

 

March 6th

Je suis dans ma classe les lumières fermées et je capote. Mon cerveau est enflé et je me sens comme s’il va exploser à l’intérieur de ma tête. Je me sens comme mon front est enflé et comme s’il dépasse de ma tête. Je suis étourdie je me sens comme si je vais tomber dans les pommes. J’ai plein d’anxiété et j’ai peur d’avouer comment je me sens. Je pense ce qui me fait le plus peur c’est d’avouer à moi même et d’être honnête que je ne suis pas OK!

Translation to English:

I’m in my classroom right now with the lights shut and I’m freaking out. My brain feels so swollen and it feels like it’s going to explode inside my head. My forehead is swollen and it feels like it’s sticking out of my head. I’m dizzy and I feel like I’m going to pass out. I’m so anxious and I’m scared to admit how I feel. I think what scares me the most is admitting to myself that I’m not okay.

March break finally came around! As a teacher, the excitement of having a week off to rest my brain and recover was so real. I tried to get out of the house to go shopping with my boyfriend at the time, but had to sit down and take breaks when walking in the mall because I felt like I was going to pass out on the floor or that my head would explode. This was the most frustrating thing. On the way back, I couldn’t drive, I had to shut my eyes for the whole ride. I could not understand what was happening with my body. At the time my best friend was visiting from China so at one point I tried to go out and have a few celebratory drinks with her. Once again, I pushed it and didn’t allow myself to rest. Eventually I had to cancel my plans because the symptoms had gotten to be too much and for some people it was hard for them to understand. They had seen me out the night before so they thought I was faking. I finally dragged myself out of my condo to go to an Alpaca farm and this was the highlight of my week.

 

March 16th

Aujourd’hui j’ai été à une ferme d’Alpagas. Ces petites bêtes étaient tellement cute et j’étais vraiment heureuse d’être là. Même si je ne peux pas aller nul part, même si je dois annuler sur les party de filles, de familles, je suis reconnaissante pour ce petit moment de bonheur.

Translation to English:

Alpaca farm today!!! These little creatures made me so happy! Even though I can’t go anywhere and I have to bail on all the parties, girl nights, family events, this was the best moment I’ve had in a long time and I am grateful for this little moment of happiness.

At the end of my March break, I started to accept just how badly injured I was. Things were not getting better. As a matter of fact, things were getting worse. I couldn’t stop crying and I couldn’t control my emotions. On top of feeling like this, comments from people telling me to stay positive or to suck it up just made it worse. On the last day of my break, I decided to seek out professional help because I knew I couldn’t go back to work the next day. I called my mom crying and asked her to drive me to the walk-in clinic because I couldn’t drive anymore. Evidently, all the clinics were closed due to it being a Sunday afternoon. I begged the secretary at Apple Tree clinic on Montreal Road to get me in.. I was desperate. After driving around Ottawa to several closed clinics, my mother and I decided to go to the ER.

 

March 17th

Well on the one hand I completely embarrassed myself today but on the other hand I’m happy I found a doctor that can help me. I showed up to the ER crying and I couldn’t even explain to the nurse how I was feeling. In tears, the only thing that came out of my mouth is “my head”. The nurse looked at me and mumbled… “Okay I’ll just write down mental health.” “No! It’s my head, I hit it. I have a concussion and I’m not okay”.

The doctor gave me two weeks off and told me to stay in the dark for 48 hours. So that’s exactly what I did. All I wanted at this point was to get better, so I committed to following my doctor’s orders. I didn’t leave my room for 48 hours (with bathroom breaks being the exception). I was extremely disciplined. I didn’t check my phone for messages, didn’t answer calls or emails. I didn’t know what was going on. I ended up sleeping for the majority of the time and this is when my thoughts became overwhelming, dark, negative and scary.

 

March 29th, 2019

I feel so pathetic right now. I feel like I’m trapped inside my body and that this is a sick joke. I feel so depressed and my doctor gave me anti depression medication but I feel misunderstood and people just think that I’m sad. No, like I am depressed man! Today I had to call mom because I was having an anxiety attack and I couldn’t stop crying. Thank god she came over. She did my laundry, made me tea and chilled with me in bed until I stopped crying. I felt like a child stuck inside my adult body. On top of everything, my relationship sucks! The arguments are not good. He’s not understanding that I need a special type of attention to heal. He wants to help but he’s not giving me what I need. I don’t even know what I need. All I know is that I just want him to talk to me on the phone and to come see me. Maybe I’m concussed and not thinking straight. Send help!!

After two weeks off work, I went back. That’s when I really realized the extent and severity of my concussion. On my first day back, I remember completely blanking out in front of my grade 8 students while teaching. I wasn’t just stumbling on words but I was losing my entire train of thought. I couldn’t remember my username or password that I normally enter about 5 times per day (minimum). On top of that, my headache was debilitating, the pressure on the top of my head was excruciating, those grey clouds were back, and I couldn’t focus or walk straight. That’s when my coworker recommended me to go see a man named Asef Rhaman, a specialized concussion physiotherapist at ProPhysio & Sports Medicine Center in Ottawa. I remember the first time I met with Asef I completely broke down. Finally I was able to see someone that was an expert in concussions. He reassured me that everything I was experiencing was real, that I was really injured and that it was going to get better. He put me off work for a month. That was when my healing truly started. I saw Asef and his team 3 times per week for 4 months. I cried so much each time I went to the clinic that there was an ongoing joke going that they would start billing workers compensation for tissue fees. Asef was a blessing. He helped me understand exactly what was happening with my brain and helped me to come to a place where what I was going through was validated.

 

April 7th, 2019

I slept at mom and pop’s house because I feel so misunderstood by everyone and I don’t know what to do. I feel so out of it this morning. I feel like I have a really bad hangover and like I haven’t slept for days. I’m completely lost, I’m so sad, I’m unmotivated, and I can’t think straight! I don’t want to do today and I don’t want to live anymore. I just want to give up because I feel horrible and nothing is going right! It sounds dramatic but my brain isn’t okay. I’m not okay! I don’t have the energy to do this anymore. I’m depressed and I feel so misunderstood. I feel like my personality completely changed and the joy I have for life is gone. I can’t even take care of myself and empty the dishwasher without wanting to pass out. I’m always in pain.

During the month of April, I decided to be proactive in my recovery and I tried everything. I wanted to get better. As I was learning more about concussions, I realized to what extent I was injured. I knew that I needed way more help than a doctor could provide. I was desperate to find the help and the answers I needed. I had an amazing team of people helping me. I saw Asef 3 times a week, my family doctor, a sports concussion specialist, a neurologist, I tried acupuncture, saw a naturopath, I would regularly go see my psychologist, I even tried Reiki treatments and craniosacral massage therapy. Meetings and appointments had become my life. That’s why when people assumed I didn’t want to get better, it really upset me because no one knew the steps I was taking to heal and to get better.

April 21st, 2019

Why am I not getting better? I’m doing everything right! I’m resting, I don’t go out except for my appointments, I eat well, I drink my water, I take my supplements. I’m starting to feel really hopeless and I’m scared that I wont get any better. Someone save me from myself. I’m sick and tired of not feeling like myself. I want Steph back. I want my life back. It’s been 2 months but I feel like I’ve been dead inside for 2 years. I want to laugh again and really mean it. I want to be able to go outside and take a walk for 15 minutes, I want to be able to go to the store and buy my own groceries. I feel like I’m trapped in my body and like my personality completely changed. I feel so alone and empty. I’m so thankful for my physio team, for my family and friends that understand me. I’m thankful for my brother and his girlfriend that allow me to go over, to nap in their bed when I need a break. I’m thankful for Peanut that cuddled me in their bed when I was napping and crying. I am so grateful for my FaceTime calls with my brother and Peanut.

The hardest part of my recovery was how much it affected each of my relationships. Between spending my energy defending myself and justifying how I felt to people very close to me and fighting with my boyfriend at the time, I learned just how much your relationships can affect your health. The emotional stress caused my symptoms to flare up to the point of my skull feeling like it was going to split open. I am aware that concussions not only affect the victim, but everyone else around. Concussions cause strains on relationships and your change in personality can be really difficult to deal with. For me, my emotional symptoms were crying. Lots and lots of crying. The lack of presence from certain people pushed me to be more independent, and that’s okay. The emotional side of recovery is the most important. Surround yourself with people who help you, believe you and in you. For me, my family and some of my best friends helped me get through my dark times. Going through a breakup and being concussed, I thought it would put me on the floor. I was sad at first, but then I started to heal and this goes to show just how much your emotions can hinder your recovery.

 

April 28th, 2019

Break up with my bf. I’ve been crying so much for the past months so what’s a little more crying… after the breakup, I felt like some of the pressure in my head disappeared. When I got to church for Andy’s baptism, I cried so much in the parking lot. I was so heartbroken and at the end of my rope. I saw pop and Katia in the parking lot and they just gave me a hug before walking into the baptism. I see this as a symbolism for a new chapter, to heal my heart and my head. I’m so heartbroken, my head feels broken. I don’t ever want to feel like this anymore.

 

May 8th

Today I woke up angry for being judged and doubted about my return to work. I hate how people don’t believe me and how people don’t trust in my judgement. ENOUGH! I forgive myself for having been a people pleaser my whole life and putting myself last.

I finished the school year with a progressive return to work and only doing administrative work. At first I felt supid, like I was milking my injury but I realized this was in my head (literally). I had a lot of support from my family and my coworkers. Some people will never understand, but it’s not my job to help them get there.

 

July 15th, 2019

Ok ça fait longtemps que je n’ai pas écrit dans mon journal mais je commence vraiment à prendre connaissance de l’amour de Dieu et de l’univers pour nous, les humains sur la terre. Je commence à me sentir mieux et comme une personne totalement différente. J’ai vraiment amélioré mon mindset et j’en suis fière.

Translation to English:

I haven’t journaled in awhile but I am really starting to understand God and the Universe’s love for us. I’m finally feeling better and I feel like a totally different person. I’ve improved my mindset and I am so proud.

 

When July came around, I decided to continue to take the necessary steps in order to fully heal. In more ways than only my concussion. In doing that, I decided to leave my hometown of Ottawa to move to another part of the country, that is known for it’s more relaxed lifestyle and laid back attitude. I knew this was exactly what my head needed in order to heal. I knew in my heart that this recovery process was going to be a long one. I was better, yes but I still had more healing to do. A part of me still fears I won’t ever be the same again but this is something I’m learning how to walk through. I don’t know if it’s became a part of my identity; my brain doesn’t work. My attention span isn’t what it used to be. Visually, I still have trouble focusing. I deal with headaches every time I go out in public, when I am surrounded by other people, my brain can’t filter the background noises and all my symptoms come back. The dizziness, nausea, seeing clouds, feeling light headed, light and noise sensitivity and emotional control linked to anxiety are all part of my daily life now. What helps me get through my days is pacing myself, listening to my body and to take a break when I need one. I am still mourning the person I was before my TBI but I am also celebrating a transformation into the person I am meant to be.

When I first moved to Halifax, I started a teaching job and I was teaching grade 1. Within the first month, I suffered from terrible headaches, dizziness, loss of memory and not feeling like myself. I found myself needing to go to bed early, I had difficulty concentrating. I couldn’t eat or have lunch with my coworkers because my head would be too much. Every lunch break, I would sit in my classroom, shut the lights off and focus on my breathing for 30 minutes. Then, I would go out if possible and go for a walk. This kept me going and if I wouldnt follow through with this during my lunch break, I would suffer for the rest of the day, night and week. I pushed it for 2 months until I wasn’t able to function anymore. My symptoms progressively started to worsen until I crashed…again. Eventually I took some time off, tried to go back in the classroom part time and do half days, but the stress of the job and the multitasking was too much for my brain. I decided to leave the classroom and teach in an environment that was more calm and that would allow me to heal.

Going through life and living with PCS is not an easy thing to do. You constantly plan your days and anticipate how your brain will be affected by different settings. What I’ve learned throughout my healing journey is that you are responsible for your healing, and no one will take the initiative to get better like you will. In addition, it is crucial that you reduce your stress levels. I can’t stress this enough… Stress will worsen your symptoms. It’s important to also find people who understand, believe you and support you. I have found my people and I am holding on to everyone that supports me and that is there for me. I love you guys so much (you know who you are). Lastly, the basic human needs are crucial to the functioning of the brain; things such as exercising, sleeping, eating well and drinking water will help you to get through your days. Lastly, it is okay if you need medication to go through your days. If your anxiety or depression is affecting your day to day functioning, please seek help. We are not made to be struggling like this. I take medication for my mental health and I’ve accepted that medication is not equivalent to being weak.

Here are some lessons and takeaways from my experience:

  • Setbacks are the most frustrating and discouraging thing but know that they are part of the process and that healing isn’t linear.
  • Appreciate the little things
  • Be kind. Be kind to others. Be kind to animals. Be kind to yourself.
  • Face challenges with adversity
  • No job, no sport, no one and nothing is worth your health. Take care of yourself first and you will be able to take care of others
  • Healing looks different for everyone
  • Know that there is Hope
  • Please trust yourself. Only you know how you feel and only you know what you need in order to heal and get back to the person you were before your injury

My life is completely different than it was a year ago and I owe it all to my concussion. Even though it was painful and I still struggle daily with it, my concussion is the best thing that’s ever happened to me. It helped me to completely shift my perspective on life and to focus on the important things. I’ve learned to appreciate life in the moment and to have compassion for myself and others. I used to view slowing down and being sick as a weakness. In the healing process, people have been so kind to me. In a way that has overwhelmed me. My family, my friends, my colleagues and even acquaintances. I have trained my mind to see the good in every situation and to let go of people who don’t lift you up. I’ve learned to listen to my body and to accept the fact that my physical and mental capacity isn’t the same as it was before, and that’s okay. I’ve learned to enjoy every moment fully and trust that things will get better. There is beauty in simplicity and mindfulness. Lastly, I’ve learned that you have good days and bad days but remember, a flower doesn’t grow without rain. Healing isn’t linear and setbacks are part of the process.

My last piece of advice to you. Find yourself a good support system. That is what is going to keep your hope and your faith alive. When I moved to Nova Scotia, I cultivated the relationships that helped me, encouraged me and supported me up to date. My parents, brother, cousins, aunts and uncles in Ottawa as well as my lovely friends, you guys have a special place in my heart and I am lucky to have such special people in my life. In Halifax, I was blessed to have the support of my uncle and my aunt. They took me in like their own daughter. I couldn’t have done it without their help and for that, I am so grateful. Furthermore, in my search for community, I have come across such wonderful and kind people. From new friendships and coworkers, to a wonderful church community that has given me hope. Thank you Pastor Mike and Nova Church. My relationships have allowed me to walk through my healing process feeling loved and encouraged. Lastly, after a few visits to different concussion specialists and physiotherapists in Halifax, I recently met with Dr. Rebecca Wynn, a chiropractor. As soon as we started talking, a wave of hope filled up my whole entire body. She explained to me what was happening in a way that no one else has. She ran a few tests on me and immediately noticed a problem with my left eye. She also covered different aspects of a concussion. I can’t wait to start my treatment with her!

In conclusion, don’t sweat the small stuff and never give up on yourself. I promise that you will see yourself transform from victim to victor. On lâche pas!

Stéphanie Ranger

Heads Up – It Gets Better

In the sequel to my first article – The Diary of a Concussed, this is the second and final part of my healing process. How did I beat this invisible monster? Looking back on my journey, my healing process was based on three integral components; mind, body and soul. The first (mind) was linked to the emotional side of recovery. My mindset – letting go of toxic relationships, avoiding gossip/drama and slowing down – were aspects which allowed my mind to be at ease and to be an asset in my recovery. The second component (body) was the physical aspect of recovery. This fundamental aspect was the most important in the first stages of my concussion. Nutrition, good sleep hygiene, water intake as well as moving my body was the first pillar of a healthy brain. The third component (soul) is linked to my spirituality. For me, my strong faith is what contributed to a significant part of my progress, especially towards the end of my healing process. These are all things that you can do for yourself. Furthermore, medicine and doctors are inevitable in concussion recovery. A year later, I’ve learned that concussions are treatable and that the cure for this injury isn’t limited to only time and rest.

A week after publishing The Diary of a Concussed, I went to dinner with a few girlfriends to celebrate my 28th birthday. I was having a great time until my party got crashed by an unwanted guest; my PCS side effects… Talk about a party pooper! The feeling was back; my head was spinning, I was dizzy, I couldn’t focus on the conversation anymore, I had a pounding headache and I felt my chest tightening up due to anxiety. The atmosphere was too stimulating for my brain. So we left and hung out at my friend’s apartment instead, where it was quieter and calmer. In the following weeks, I had to take brain breaks between my classes, naps were my saving grace and I had to give myself regular pep talks to get through my days.

At that point, I didn’t know what to do anymore. I felt stuck. That’s when a friend referred me to his colleague who runs a Concussion Rehabilitation Program. After being seen by more than a dozen doctors ranging from neurologists to sports concussion specialists, I had just about given up on finding someone who could cure me completely. However, I decided to give it one last try and I travelled to Ottawa for the program. After my initial assessment with the doctor, I was impressed. For the first time, someone performed a thorough evaluation in order to customize an appropriate treatment plan based on my unique problem areas. The doctor was able to pinpoint the exact cause behind my lingering symptoms and targeted the damaged areas in my brain during my treatment. I was discharged in a matter of days and since the program, I’ve noticed big improvements; I am now able to get through my work days without having to nap afterwards. My dizziness is almost non-existent and the frequency/intensity of my heachaches have significantly diminished. Also, as a French teacher, I often have to translate sentences from English on the spot and this was extremely difficult for me to do. Thankfully, that has also improved. I am so very thankful for completing the concussion rehab program. Concussions can be scary and the healing process can be demoralizing but I’m relieved to know that they can be treated.

We only have one brain and we need to take care of it. Here are my top brain tender loving care tips.

Disclaimer: I am not a doctor nor a health care professional but this is what I’ve benefited the most from.

Brain tip #1: Stress reduction. Stress is inevitable and life happens. Therefore, stress management is crucial in order to heal your brain. Cultivating healthy relationships, journaling, getting proper sleep, learning to say no and setting boundaries are things that have been helpful in minimizing my stress levels.

Brain tip #2: Diet and supplementation. We all know that nutrition plays a key role in our health. Food is fuel. Food is medicine. In addition to a well balanced diet, I take supplements to boost my brain function.

Brain tip #3: Exercise. In order to have a healthy brain, it’s important to get your blood flowing. Find something that you enjoy doing; walking, running, swimming, biking, weightlifting, yoga, etc. Exercise not only has physical benefits but mental benefits as well.

Brain tip #4: Gratitude. When you are grateful, you’re happier. Being thankful is being content with the current situation you are faced with and there is always something to be grateful about. It might sound cliché, but start your day off by writing down three things you are grateful for. If you don’t know what to write down, you can be specific. For example, instead of writing down that you are grateful for your health, you can be more specific by being grateful for your eyes, that you are able to see the beauty of the world. This really helped to get through my dark times.

Brain tip #5: Mental stimulation. Hobbies and skills such as puzzles, games, sudokus, learning a new language, drawing, reading, etc. will stimulate your brain. We must exercise our brain the same way we exercise our bodies.

In conclusion, the past year has been the most challenging mountain to conquer. The injury itself was physically difficult but the psychological aspect was at times unbearable and this is exactly why I’m advocating for concussions. The stigma needs to end. In hindsight, I can confirm that difficulties are essential for our growth. Throughout this process, I learned the true meaning of patience and persistence. For that, I am truly thankful. Sometimes what you don’t want turns out to be exactly what you need. Ain’t God good!

Stéphanie Ranger

Keep Your Head Up

Felicia’s Story:

I have always loved being active and grew up playing soccer and ringette. I received my first diagnosed concussion in 2011 when I was hit from behind into the boards while playing ringette. I was in Grade 10. I developed numerous symptoms, such as daily headaches, nausea, light sensitivity, and dizziness. My doctors thought that I would be able to return to play ringette for provincials in three months. This gave me hope that I would have a speedy recovery. However, as the days began to blend together and my symptoms persisted I was unable to return for the remainder of my season. Lights, noise, and our team’s family members and friends in the stands became too overwhelming for me to support my teammates. The prolonged concussion symptoms resulted in multiple stressors in various aspects of my life; socially, mentally, physically, and academically.

After returning back to school following a month of rest, I altered my workload to two courses a semester to accommodate for my symptoms. I began to miss out on social events, which was devastating to me at the time. Social isolation was something that was extremely difficult for me to cope with in the early stages of my concussion. I was very hurt by people telling me I was lucky to have accommodations and a lighter course load in Grade 10. I was constantly told that I was “faking it”.

Throughout the rest of my high school career I took lighter course loads because I was still symptomatic. In my Grade 12 year I was determined to graduate with my classmates. I enrolled in 10 courses to ensure that I would walk across the stage with my peers. This was extremely important to me and is still something that I take great pride in as I was able to achieve my goals while facing great adversity.

Following high school, I studied Public Health at the University of Waterloo. It has been my dream to make a positive difference within the concussion community. I worked at my own pace and completed my degree in five years. I sought help from necessary campus resources and accommodations in order to be successful.

I would be lying if I said I wasn’t still struggling. My anxiety still affects situations that used to be seemingly effortless. I am a very social person and missing out on events due to how I am feeling has been a huge adjustment. Suffering from daily headaches, light sensitivity, and ringing in my ears has forced me to change how I live on a day-to-day basis to accommodate how I am feeling. I set high expectations for myself and often forget that I cannot always do everything that I used to be able to do in a day and still feel 100%. My injury has forced me to slow down more than I would like, but I am learning that it is okay to take things slow, which has taught me so much about myself.

Over the years I have found ways to cope with my persisting symptoms and I have been successful while battling through the tough days. I have learned how to say no when I need to and how to take time for myself. I have discovered that I am resilient, determined, and passionate about helping anyone who has had a similar experience. I hope that my story can be used as inspiration for others to persevere, because if you keep your head up amazing things will happen.

Allie’s Story

My journey began seven years ago when I sustained a concussion while playing rugby. It seemed like a mild head injury at first, but over the next few hours and days my symptoms became much worse. I was supposed to graduate high school two months after my head injury. At the time, the academic and social implications were devastating. No amount of rest or rehabilitation therapy seemed to help. Ultimately, I was not able to finish the school year and had to delay attending university indefinitely.

The biggest hurdle for me was slowing down. I had goals that I was on track to achieve, so I was desperate to get my life back. I struggled to see the bigger picture and stumbled over and over again trying to rush my healing.

A few years in, I started to feel hopeless. I was so tired of my body not being able to do what I wanted it to do. Things that I used to be able to do without thinking became challenging. I eventually stopped talking about it with family and friends because I couldn’t bear the constant questions about things that I wished I had the answers for myself. I felt that my support system was getting burnt out by my lack of progress. They were just trying to be supportive, but I felt like I was bringing them down. I tried to put my head down and leave it all behind. I was doing everything that I could to get things back to the way they were, but it only made things worse.

What surprised me was that when I eventually did slow down and make progress, I struggled to find motivation and meaning for things I had longed to do before. It took me a long time to realize that my mental health had taken a huge hit and that I needed to seek help.

If you had told me seven years ago that I’d still be trying to heal, I probably would have given up. It’s hard not to grieve about what “should” have been. But I’ve learned that I’m capable of overcoming challenge after challenge. I have gained perspective and wisdom that has made me a better person and a better friend. I know my experiences will allow me to help others in a way that I would not have been able to before.

Our Story

Throughout high school and university we were lucky enough to have one another to lean on during our recovery journeys. We were able to support and understand each other in a way that most others could not. Our recovery experiences are not identical, but we have had our fair share of similar struggles. Our friendship continued to grow as we supported each other throughout our highs and lows, and we began to appreciate the importance of a strong support system. Furthermore, having someone who could recognize what we were going through, relate to, and even provide advice on coping strategies and treatments was very helpful.

We both faced an uphill battle in getting the right support that we needed, and we still find this to be an issue within the concussion community. We regularly hear from people within the community who are in a similar situation and are seeking advice for the same issues that we had.

We both always knew that we wanted to pursue a career in health given our personal concussion experiences. Our concussions led us to the field of public health. We always talked about working together to make a difference within the concussion community, and over the past year we have started to present our ideas. Over the last seven years, there has been so much progress in terms of building awareness of what a concussion is and how to identify the signs and symptoms. However, we still feel that there are a lot of barriers to accessing the support individuals need in a timely manner.

We are currently working on an initiative called “Keep Your Head Up”, through which we aim to provide support to individuals recovering from concussions. We have compiled everything we have learned throughout the years with our public health backgrounds with the goal of improving awareness of the challenges of recovery and the support that is available. Currently, we have an Instagram platform where we share coping strategies and are building a sense of community for people affected by brain injuries. We are also developing an education program to increase awareness of the challenges of concussion recovery and the various supports that are available.

Follow us on Instagram at @KeepyourheadupKW for tips and coping strategies, wisdom, support, and a positive online community throughout your brain injury recovery. We look forward to connecting with you!

The Orange Butterfly

Hello everyone. My name is Lauren and I am 28 years old.

My life before my brain injury was chaotic and active, but I loved every part of it. I graduated university in 2015, and began working as a special education teacher, specializing in the Autism Spectrum. I enjoyed everything about my job and my responsibilities, and couldn’t imagine doing anything else with my life. I was a passionate dancer, studying ballet and Irish Dancing since the age of four. I competed in state and national championships every year for Irish Dancing, winning many team championships along the way. I was extremely dedicated to my ballet, working towards my exams each year, always wanting to be the best dancer I could be. Dancing has always been my way of expressing myself. I was also a part of a wonderful gym community, and I enjoyed getting up early before work to get to my gym classes every day. Going through my early 20s, I was always very social and loved going out with my friends.

My accident happened during one of my lunchtime yard duties on the playground. One of my students was stuck sitting on top of the climbing frame. On this day, I decided to climb up a couple of rails just to get a little closer to him. I pointed to where he needed to place his foot next, he did it, and again and again and again until he was down at my level. Before I could get back down to the ground, my student had hold of my top, and I lost my balance as he jumped safely to the ground next to me. I tumbled and hit the back left side of my head on a metal pole, and fell to the ground. That’s it. That’s all it took. Five minutes to change my entire life. A statement I very much was not aware of at the time.

I was taken to hospital and discharged later that day with a concussion, told to sleep and rest and that I’d be back at work the following week. But after a few days, we knew it was much more than that. I spent the next few weeks in bed unable to move or really function like a normal human being. I struggled to stay awake, always wanting to sleep. I started to notice a connection between the nausea I was experiencing and my eyes. I couldn’t watch TV, look at objects for a long time, or look around my bedroom without feeling terribly sick and having to sleep again. I could barely open my eyes to sit in the car on the way to the doctor. The headaches and migraines were starting to kick in. It was one of the strangest feelings to explain, I had never felt or experienced anything like it before. I found it hard to find words, to communicate properly, became very forgetful and very depressed. I felt so broken. I still looked like Lauren, and I think that was the most frustrating part of all, because no one could see how I was feeling on the inside. My injury was and remains physically invisible, and you just feel like screaming all the time!

Through numerous doctors, Neuro Physios, OT, psych assessments, and months of intensive rehabilitation, I was diagnosed with post concussion syndrome, vestibular ocular mismatch, occipital neuralgia, vestibular migraine, a milder case of diffuse axonal Injury, a loss of cervical lordosis, and I developed Idiopathic Hypersomnia (a form of Narcolepsy).

Two years have passed now, and honestly it’s been a massive struggle to get to where I am today, but I’m super proud of myself!! My job has always been about putting others before myself, the needs of my students and their families, but the last two years have taught me the importance of sometimes putting myself first and looking after my needs.

As much as I need to do that, I still wanted to reach out to others, help spread awareness and education throughout the community about brain injury, and support anybody going through the same things as me. There is a massive barrier in the community between individuals living with a brain injury and the wider community, and that is a lack of education and understanding. I decided to write a blog and share my story through a website and social media pages called The Orange Butterfly. The Orange Butterfly is all about new beginnings; finding both hope in healing, and heart in transformation. The Orange Butterfly seeks positivity in darkness and difficult changes, to emerge from setbacks with grace and beauty in our eyes. It is a reminder to embrace new life, pathways and challenges with faith.

I share my positive moments, as well as my dark moments, always trying to make sure my online community shows the reality of living with a brain injury every single day. I have been receiving so much positive feedback from the community, my blog has reached people from around the world, and I’m so happy my new life has created opportunities for me to still support and help others find their way as best I can!!!!

Shattering the Stigma – It’s Time for a Hand Up

Geoff Moore is a proud husband and father of four children. He is an active volunteer and second time entrepreneur with a passion for sustainable finance. Having drawn lessons from his experiences and those of many others on being “pinned”, Geoff has a strong drive to offer a hand up to people who are struggling through stories and conversation, and aspires to contribute as a mental health advocate and speaker.

I am sharing a story about my personal experiences with concussions and a mental breakdown that led to a five week hospitalization in the hopes that it will help other people.

It would have been wonderful if my parents had access to an organization like Concussion Legacy Foundation Canada and the expertise and resources it brings to the table back when I was in the fifth grade. What began as a normal, carefree day in elementary school changed in an instant when one of my friends stuck out his leg to tag me when I was trying to sprint past him playing British Bulldog and I went head-over-heels, unable to stop my head from hitting the pavement. It was the biggest shock of my life up to that point and my vision immediately blurred, a huge headache began and when I put my hands up to my head I felt a large welt swell rapidly as I screamed in bewilderment. I was brought to the Children’s Hospital and believe I was kept overnight for observation. I continued to have unpredictable migraines throughout the year, and would regularly go home to bed, close my eyes and often cry myself to sleep when the pain was not tolerable. I was interested in both hockey and football among other sports at the time, but for years did not engage in either sport because each time I tried putting on a helmet, I would get a very painful headache right away.

I had my second confirmed concussion during CEGEP (Community College) while playing for the school’s rugby team. I say “confirmed” because I accidentally ran into a parking meter while being chased by friends a couple of years before my concussion in Grade 5 and never knew if the headaches I had for a few days after were from a concussion or not. During a game against our main rival, I was kicked in the head by an opponent while coming out of a ruck and a fight ensued between players on both teams. I had no idea where I was – in fact, after giving me smelling salts our team trainer decided that it was clear that I needed to get off the field when I began answering his questions by referencing the Flintstones cartoon series…. Funny in some ways, but in reality not for me. My mind was in a fog for many weeks, I regularly felt sick and did poorly on my midterm exams. This did not prevent me from getting into my first choice of universities but certainly could have.

A couple of decades later, I started my first entrepreneurial venture. The success I had working for big companies with all the resources available to bring to the table did not translate as readily as I had expected when I passionately tried to start a company from scratch. In my mind, I dedicated the company in part to my late father who was my greatest hero and a World War II vet. So, while this helped provide initial motivation, it also added to the pressure when I struggled to keep the company going after close to two years. I felt that I had let him and my own family down in a huge way. I didn’t realize it at the time, but over the final few months I was not sleeping much, not eating properly, and had stopped all sports and athletic activities to dedicate myself fully to the business to try to make it sustainable. Anxiety was building and my ability to function and execute was weakening. I dropped speaking engagements and found out later I also had severe sleep apnea. I did not have support from a business incubator or accelerator during that time (about a decade ago), and a combination of serious challenges that entrepreneurs often face eventually became overwhelming. Without going into details, I was hospitalized for five weeks with a mental breakdown. The whole situation created a hugely stressful situation for my family. Having been floored by concussions and also having had other unexpected health experiences during my life, I already knew that there were times when you realize that getting up is impossible. I learned first hand that whether it is a physical or mental health issue, you are going to be pinned. Period. My doctor told me during my hospitalization that everyone has a breaking point(s) and I had found mine.

However, intense experiences can be great teachers. I have been thinking for some time about what thoughts I can offer in this personal story that might be helpful to those who are struggling now either with post concussion syndrome, depression, anxiety or other mental health challenges. While I don’t claim to have any specific solutions to anyone’s problems, I can share an idea that I hope will lead in a positive direction. The objective is to ease the pressure on people in crisis through everyone recognizing their common humanity.

So what am I talking about? Let me try to explain myself using the following illustration:

The analogy I want to use is one from exercising in the gym. Anyone can try this, and the result will be the same no matter how strong you are. Instead of using a heavy weight as a test of strength as people normally do, take an air bar (45 pounds – the lightest bar), and bring it over to the bench press. Now do as many repetitions as you can. But there is one twist to this challenge… The number of reps only counts once you can no longer lift the last rep off your chest. How many did you do? How much does the weight feel like now? It is still just the same 45 pounds… but it now feels like hundreds of pounds, right? And no matter how strong you are, you are PINNED at this point… you cannot get up on your own. Are you weak? No. You are just like everyone else… you’ve reached a breaking point where even the lightest load is unbearable on your own.

People looking at anyone in the gym pinned under 45 pounds would not understand how someone would allow themselves to get into that situation… It is embarrassing they might think… Why didn’t they ask for a spot?… They must be incredibly weak to be pinned by 45 pounds… But people who are pinned in real life do not choose to be there. Unfortunately, they often don’t come forward for help because they are afraid of the stigmatization by other people from all of the above, and their own weakened state and the resulting self-talk is also weighing heavily at the time.

The challenges that lead to someone being pinned are not always visible to others. They cannot see behind the sometimes herculean endurance required to deal with any number of possible real life struggles and health conditions which when compounded day after day after day will eventually pin anyone. The need for help before someone gets pinned is clear. When you are pinned, despair is possible. As part of this, shattering stigma is very important. One way this can happen is when people understand their own vulnerability to being pinned. Using the weight room analogy – and in real life – no one stands alone as we all share a common vulnerability depending on what life throws at you.

I have one more idea to share that I think might help. When you are struggling – pinned – you may see no way out to regain a bright future. You may feel you have lost your identity. You struggle, thinking how on Earth you can ever get your identity back. You need hope. You need help. You need reference points. from the many people who have been there in similar situations to you. You are not alone, and the weight can start lifting with that knowledge.

To build upon this thought, I want to share a story from a road trip I took a few years ago with my eldest son who is an excellent, self-taught guitarist and music lover. As part of our trip we went to the Rock N’ Roll Hall of Fame in Cleveland and the Country Music Hall of Fame in Nashville. In between these locations we spent time in Louisville, Kentucky and among other activities we toured the Muhammad Ali Center. It was there that I learned about the “Red Bike Moment”. At the Center they have stories from people around the world sharing their own equivalent of “Red Bike Moments” or a transformational moment in their lives that occurred because of a challenge or some type of adversity.

Quoting from the Center’s website:

“When Muhammad Ali—then Cassius Marcellus Clay—was twelve years old, a thief stole his new red Schwinn bicycle outside of the annual Louisville Home Show. Clay, in tears, found a policeman to report the crime to and stated that he wanted to “whup” the thief who stole his bike.

Serendipitously, the policeman was Sergeant Joe Martin, who trained boxers. He encouraged Clay to learn how to fight before looking for retaliation. Martin’s gym was in the basement of the same building they were standing in. Clay showed up the next day to start training and he spent the next six years under Martin.

Had young Cassius not been the victim of a stolen bicycle AND had he not taken the advice of the police officer, his life would certainly have taken a different path. Cassius Clay’s stolen bike became a catalyst for his boxing career and illustrates by example how Cassius found his purpose in life at an early age.”

Nobody wants to have concussions or mental health challenges, and once again I am not trying to downplay the complexity of these issues or purport to have any magic solutions for anyone’s problems. What is a fact is that EVERYONE is vulnerable to being pinned when life plays hardball. By realizing and admitting this fact, hopefully we are all one step closer to seeking, accepting and offering a hand up when it is our turn, as this is the first step in getting an appropriate team in the game to help get on the road to turning adversity into the hopeful potential of a new chapter and a personal “Red Bike Moment”.

An Advocate for Change: My Troubling Journey through Post-Concussion Syndrome and Probable CTE

Stephen is an award-winning, forward-thinking and progressive employment lawyer. He is a 2013 graduate of the University of Alberta Faculty of Law in Edmonton, AB. Stephen champions human rights, equality and justice and has focused his attention on being a brain injury advocate and agent of change. As a survivor of repeated head trauma, brain injury and ongoing post-concussion syndrome, Stephen’s goal is to facilitate increased awareness to these troubling and often misunderstood issues, particularly within the area of employment; one of the most fundamental aspects of life, and most concerning issues for those affected by concussion and post-concussion syndrome.

As I write this, I am feeling tired, beaten, worn out and fatigued – mentally, physically, and emotionally. My life’s journey has been a long and troubling battle with head injuries, depression, anxiety, exhaustion, substance abuse, self-loathing and mistreatment by my profession. 90% of the time, I can hardly function in my day-to-day life, as I deal with extreme migraine headaches, profound body pain, incapacitating fatigue, severe depression, sensitivity to noise and light, you name it – I can check all the boxes. I have problems with memory, impulse control, mood imbalance, cognition and executive functioning. I have been seen by every type of physician and medical professional there is; from neurologists, endocrinologists, psychiatrists, physiatrists, somnologists (i.e. sleep doctors), etc. Every answer has been the same: my brain has been irreparably injured by way of repeated blows to the head. I do not have cancer, a stroke, ALS, etc. I have a brain injury. A serious and likely progressive medical condition.

I’m no longer ashamed to admit that I have frequently contemplated and likely subconsciously attempted suicide on more than one occasion over the years. When nobody would be on the highway at 3 a.m., I would do this through driving recklessly at high rates of speed while very intoxicated (although, I am now four years sober) – hoping, just hoping that I would lose control, crash and have the pain instantly taken from me in a single fatality accident. I have screamed out for help for over seven years, more often than not being completely ignored, including by members of my own family and community. At times, I was told by my family to keep quiet and not reveal such private information, likely because it would have the practical effect of embarrassing them. In large part, I have kept quiet about my chronic pain and suffering, which is largely due to the stigmatization still unfortunately ascribed to those dealing with mental illness, whether occasioned by traumatic brain injuries (“TBIs”) or not. This is especially so in my profession as a lawyer, an archaic profession that still generally refers to these symptoms as “mental break-down” and will not hesitate to demonize you for such in what is brazen discrimination.

In opening-up and airing my story publicly, I am attempting to effect change and promote awareness of these troubling issues, particularly as they relate to survivors’ employment – concussion, TBI and Post-Concussion Syndrome (“PCS”) are very real, and society can no longer turn a blind eye to it. It is a crisis affecting athletes, first responders, law enforcement, military veterans and every-day people. I want to be heard and talking about my journey is a large part of the healing process. We can thank Hollywood for creating some minor and fleeting attention to the issue through, among other things, the 2015 film Concussion starring Will Smith; but there is still much more work and advocacy needed to be done, particularly on a day-to-day, grass-roots level. The level of general awareness and understanding of the intricacies involved in concussion, TBI and PCS is shockingly and concerningly minimal. While my story is seemingly more negative and dark in tone than others, it is not intended as such. It is intended to illustrate the real-life effects of this miserable and sinister condition with a view to fostering greater awareness in the community and among employers – principally so nobody else has to go through it. The ugly truth of concussion, TBI and PCS needs to be exposed, but I will do my best to illustrate the silver lining at the end. What follows is my raw and uncensored story.

I was a happy and energetic child. Looking back, as a youngster, my passion for life and high-energy caused me to hit my head a lot, seemingly far more than other young boys at my age. The many scars all over my head remind me of all the fun (and trouble) I got into as a child. Whether it was throwing rocks with my cousins, running through hallways at school or playing sports with my friends, my head took the brunt of many inadvertent hits; 25+ years later, the many scars from sutures and lacerations to my head offer evidence of what was a rambunctious, happy and fun-filled childhood. Boys will be boys, right?! What we thought was a young boy’s zest for life ultimately laid the groundwork for what was to come.

My love for sports began at an early age and it wasn’t too long before I was playing football and baseball at a high level. I was an athletic kid and was blessed with the natural skillset and physique to excel. I was big, tall and fast relative to the other kids, and had “good hands”. The gift of genetics blessed me with big and muscular legs, which enabled me to run fast. In football, I was a wide receiver and kick returner. I loved to run, and run fast. Dodging, tiptoeing around and outmaneuvering my foes on the field was awesome, and so was laying out to make that catch – “did he actually just grab that?!” was something I commonly heard. In baseball, I was a centre fielder. Here, too, my speed, hands and agility enabled me to make that diving catch on-the-run after tracking down a ball a hundred feet away that nobody else could catch-up to. And, man – did I ever have a notorious cannon for an arm, gunning out my competitors at home plate from deep in centre field, without so much as a single hop. After a while, other players just stopped running and testing me, knowing I would get to that ball. I was also a constant threat on the base paths, quite literally turning what would otherwise be a single into a triple at almost every opportunity and I don’t think I ever failed to steal second and third base, more often than not leading with my head.

Unfortunately, my on-field skills and passion to do the unthinkable caused me to time, and time again, hit my head. Whether it was taking the huge hit to dive into the end zone headfirst, laying out to make a catch that I knew would hurt with an inevitable helmet on helmet hit, running into an outfield wall at full speed to make the unimaginable grab or taking a knee to the face while sliding into second to advance the runner, my head (my poor head) was repeatedly battered. As an adolescent and young adult, I still didn’t think about the consequences of what I was doing; at that time in the late 1990s and early 2000s, neither did my coaches. I recall one specific instance at high school football practice where I took a vicious helmet on helmet hit, waking up after a few seconds covered in my own snot. Dazed, confused and disoriented, I got up, wiped off my face and got right back out there with my coach’s blessing. What we all thought was a normal football play was no doubt a concussion, one of hundreds of undocumented TBI’s I have likely sustained. We just shrugged these things off; it was all part of the game, something that would happen again and again, that my parents didn’t even know about. In the end, I was always that guy, unafraid to dive head-first to come up with the spectacular. People loved me for it.

Around the age of 20, I gave up on competitive athletics after having reached the college level to refocus on my academics. Although I had exited the world of competitive sport, and as I now know it, much damage had been done that was carried forward with me into the next chapter of my life.

I have always detested bullies and rude, inconsiderate people – I continue to dislike them to this day. As a bigger-than-average teenager and young man, my strong passion for justice and helping others also contributed to my taking on what was in a sense a “protector” role, whether on or off the field. I am 6’ 2” and 240 pounds, but a total softie on the inside (the real me). Unfortunately, I often found myself involved in physical altercations and skirmishes that had initially involved others being mistreated in some sense and ended up with my coming to their rescue or defence more frequently than I probably should have. I can’t even begin to count or remotely ascertain how many punches I had needlessly taken to the head over the years in this regard – here, too, my parents were largely unaware. All I have left are the physical scars to show for them, and the internal damage to my brain tissue. I recall one specific instance when I stepped in to intervene in a situation involving a young woman who was being sexually harassed by a group of men at a night club. I was ultimately beaten, punched and kicked repeatedly by four to five guys, but by doing so, I saved a young woman from being harassed, degraded and humiliated, and she was profusely thankful. I would do it again in a second.

Good intentions aside, I believe the increased frequency of these instances throughout my 20s can be traced back to behavioural issues associated with physical changes in my brain that were attributable to all of the recurring head injuries. I struggled to control my impulses and had less inhibitions, at times when I should have been more controlled. I have no doubt that this was because of the head injuries. Emotional regulation and impulse control problems are sure signs of this and there was no other likely cause for the changes. Contrary to what I was being told, I was not simply looking for attention. Nor was I just a bad guy who liked to fight. I was a young man with a brain injury in need of help.

It was around this time that I first began to notice signs of depression. At 16 and 17 years of age, nobody really knew what was wrong. I saw my family doctor and was given a standard antidepressant to help with, what I was told, was normal adolescent imbalance. The medications helped for a little while but it wasn’t long before I discontinued using them entirely; cold turkey. In my view, and together with the behavioural issues, aggression (however well intended) and impulse control issues, these were the subtle signs of something more sinister beginning to take hold. The subtle indicators of TBI and PCS were easy to miss and mischaracterize as a common teenage imbalance, and I blame nobody – but I now know this is when the snowball effect began. Serious changes were taking place inside my brain… and in the early 2000s, who really knew?

I was always a smart kid. I consistently scored well on achievement exams and intelligence was never in question; every teacher knew I had some kind of gift for articulate communication and advocacy. What was in question was my motivation and effort. After a while, I just stopped trying. My parents were mad at me and sought to discipline me for it and, so, too, did my teachers and school administrators – I didn’t even care. Keeping a kid in detention or suspending him for not trying hard enough obviously was not the answer. That was entirely misplaced. Again, looking back, I now know this is when the snowball effect of concussion and TBI took root in my brain; everything pointed in that direction. In time, I acceded to the demands of my family and requests of my teachers to start trying in school. I did just that, ultimately graduating magna cum laude from a national university with my degree, achieving a near perfect GPA.

However, my problems continued. Impulsive behaviour, irritability, mood imbalance, anger, depression – the list goes on. I was assessed, and assessed again. “No, you’re not bipolar” and “no, this is not a personality disorder” is what I uniformly heard from doctors. Despite these ongoing struggles, my passion for justice and helping others continued. I would not be deterred. I eventually landed at a top Canadian law school where I again excelled academically. I was well-known by my peers and law school faculty alike for skilled communication, articulate advocacy and a tenacious commitment to fighting for what’s right. “He is a bright, ambitious and articulate person, and he is certain to become a distinguished graduate of any law school he attends” is what one law school professor (now a judge) said of me. My commitment to excellence and proven achievement led to me being recruited by almost every major national law firm in Canada. Given my ongoing symptoms, it was not always easy but I managed. This all changed during what was my final semester of law school – only one month away from law school graduation.

In March 2013, I attended a law school mixer at a local bar. It was a well-attended event by law and medical students and by all accounts, a fun night. That is, until the end of the night when a group of unidentified men (neither law nor medical students) attended the private event and were removed for harassing a group of female law students. I was alerted to this by the female law students and exchanged words with this group of men. The group of unidentified men were successfully removed from the premises. As we were exiting the establishment later in the evening, I was attacked from behind and thrown into a cement wall. I have no recollection of this and my understanding is based entirely on what I was told by witnesses. I was knocked unconscious and awoke disoriented in a pool of blood with a severe laceration to my head. I was trying to stand-up and move but my arms and legs were not responding. I was scooped-up off of the ground by the establishment’s staff and immediately taken to a hospital. My head was stitched-up and a CT scan revealed no skull fracture or internal bleeding. Still disoriented, I was discharged and sent home alone. Since that time almost eight years ago, I have never been the same.

In the weeks and months that followed, I began drinking heavily. On the advice of my physicians, my start-date with a large national law firm where I’d be completing my articles (i.e. lawyer licensing process) as a Student-at-Law was delayed because of how I was feeling. I was scheduled to start in June 2013 and my start had to be rescheduled to August 2013. This instantly created tension with my new law firm, who looked at me and because I appeared to be fine on the surface, didn’t believe a single word I was saying – even with the medical confirmation in hand. “Concussion?”, “didn’t you recover from that bump on your head in April?”, they would ask. They just didn’t care to understand. Nevertheless, I was expected to work 60-80 hour work weeks, be “on call” at all hours and make myself available on a moment’s notice. My medical condition didn’t supersede this “rite of passage” or otherwise justify any accommodation in what is the “old boys’ club” of the archaic legal profession. It wasn’t long before I couldn’t keep-up with such rigorous demands. In a profession like law where your worth is determined solely on the basis of how many hours you bill, and how much revenue you generate for the firm, I was cast aside and alienated from my cohorts. I was placed in a small office in an entirely different building location and essentially left to rot in silence. Senior members of the firm had been circulating an email about me with funny memes attached, poking fun at me for being a “drunk”. This was something that had been happening for months, unbeknownst to me until another lawyer drew it to my attention. These were people responsible for my legal training, people I trusted. It was unconscionable.

The firm’s Student Committee told me that I wasn’t liked by the Partners and therefore would not be welcomed back upon the conclusion of my 12-month articles. According to the Partners, I was not permitted to refuse requests for assistance at 9 p.m. on a Friday evening, or at 7 a.m. on a Saturday morning, regardless of how I was feeling medically. To do so made me a non-conforming, “wrong fit” for the firm. In reality, I know I was cast aside because the firm didn’t see enough opportunity for revenue generation with their investment in me because of my PCS and restricted working capacity relative to others, which was only being made worse by the absurd constraints placed upon me. And I know this because I received several very strong references from senior and well-respected Partners of the firm, despite what the Student Committee was saying to me. I was shattered. Everything I had worked so hard for was gone, just like that, and all because of PCS, a medical condition that they doubted and did not recognize. Had my medical condition been cancer, or something else the firm could have capitalized on from a public relations perspective, I’m certain the treatment received from my firm would have been different. But concussion and PCS? Nah, there’s no goodwill or marketing opportunity in that, they thought. I was just dead weight and some kid dealing with depression to them. That’s just plain wrong, any way you look at it.

I moved to a new employer after being called to the bar in September 2014. I still had problematic symptoms associated with PCS in connection with the March 2013 TBI, but the change in environment was positive. I had more flexibility in my work schedule, more supports and an increased work-life balance. I was starting to feel better. All of this progression came to a screeching halt only a few short months later, when I was involved in a serious car accident in November 2014. On my way to the gym one night, completely sober but extremely fatigued, I went through a red light at an intersection and collided head-on with another vehicle at a reasonably high rate of speed. I am ashamed, and it’s not something I generally talk about, but it appears as though I was at fault. I do not remember the car accident and my understanding of it is based only on the recollections of witnesses and dashcam video footage from the other driver. That poor driver – I have much guilt and shame about it. Fortunately, the other driver was generally okay but my heart still aches. As for me, yep – another serious concussion, only 17-months after the last serious head injury, and just as I was starting to feel somewhat well again. My vehicle was a total write off, my head slamming violently from left to right, front and back. I finally came to a stop some distance away, completely turned around and on a sidewalk. My PCS had been causing me to feel very fatigued, but I pushed myself to go to the gym that evening after work, around 7 p.m. – I shouldn’t have done this, it was a mistake. Disoriented and confused, I was pulled out of the vehicle by a concerned passerby. PCS had come back to bite me again.

Based upon the previous mistreatment of me, I wouldn’t let myself fall victim to that discrimination again. I immediately tried returning to work after a couple of days, but it wasn’t working. I couldn’t think straight or concentrate and was overwhelmed with migraine headaches – I was fumbling words, unfocused and beyond exhausted. I was mad at the world… man, was I mad. I started drinking excessively the night after the accident to numb the pain, but it wasn’t working. I went and saw my doctor who immediately recommended time off from work. Given my longstanding history with head injuries, I was now worried about my future, my employment prospects and my wellbeing. I had almost $100,000 in student debt to pay off from law school, I couldn’t just stop working, right? I had fallen into an even deeper depression, and my love affair with alcohol blossomed into a full-blown addiction. Over the next three months, I went through an occupational rehabilitation program, designed to help me heal and return to work. That helped only minimally and after three months of short-term disability, I was feeling pressure from work. I returned to work on a graduated basis in April 2015, starting with half days. My father was urging me to get back to work as quickly as I could – to him, my employment prospects were bleaker the longer I was away, injury or not.

My superior thought I was abusing the system and didn’t believe I had a bona fide medical condition. He would make public comments like “I mean, it was just a little bump on the head, right?”, “are you enjoying those half workdays?”, etc. It was extremely uncomfortable – talking to Human Resources about it resolved nothing. It’s like he was deliberately trying to push my buttons, knowing I was recovering from a serious head injury. At one point, this guy even engaged me in a full-blown shouting match in my office, where he explicitly questioned my aptitude.

In the end, as soon as my job protected medical leave concluded, I was terminated immediately in September 2015. By this time, my PCS was in overdrive. I was still labouring from the effects of the November 2014 car crash when, once again, my employment was stolen from me in what we can reasonably infer was because of my medical state.

Fast forward to 2017 – the employment law firm I had retained in 2015 to sue my former employer for wrongful dismissal and discrimination subsequently hired me as its senior employment law associate after it was impressed with my knowledge and passion for employment law. Obviously, having been my lawyers, they were intimately familiar with my medical condition and PCS. In fact, we had successfully settled the case against my former employer on this basis. Knowing of my PCS, the firm had agreed, time and time again, to provide me with short-term disability benefits in the foreseeable event that my PCS ever required me to take another medical leave – a promise that was never honoured. By September 2017, I had already been to a residential inpatient treatment centre for substance abuse after an unsuccessful attempt to drink myself to death on December 31, 2016. Feeling better in my newfound sobriety, I had now been diagnosed by my endocrinologist with an irreparable injury to my pituitary gland. According to my endocrinologist, my brain had been so badly battered and tossed around over the years, all the blunt force trauma caused my pituitary gland to stop functioning. Because of this, the combined effect of my PCS, demanding working hours and associated stress as a busy lawyer, and my body’s lack of naturally produced growth hormone (not in the sense of “body builders”, but that which is necessary for basic bodily functioning) caused me to tank and run right into the ground. I had to take another medical leave of absence as the cumulative effect of all of this had caused me to become completely burned out – I would now be starting a new medication. This time, however, I would have to do so on an unpaid basis as my employment law employer reneged on its promise to provide short-term disability coverage – the irony that a group of employment lawyers would so severely marginalize its employees. In any event, I didn’t previously know that repeated head trauma could damage the pituitary gland and cause it to stop working, resulting in a growth hormone deficiency and making the effects of PCS even worse. I am very thankful for the skill, care and attention to detail I received from my endocrinology team in Calgary.

After generating hundreds upon hundreds of thousands of dollars in revenue for the two owners of my law firm, I was left with nothing – no support at all. I resigned my employment, started my new medication and tried to rehabilitate myself. I was alone and completely cut off from the world, having then only recently ended a long-term relationship in large part, due to problems associated with my PCS. With no income and no insurance (and not even the basic statutory minimum entitlements all employees are entitled to by law in Alberta), I started to default on everything and could not afford to live. But for the emergency financial assistance from my family, I would have been homeless and unable to provide for myself. Once again, suicide was looking like a really good option and I came close to taking the next step, had it not been for some good friends in my circle of sobriety. My credit rating dropped by over 300 points from what was an unblemished and long credit history because of this, and it has never fully recovered. To this day, I still cannot obtain even the most basic financing or credit.

Ten months of unpaid medical leave, being ignored by my professional association with my genuine concerns of mistreatment by my law firm employer, multiple credit defaults, near bankruptcy and an obliterated credit rating later, I had to start earning an income. By this time, I had met my now spouse, and love of my life, who understood me and gave me the support and motivation I needed to get back out there. I had built-up a strong reputation for being a client-focused lawyer and employee advocate and had developed a loyal client base. As a justice oriented, relatable and down-to-earth guy, I resonated with the public. I took it upon myself to start my own employment law firm, with a particular emphasis on assisting employees only – a large undertaking for anybody let alone somebody with serious PCS and a pituitary gland injury, but I was ambitious. From the get-go I faced an uphill battle with my professional association.

The professional association requested sensitive medical documentation and subjected me to questionings, assessments and the like, impliedly assuming I was unfit to practice law because of my PCS and pituitary gland injury, a medical condition it didn’t understand, and did not want to understand. It was clear that this archaic and outdated legal profession was incorrectly referring to PCS as a “mental break-down” (as if it were still the 1970s) and stigmatized me because of it. I really do hate that term and think its use is reflective of a complete unwillingness to understand what PCS really is; a brain injury. I was subjected to a clear double-standard throughout the administrative approval process and felt completely marginalized and discriminated against. By this time, I had also just found out that my spouse and I were pregnant with our first child – I knew I had to act fast in creating something to provide for them, not knowing exactly what the future had in store for my health. That was of real concern.

Over the next 2.5 years, between 2018 and 2020, I was relentlessly targeted, harassed and discriminated against by my profession and a select handful of rogue people in the professional association in particular. This included the time my spouse and I were in the NICU with our son who was clinging to life. It just never stopped. I spoke out against my mistreatment by the privileged few who run Alberta’s legal profession, expressed that the mistreatment of me was making my PCS worse and things only intensified because of it. The professional association and my legal profession cast me aside and wrote me off as being “crazy” or a “bad apple”, however misplaced that actually was. These folks were referring to medical documentation from my comprehensive team of doctors specialized in concussion and brain injury as “insufficient”. This was beyond disheartening. Not only was there never a single accommodation made, the professional association took it a step further and engaged in a deliberate scheme to exacerbate my PCS and pituitary injury and run my health right into the ground. My human rights were not only disregarded, they were brazenly violated. In the end, and after graduating from law school at the top of my class, my career, livelihood and ability to provide for my young family has been stolen from me – not because I did anything wrong, but because I have a brain injury that was unrecognized and laughed at. The successful business I created was egregiously taken from me in bad faith by a group of bullies who didn’t believe PCS was a legitimate medical condition.

As a result of the 2+ year campaign of mistreatment and discrimination, my PCS has significantly worsened. At times, it is difficult to function in even the most basic of ways. Among other things, I am angry and react impulsively. I am a lightning rod for angry outbursts, for which I have been prescribed an anti-seizure medication to help stabilize it; however, it has zombielike side effects. I do not want to live that way. Of concern, I now have numerous brain lesions in the frontal lobes of my brain that were not previously present. Of course, my physicians reasonably infer this is a progression of my brain injury, due to the extreme and sustained stress I have been labouring under over the past 2+ years which has irreparably aggravated my condition. This all could have been prevented if PCS and its debilitating effects had been understood and recognized by the professional association. I now believe I am suffering from the deleterious effects of CTE, and that is a very scary thought. Not only was my career taken, what was left of my health has been stolen from my family, spouse and children. I’m nevertheless proud to have pledged my brain to UNITE Brain Bank (formerly VA-BU-CLF Brain Bank) to help further the research into concussion and CTE, once my time is up.

I do not know what the future has in store for me. I do not know if I will ever again be able to provide for my family (we also just welcomed a second child amidst this chaos), something I worked so hard to do despite my PCS. I do know that I want to be an agent of change. My PCS aside, I have a gift for communication and leadership – that has never wavered. Perhaps my calling in life is now to increase awareness of the troubling and sinister effects of concussion, TBI and PCS. If nothing else, to ensure no other individual afflicted with these conditions is so brazenly harmed by a professional association (or employer) that fails to recognize PCS and TBI as a valid medical condition. I will be that advocate for change.

Since going public with my story, I have received a lot of support… I guess my point is, don’t let anyone tell you to be quiet – silence helps no one. Talk about your problems and don’t be afraid or ashamed like I was, for far too long. We all lose when these things aren’t talked about. The silver lining in all of this? People are starting to understand my story and what it’s been like – those misperceptions of PCS and brain injury are changing in real time. The positive energy associated with that validation and support from the public is immeasurable. Remember, we aren’t helped unless we ask for it. PCS is all too real. It’s time society recognized it in a manner no different than cancer – let’s change that perception by working together to foster understanding, empathy and awareness. It’s never too late. We’re in this together.

My Second Birthday

Mathew Hill is an Occupational/Physical Therapy Assistant living in Medicine Hat, Alberta, Canada. Originally from the United States, Mathew came to Canada in 2007 as a professional coffee roaster, a career he had pursued since 2000. Following a lifelong desire to help people, especially those pursuing neurorehabilitation, Mathew left behind his career in coffee in favour of receiving the education for and pursuing a career in rehabilitation where he could directly help people. In November 2021, Mathew married Mhairi Clare Donnelly, whom he met in Scotland while attending the AGM for the Robert Burns World Federation. Mhairi and Mathew stay in touch every day over Messenger and emails and look forward to a world post-COVID where they can begin their lives together.

And, Mathew has never lost his love of coffee!!!

 

Unlike most people in the world, I have two birthdays. My birth records show that I was born in San Antonio, Texas, on a May date in 1970. My second birthday, though, is August 22, 1986, in Anchorage, Alaska.

It was the summer between my sophomore and junior years at Bartlett-Begich High School and I was on top of the world. I was a varsity wrestler and swimmer at school, had made honour roll, was enrolled in Advanced Placement English and I had just gotten my first car. Nothing could go wrong. And, yet, true to a persistent gut feeling I couldn’t shake, something did.

I was at a friend’s birthday party the evening of August 22nd when another friend arrived riding a motorcycle. Eager to ride it, my friend said I could ride it only if I wore his helmet. Though I did not want to wear the helmet, he, thankfully, insisted. It was while riding the motorcycle that I lost control in a sudden acceleration and in swerving to miss a lamppost, struck the rear-end of another friend’s parked van. The force of the impact drove me head-first into the van’s rear section.

Quick to my side, my friends found me unconscious and beginning to convulse. One friend was quick to take control and put her make-up compact between my teeth so I wouldn’t swallow my tongue and made sure I wasn’t moved.

911 was immediately called and I was taken to Humana Hospital where my Father, Dr. Richard Hill, who also happened to be on staff that night, worked as a neuroradiologist. Still unconscious upon arrival, the diagnosis was that I had suffered a severe brain injury. CT scans proved this showing that I had suffered what is termed a “shearing injury” of the right hemisphere of my brain resulting in multiple bleeding points, or hematomas, in the frontal occipital lobe, and the motor cortex. The largest hematoma was a nickel-sized bleed located deep at the base of the brain just above the spinal cord where motor functions are localized before being transmitted down the spinal column. The diagnosis was quick and easy: the left side of my body was paralyzed.

The paralysis, though, was not the immediate concern. While already comatose, the swelling in my brain caused by the multiple hematomas had to be dealt with before the resulting increase in cranial pressure caused by the bleeding and swelling choked off the flow of blood to my brain and killed me. I was given sedatives to deepen the coma I had slipped into and to slow my metabolism, as well as strong cortical steroids to halt my body’s swelling/immune response. An intubation tube was placed down my throat connected to a respirator that delivered a constant flow of oxygen to my lungs. It was a race against time between the swelling in my brain and the administered treatments, with only my continued survival proving that the treatments were winning.

The CT scan had shown the bleeding points both too diffused throughout the brain and too deep to allow for surgical options to relieve the pressure. The initial prognosis was that I would likely die. If the treatments proved successful and I was able to survive and wake from the coma, the consensus was that I would be handicapped, both cognitively and physically, and would require living assistance for the remainder of my days.

About two weeks later, having begun to wake from the coma a few days before, I gradually became aware of my surroundings and could tell by the smell and look of the room I was in that I was in a hospital, though I had no memory of how I got there. Days passed and as my lucid periods both lengthened and improved, I became aware that friends and family were constantly at my side. In addition to my friends from school, there was my mother, a nurse practitioner living at the time in Ohio, my brother, who lived in California, as well as my father and stepmother, with whom I lived in Anchorage, Alaska. Still very “groggy” and comprehending little, I couldn’t understand their concern, nor, as I had not yet become fully conscious, could I understand that the left side of my body was now completely paralyzed (a condition called hemiplegia), let alone that I even had a left side to my body. As far as I was concerned, the only side of my body that existed was the right side.

In addition to the paralyzed left side of my body, effects from the other hematomas in my brain began showing themselves. A hematoma in my frontal lobe, where emotion and individual identity are located, had changed me on a deeper, emotional and identity level; not only had my life been forever altered, but I couldn’t fathom how to “feel” about it, nor understand the feelings I was having. I felt like I had become a stranger to myself and I was being forced to get to know him in a rushed, nearly incomprehensible way. This identity confusion was compounded by the damage that had been done to my short-term memory. For all intents and purposes, my long-term memory was intact, but my short-term memory and ability to access both old and new memories was impaired. Recalling a memory, whether new or old, was a constant struggle, and often new memories, activities or conversations I just had, simply bled away until a trigger or reminder of the event or conversation brought the memory back to my conscious attention. Or, as in many instances, conversations had to be replayed for me to reinforce the memory of them. The memories were there, it was explained to me, but it was the “filing system” I used to access them that had been damaged and that needed to be retrained. Adding to this was the frustration stemming not being able to recognize faces, a condition called prosopagnosia. More times than I care to recall, friends I knew from school would come up to me and start talking about this or something else and I would have to ask them to stop and please remind me who they were and how I knew them. (This difficulty plagues me still today in that I need to have repeated contact with people to form strong, long-lasting memories of them. If an acquaintance goes away for a few months and then returns, I still need to get to know their face and identity all over again).

Initially, I also lacked what is termed insight. As far as I was concerned, since I couldn’t remember the accident happening (the 6 hours of my life prior to my accident had been completely wiped from my memory), that meant nothing was wrong with me. And because I felt nothing was wrong with me, I persisted in holding to this assertion, in spite of it obviously not being the case. This “denial” or lack of ability to understand the reality to my condition is called Anosognosia and is defined as a condition in which a person with a disability is cognitively unaware of having a disability due to an underlying physical condition.

The key issue lay in that in order for physical or cognitive therapy to take root and be effective, it is necessary for head injury survivors to become fully aware and conscious of their deficits (gain insight) so that they can actively participate in the work and exercises put before them for rehabilitating their cognitive and motor functions. If they are not able to make this mental shift towards insight, the health care professionals face the harder challenge of trying to motivate survivors who don’t feel the need or desire to work to get better.

In my case, thankfully, I was able to gain the insight to my condition from listening to my friends and family explain again and again what had happened to me, aided by seeing pictures my mother had taken of me in my intubated, comatose state. This, plus the fact that I knew I was in the hospital, helped me to make this vital mental shift. It took more than a few weeks, though. I know I argued with them, claiming everything was OK and that I could remember everything. Because of the initial lack of insight, as far as I was concerned, everything was just fine with me. Reality, though, was able to break through where I could see the gravity of my situation. I was finally able to recognize and accept that I was, in fact, paralyzed on the left side of my body and had trouble remembering much of anything moment to moment. The comprehension that I had a lot of work ahead of me, I also came to see, was a gross understatement.

Fortunately, I made daily improvement in both physical and cognitive rehabilitation, even quickly surpassing the initially conservative (dooming) diagnoses that I would never fully wake up. When my family asked the head doctor in charge of my care – a Physical Medicine and Rehabilitation Physician – how I was able to recover so well and so quickly, her answer to them was, “I don’t know and don’t tell him. Just let him do what he’s doing.” Rather than risk me thinking my recovery was somehow “not right” or unexpected, they all kept mum to me and let me continue progressing as far and as long as I could.

I was discharged a month and a half after waking from my coma and a month later began spending my days in rehabilitation at the Alaska Treatment Centre (ATC), which had a stroke/neuro rehab program. Following a month of intense full-day rehab, I returned to high-school part-time in the afternoons with mornings still spent at ATC where I continued my physical, cognitive and social rehabilitation. While eager to be back at school with the hope that familiar surroundings and friends would somehow help me to return my life back to the way it was before the accident, it was another shocking and disappointing realization that not only did I have trouble remembering fellow classmates I had known before, but I also couldn’t remember from where nor how I actually knew them. Additionally, school and education were no longer as easy as it had once had been. I was forced to drop out of Advanced Placement English, opting instead for a self-directed Creative Writing class, and I was forced to audit Algebra II and repeat it the following semester because understanding the methods for solving last night’s homework were completely lost to me the next day. As well, my slippery memory was always an issue in recalling subject matters and discussion topics, to say nothing of what had been read or studied in preparation for a class. Hours of repeatedly reading and re-reading the same assignments, preparing and reviewing flashcards, as well as crafting mnemonic memory cues became usual and necessary practices.

My occupational therapist accompanied me the first few weeks back at school not only to assist me in negotiating stairs and walking to and from my classes, but also to evaluate my ability to function as a student in a regular public high school setting. While I insisted, and fervently hoped, that I could return to the life of a “normal” teenager in high school, my therapists and doctors rightly insisted on assessing my performance to make sure this transition was an actual possibility.

As humbling it is, when I look back at that initial time back at school, I know that if the decision had been made that I had needed to switch to a different school geared more towards students with special needs, it would have been the right decision. Thankfully, though, and I can still feel this relief, I was able to successfully make the transition back to life as a “normal” high school student. Though “normal” would prove a term that not only no longer applied to me, but also one that seemed denied to me because I had changed in such fundamental and permanent ways. I was no longer the person my friends remembered me being and the challenges brought to me by the changes in me had little in common with the challenges they faced in their lives. Also, the physical limitations placed on me by the paralysis and the labored incremental improvements I worked to achieve meant my successes paled in comparison to their youthful dynamic physical development. I was no longer able to compete in wrestling and when I did return to swim on the school swim team, my previous speed and ability in the water had been taken away from me such that I was transitioned to swim in the slower lanes and compete in non-varsity races.

And now I walked with a notable limp and slight listing to my left side. I swung my left arm when I walked, but only when I remembered to, and even then it didn’t look the same as the arm swing on my right side. I had no physical bi-lateral symmetry; the left side was trying to keep up with the right side and the right side was working double-time to pick up the slack caused by the left side. This was most apparent in the swimming pool where I now had a markedly dominant right-sided stroke causing me to almost zig- zag in the swim lane.

But these were only the physical limitations. The changes in my personality and in how I understood life around me also had their challenges. I didn’t “get” things the way I used to be able to, or the way other people did. Many things, including myself, were a mystery to me and I often felt not only confused, but also lost in the maze of life that others appeared at ease in negotiating, whereas I limped along and found my way via trial and error. I had changed on a fundamental level and though my friends still remained friends, I found myself no longer included as an equal in their circle and was in a position where I needed to find a new circle of friends.

Life had dealt me a difficult blow and I had just barely begun the road to recovery, yet I was surviving. And just like in the hospital, I proved a resilient and determined person and was able to graduate with my original class and was accepted to a 4-year college with an academic scholarship.

From a Bachelors of Arts in Philosophy, I went on to attend paralegal school, receiving my diploma and a Certificate of Achievement. I later earned an MBA from John F. Kennedy University in Pleasant Hill, CA, which I parlayed into a profession in the coffee industry, working as a coffee roaster and production manager.

In 2012, I moved to Medicine Hat, Alberta, and decided to go back to school to get a 2-year degree for occupational/physical therapy assistant. It had been a long desire of mine to work with TBI survivors and help them in their rehabilitation.

In addition to working in a local clinic, where I have treated a number of TBI survivors, I speak to high school students and present seminars on the realities of TBIs and the long road of neurorehabilitation.

When I present on TBI rehabilitation today, I am often asked how long it took me to recover from the TBI. My answer is always, “What day is it?”. Whatever date they give, I tell them, “I am still recovering”.

I am fortunate to say that I have led an active and interesting life despite the TBI. This having been said, I can say with certainty that it is the unseen, what I call “insidious” effects of the TBI that persist and that I still work on. These are the emotional, behavioural, social effects that affect my ability to regulate my emotions, my stimulus response and my decision-making.

I am 34+ years since the injury I received. I am no less involved with my rehab as I was the day I was first wheeled into the PT department at Humana Hospital in 1986. And, like those first days in rehab, every day begins with the decision to work on what I can, try to apply what I learn, practice insight and maintain my self-awareness.

In my world, this is what it means to be a TBI survivor.

MH