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

Emily Fraser (she/her) is the Community Engagement Coordinator at Mount Royal University in Calgary, Alberta, Canada. Prior to her brain injury, she was an educator and musician. Emily is passionate about creating inclusive spaces where everyone feels a sense of belonging. Outside of the workplace, she is the host of “The Calm Podcast with Emily Fraser” and runs @post_concussion_support on Instagram.

THE EARLY DAYS

In October of 2018 I was rear-ended as I was leaving work. At first I thought I was fine and even drove myself home, but the symptoms quickly started piling up. Despite many attempts, returning to work as a middle school band teacher was impossible. I spent months unable to tolerate light or noise or physical activity. The headaches were unbearable, I could barely move my neck, and my eyes felt like they were constantly burning. I was having panic attacks almost daily and my life consisted of doing pain relief meditations and attending several medical appointments per week. I remember being so dizzy that turning over in bed made my head spin. I had always been such a high achiever, leading various student clubs, volunteering outside of work, directing musical productions and performing oboe in symphonies. In the blink of an eye, my entire life had changed.

Prior to my injury, I had always believed that my self-worth was related to how busy or productive I was. The first several months of my recovery were so challenging because it was the first time I had been forced to slow down. I became depressed and felt I had no purpose or reason to live. My nervous system was stuck in fight or flight, so I was always crying or screaming. I knew my behaviour was pushing my family and friends away. At that point, I found a couple of post concussion syndrome support groups on Facebook. Finding a group of people who understood what I was going through and being a part of the virtual concussion community changed the course of my healing journey.

FINDING COMMUNITY

I eventually created @post_concussion_support on Instagram to reflect on my experience, connect with others, and share resources. Exposing myself to uplifting individuals on social media really helped me adopt a growth mindset. I started learning how to set boundaries, how to advocate for myself, and how to clearly communicate my needs with loved ones. The quality of information online was incredible, and I was able to trust my intuition on what I needed and find some amazing health practitioners. In the fall, I started my gradual return to work teaching one “Career and Life Management” course. I was only working three hours a week, and even that was exhausting and led to major setbacks. I would meditate in the car before entering the building, had a pillow under my desk to rest often, and would wear sunglasses and earplugs while teaching with the lights off. Looking back, I should not have been back at work yet, but at that time I still associated my career with my identity and refused to “give up.” I had to be vulnerable with my students, and they were so empathetic. They took breaks to silently write in their journals when I was overwhelmed, and joined me in deep breathing exercises when my symptoms were flaring. I feel grateful to have formed that bond with them.

COVID-19

Then the global pandemic happened. Although the restrictions negatively impacted so many people, I felt like the world was finally living like I had been for months. No more FOMO (Fear Of Missing Out)! Teaching remotely was unexpectedly ideal for me. Yes, I missed the connection with students, but I had so much more energy not having to drive to work and be in an overstimulating school environment. Wearing sweatpants to work was an added bonus. During this time, I started my podcast and offered temporary virtual support groups for others in the concussion community who could no longer access in-person treatment. It was so fulfilling, but I was falling back into old patterns of being busy to prove my worth. I had to take a step back and make myself a priority. The lesson of needing to put my oxygen mask on before helping others is one that I seem to have to re-learn constantly.

By the fall of 2020, I had worked my way up to 12 hours of teaching per week, but it was becoming obvious that I would need to shift careers if I was ever going to get back to full time. Despite making tremendous improvements, directing junior high band is one of the worst work environments for someone with persistent concussion symptoms. I also still wasn’t able to cover my supervision, homeroom, or co-curricular requirements. I signed-up for the online program “Concussion Compass” and completed all of the mini-courses. I started seeing some new doctors, committed to an exercise routine, and increased my focus on planning/pacing. I also started visualizing my body healing every night as I was falling asleep. Instead of acting like my body was against me, I worked with it, offered myself compassion, and started to truly believe in my ability to recover. These changes led to huge improvements in the early months of 2021. I was able to resume my Masters of Education online, graduate from vision therapy, and find a new job at a university that met all of my requirements for accommodations.

CHANGED FOR THE BETTER

As I write this, many of my symptoms have significantly decreased or disappeared. Many of my health practitioners ask me how close I am to my pre-injury self. It is so hard to answer that question. Emotionally, mentally, and spiritually, I am in a better place than I ever have been. I have learned so many tools, discovered how resilient I am, and found such a strong support network. I am more grounded and connected to myself than ever before. Physically, I still feel limited at times, but I have learned how to plan and structure my day so that I can avoid or manage symptoms.

Every morning I am grateful that taking a shower or putting on clothes doesn’t wipe me out for the entire day. When I was in the darkest times, I couldn’t find anyone who had recovered from Post Concussion Syndrome. I saw over 25 medical practitioners while searching for answers. I am sharing my story because I want everyone to know that healing is possible. I know how isolating this experience can be. The invisibility of our injuries doesn’t make it easy for others to understand and support us. No matter what stage you are in, ups and downs are part of the process. Recovery isn’t linear. If you start to believe 100% in your ability to heal, you will get better.

Don’t give up. You are not alone. Please reach out anytime for support. I would love to share more about what treatments helped me and connect with you. Send me a text or voice message @post_concussion_support on Instagram.

Valéry Brosseau is a passionate speaker, writer and mental health advocate whose lived experience with mental illness has taken her on a journey to combat stigma through mental health awareness. She began volunteering in mental health in 2013, winning awards for her volunteer work, and then pursued further education and training in this field. Valéry now delivers talks and workshops, raising awareness and equipping people with the tools and language to support others and manage their own mental health. In 2019, she delivered a TEDx talk on the stigma surrounding suicide.

Warning: This story contains mentions of suicide and may be triggering to some readers.

In 2014, I tried to kill myself. I overdosed and had a seizure on the tile floor, which resulted in a concussion. A few weeks later, I attempted again. The doctors told me that my concussion was most likely a factor in this.

I started my process of recovery managing the concussion as well as setting myself up for the mental healthcare I needed. Though I did not experience long-lasting symptoms following this concussion, I know how closely related concussions and mental health are.

When I woke up in the hospital after that second attempt, I started thinking maybe there was a reason neither time worked. Maybe there was a reason I was sticking around. I never could have imagined that 5 years later I would become someone who educates people on mental illness and speaks in front of crowds. I could never have imagined that my story would have power, that it would effect positive change and inspire people. However, what I’ve overcome is what makes what I have to say all the more compelling.

I spent years believing that if I tried harder I could be better – “normal”. I saw most people living without crumbling at every onset of emotion and decided that I was doing something wrong. It took me years to realize there was a reason things were more difficult for me, but even then I continued to believe that failing to experience things normally was a flaw in character as opposed to a medical condition. I was taught by the stigma placed on mental illness and the attitude society often takes toward mental health issues that I should be blamed for it.

I now know I have struggled with mental illness my whole life. Having reached the other end of the tunnel alive, diagnosed, and supported I can understand what is different about me, how it affects my life and how I can manage it. In the case of so many people like me, mental illness is a chronic problem that will be managed for years if not the rest of their lives. The key to managing these issues is speaking openly, candidly and honestly about mental illness. Things are no different with head injuries. Concussions and post-concussion syndrome can stay with us for extended periods of time, if not the rest of our lives. Talking about it without judgment or stigma is the best way to receive the help we deserve. This is what I hope to promote and support.

At a time in my recovery when I was feeling more stable, I decided to seek a volunteer position at a crisis helpline. I wanted to help provide a service I wish I knew existed when I was struggling. I was living in Oshawa at the time and found Distress Centre Durham’s website. I have now been involved with DCD for over 7 years, volunteering as a helpline responder, taking on leadership roles and helping train new volunteers. Through this work, I became more and more involved in mental health, taking every training that was made available to me and furthering my skills and knowledge.

In 2016, Distress Centre Durham named me Volunteer of the Year. In 2017, I was awarded a province-wide volunteer award by Distress and Crisis Ontario called “The Spirit of Volunteerism Award” for my outstanding dedication to the distress centre and my volunteer work there.

During my time as a volunteer, I started understanding the importance of speaking up and being honest. I began sharing my story with fellow volunteers and to the volunteers I was training. I found that they were inspired and that they gained a better understanding of the people they were connecting with on the helpline. This encouraged me to keep sharing and keep trying to promote understanding and compassion. In 2019, I delivered a TEDx talk on the stigma surrounding suicide, encouraging openness and honesty. This non-judgment and willingness to share can help us take strides towards a better understanding and more support for head injuries as well. When we experience a concussion, it is important to be able to speak up about our experience and our needs. This can only be done when we are met with compassion.

The mental health field has become my passion. This passion prompted me to start a business as a speaker and workshop facilitator. I aim to use the platform I am creating to connect with people on a genuine level and encourage them to talk about mental health. Talking about it with kindness and empathy is the only way to create a safe space to reach out and seek help.

You might say I have learned resilience and found my passion the hard way, however my struggles have helped me understand on a deeper level the power my story can have. I don’t regret the pain I have been through. I have seen how hard I can fight this thing and all I know is I’m going to keep trying. Whether you are faced with the long terms effects of a brain injury and the mental health concerns that accompany it, or you have an official diagnosis, don’t be ashamed of what you’ve been through – be proud of how far you have come.

Jess Louisa is a Policy Analyst, certified Wellness Coach and an aspiring writer. She hopes to use her writing, coaching skills and experiences to help those who are suffering. Jess aims to embrace empathy, compassion, and faith to inspire hope and healing in others. She is a mother of a 5-year-old sweet German Shepherd, and partner to a very caring and loving man.

After two years spent healing my body from Lyme Disease and getting myself to a place where I could return to my job and leave an unhealthy family, I had done it. I did the impossible and healed from a terrible disease, allowing me to be financially independent again, and allowing freedom from an unhealthy – and at times abusive – family. I made it my first priority once I returned to my job in Ottawa to find a partner – whom I hoped would protect me and allow me to still see members of my family I cared for.

Over the following months, I met a wonderful man, Dylan. He invited me to join a recreational softball league with him. I was hesitant but I had a yearning to return to the active girl I was before Lyme. So, I agreed, even though I had little experience. I asked if I should buy a helmet but was told that no one wears them in slow-pitch rec league. I trusted this and so I went – playing softball under-protected. Then, one game, a pitcher threw a ball pretty hard and being the newbie I was – it took a bit for me to realize I wasn’t going to be able to hit the ball and that it was headed straight for my face. I quickly turned my face – but I didn’t move my head out of the way fast enough. The “soft” ball crashed into the back of my head.

I instantly dropped the bat and felt dizzy. Tears welled up in my eyes from the pain and I felt as if I were going to fall as I walked to the bench, shaking and swaying. The pitcher apologized, my partner comforted me, and I sat on the bench trying to appear tough – trying to hold back the tears. I never liked crying in front of others – especially my new partner and all of his friends. After sitting out the next five innings, I joined the last inning of the game and then went home with a localized headache where the ball had hit me.

I knew I should probably rest – but at the time, I didn’t think it was a concussion. I continued to work as a Policy Analyst on a screen for 8-9 hours a day. The headache wasn’t going away; it was getting worse. After months of fighting terrible pain in my head, I eventually experienced a full episode of memory loss. I couldn’t remember who I was working for, what I was working on, and who I was working with. I had a panic attack as I stared at my computer with a complete loss of what was happening and what I was even doing…

My partner comforted me, I took the rest of the afternoon off and slept in a dark room. Luckily, my memory returned the next day and I booked an appointment with a doctor. This was more than just a headache. Deep down, I knew it was a concussion – but I wanted to deny it; to push it away and continue working. I didn’t want to leave my job for fear of no pay and having to return home to a violent/unhealthy family. I also felt like a failure to have to go on medical leave again when I had just returned from Lyme.

The doctor I saw at a walk-in clinic referred me to a neurologist. After months of waiting, and as symptoms grew worse (light, screen sensitivity, sleep issues, vision issues), the neurologist continued to tell me my only problem was migraines and that it was completely unrelated to the softball incident, even though I had never had these issues prior to the softball incident.

At this point, I knew I needed to get away from screens 8-9 hours per day since it was making my symptoms worse. But I couldn’t do that without financial security and until I found a doctor who specializes in concussions. After a year and a half since my injury, I finally connected with the Toronto Concussion Clinic. What a blessing! I highly recommend them if you are dealing with a concussion and are living in the GTA.

After explaining my story and symptoms to the clinic, they diagnosed me with post-concussion syndrome. At this point, my symptoms now included dizziness, nausea, vision issues, screen and light intolerance, sleep issues, cognitive problems, and depression (uncontrollable sadness), to name a few. I had no idea concussions were so life-changing and to this day a part of me regrets not having purchased that helmet.

During all of this COVID had hit – forcing me to stare at screens even more than I was used to as all my work meetings and medical appointments had gone virtual. This was when my symptoms peaked. I also had glass stuck in my foot from a separate incident, so I could also barely walk. This was hindering my recovery – I couldn’t exercise on my feet. I had also lost three people in my extended family and a dog.

This was my darkest point. I couldn’t watch TV or distract myself on a screen from grieving the loss of my family members, my family dog, and past life. I kept getting refused by doctors to help with my foot and I couldn’t walk, play with my dog, or help with chores on my feet. My parents didn’t help support me and my sister was caught up in her wedding planning. I rarely heard from my family and was never offered their support – even though I had always offered my support and called to check in on them regularly. I watched as my sister would come by 2-3 times a week to the property I was living at with my parents, but never checked in or said hi – even after I would go to her house to offer her help with her baby and to say hi. No one in my family except for my partner chose to fully support and believe in me. I crumbled as my parents criticized my feelings and judged every decision I made. I feel so blessed to have my partner in my life, but we have felt very alone in our journey.

My two best friends had also moved overseas – so really the only person I felt supported by was my partner, Dylan. This created a lot of friction in our relationship. He became depressed. All I could do is pray – and pray I did. I prayed to angels and God three times a day to help me find a doctor to at least help with my foot – so I could exercise and recover my brain and help Dylan. I also continued to persist until I found people who advocated for me and my health and who were willing to help me.

Whether it was God who answered my prayers, or my perseverance – or both – it paid off and on July 15th, 2021 I had surgery to remove three pieces of glass from my foot. This was a miracle and life-changing for my recovery. It grew my faith in God/the universe. I started to shift my perspective from being depressed about all of the terrible things going on – to one of hope.

I continue to pray as much as I can every day and every day I see God/the Universe show up for me in different, but very meaningful and compassionate ways. In ways perhaps I would never have noticed if I was still looking at screens and scrolling through social media. While this concussion has brought literal darkness into my life in many ways (my partner and I live in candlelight at night now), it has also opened up a world full of light – light I don’t think I would have otherwise experienced.

This healing journey has helped me see the beautiful world we live in during an unprecedented epidemic of screen addiction, that I am detached from while I recover. I am more free to see the world in all of its beauty on walks while others stare at their phone. This pushed me to value quality time with loved ones and friends versus scrolling through social media to kill time. This concussion has allowed me to put more time into my favourite off-screen hobbies (dancing, singing, painting, writing, guitar, yoga and running/hiking). I have written my own songs on guitar and painted a full portfolio of paintings that bring me joy and I hope will bring joy to others one day.

This concussion has allowed me to focus more on my own life when my mental health needs it and has taught to not compare myself to others (e.g., by not being on screens/social media). This concussion has also clarified my healthy and supportive relationships where people care for me and believe in me, while also highlighting to me the unhealthier relationships. This concussion healing journey has also forced me to set healthy boundaries for myself and with others – something I previously preferred to avoid. It has helped me see the relationships I should continue to invest in, the relationships I should foster, and the relationships that feed my soul, spirit, body, and mind.

This concussion healing journey has also helped me to have faith in humanity again. It has shown me many compassionate, supportive and empathetic souls who sacrifice themselves in many ways for others. This was something I never had or saw in my life before my concussion – given my family had always been unsupportive and critical of me. It has also brought my partner and I closer and given us the wisdom to resolve our conflicts when they arise.

Finally, it taught me to be my own coach and advocate, and to surround myself with other people who believe in me and can coach me through my breakdowns. It taught me to not be ashamed or embarrassed of myself – even though I feel my parents feel that way of me. It taught me to push past negative people and to be proud of who I am, how strong I am, how far I have come in my recovery and of all the battles I have faced without their help.

If you or someone you know is suffering from post-concussion syndrome, I hope you are brave, persistent, and persevere through your battles. I hope that you believe in yourself – even when you feel no one else does. I truly believe God/the Universe believes in you. Be your own coach – believe in yourself and find others that believe in you too! Those that don’t believe in you will face their own battles one day. I’m not sure others who have not suffered from a concussion will ever fully understand – but there are people out there that will believe in you and that has been good enough to help get me through, and I hope it is for you too!

While not yet fully recovered from my concussion, I have made small improvements since working with the Toronto Concussion Clinic. I am aware of people that took upwards of 6 years to heal and so I have not lost hope. While I am in year 3 of my recovery and perhaps only halfway through it – I can honestly say I am happy to have faced such darkness, as it really does bring out the light (good) in my world and has made me so grateful for the things/accomplishments I have achieved along my healing journey. I hope you may also see the light in your journey and choose to never let go of hope. Things always change, healing takes time, effort and patience – but with perseverance, results await you and there is always light in the journey, you just have to look for it.

“Sometimes we’ve got to face the darkness, to step into the light again” – James Arthur

“Toughness is in the mind and spirit, not in the muscles” – Alex Karras

“Every problem has a solution” – Will Robinson, Lost in Space

“Airplanes take off facing the wind” – Henry Ford

Some things that have helped me cope:

Alexa device to play music, keep up with news, podcasts, messaging and calling people

Therapist (someone to talk to)

Projector (used instead of a monitor or laptop screen)

OnyX Tablet (front-lit tablet that allows you to use it like a phone)

Migralens glasses for when I have to be in artificial light

Yoga and breathing exercises

Diet and supplements (CBD and others)

My very sweet dog and friends

My partner – someone who believes in me and coaches me when I need it

Avoiding artificial lights and screens as much as possible

Exercising with music

Frequent walks in nature

Toronto Concussion Clinic

My name is Alexa Pepper and I am currently Communications Director at Ski Quebec Alpin, Quebec’s Alpine Ski Federation. At 24 years old, I am fortunate to be able to marry a passion for sports, and more specifically my experience as a skier and coach, with a communications background and a particular focus on social media. I am responsible for creating marketing tools for the federation, its partners, and participants alike.

How did you receive your brain injury?

I received my brain injury while road biking. I completely blacked out so I do not remember the details, which was the scariest part for me. I must have hit a pothole and flew over my handle bars, landing on my upper right side. My head and collar bone area received the entire impact. I was VERY fortunate to be riding with the Quebec Ski Team who handled the situation immaculately. An ambulance was called and I was brought to the hospital where they diagnosed my concussion along with a badly fractured collar bone which required surgery. I was operated on the next day and began the recovery process. Although a helmet doesn’t prevent a concussion, the doctors were clear that my helmet saved my life.

What symptoms did you endure?

My concussion symptoms were severe. I suffered from short term memory loss, confusion, bad nausea and migraines to name a few. In addition, I was sensitive to light and noise for 10 days or so. I managed my symptoms by following my protocol. What helped me in a sense, was my clavicle injury which forced me to stay in bed doing absolutely nothing. I stayed away from all of my triggers for 10 days: no work, no screens, no exposure to light or noise. I prioritized rest and communicated my needs to those who surrounded me. I also made sure to eat healthy and stay very hydrated because of all the medication I was on. Mentally, what helped me was short visits from friends and loved ones once I felt strong enough to receive them. I am very thankful to all of those who reached out!

Did you notice any struggles/setbacks during your recovery?

I have been struggling with recovery as far as not being able to practice sports and be active. A set back I had was after watching a movie two weeks after the accident. A severe migraine followed and I was clearly not ready for that much screen time.

Any inspiration that helped you push through your recovery?

The inspiration that helped me push through recovery was knowing that I would eventually feel better. I look up to athletes like my friend Valerie Grenier who went through very painful injuries and came back even stronger.

What motivation would you tell someone if they received a concussion?

I would tell anyone that receives a concussion to listen to their doctors and follow their protocol. This is easier said than done, however doing this is what helped me recover. I am very thankful for the team of people who are following me and helping me recover. As someone who works in the sports industry I cannot stress this enough. Recovering from a concussion takes time and you cannot be too hard on yourself.

Meet Emily, a 2nd year Master’s student and head of the new CLF Canada chapter at the University of Guelph. In high school, Emily suffered two concussions that ended her time in sport. Her experience with concussions and post concussion syndrome ultimately led to a decision to pursue an education in Neuroscience and a future career in brain injury and mental health research.

Eight years ago I unknowingly suffered my first concussion in a hockey practice. At the time, my coaches had not discussed the importance of concussion symptoms and what to do if you were experiencing them. As a result, I continued to practice and play games despite the symptoms I was experiencing. If I had understood the significance of my symptoms, I would have stopped participating in practices and games and ultimately prevented the second concussion I experienced in a game only 2 weeks later. After this second concussion, I experienced overwhelming pain in my neck and head, light and noise sensitivity, extreme nausea and dizziness, and a feeling of grogginess that made simple tasks feel next to impossible. As a result, I was finally directed to seek treatment from a doctor who diagnosed my concussions. I ended up missing 2 months of my grade 10 year and was advised by my doctors to give up all contact sports.

The next few months took a significant toll on my physical, mental, and emotional well-being. Firstly, I was not able to attend nearly 2 months of school in my grade 10 year. During this time, I remember feeling extremely isolated from my friends and teammates, and feeling sad about the opportunities I was missing out on. I spent the majority of each day laying in bed in the dark, with occasional outings to doctor and physiotherapy appointments. A lot of my friends didn’t understand what I was going through, and I found it difficult to describe the feelings of isolation and emptiness I was experiencing.

Discontinuing sport also had a significant negative impact on my well-being. A lot of my identity was rooted in the sports I played, a lot of my time was taken up by practices and games, and I maintained a lot of my friendships through these commitments. I found myself questioning who I was and what I was passionate about without sports, which is something I still struggle with to this day.

I received treatment for my concussions for multiple years before receiving a diagnosis of post-concussion syndrome (PCS). Some of the symptoms I experienced as a result of PCS are fatigue, irritability, anxiety, nausea, trouble concentrating, and blurred vision. Over the years since my diagnosis, I have received ongoing treatment for my anxiety and irritability, and been prescribed glasses to help with my vision. PCS is something I continue to manage everyday, and I will forever be grateful for the love and support I have and continue to receive from doctors, therapists, friends, and family.

My experience with concussions and PCS over the years allowed me to develop an interest in the brain and how it functions after injury. This interest pushed me to pursue and complete an undergraduate degree in Neuroscience at the University of Guelph, where I am now working towards a Master’s degree in Clinical Studies with a specialization in Neuroscience. Throughout my degrees, I have developed a deeper interest in the impact of concussions and other traumatic brain injuries on mental health, and hope to find a career that allows me to combine the fields of mental health and brain injury.

In search of careers in the mental health and brain injury fields, I came across CLF Canada. I felt immediately drawn and connected to their story and wanted to get involved. After discussion with some wonderful CLF Canada team members, I have decided to start a Team Up Chapter here at the University of Guelph. With CLF Canada, I hope to use my knowledge and personal experience with TBI to enhance the quality and accessibility of resources available to young athletes regarding concussion prevention and post-concussion syndrome. Becoming involved with CLF Canada will allow me to be involved in sport in a way that is safe for me, all while teaching others how to remain safe in their sport so they can continue to enjoy doing what they love.

Curtis Smith grew up in Victoria B.C. as a multi-sport athlete. He received a lacrosse scholarship to The Ohio State University and was a student athlete there for four (4) years, from 2000-2003. Once his lacrosse career was cut short as a result of numerous concussions, he became a Firefighter/Paramedic for thirteen (13) years in Alberta. Curtis has a lot of experience with the long term health effects of concussions not only from a personal perspective, but from a clinical (EMS) standpoint as well.

I’ll begin my story with a bold – but in my opinion – true statement: I’ve sustained so much sports related head trauma over the course of my life that the amount of damage my brain has endured has to be in the upper tier of former athletes out there who have suffered concussions. Is this me sensationalizing? Is this me trying to convince you of how tough I was? Or is this me attempting to pad my story for attention? The answer to those questions is a loud and resounding; “none of the above”! It actually makes me nauseous to think about it, let alone put it in writing. It’s a bag of mixed emotions that stem from frustration, regret and the fear of the dreaded question: Do I have Chronic Traumatic Encephalopathy (CTE)? I blame nobody but myself and the overall lack of education during the era in which I played contact sports. Rather than pointing fingers or placing the blame elsewhere, I’m sharing my story (like many others do) to educate and highlight the risks of repeated head injuries, but also to ensure people out there know they’re not alone and there are resources and help available.

My journey started and ended like many others who began playing contact sports in the mid 80’s, up until retirement as an adult. I knew there were inherent risks in playing these sports. I knew the chances of being injured were greatly increased the more sports I played, and the longer I played them. I’ve sustained broken bones, stitches, sprains and many other ailments related to my participation throughout athletics. I do not regret for a second, the path I took to get where I am presently. What I do wish however, is that the information available today on concussions (signs/symptoms, reporting, etc.) and potential long term health effects, were available to me when I was growing up. Again, I want to be clear on this, it’s nobody’s fault as to why things played out the way they did. I do however, want to implore everyone to get a holistic view on concussions through education, research, speaking with experts in this field and speaking to other current/former athletes who have suffered sports related head injuries. Below I’ll lay out for you a few scary results and long term effects of my own, all of which have stemmed from my personal history of suffering multiple concussions.

My name is Curtis Smith, I was a Division 1 lacrosse player for The Ohio State University. I was also a three (3) time All-Conference and an All-American my Senior year, after which I was drafted into the National Lacrosse League and played one year with the Colorado Mammoth. Sadly, I had to retire at 25 years of age as a result of countless (yes, you read that correctly) concussions. Leading up to the final “break the camel’s back” (or put another way “almost obliterate Curt’s brain stem”) hit that I suffered, and which led to five (5) months of Post Concussion Syndrome (PCS), was a colossal list of blows to the head that began at a very young age.

I grew up on the West Coast of Canada, on Vancouver Island (Victoria). I was always athletic from as far back as I can remember. I was on hockey skates when I was two (2) years old, picked for numerous rep teams in multiple sports, always picked first in PE class, etc. However, I’d gravitate mostly towards contact sports. During my era, it was the tough guy mentality of “shake it off, sit out a shift then get back out there!”, or “oh you just got your bell rung, toughen up!” and of course “you don’t want to let your team down do you?!” These were cultural ideologies within athletics that I lived and breathed for the multiple teams I was on. Yet I came to find out that all the while I was doing irreparable damage to my brain and changing my personality along with it.

I grew up playing lacrosse, hockey and rugby. All three (3) of which were relentless when it came to countless blows to the head. I was introduced to box lacrosse (indoor version) via my 2nd grade teacher (her son played), who suggested it to my parents during a parent-teacher interview session. She noticed I was faster than most kids and loved to roughhouse with friends during recess and lunch breaks. That summer, my parents signed me up and I immediately fell in love with the sport. Bear in mind, this was 1987, so at that age we were allowed to cross check, slash and body check each other back then. It wasn’t just legal, it was encouraged! I can vividly remember laying kids out and being praised for it. I can also remember (multiple times) being on the team bus coming back from tournaments with what felt like intense, migraine headaches. The coach or trainer would be rotating ice cold cloths on my head to try and alleviate the pain.

When I reflect back to those years, I realize it wasn’t until around twelve (12) years of age that the cascade effects of concussions began to manifest. 1992 was when the intense, social anxiety began to creep in and my Obsessive Compulsive Disorder (OCD) began to reveal itself. The anxiety would rear its head in school, when meeting new people, and even when attempting to buy a pack of gum from a 7-Eleven, just to name a few (of many) triggers. I was a quiet kid in social settings or around people I hardly knew, others may have used the term shy…and for some, especially my classmates, I started getting a reputation as an a**hole. This was a misrepresentation of who I was and a misconception overall (by many) as to why I acted this way. The behaviour I exhibited back then stemmed from the persistent anxiety and the overwhelming fear of being in the spotlight (outside of sports). I had certain people I trusted and a close-knit clique, but outside of that, it was very hard to get to know me or get more than a sentence out of my mouth.

And so began a long road of rinse/wash/repeat. Receive a hard blow to the head (with associated concussion-like symptoms), dump some gasoline onto the social anxiety/OCD fire and then await the next elbow/cross check/punch/knee/etc. to my head. What’s the definition of insanity again? Oh that’s right, doing the same thing over and over again but expecting a different result. As crazy as it sounds, the only thing that changed for me once I got to college was I narrowed it down to only lacrosse that would continue to perpetuate this vicious cycle. Speaking of college…

My time at The Ohio State University was remarkable. I was fortunate enough to play with many incredible teammates, under a great coaching staff, at an amazing University, while matching up against some of the best teams and players in the NCAA. It would be an understatement to say that I was living the good life, and in my element. As great as it was to play college lacrosse at the highest level, it was also responsible for seven (7) concussions during my time there. After my third (3rd) concussion at OSU, that was also when another long term side effect decided to join my symptom “party”. One that I wouldn’t wish on my worst enemy: Sleep Paralysis.

Sleep conditions such as insomnia, over sleeping, etc. can happen as a result of concussions. This generally depends on the severity, the amount of times you’ve been concussed, PCS, etc. but another type of condition that I’m convinced was brought on by my history of head injuries, is The Old Hag Syndrome. The actual medical term is Sleep Paralysis and it’s a condition where one is put into a “state”, when either falling asleep or waking up, where they are lucid and aware of their surroundings but paralyzed (unable to move OR speak). The kicker here, and most definitely the worst part of Sleep Paralysis, is the person can hallucinate. My first episode of experiencing this and all others since, have had hallucinations associated with it…and they are terrifying!

Now let me be as clear as I can for those of you reading this who have never suffered from, or heard of this condition. When I say hallucinate, I don’t mean I see friendly cartoons or rainbows in the room, far from it. Its alternative name of “The Old Hag Syndrome” was coined for a reason, it’s associated with occult-like entities such as demons/witches/paranormal black masses/etc. The medical community attributes this condition to people who claim they have been abducted by aliens, just to give you some perspective as to how real it feels when experiencing it. I could speak on this for hours as I still continue to suffer from it to this day, but I encourage you to do your own research on this condition if you’re interested.

As noted above, concussions have led to many adverse side effects throughout my life. Over the years, I’ve developed ways to cope/control and even overcome them. Just as concussion and PCS symptoms can vary person to person, so too can their treatment methods. What’s worked for me isn’t a cure-all for others that have endured a similar history of head injuries, but the key is to find the path that works for you. That’s why I think it’s invaluable for all of us to share our stories and struggles, as well as certain methods of coping and overcoming them. For me, it’s been a combination of speaking with healthcare professionals/medication/exercise/meditation/nutrition, just to name the most impactful. The Concussion Legacy Foundation has been instrumental in my path with finding certain resources, hearing other personal stories, education on specific studies and possible treatments, and knowing at the end of the day there are MANY people out there who struggle daily with similar issues. If you have never seen the documentary Head Games (2012), it’s incredible and a must watch. It was also the catalyst for me to start reflecting on my concussion history and to start researching the long term effects of sustaining repeated blows to the head.

My decision to donate my brain to the Concussion Legacy Foundation was an easy one, and was based on a few factors. Former football players dominate the discussion when it comes to CTE, and for good reason. There isn’t a higher profile sport, or organization than the NFL in the United States (in my opinion). Highlighting former NFL players who struggle, commit suicide, etc. is well documented and highly publicized. Part of the reason I wanted to donate my brain to the Foundation was to show that lesser profile sports such as lacrosse, can yield just as bad results…and even worse in certain cases. The second reason was to contribute to ongoing research and the ultimate goal of finding a cure.

Simply put, I’m as certain as I can be (seeing how the only way to confirm is post-mortem) that I have CTE. Looking at my history of concussions, subconcussive impacts, seeing stars (countless times) after taking/giving body checks, the split second silence and blackness I experienced after many hard hits, etc. Combine that with my (periodic) present day issues of forgetfulness, poor impulse control and certain moments of intense irritability and you’ll understand why I self-diagnosed. It’s a sobering thought, no question about it ,and I really hope I’m wrong but I’m not typically one to live with regrets or worry about things that I have no control over. In regards to my concussion history and probable CTE, all I can do now is share my story and help to educate others on the risks of playing contact sports, reasons to never hide concussions from your coach/trainers and to NEVER attempt to “tough through” a concussion and continue playing. Trust me when I tell you (from experience), it won’t end well.

Melanie lives with her husband and young daughter in a small town in Canada. Her family has opened their home as a billet family for Junior hockey players multiple times. The following is a story involving one of her hockey player billets.

The day I became a mother, something shifted inside me. I became more in tune with others’ feelings and more aware of dangerous situations before they happened. Not just for my daughter, but for everyone around me. The Mamma bear reference is a real thing, you don’t truly experience until that magical day arrives.

Recently, the scariest night of my life happened, in my own home. I wasn’t experiencing fear for myself, but fear for my daughter and fear for the safety of a Junior A hockey player left in my care.

At around 4am on a Tuesday morning, I was abruptly awoken by loud voices outside my bedroom door. I opened my bedroom door and it was a team of OPP officers who had been dispatched to my residence for reports of gunshots and a murder having taken place. My husband and my murder, to be exact. Reported by our hallucinating billeted hockey player. After stepping into the hallway I could clearly see about 8 heavily armed Police officers in my house, and multiple squad cars parked outside.

Now, this is a description of a scene out of a TV series or movie. Not something a family living in a small community should ever have to experience. How we got to this moment is where the real story is, and what happened after this experience. Let me start at the beginning.

This wasn’t our first time taking in and being a billet family for hockey players who played for our local Junior A team. When our player arrived, he had already experienced a negative situation with his previous billet family. On day 2 of having him in my home, we noticed little things with his behaviour that were “different”. He would be very forgetful and often spoke to himself. He informed us he had suffered a concussion a year before and he had been experiencing a few minor symptoms (in his opinion, ones that weren’t of concern at all). It was then we first raised concern and questions with the team about his concussion and ability to play safely.

A few days later after practice one night our hockey player had an emotional breakdown. We discussed going home with him, and he was on the fence about it. He carried on with the team even though he was being bullied by other players and unhappy.

A few weeks later, it came to our attention that a work vehicle had been taken from our property without authorization by our hockey player. This was a serious lack of judgment on his part. The team was aware of this happening and we called into question his mental state. Nothing was done to check into his health. After that incident there were other noticeable behaviours which led us to suspect he was experiencing further post-concussion symptoms. He had eye sensitivity to light, headaches, insomnia, almost immediate forgetfulness after speaking about something, and a glazed look when we spoke to him. We raised further concerns with the team, suggested he go home to be checked out but no further action was made by them.

The day before the big incident our hockey player was taken to the hospital first thing in the morning complaining of headaches, dizziness, trouble breathing, and numbness in his legs. He wasn’t there more than a few hours, and returned back to us with the diagnosis of having a flu virus. If he had been sent for further testing, maybe the incident wouldn’t have happened at all.

After the incident, we asked for the officers to take him for an evaluation and they said they spoke to him and he was ok. Despite the fact he had just hallucinated our murders and reported them to the police. We explained what we had been experiencing and they still left him in our care. The next day we asked for further support from the hockey team leadership. We finally spoke with his parents (after repeated requests for contact information), and they were also in denial. They were unaware of anything we had been experiencing. Instead of being sent home for proper evaluation, the team convinced him he was ok to continue playing and they were looking for a new billet family to take him in. I am also sad to say, they denied knowing anything about him having a previous concussion. They were putting his health below the needs of the team. Our hockey player was making excuses for the event taking place and remained in denial about the seriousness of his current condition. With the team constantly calling and messaging him he was being heavily influenced to stay and play.

That night, I slept in my daughter’s room with her and we barricaded the door just in case. Our hockey player remained in our care for 80 hours until his parents finally arrived to bring him home. I had mixed feelings about having him stay with us. We decided we weren’t having him leave our home unless he was safe back with his parents. It was a scary time for me personally. I wasn’t sleeping properly and experiencing anxiety about it. My daughter had nightmares almost every night for 2 weeks (and was insistent on sleeping in our bed).

As a parent it is often difficult to think of our children being in an unhealthy state or unsafe situation. Especially being put in the situation by someone of authority like the hockey leadership team. There needs to be proper health and safety regulations put in place for minor sports and the management of concussions. Education is the first step, to educating those involved in sports on what symptoms to look out for and how to manage post-concussion experiences.

That mamma bear instinct is far reaching. If my story can help touch the life of even one athlete, then I can feel relief. My goal is to bring awareness to post concussion symptoms and behaviours and educate on what parents, friends, coaches, and almost strangers should be on alert for.

You’d be hard-pressed to find an organ more complex than the brain – a wrinkly lump of electrified tissue responsible for our every thought, action, and emotion. Rarely do we pay it any attention, content to let it labour away on our behalf… that is, until something goes wrong. Perhaps you slipped on an icy driveway, or maybe you took a tumble on the slopes. Regardless of how it happened, the result is likely the same: a Traumatic Brain Injury (TBI). Suddenly, your hard-working brain is struggling to keep up, and you’re left to deal with the consequences.

A TBI occurs when there is a forceful bump, blow, or jolt to the head or body, or when an object pierces the skull and enters the brain. The most common form of TBI is a mild TBI (mTBI), also known as “concussion”. The brain “floats” within the skull in a protective fluid, anchored at its base to your spinal cord. When the head moves rapidly, the brain can slam into your skull, which can cause a concussion. Some symptoms of concussion can include headache, irritability, and fatigue [1].

The McMaster Students for the Concussion Legacy Foundation spoke with Dr. Angela Carol, a physician with the Hamilton Urban Core Community Health Centre in Hamilton, Ontario. She shared with us her insights regarding the evolution of concussion management, as well as the challenges associated with treating concussions in people experiencing homelessness.

Dr. Carol advised us that the way medical professionals treat concussions has changed as they’ve learned more about them. Ten years ago, it wasn’t even mandatory for youth to wear helmets when figure skating. We also used to wake kids up who hit their head because we thought they were in danger of dying while asleep. We now know that this practice isn’t necessary; in fact, it’s probably detrimental, given that we’re disrupting the child’s sleep during a key period in recovery.

We also used to adopt a strict rest protocol to treat concussions. We would tell patients to sit in a dark room until their symptoms improved. It was believed that sheltering patients from overly stimulating environments would prevent the aggravation of their symptoms, allowing their brains to recover. Doing so would also limit their risk of incurring secondary concussions, the symptoms of which are often worse than the initial injury.

However, extensive research has shown that prolonged periods of strict rest can delay the recovery process [2]. Instead, clinicians now advise patients to adopt a stepwise approach, gradually allowing them to return to their usual activities so long as they do not aggravate their symptoms [3]. In adults, research has suggested that slow, controlled physical activity like walking or riding a stationary bike below the symptom threshold may aid recovery [4]. Today, we generally believe that after 24-48 hours, incorporating exercise can help someone recover faster [4].

Dr. Carol also informed us that concussions have long been without any objective diagnostic tests. Instead, we relied on patient symptoms alone to guide our management. In the last few years, we have implemented more objective testing, such as the Buffalo Concussion Treadmill Test (BCTT) in adults, a graded exercise protocol [5]. When the athlete completes the BCTT without exacerbating their symptoms, they can begin a return to sport. Return to sport would include introducing sport-specific activities over an extended period before the athlete can compete again. Besides the BCTT, Dr. Carol informed us that physicians have begun using neuroimaging to guide management. For example, if a child has positive neuroimaging findings, they should take at least three months off from contact sports [6].

One of the most powerful tools to combat the burden associated with TBIs is also one of the simplest – awareness and education. Knowing what TBIs are, who they affect, and how they present are simple ways to ensure that they are adequately addressed. Data demonstrates an increasing prevalence of TBIs in Canada, warranting dedicated efforts to quell what some have referred to as a “silent epidemic” [7].

McMaster Students for the Concussion Legacy Foundation (MSCLF) hopes to be a part of the solution. Leveraging our medical training and community connections, we hope to increase TBI awareness amongst the McMaster student community and the Hamilton area. If you would like to get in touch with us, please reach out via email at [email protected] – we would love to hear from you!

1. Tator, C.H., Concussions and their consequences: current diagnosis, management and prevention. CMAJ, 2013. 185(11): p. 975-9.
2. Silverberg, N.D. and T. Otamendi, Advice to Rest for More Than 2 Days After Mild Traumatic Brain Injury Is Associated With Delayed Return to Productivity: A Case-Control Study. Front Neurol, 2019. 10: p. 362.
3. Harmon, K.G., et al., American Medical Society for Sports Medicine position statement: concussion in sport. Clin J Sport Med, 2013. 23(1): p. 1-18.
4. Haider, M.N., et al., Exercise for Sport-Related Concussion and Persistent Postconcussive Symptoms. Sports Health, 2021. 13(2): p. 154-160.
5. Haider, M.N., et al., The Predictive Capacity of the Buffalo Concussion Treadmill Test After Sport-Related Concussion in Adolescents. Front Neurol, 2019. 10: p. 395.
6. Recommendations for Return to Contact Sport After Multiple Concussions. 2018 [cited 2023 March 9]; Available from: https://canchild.ca/system/tenon/assets/attachments/000/002/574/original/Return_to_Activity_Guideline_WEB_1_.pdf.
7. Buck, P.W., Mild traumatic brain injury: a silent epidemic in our practices. Health Soc Work, 2011. 36(4): p. 299-302.

Read more about Jill Wheatley and her story on her website, Mountains of My Mind

Between intolerable headaches, cravings wavered between an intense desire to transcend deep in a timewarp to life the way it used to be and yearning for life to be no more.

From autonomous athlete, teacher, and coach racing bikes in the Alps to an ambulance racing down the Autobahn. From intensive care to wheelchair. From teetering footsteps to navigating hospital wings. From one diagnosis to countless others, in a dark crevasse, endless labels quickly led to lost hope for life.

The accident took 70% of my eyesight, my appetite, my memory, and every ounce of my optimism with it. Suggesting I would not survive without intensive medical intervention, navigating a trail back to life among Bavaria’s pristine peaks that had been a playground for my skis, bikes, snowshoes and running shoes was impossible to imagine.

Too weak to walk, I struggled physically, emotionally and, a nightmare patient, was not willing to comply with doctor’s orders. Unable to lift a leg to 90 degrees, stand in the shower, or ever be unsupervised, this horrifying mountain would never lead to a worthy view. Dependent on a gastro-jejunal feeding tube, I am left with another scar; a hole in my abdomen will forever remind me of what I have survived. As I became more stable, my cognitive deficits began to be addressed and, with that, harsh reality and frustration. I could see less than half of what I used to and felt like a different person with an inept ability to think, plan, concentrate, or remember. The capable, clear thinker I once was an utter stranger. This character, full of shame in her scars, was not welcome in my story; a story that felt fictitious, a horror in fact.

The surreal story, set throughout 7 hospitals in 3 countries for more than 26 months; filled with caregivers, hundreds of hands and hearts who believed something that I did not. They are the reason I can share this story of serendipity.

No driver’s license, no apartment, no residency, work permit or inner light. The only sign I could see pointed towards mountains. I chose mountains to shelter me from society, to be alone with mother nature in search of acceptance and purpose. What I found was perspective and possibility.

From the darkest crevasse – traumatic brain injury, to the world’s highest peaks, being an adaptive adventure athlete I choose to embrace the life I nearly lost. I choose to climb challenging mountains; I choose to challenge the mountains of my mind.

While climbing all of the world’s 14 peaks that stand above 8 000 m, I aim to break down the stigma associated with traumatic brain injury, vision loss, and eating disorders. Having summited 7 of our world’s highest Himals within the last year, half way through Vision 8000, though no longer a teacher in the literal sense, my choices allow others to learn the power of perspective and possibility.

When I am asked for “motivation/helpful tips that helped you during your recovery periods”:

I prefer to steer clear of the term recovery because to recover is to return to something and I feel that, thanks to the lessons of my Traumatic Brain Injury, I have learned and grown, I am a better person, more in touch with my values than I was at the time my life took a turbulent turn.

Accepting and adapting to the ways traumatic brain injury has changed my life is the most challenging mountain I have faced. Finding lessons has been a gift of TBI which I hope others struggling with adversity can connect to:

1. Choice
   • Though I did not choose my TBI I have the opportunity to choose my response.
2. The Power of Perspective
   • Shift from what I lost to what I have gained (e.g. new perspective of what is important, connection to my values, ability to ‘see’ how I can help others)
3. Embracing Impermanence
   • Nothing stays the same forever (e.g. I was stuck and did not believe life with a ‘disability’ was worth fighting for)
   • Acceptance: Shift from ‘normal’, to shock and disbelief; not ready to feel better; now wanting to feel better)
4. Authenticity
   • Letting go of “shoulds” and who society can lead us to believe who we are supposed to be
   • Secrets keep us sick (e.g. talk about struggles, not alone)
5. Vulnerability
   • Courage to be seen creates connections: authenticity + vulnerability = connection

Values

Who I want to be, what I stand for and how I want to relate to the world. I aim to …

Health balance physical and mental health to thrive holistically.

Empathy understand and share the feelings of others.

Connection invite others in my days.

Communication listen first; share feelings openly.

Authenticity be true to myself.

Vulnerability speak my truth to help myself and others.

Humour see and appreciate the humorous side of life.

Mission

My mission is to release the shackles of stigma that traumatic brain injury, vision loss, eating disorders and posttraumatic stress disorder hold. Through mountain experiences, I develop acceptance and shine light on the power of perspective and possibility.

Vision

From surviving to thriving, I aim to

• be completely present in the moment.
• explore curiously in mountains and within myself.
• shine light on the power of perspective.
• move beyond barriers, adventuring in mountains.
• use my vulnerability to connect and encourage.