A Follow-Up Story: 8 Years Post Concussion

How long has it been since your last concussion?

My last concussion was June 4th 2010. This was my 6th concussion, which occurred while waterskiing and had a major impact on my life. Although it has been 8 years since my accident, I can close my eyes and it feels like just yesterday that everything fell apart.

How has that concussion and recovery affected your life?

To say that this concussion had an impact on my life is an understatement! Being a high level athlete with intentions of completing my University athletic career and dreams of going to the Olympics, I never thought my journey would be cut short in such a devastating way. Everyone knows the typical symptoms experienced such as the sensitivity to light and sound, the headaches, fatigue, dizziness and inability to concentrate but they never prepare you for the unspoken ones: the anger, frustration, emptiness, anxiety, depression and the feeling that no one understands what you are going through. I spent the last 8 years of my life as a completely different person than I was before my last concussion and I know the next 60 years of it will be affected as well. The thing is recovery is different for everyone; there is no cookie cutter protocol to follow and while you’re going through recovery you are not wearing a cast on your head like if you were to break an arm. For me personally, learning to not push through my symptoms has been and continues to be the hardest adaptation to manage. Athletes are trained to push and fight through no matter what because that is how you get better and ultimately achieve your goals. However, this is not the case with your health. Ignoring the symptoms without intervention does not lead to better health outcomes. I also never wanted people to judge me or see me as weak so I would just keep going through my day until I would collapse onto the floor in a ball, crying, nauseated and unable to open my eyes because I was in so much pain and agony. These episodes of collapsing onto the floor were almost daily occurrences for the first 4 years after my accident. I finally hit a breaking point and couldn’t continue to repeat that pattern so I decided to be open to all types of treatment. Through this recovery I have done every treatment under the sun. I have done the typical therapies but also added chiropractic, gyro-stim therapy, functional neurology, supplements and countless more. All of these therapies take a time commitment and I had to learn to fit these into the normal life I was trying to maintain. Juggling all these meant making sacrifices that I am still dealing with to this day: fewer friendships, missing family events, ending competitive sports and training of any kind, relearning how to manage school and truly missing out on my 20’s. Every day is different but over time you learn your new “normal”; you surround yourself with your “team”, and this is how I have managed to still complete an Undergraduate degree and then a Doctorate degree.

What kind of influence did educating yourself and learning from experts like Dr. Cantu and Dr. Stern have on your life?

Educating yourself is vital to your recovery! When mine happened, concussions and post-concussion syndrome were relatively new which meant that my mother and I had to be the “quarterbacks” of my recovery. We would spend hours researching therapies that could possibly help and finding providers in our area to give each one a shot. As I stated earlier, I have tried pretty much every therapy there is and through this I was able to construct my recovery team. Ultimately this led to me sharing my story and experiences on stage at conferences which allowed me to cross paths with Dr. Stern, Dr. Cantu and the Concussion Legacy Foundation. Learning from experts in the field will allow you to construct your team much faster and more efficiently than when I went through it. The quote of “stand on the shoulders of giants” rings true with these two amazing doctors as they have the experience and expertise in this ever changing field. The Concussion Legacy Foundation allows us all to connect, share our experiences and be reminded that we are not alone in this journey. Do not hesitate to reach out to any of us that have shared out stories on here. We are here for you and truly want to help you in any way we can.

What has the transition from student to working life been like?

The transition from student to working life has been rough. When I was not feeling well during school I could make the choice to stay home to rest/recover and catch up on that class at a different time. Now I have my own practice and patients that are depending on me being there and I always have to show up even if I feel ill that day. Being a chiropractor, I have to put a lot of energy into my patients and have had to learn ways to refill my proverbial bucket to be able to serve all of my patients even when I feel empty. Learning this new balancing act has been quite difficult, with a few flare ups of symptoms but every day is a new journey and over time I will figure out this new normal as well.

Knowing what you know now, how might you have changed your approach to concussion recovery?

Looking back after all these years there are a few things I would do differently if I had to go through it again. I never took an extended break from school to heal my brain, partially because I was never forced to by my doctors and partially because I had too much pride to “slow down and be behind my friends.” I feel this would have benefited me greatly in order to rest my brain. Surrounding yourself with supportive and understanding family and friends is vital to your mental health during recovery. Having to stop all the activities I loved and that defined me was extremely depressing. Having a circle of support during these dark moments kept me moving forward when all I wanted to do was close my eyes and never wake up. Lastly, having someone you trust to be your advocate at all of your appointments is pivotal. When concussed we tend not to think clearly. Our emotions are all over the place throughout recovery and we tend to make rash decisions that are not always in our best interest.

What is your advice/words of wisdom to others who have experienced a concussion?

My words of wisdom for anyone who experiences a concussion is to believe yourself and listen to what your body is telling you. Everyone’s experience with this invisible injury is different; you have to be strong enough to know that the symptoms you are experiencing are real and brave enough to go through the proper recovery to regain your health. Reach out to the resources around you, take the time you need and let go of the people in your life that don’t support you. Your life will always be impacted by your injury but you will learn a new normal and it is all going to be okay! Athletics and competition were always a part of my life before my concussion, so I have still found a way to keep them in my life even now. After a lot of trial and error with sports and activities like rock climbing, kick boxing, running, biking, volleyball, golf… the list goes on… I was unable to find an activity that I could perform symptom-free. That is, until I recently took up curling as a fun hobby that allows me to still be competitive yet has minimal risk of head contact and doesn’t exacerbate any of my symptoms!

As a practicing chiropractor, do you now have patients who have experienced concussions? What has that been like, going from patient to teacher?

Having chosen the holistic/chiropractic route versus the medical route was one of the best decisions I have made. As a practicing Chiropractor with my concussion history, my patients with similar issues definitely hold a special place in my heart. Going from patient to teacher has been an easier transition than expected. I believe that is because I have been given the opportunity to share my story and when I have a patient on my table, it is just another way to support this community. I have recently been in their shoes, I know their struggles and I am able to share what helped me which will hopefully help them as well!

My goal is to one day own a clinic that specializes in post-concussion recovery with all therapies in one place to make recovery seamless for anyone who experiences a concussion. This facility would be founded on co-management and would remove the inter-professional communication issues many patients have dealt with.

Don’t Let Your Struggle Take What’s Right in Front of You

Hi everyone! For those who followed my “Run Sully Run” journey, I’m Sully! I wanted to update you all on what came from my year long journey battling Post Concussion Syndrome and what I learned from it. But first, a quick recap on the year that was!

In June of 2017 I decided I was uncomfortable with how I was feeling physically and mentally. After 14 concussions from hockey and a car accident, I was mentally drained and damaged. Suffering from depression, anxiety, and panic attacks, I had let myself get to my weakest point. Physically I was sitting at 280lbs, which was the heaviest I had ever been. I wanted to make a change.

I decided to train for the Scotiabank half marathon during Ottawa Race Weekend and raise money for the Concussion Legacy Foundation Canada. This journey was a long and painful one, but what I was able to find out about my body and mind was remarkable. How you are able to take control of yourself mentally with physical activity or positive mindset is incredible. I went from 280 lbs, depressed and exhausted to 220lbs, energetic and positive. The year was a success in my books for sure.

But what I have come to find out over the past 7 months since running the race is that battling PCS is a never ending journey and fight. One race did not cure me of my PCS, but I was able to learn I am in more control of it than I originally thought. While there were plenty of positives over the course of the year, there were some negatives as well. But for your sake I’ll reflect on the negatives first so we can end with some happy thoughts!

Coming out about my struggles made me vulnerable. It was the most public I had been regarding my mental health. I am sure if people saw me they knew I wasn’t well, but before I actually came out about the mental health battles and concussion history not many people knew what I had been going through. My name started to become associated with concussions. Lots of negative comments were made and people looked at me differently, almost as if I was broken or fragile. I had a rival coach in my league look me in the eyes and tell me “I’m going to give you another concussion”. I had never wanted to go public with my battle because I was tired of attention. I had people rudely judge my memory or think twice when I was to share facts as if to doubt I would actually remember. I had articles written about me that made everything I was going through public, but then I became the guy with the concussions, not the hockey coach with two dogs!

However, the positives are what made me power through. I saw physical changes in my body that made me gain my confidence back. I was able to use the running as a way to de-stress from the daily grind of the hockey season. Mentally I was able to control the depression, while finding ways to tackle the anxiety. Panic attacks are a distant memory which I hope never return. Once the half marathon hurdle was complete, I had gained so much confidence in the way I can control this situation that I decided to tackle another obstacle, return to University.

All in all the run not only saved my life, but it made me realize quite a bit as well. The world needs to catch up with the effects of concussions and break down the stigma. I dealt with a lot of wrath, a lot of scrutiny, and at times had to be dealt with delicately due to the fragile subject. It was not an easy thing for me to share, but I put myself to the way side and wanted to think of others. I have received so many messages from people I don’t even know thanking me for coming out about my struggles, stating they feel the same way, but feel alone. That was my biggest fear – the feeling of knowing no one understands what’s going on in my head. The biggest challenge is feeling like I have to always justify why sometimes I cannot be social, sometimes I need to rest. My support system is my backbone. My girlfriend Kayla is my rock, and I could not imagine being in her shoes some days. My support at work with my hockey group makes it easy for me to get out of bed and my girlfriend and dogs make it a joy to come home after work as well.

 

As to how I am doing now? – I’m doing just fine! I don’t run much anymore, as that half marathon completely wiped me. Instead I’ve turned my fitness to more weight lifting and just eating healthier. I am also pleased to say I am fully registered at the University of Ottawa in pursuit of a Bachelor of Social Sciences degree. I know this will be the true test to see what my brain can truly handle and I’m looking forward to tackling this next challenge!

All in all, my main message is to take control. Don’t let your struggle take what’s right in front of you. You are all capable of a great life, but a different life. Accept the hand that has been dealt for you, lift up your head and tackle each day with your greatest effort. Trust your support system, let them in on your struggles. Remember that your life is in your hands, make the most of it!

From my two beautiful dogs, Harvey and Ella, and of course myself, I thank you for following my Run Sully Run journey.

“I’m Fine”

September 2017 was going to be the start of an amazing journey. I started a new program and could not contain my excitement to work towards my PhD in Rehabilitation Sciences and a Master of Physical Therapy degree over the next 5 years at Western. Being heavily involved in sport since I was a kid, I knew that I had finally found my calling – to influence the field through both research and clinical practice.

I was off to a great start – I had just recovered from what felt like a never-ending injury streak. I had developed a great routine of proper exercise, nutrition and sleep to fuel my body and brain, and I was finally able to return to playing sports, which I have considered my number one stress reliever since I was a kid. I felt unstoppable.

I had joined a few intramural teams – a serious broken bone ended my competitive sports career back in high school, but that had never stopped me from getting out on the ice, the field or the court to escape reality for even just an hour. I was playing intramural flag football, and was on defense. With full force, I collided with my own teammate as we followed our opponents in coverage. We went knee on knee and my head (I think) hit his shoulder, then I hit the ground hard. My initial thoughts were “Oh God not another injury” as I laid on the ground. My teammates came over, and my one teammate and lab mate (who specializes in concussion research) asked me if I hit my head. My knee jerk reaction was to say no, because there was no way I could have gotten a concussion from an intramural sport, let alone from colliding with my own teammate. I walked myself off the field, but as I sat on the sideline, I realized that both my knee and my head were not getting any better.

My friend drove me to the hospital to get my knee checked out. I remember sitting in the car, both my knee and head throbbing, and I was experiencing extreme dizziness and nausea. When we got to the hospital and up to the triage desk, they asked me what I was getting checked out. I told them about my collision, and I said my knee, but I also told them my head hurt too. They told me “sorry, we can only focus on one issue at a time” so I stuck with my knee. The X-ray came back clean, so they gave me some crutches and sent me home. All I wanted to do was sleep, but I was up all night in pain… looking back now the signs were obvious.

I am lucky that my lab works closely with the Fowler Kennedy Sports Medicine Clinic, one of the best in the world, so the next day I went to the acute care clinic. I was able to get a definitive diagnosis for my knee (which put me on crutches for a few weeks and ended my intramural season), and I booked a physio appointment for the following week. I still didn’t speak up about my head, because I figured I was just exhausted from the lack of sleep I got the night before, and chalked up my headache, fogginess and lack of ability to focus to the fatigue.

The next day I sat down to try and study for an upcoming exam, and I just couldn’t do it. I felt so disoriented and confused, and I was in such a haze. Again, in full denial, I tried to push through. After another awful night’s sleep, I finally gave in to what I had known the second I collided with my teammate; I had a concussion. I felt embarrassed and in disbelief – how did I not sustain a concussion from years of rugby tackles and pucks to the head in hockey, but now received one from a single silly collision? I reached out to someone I trusted, who also is well-researched in the area, and I was told I had no choice but to go seek help, despite me continuously saying “I’m fine”. The following week when I went in for my physio appointment for my knee, I opened up about my head. I immediately saw one of the sport medicine doctors, who ran me through all of the traditional tests (which coming from a lab that partially specialized in concussion research and from clinical volunteering, I was no stranger to). Even though I knew my SCAT score was high, and I knew that all the symptoms were pointing towards it, hearing the doctor say “you have a concussion Jenna” was devastating. I had my first big conference coming up in just over a week, and I was flying out to Winnipeg for it. Against everyone’s recommendations, I decided to still attend and insisted “I’m fine” but ended up spending most of the conference inside my hotel room.

The months following were challenging – I was hoping to be back to business two weeks post-concussion. I didn’t tell my parents because I didn’t want to “worry them”, and I thought it was not something that was going to last long. But as each week passed, I was barely seeing progress. I had to push all of my exams back, could barely last a couple hours in my lab without flare-ups, I was off work and I couldn’t exercise because of both my knee and how symptom-stimulating the gym environment was. But this entire time, I pushed through. I was lying to myself and to everyone else by saying “I’m fine”, desperately trying to return to normal. It wasn’t until Christmas break that I finally started to feel more like my normal self. My knee had healed enough for me to start exercising again, I was able to work, and I was starting to get back into my routine.

At the start of 2018, I was determined. Despite still feeling in a slight fog, I continued to go on like it was nothing. I was gearing up to start a new project and my Comprehensive Exams, so I didn’t want anything to get in my way. I got the clearance to finally play sports again (albeit non-contact), so once again I signed up for intramurals. Three weeks into January, I was playing goalie during intramural handball. Someone on the other team ran into me, side swiping me in the head with their arm. I was in instant pain but brushed it off. The headache didn’t go away, so I popped an Advil and proceeded to play basketball. That was one of the silliest decisions I could have made, especially with my history and knowledge in the field, and I am lucky that I didn’t get another blow to the head. After a few days of trying to ignore it, and many “I’m fine’s” later, I once again turned to my trusted sources. I was told to go get it checked out, so I went back to the doctor and…another SCAT, another concussion.

This one was particularly difficult – and a prime example of how each concussion is different. The first concussion I had struggled with the physical aspect; the fogginess, haziness and difficulty concentrating. But this one took an emotional toll on me. Physically I healed much faster with this one, within about a month the headaches subsided. But the emotional side effects lasted much longer. I had put myself under immense stress and pressure to complete this project as well as pass my comps, but the concussion exacerbated my mental state. I had heightened anxiety, moments of depression, large amounts of self-doubt, mood swings, and even a few panic attacks. I was frustrated, because I felt physically normal, but emotionally I was drained. However, I suppressed these feelings and continued on insisting that “I’m fine”. I finally came to the realization that I wasn’t fine, and that that was okay.

I am beyond lucky to be surrounded by health care professionals, colleagues, family and friends who have been nothing but supportive of me. I am eternally grateful for those who advocated for me when I wouldn’t; who spoke up for me when I was silent; who pushed me to seek help when I was being stubborn; who reminded me how important my brain is when I tried to brush it off; and who had my best interest in mind when I didn’t. Without them, I would not be where I am today. I passed my comps, finished that project, and I’m now working on some new, exciting research towards my PhD. I am eager to start Physiotherapy school in about a year and a half, and to apply my experiences to clinical practice. I have re-established a slightly modified daily routine, adding more time to take breaks and more time for myself. But most importantly, I am healthy; both physically and mentally. In a weird way, my concussions taught me a lot. I’ve learned that I need to listen to my body, and especially my brain because you only get one. I’ve learned new coping strategies to deal with stress and anxiety. I’ve learned that it’s okay to not be okay, and that it’s okay to ask for and lean on others for help and support. And I’ve learned that sometimes being the hero means admitting when you’re hurting, both physically and mentally, not trying to push through by saying “I’m fine”.

As a future clinician, my experiences have been invaluable. My hopes and goals are to impact and improve the lives of many patients, much like mine has been changed for the better. As much as I struggled over the past year, I also came out on top. Not every day is perfect, and there are many days where I still struggle, but looking back I am proud at the progress I’ve made. No, this was not how I had pictured my journey to start, but I am excited to see what the future has in store for me, and I am ready to face every challenge.

A Voice for Others

Xavier Fulton is an Offensive Tackle who has played in both the NFL and CFL. In 2016, Xavier came forward to speak about his anxiety and depression that he faces on a daily basis. Since then, he has been an outspoken advocate for mental health, especially amongst his fellow football players. Below is an interview where Xavier talks about his career and how mental health and head impacts are intertwined.

Can you give a background of your football career?

I was offered a scholarship to the University of Illinois in 2004. I was originally recruited as a defensive tackle but I weighed 240 pounds and was 6’5” so coaches told me I was going to play defensive end. I played two seasons at defensive end until I had a knee injury and took a medical red shirt year. The following two seasons I played offensive line at left tackle. I was drafted as a left tackle by the Tampa Bay Buccaneers in the 5th round in 2009 but had another knee injury so that stymied my rookie year in the NFL. When I came back, I wasn’t quite able to perform yet so they released me and I was picked up by the Indianapolis Colts. That pattern continued – I was with the team for a bit, then was released and went to the San Francisco 49ers, then the Washington Redskins. After that, I took a bit of time off from football and started boxing. I fought my way to the Super Heavyweight Senior Novice Golden Gloves Championship in Chicago in 2012. During the time that I was training, I was signed by the Edmonton Eskimos of the CFL, only to be traded about six weeks later before I had even set foot in Edmonton to the Saskatchewan Roughriders. Less than a week after my championship fight in the Golden Gloves I was up in Saskatchewan for training camp. I was with the Riders for five years and was a part of the 2013 Grey Cup winning team (the big highlight of my career) until they traded me to the Hamilton Tiger-Cats in 2016. I was there until I was released midway through the season in 2017. I then signed with the Montreal Alouettes until I was released in July of 2018.

 

During your football career, did you ever receive a concussion? Can you recall what it happened?

The very first concussion I was diagnosed with was in training camp of my freshman year at Illinois. I was playing defensive end and our mentality was always “see ball, go get ball” on defense. The tackle went on a down block so I followed off his hip down the line and had major tunnel vision with the blinders on. I didn’t even see the fullback coming as he hit me right in the earhole. I remember going down but after that it isn’t very clear. I only know what happens next because I watched it on film afterwards – I got up and kept running for the ball after stumbling. The next clear memory I have is being on the sideline and the trainer asking me math questions.

I was held out of practice for a few days, limited to light exercise, but in total I only missed three days (four practices). At that time, there was no ImPact testing protocol or anything, it was simply the trainer telling me I “had my bell rung and we are going to hold you out for a bit.” There was nothing else done after that in terms of a protocol.

Since then, I can recall games where I remember being hit in such a way that there was a flash of light or my vision blurred. There are games where I do not remember playing at all. In particular, I was playing against Winnipeg in Saskatchewan for the Labour Day Classic, and it was the first drive of the game. Again, I only have a clear recollection now because I was able to see it on film afterwards. I was already on the ground, trying to get up when a linebacker who was running behind me dropped his shoulder right into the back of my head. This guy was fast and known as a hitter in the league and it was completely unnecessary since I was in a defenseless position. I remember the impact – my body lurched forward and I smacked my helmet on the turf in front of me and then the next thing I know I am in the locker room, sitting in my locker, and the game is over. I played the rest of the game because I did not give any clear signs that there was something going on and I never said anything to anyone about the way I was feeling. When you look at the symptoms of a concussion – headache, don’t feel right, nausea, vomiting, delayed response, fatigue, things like that – in that group of alpha males, you attribute those symptoms to “Oh well I had a tough practice; I’m just tired; I need to toughen up, etc.” A lot of those times I wrote it off as I’m being soft, I need to be tougher; it’s just part of the game.

How was it handled by the medical staff? By your teammates?

My autopilot was good enough that no one really said anything – if someone said something to me, I don’t remember. I don’t have a clear memory of that happening. I know there were times when I would see it happen to other guys and I would check in on them. They would say “no I’m fine, just give me a moment and I’ll be alright.” And that was really the extent of it. There was maybe a handful of times where I actually did go and get a trainer or the team doctor for my teammates, but not for myself.

I never wanted to NOT be on the field – I didn’t want to stop playing. I was a guy that if my shoulder comes out of place, if you hit it right the next time it will pop back in. I was like Riggs from Lethal Weapon. Hit it on something, it’ll go back in and I’ll be fine. I was that guy. If I lost the use of an arm, I would find a way to get it working again and not say anything.

The medical staff had to look after 45 other guys and sometimes coaches have things going on too that require the attention of trainers. There are only so many sets of eyes out there that are actively looking, making sure that each player is in the right frame of mind and quality of health to be playing. In the heat of the moment there are a lot of things that slip through the cracks.

 

When did you first start noticing changes in your mood?

As the years went on and the games got harder and harder, I had to push myself harder and harder. Almost taking more risk, so to speak. As you get older, the impact you can make with your hands is sometimes not enough to get your point across to the defender. So, the head starts coming in more – leading with the crown of the head; I noticed I was having to do that more and more as the years went on. I especially started noticing it after the games. I would be in this perpetual state of absentmindedness. It was taking things longer to register, and was harder to maintain focus. It was harder to keep my mood in check. I was having mood swings left and right. It was my wife who pointed it out to me: “Babe, the game is over, you can calm down now and relax.” I would start to but then one thing would set me off and I would be back in a tantrum.

This was becoming more and more frequent as the years went on. I had to seek the help of psychologists and psychiatrists who diagnosed me with depression. After having conversations with these specialists and not understanding what depression, I could see how repeated head trauma was exacerbating all my symptoms. It doesn’t take a huge leap to tie the two together.

 

How did it affect your career?

It changed things up. We are all getting older every day. The lifespan of football is always finite. In order to stay longer, you evolve in certain things. For lack of a better term, you become a ‘wily old vet’ or, in some guy’s cases, a dirty old vet. Leading with the head more, not using the shoulders as much, not using my hands as much. Doing whatever I could to make my presence felt on the younger, stronger, faster defenders that are out there. It made me take a step back and think “Do I really need to keep doing this? There has got to be something else that is out there.” Especially my last two seasons, I was really thinking that more and more. I can’t do it the way I used to do it and I am just trying to find something that works to slow these guys down because I couldn’t keep up like I used to. That’s the way I looked at it on the field.

Off the field, it was becoming harder to maintain a positive outlook on everything. To not blow up on the younger guys doing outstanding things, to keep my mood in check. That was the biggest thing, I was constantly swinging up and down. For a number of years, I was on medication that stabilized my mood. It helped tremendously because looking back it could have been one hundred times worse than it was. Without the medication I was on, there was no telling what one bad day could have done when dealing with teammates, coaches, and most importantly, family.

What would you have changed about how your situation was handled by your team?

When I went public about dealing with anxiety and depression there an overwhelming amount of support. Before I decided to make that public knowledge, there were some people in my corner that were worried that going public would mark me as someone that was blacklisted and not worth having on a team. But, I decided to do it anyway because there has to be a voice out there for those guys that are going through the same thing. There are way more guys that are dealing with the same kind of things that I am than people ever imagined. When I did it, there were people coming out of the woodworks – complete strangers – saying “thank you for finally saying something. I felt the same exact way.” I had teammates from various teams who said they were going through the same thing. It seems like every day we are out here banging heads, doing this and its making it worse and worse and worse.

I was honestly surprised because mental health is such a touchy subject and concussions and head trauma are something that are best kept separate from the rest of the group. One of the things they do as part of the concussion protocol is they keep the guys completely separate. Unlike other injuries where you only need to do rehab; you are still expected to go into meetings, to participate in everything which you can with the exception of what you are physically limited by. There are some guys I remember who were diagnosed with such severe concussions that they didn’t come in at all. There were a couple guys who got concussions early on in the season who I didn’t see for the rest of the year even though they were still a part of the team. They just kept them completely separate – not a part of the group at all. When guys did come in, they were wearing dark sunglasses, kept in quiet rooms, no meetings, no working out, can’t be out on the field, and for some guys it was so bad, they couldn’t leave their rooms as they got so nauseous moving around. They would vomit uncontrollably from walking. They become almost like outcasts. You see their lockers and all their stuff is still there, but they might as well be ghosts. You know they are around but you never see them.

 

How are you now taking your experience and making a difference?

Doing things like this. Talking about it. I made that decision years ago that I can’t be quiet anymore. And that’s the best way – bringing light to these kind of things, talking about it. Be that voice for someone else that hasn’t worked up the courage to do it themselves yet. As a buddy of mine from college would say, “If you have something worth saying, being quiet is only going to do yourself and others a disservice. It just isn’t fair to anyone, especially oneself.”

It definitely gets easier the more I talk about it. When you’re talking about it, you’re thinking about it, you’re putting those words/thoughts out in the world and it’s almost like another form of therapy. The way I look at it is, I can’t be quiet about it. Nothing good comes out of being silent about these kinds of things. It becomes a little easier every time and it makes you more aware about how you’re feeling; specifically, how I am feeling, where my thoughts are going, and the course of action I want to take to manage and stay on top of these symptoms and emotions. Keeping all of it inside makes it exponentially worse. We are all our best advocate but also our worst enemy at times.

It definitely helps talking about it, but specifically to have SOMEONE. Someone in your corner, someone in your family, an old coach, even the postman as he comes by. Someone to talk to. Someone you can confide in and be vulnerable with and know that person is going to support you and have your best interests in mind. To further solidify to younger guys or anyone else who is going through something similar that you don’t have to do this stuff alone. There are support networks. Even if you don’t have a support network, group, or organization to go to, there is someone in everyone’s life that just wants, unselfishly, the best for you. And no one should have to deal with this kind of thing alone.

 

What advice would you give to young athletes?

The advice I would give to other athletes is know when the juice isn’t worth the squeeze anymore. Know when it’s not worth putting your body through the trauma anymore. The scariest thing for athletes is “what comes after?” Most of us have been playing sports are entire lives, our entire being is wrapped up in being an athlete. For me, I was afraid to see what else there was because I didn’t know anything other than football; other than being an athlete, punishing my body in service of the team and the greater good, in that respect. I did not have the courage to look myself in the mirror and say “you can’t do this the right way anymore. You can’t do this without intentionally leading with your head over and over and over again.” I didn’t want to accept that maybe it’s time to step back, reassess the situation, and find a way to move forward in something else that is less dangerous. It was really hard to look at it that way as a young player; since I was eight years old all I have known was play football, play football, play football. Season is over? We workout, we workout, we workout. And then it is time to play football again. Getting out of that cycle of “I’m only good to the world if I am in a helmet and shoulder pads” has been a trying situation.

It has been an adjustment period, a transition. I have always had that Spartan mentality that to go out on your shield is the ultimate way, the highest honour or glory you can have. I have been down on that field enough times where I am laying down and I can’t get up and someone has to help me or carry me off or I have to be carted off – there is no glory in that. The honest reality is that the sport was there long before me and it’s going to be there long after me. Yes, there will be a time when people remember me but after a while, it’s the next man up, the sport moves on, the organization moves on. They give you your last cheque, pat you on the back, thank you for your service, wish you good luck in the future and that’s it. No matter how long you play, or how short of a term you have playing professional football, everyone goes out that exact same way. “Thanks for everything you did for the team, good luck in the future.” It was a really hard concept for me to grasp. I wish it sank in sooner that that’s the way it was going to be. You hear it as a young player but you don’t want to believe it, don’t want to accept that that is the reality.

Supporting a Loved One

Ashley Fulton is a Co-Founder of Women of the CFL and wife of Xavier Fulton, an Offensive Tackle who has played in both the NFL and CFL. We previously interviewed Xavier about his football career and how mental health and head impacts are intertwined. Now you can read about Ashley’s perspective – the supportive loved one and how concussions and mental health affect not just the injured, but those around them too.

What’s it like being married to a professional athlete?

Let me start off by saying how blessed I am to have Xavier as my husband and best friend. I cannot express into words how proud I am of how courageous he is for taking a stand and using his voice as a tool to help others. Going through this together has made us who we are today and it has sealed an unbreakable bond between us. Xavier is my better half and my world is brighter because I have him in my corner.

When I read this question, I struggled on how to answer it. Though athletes are cheered, worshipped and admired for their skills on the field, they’re all just human beings at the end of the day. But when I sat back and thought, ‘what does it take to be a professional athlete?’ I thought about all the time, hard work and dedication, all the blood sweat and tears I’ve witnessed my husband put into a career. It is not your ordinary life.

It differs from a traditional career in the sense that athletes have to combine a mental and physical state of perfection to stand out. Athletes’ days off are often spent at the stadium or in the gym, putting in extra work, watching film, and studying plays. Playing football is a huge part of what most of them live, breathe and eat, and usually from a young age. In Xavier’s case, since he was eight years old. That kind of dedication becomes a huge part of their identity. You learn very quickly that football is the number one priority outside the marriage and family itself.

For instance, training camp is a couple weeks where your husband will be restricted to work for the team at an isolated location. It is the most difficult and dreadful time in any football player’s career. During these intense few weeks he has to master a new playbook and get in CFL shape, while you are at home with very little to no daily communication. You will get the odd 20-minute call from your overly mentally and physically drained husband. During training camp, I tried not to worry. I always knew Xavier was extremely talented and was always signed to be a starter but training camp will have you thinking about his daily performances and the intense demands he was required to endure. I found myself checking all the latest articles written about how he is or isn’t performing, and reading sports forums which were filled with opinions from fans – both positive and negative. Veteran or not, training camp is where your spot is earned. As an athlete’s wife, you’re used to being his biggest support and his biggest motivator and training camp is especially difficult to handle for both parties.

During the football season, events like date nights, personal and family celebrations, nights out with friends, and family BBQ’s become rare. This career path is intensive, it requires demands both on and off the field. A lot of time is dedicated to ensuring they are in shape, focused and prepared. For example, most women marrying an athlete plan their weddings in the offseason. Sounds like common sense? Well I was determined to have a wedding in the summer. We wanted to celebrate our anniversary during the warm months. We chose July 2nd, it was pre-scheduled with the coach as it was to be an off day. As any significant other knows if you lose a game those days off can quickly turn to lengthy practices – and that is exactly what happened to us on our wedding day. They lost the home opener the day before and coach didn’t care what was going on in their personal lives. He called them in, and they had to practice. Two hours after our scheduled wedding time, Xavier and the majority of our guests (the rest of the offensive line) were finally able to make it, and we said our vows. Being married to a professional athlete requires a lot of sacrifice.

Most wives of professional athletes don’t have traditional careers. Being traded to other teams is always in the back of your mind. It is hard to maintain a full-time career, because you may have to uproot with little or no notice. I remember applying to jobs in Saskatchewan during the offseason after Xavier had been traded to Hamilton. I sat in the interview room and was kindly declined from a job I was more than qualified for on the sole reason they knew I wouldn’t be able to commit. Some women would have chosen to stay and do long distance to pursue their career but in our case, Xavier needed me. We needed each other. He was just learning to cope with his depression and anxiety, and I was his support. I knew what I was signing up for when I married him and that is something I will always value. Football careers are short lived. They are just a part of your life before you make that transition into the “real” world where you are then starting your lifelong career. This was a sacrifice I made as I chose to support him though his dream.

I have always been passionate about giving back to the community. With Xavier’s career choice, it’s provided us with a platform to do so. We sat down and talked about his mental health struggle and that by standing up and being a voice to those who haven’t yet been able to come forward, we could make a difference. We chose to be a team and start a journey towards helping others.

I have had to learn to help support, to listen and not be the first to speak and to know how to bring him back to the light when he is feeling dark. I had to learn to know just from the way he walked back to the huddle what mind frame he was in. When you are married to a professional athlete who suffers from depression and anxiety, knowing their frame of mind after a game is crucial. I knew from the way his hands were on the opponent, the way he sat on the bench when defence was on the field or the way he ran down field on a play what mood he was in and how I would need to talk to him after a game.

Being married to an athlete isn’t always a walk in the park but what marriage is? I take great pride in being his biggest support and letting him know that no matter the obstacle big or small we are in it together and he is never alone.

 

When did Xavier get his first concussion that you remember seeing/noticing? What do you remember about his experience?

Xavier would never tell me when he got a concussion right away. He knew I would have encouraged him to speak to the team doctor/trainer and take proper steps. As an athlete it is ingrained in your head to be tough, to suck it up and play no matter what. As Xavier stated in his interview, “I never wanted to NOT be on the field – I didn’t want to stop playing. I was a guy that if my shoulder comes out of place, if you hit it right the next time it will pop back in…I was that guy. If I lost the use of an arm, I would find a way to get it working again and not say anything.”

One thing I can say, being married to an athlete you will learn a lot about dedication; the definition of when you fall down, dust yourself off get back up and try harder. You will learn that when faced with adversity to come out stronger and swinging harder. You will witness them continuing to play with a sprained ankle, a broken toe, or in Xavier’s case, no toenails every season. You will see them work through pain and soldier through anything that comes their way. You will learn how to be that support for someone when they’ve had a bad loss, when they have had their bell rung a little too hard or had someone step up in their position. These occurrences can bring the strongest person to some of their weakest points.

I remember days after games when Xavier could barely make it down the stairs, he would have to walk down sideways just to get down three stairs. He would take a day or in some cases a half a day to rest and he would be back in the gym. These were the signs I could physically see where the game left its mark. It wasn’t long after we met that his mental health took a downward spiral. I remember speaking to girlfriends who told me “He’s not acting right, you need to get away.” I stood there looking at the man I loved, the man who had the biggest heart of anyone I knew, the man who made me laugh and one of the only people who truly believed I was able to do more. I couldn’t just give up. I knew that the way he was acting wasn’t him, that there had to be more.

I started researching mental health and learning about mental health with athletes, especially how symptoms can be exacerbated when an athlete is concussed. It was scary to read stories of previous players who had suffered concussions and struggled with their mental health. I read about players in their fifties who had symptoms of CTE and it was terrifying to see those symptoms in my partner. It was even scary to try and have “the talk.” I had watched him push through so much physical pain and shut me out from so much mental pain I didn’t know how to talk to him. There were days he wouldn’t leave the bedroom, the blinds would be down, the lights would be out, the TV would be off and all he would do is sleep. He wouldn’t eat, he wouldn’t get up and shower and he would barely say two words to me. My heart was broken. I tried reaching out to people from his past, but they just said, “oh that’s just X.” It was as if he had played this role so well of being “lazy,” of being an introvert, that he masked his depression from the people he loved. It was easier for him to let them think he was lazy rather than let them in on his deep struggle he was fighting on the inside. I knew it was something more. All the signs were there. How was I the only one seeing this? But, it’s true when they say you can’t help someone that doesn’t want to help themselves. I would lay in bed with him and just hug him as he squeezed my hand because he didn’t know how to use his words. We would lay in silence. I knew I had to do more. He was self-medicating and I was worried he was going to hurt himself. It was a terrifying experience to watch someone you love be so close to being gone from this world. I never knew what I was going to come home to. I worried I would come home to a lifeless body and my husband on the ground.

I can’t put into words the emptiness I saw when I looked at him. He would snap for no reason. We would be sitting there one moment having a good time and the next he was someone I didn’t recognize. He became agitated by the smallest thing. From a food order being wrong to me putting something of his in the wrong spot. He would go into a dark place for hours, sometimes days. He would lock himself alone in rooms because he couldn’t control the things he would say. It was like I was looking at my then boyfriend but he wasn’t there. It was someone else in his body. He was emotionless. There were times he couldn’t remember things we had talked about or things we had done. He had difficulty executing plans. It was like he had the map in his head but he would get stuck in the middle. He went through stages where he had no interest in anything, he lost enthusiasm in things we used to enjoy. We would make plans and I would be dressed, ready to go and I would walk into the room to see if he was ready and he would be laying in the dark room telling me to leave him alone. It was painful. There were many times I felt powerless. I didn’t know how to help. I sat there watching the man I love become an empty body. He was emotionless and hopeless. I know he tried at times but it was like he was defeated. That no matter what he did, his depression took over.

 

What are the tolls on the family of someone suffering from a concussion?

Mental Illness can affect all areas. And when it comes to concussions, existing mental health symptoms are exacerbated by a concussion. It’s a hard concept for some people to accept and it’s a hard concept to try and explain to others. There were times I wanted to reach out to Xavier’s old friends and family members but with the rock bottom he was at I didn’t know how to approach the subject. I had tried for years to help, trying to express my concern, buying books for him to read, talking about our dreams and goals and making a map for us to get there. I always let him know my concern and that I would be by his side when he was ready. We had a lot of good times we talked about where we wanted to be in life but then days happened where he lost all encouragement and drive to do them. Some people I reached out to didn’t understand what he was going through. Xavier was shutting out the world and wouldn’t take calls or invitations to spend time together.

Then he hit rock bottom. It was hard for him to get himself out of bed every day. During the off-season when he was to be working a regular job it never lasted long. It always started out great. He was excited to be working but very quickly he would fall back into depression. He would turn his phone off, doing anything he could to only damage himself more. No matter what I said or did he couldn’t get out of that dark place. It was hard. I was working full time, going to university and trying to keep a healthy environment in our home. Trying to help him took a toll on my own well being. I was losing sleep, failing classes and struggling at work because all I could think about is how badly I wanted to help him. It took a toll on the both of us. Xavier is the light of my life, he is my best friend. That is why it hurt so bad to watch him vanish into a dark place. It was painful to watch him be filled with so much anger and despair. I felt that I had exhausted everything I could do to help.

Xavier was not himself, depression had consumed him. My partner needed help and I didn’t know what to do. I had tried so many times. I tried being nurturing, being tough, tried staying away. At the time, the only thing he could bring himself to do was put the pads on. Football was his escape, but at what cost? Seeing how his depression changed during the season made me think that the constant hits to his head were not helping Xavier’s situation. He was in a helpless state and the only things he felt he had in his corner were football and myself. Every day was a struggle for the both of us. I had to make a decision. I had to give him a choice. It was either get help and I would be by his side or I would have to leave. It wasn’t until that moment and that talk that he decided to get help. It was that same day we sought out assistance. It wasn’t an easy step we took and there was a lot of hurdles we had to overcome as a team. I stood by his side, gave him his space when he needed it but I also had to be that push that wouldn’t let the space he needed become days laying in a dark room. We had to do a lot of self discovery both independently as well as a couple. We started seeing a therapist so we could learn how to be strong for one another. To this day we still see a therapist. There should never be shame in talking to someone. There is always space to become better and stronger. Xavier often tells me I saved him, that he doesn’t know if he would be here If I hadn’t stayed by his side. This is especially hard to hear, it is gut wrenching and crippling to know he was that consumed. It’s difficult to know that no matter how much you love someone and no matter how hard you try that it may not be enough. I am so grateful he made the choice to get help. Therapy was a life saver.

 

What kind of support did you and Xavier receive?

We had to make a lot of choices to let go of the toxic people and environments in our lives. We had to work daily on getting him out of that dark place. We quit drinking for a year so Xavier could focus on himself with no self medicating. Alcohol and depression is a lethal combination. I wouldn’t say he was ever an alcoholic but it was a deadly virus when he was in his dark place that dragged him down deeper. When you are a spouse of someone who suffers from mental illness – depression and anxiety – it takes a lot of learning on how to be a team. We worked hard to create healthy habits. Xavier was referred to the team doctor who was a great support and helped point him in the right direction to get medication to help balance him. He had frequent visits to a psychologist who helped him to understand his emotions and we started seeing a therapist together.

We didn’t always have support though. There were times he was turned away and told he needed to find help on his own. Being a free agent, without healthcare, and in another country, we would find ourselves in the emergency room.

Support on my end, I had my family. My family has saved me from my breaking point on more occasions then I can count. They are truly incredible people to have supported us in such a lethal time.

Move forward to present day. We are in Chicago and I have had the opportunity to become very close with my in-laws who have also been a great support. I believe it’s very important to have a support system for both you and your partner. It has been a long journey of ups and downs, but we are determined to be strong. Xavier has decided to use his experience to help others and make a difference. It is amazing to see him stand up and share his story. He learned that keeping things in only hurts himself, followed by hurting the people he loves. He is now able to use his voice to let others know they are not alone. This is almost like self-therapy for Xavier. I will never forget the look on his face the first time he stood up to talk publicly about his experience and he received a standing ovation. It brings tears to my eyes every time I think back to it. I think that was the moment he knew it was okay to tell his story and that people cared.

 

What support do you think should be available to concussed athletes?

I think first and foremost it needs to start with talking about it more – education, discussion, and openness amongst teammates and organizations. Not letting it be the elephant in the room. There should be support groups, therapists and anonymous helplines the athletes can call for help. Over the years, I can think of many times when Xavier should have received more assistance. I am now working with some organizations to create a safe place for athletes. More needs to be done and it starts with someone taking a stand – stay tuned!

 

How has your experience as an outspoken, supportive wife of a concussed professional football player changed your life?

I have had mixed reactions but anyone who knows me knows that when I feel strongly about something, I will speak up about it. Mental Health – even concussions – aren’t something everyone is comfortable speaking about. I have had spouses come to me with their concerns with their significant others which I am grateful I have been able to point them in the right direction or just be an ear for someone. Mental Health in sports is more common than we are led to believe and by speaking about it we can allow others to know they are not alone. We can provide support. I am thankful for organizations like the Canadian Mental Health Association and Concussion Legacy Foundation Canada who have been very supportive of our mission and look forward to collaborating in the future.

Can you describe what it is like to be part of the support system for a concussed athlete? What advice would you give to others who are support systems for concussed athletes?

I struggled with taking things personal. I would react thinking I did something wrong. I would get angry with the way my husband was acting. My advice is to take time to learn about concussions and mental health. To try not to take it personal. Remember you are a team and always be a friend. Always offer your help and express your concern and never judge or make them feel guilty. They are already hurting enough. You may have to take on more of the work. Seek out a therapist and find help that you can present to him/her. Don’t be afraid to ask “How can I help?” Remember why you fell in love in the first place. Cut out alcohol when times are bad. This can trigger a viral downward spiral.

You also have to take care of our own personal mental health. If you can’t help yourself, you will not be able to help someone else. It can start to break you down so always remember you need a support system too. There will be many ups and some really hard downs that you shouldn’t have to be alone for. For the spouses of football players, Yodanna Johnson and myself have created a private Facebook group called Women of the CFL where we can help you with resources and support. Please feel free to direct message either one of us for more information.

 

Concussion Be Gone

All my life, I have been an athlete. For as long as I can remember, I always had a basketball in my hands. It’s in my blood and a part of who I am. I loved the game more than I loved anything really, but the thing that I loved so much was also what brought me the greatest amount of pain. My life completely changed on Friday, January 12th. I remember that night like it was yesterday, my team was playing against the best team in our county, North Forsyth High School. It was a difficult and hard night, but I was working my behind off to score points for my team. Then I was hit, literally. I went up for a lay-up and came tumbling down, slamming my head into the ground. Immediately, I came to tears. The trainer took me away and had me go through a series of tests to determine the severity of my brain injury. I couldn’t say the months of the year backwards or dart my eyes back and forth without an excruciating amount of pain entering the back right corner of my head, where I had been hit. The trainers words will forever ring in my ears as he told me I had a “very mild” concussion.

The fact that the trainer told me that my brain injury was “very mild” is almost hysterical to me now, because though it might have been mild, I endured a long battle with it for eight months. Nothing seemed too mild about it. But after this trainer’s diagnosis, I went home and rested like I was instructed. The next morning, I felt amazing, even normal. I had no concussion-related symptoms for two days straight, so in my head I agreed with the trainer this was definitely just a mild concussion. I went to basketball practice that Monday morning and sat out the entire practice. Still, no symptoms. It wasn’t until I went to my first period class, Calculus, that everything would come tumbling down. I remember walking into class, sitting in my chair, and looking up at the board for the warm-up problems. Immediately my head began to go off. This was no regular headache, the best way that I can describe it is like bombs being blown off, while sharp pains strike deeply into the sockets of your brain. Graphic I know, but that was how intense the pain was.

My school nurse instructed that I immediately go home and see a doctor. Later that week I went to see Dr. Oluseun A. Olufade at Emory Sports Medicine. He simply told me that I needed to rest and in due time my pain would go away. He was right, the first week I improved tremendously, even to the point that I thought I was completely done with this concussion thing. My confidence ran a little bit too high, and I decided that I was ready to attend my team’s basketball game. I wasn’t even close to handling the light, sound, and high activity that was within the building that night. This night set me all the way back to day one of my injury and is when the vicious cycle in my recovery began. For a week I would get better, then I would get worse. It never failed, month after month nothing changed no matter how much I rested or how many medications I took–my head pain and sensitivities did not go away.

This vicious cycle began to put me in a very dark place. I began to develop depression, anxiety, and suicidal thoughts, all of which I never shared with anyone – not even my doctor. As time went on I knew that if I didn’t do something then, I might end up doing something irreversible. Coming up to my fourth month anniversary with my concussion, I went into fight mode. I began extensive research on post-concussion syndrome and therapies to treat it. One specific blog post that I found was about a man who had had post-concussion syndrome for almost over a year and completely recovered. This gave me hope. What changed everything for him was daily exercise. I remember my doctor telling me about studies, in which they found that exercise had been very beneficial for concussion recoveries, so I decided that I had nothing to lose and would give it a try.

The first week and a half that I began the daily exercises was terrible, I had pounding headaches, nausea, you name it I had it, but I persevered and did the workouts every single day. After that second week, I felt significantly better, better than I ever had before. I also changed my diet to become heavily plant-based and routinely did my vestibular exercises every morning. For the first time, I was seeing significant strides to a full recovery. As time went by, my setbacks became less frequent and my headaches decreased in severity. By August, I had gone one full week without any symptoms and by September I was completely symptom free and attended my first concert!

I was proud of myself, I had made it to the other side and was finally free, but something kept telling me that I couldn’t just move on. I knew that I had to help others obtain the freedom that I had won. Thus, I decided to create ConcussionBeGone. ConcussionBeGone is a blog platform that strives to educate those with brain injuries ways to heal, while also giving them a community of people going through the exact same struggles that they are. I hope that by sharing my own personal experiences, I can encourage someone to keep going and to keep fighting. My mom would always tell me, there’s nothing like turning what the devil meant for harm and turning it for the good of others. And I think she was right.

Happy Healing Everybody.

Nicole Toole

Dear Concussions

Cassidy Hill has suffered over 11 concussions during her young athletic career. She has written a letter to her concussions below.

 

Dear 11+ Concussions,

You have been a part of my life for 11 years now. For as long as I can remember you have been here, but your presence was never wanted; it still isn’t. However, now I have learned how to live with you, even though I want you to leave me alone. I have been told that you will always be here, fighting me for the rest of my life. At the beginning, you were no big deal because you’d knock me down, but I’d get right back up. You didn’t faze me. I had so many dreams and so many things I wanted to accomplish, there was no way I was letting you stop me from that. After you came back a few more times the doctors told me that you had won. That I had to give up on my dreams of becoming a basketball star, I was told there was nothing I could do; I didn’t listen. I was too young to understand your consequences. People didn’t know as much about you as they do now. You weren’t a mild traumatic brain injury; you were just a “bump on the head”. Then I couldn’t just rest for one night, it became weeks. Then months. I had everything I could have ever wanted in life because I had amazing friends, sports, coaches, teammates, and family. Everyone had such high hopes for my basketball career, you took that all away. Although, basketball wasn’t just a sport to me, it was my life and everything I ever knew. My life revolved around basketball, it was like half of me was taken away because I lost team Ontario, my competitive team, and high school team. Once you took all that away I lost myself because everything I ever knew was gone. Then my friends followed, and I wasn’t the same happy athletic girl that I used to be.

A switch flipped in my head and I found myself fighting to be happy. You took me out of school next. You confined me to the four walls of my room for months. No connection to the outside. You were just as mentally debilitating as you were physically. I wish I had listened to the doctors when you first entered my life. I didn’t know how to deal with you, what to do with all these symptoms. The headaches were unbearable, the pressure you caused in my head made me fall to my knees in agony. My friends didn’t understand; I was 16 and I couldn’t even go out to the movies on a Friday night. I felt alienated. Lost. Confused, at what I did to deserve this. How do I make you stop? The doctors recommended I go to Parkwood, the brain injury hospital in London, Ontario.

It wasn’t long until you came back. This time, I was wearing a helmet. I did everything right to protect myself from you, but it wasn’t enough. When that four-wheeler rolled, you were back. My grade 12 year of high school. I’m thankful that Parkwood taught me how to deal with you, they taught me that we can live side by side. I was still so angry with you though, how could I ever forgive you for what you took away from me? I was missing everything. I still am. I missed the high school sporting events, prom committee, assemblies, university parties, everything a young girl longed for. You made sure that I couldn’t have any of it. You changed my high school experience and now you have followed me into university, and you will continue to follow me for the rest of my life.

What you didn’t realize though was that you only made me stronger. I am now more determined with you than I ever would have been without you. I find happiness in the simple things now, and I focus more on school. I may have to work five times as hard as everyone else to get where I want, but I will never let you stop me. What doesn’t kill you, only makes you stronger is what everyone always told me. Now I believe it because I may not be where I thought I would be in my life, but that’s okay. I’m in university, somewhere the doctors told me I could never be. They told me to accept that I will never be able to pursue my dreams of a university education. I am making the most of the hand I was dealt. You may make things harder but you don’t make them impossible. Nothing is impossible. I may only be 21, but you have put me through more than what most people will go through in lifetime. 11+ concussions later and a lifetime of headaches, dizziness, anxiety, depression, drowsiness, difficulty concentrating and most of all: difficulty remembering. Sure, there is a lot of bad things that come along with you, but I must thank you for making me into the young lady that I am today. You have shaped me into exactly the person I want to be. You make life harder, but nothing that’s worth it is easy, right? It’s like I just made it past the second quarter, but there’s still half a game left and there’s so much that can happen. I keep telling myself that you’ve put me through the worst and it can only get better from here. Most importantly, everything happens for a reason. I am exactly where I am supposed to be, thanks to you.

Good-bye for now, my friend, my enemy, my concussions,

 

Cassidy

Learn from My Mistakes

 

Can you give a background of your athletic career?

Growing up as a kid, I was fortunate enough to try a variety of sports, however, as I got older my focus increasingly shifted towards hockey. Like most kids who played hockey in the GTA, I spent the majority of my career in the Greater Toronto Hockey League. My GTHL career started with the Toronto Junior Canadians but after 4 great seasons there, my best friend and I moved to the Mississauga Rebels. With the Rebels, we quickly became one of the top teams in North America, making it to 4 consecutive GTHL finals, winning 2 of them, as well as winning an Ontario Hockey Federation championship and upsetting our rivals, the Toronto Marlboros to win the OHL Cup. In all honesty, it still puts a smile on my face knowing we beat the 96’ Marlies, who in my opinion will go down as one of the most skilled minor hockey teams of all time, with players like Sam Bennett, Connor McDavid, Josh Ho Sang and Roland Mckeown. After the Rebels, I finished up my career with the North York Rangers, hoping to attract the attention of college scouts. At that stage in my career I had been in contact with schools such as Providence, Penn State and Canisius, just to name a few. My ultimate goal was to pursue some sort of professional career. Although that did not work out, I do still play hockey today in what I consider to be one of the best intramural leagues, the LUG. Although it is non-contact, my cardio is almost non-existent and the game is at a much slower pace, we still try our best to get pucks in deep, keep shifts short, and buzz around out there.

 

During your hockey career, did you ever receive a concussion? Can you recall when it happened? How did it happen?

Yes, I suffered multiple concussions, both diagnosed and undiagnosed. I had sustained a few when I was younger, but they were not as significant as the ones that I suffered in the last two years of my career. The concussion that was the beginning of the end of my hockey career, was during the first game of the regular season in my OHL draft year. I was chasing the puck into the corner, one stride ahead of an opposing defenseman. Just as I felt the weight of the puck on my stick, he cross-checked me, slamming my head into the glass. As a result, I didn’t play the rest of the game and ended up being out for six months. The next year, I worked on getting back into game shape and ultimately proving to myself and others that I was more than capable of obtaining a Division I hockey scholarship to play in the States. Unfortunately, this was cut short. Halfway through one of the first games of the midget season, nearly a year to the day after my previous injury, it happened again. This time, I was the instigator. I was forechecking, when I came around the net and hit a guy at full speed. Our helmets collided, resulting in another concussion. I told myself it was no big deal, but that night and for the next month or so, my headaches were unbearable. Being young and immature, I told no one, continuing to play for over a month, until I sustained a second concussion. In mid-October my mom confronted me, I finally broke down, revealing to her that I had been concealing symptoms for a while. In conclusion, I was advised by my mom, dad and doctor to give up hockey. To say I was devastated would be an understatement, hockey was the only thing I knew, it was my life and at the age of 16 I was forced to retire.

 

How were your concussions handled by the medical staff? By your teammates?

In Minor Midget the medical staff handled it perfectly, no matter how much I pleaded with my coaches to let me back in the game, they would not allow it. As for my teammates, they were supportive throughout the entire process. We were a very close group of guys and I was fortunate to be part of such a great team. However, during my Midget year, it was a different story and I take full responsibility for this. I was on a new team, again with a good group of guys and medical staff. The only difference was that this year, I was well aware that if I had revealed to my parents or coaches that I had sustained another concussion, my hockey career was most likely over. I did everything in my power to fight through symptoms, which at one point included taking up to 4-5 Advil prior to games. I was determined to at least make it to a point where I could sign my letter of intent.

 

How did your concussion affect your personal, school and athletic life?

My concussions have had a huge impact on not only my athletic life but my academic and especially, my personal life. I had to retire from hockey and all other contact sports. The affect it had on my academics was also prominent, in both grade 10 and 11, I was either away from school entirely or limited to half days for almost 6 months in both years. If it weren’t for my high school, St. Michael’s College School, and being ahead of the curve when it comes to concussion rehabilitation and academics, I strongly believe I would not have graduated high school when I did. This is due in large part to the school’s learning centre and its Return to Learn program, led by Barb Csenge. I will be forever grateful to have attended St. Mikes. My struggles with concussions and academics did not stop there, in my 2nd year at the University of Western Ontario, I was forced to go back home and forfeit a year of credits due to another concussion.

The aspect of my life where concussions affected me most was my personal life. The most difficult part of my concussion experiences were not the physical symptoms, such as headaches, nausea, and dizziness; it was the mental/emotional symptoms. I became a completely different person. I was aggressive, impulsive and very easily agitated, which resulted in me doing certain things that I am embarrassed of. I became overly anxious and very depressed, eventually battling suicidal thoughts on a regular basis. I really don’t like talking about this, especially in a public format, as the majority of my friends and family have no idea. In fact, I had previously reached out to the Western University Chapter of Concussion Legacy Foundation Canada twice about getting involved but did not follow through due to the fact that I was not emotionally mature enough to open up about my experience. At this point in my life, I think continuing to increase awareness about concussions and their relationship with mental health problems is crucial and I am more than happy to continue to bring attention to it.

 

What did you do about your concussions? How did you feel?

In my minor midget year, I followed what the doctors advised me to do. This consisted of sitting in my bedroom by myself with the lights off, avoiding screens, physical activity and other activities that involved some sort of physical or cognitive exertion. I saw various doctors, osteopaths and physical therapists to try to return back to the ice. I was determined to get back with my team and finish the season – that was the only thing that kept me on track.

After my second concussion, I followed similar procedures. I spent almost a month in a dark room, very limited screen use, no physical activity, etc. Unfortunately, I was not as serious with my rehabilitation this time around. After the doctors told me I could not play anymore, I was discouraged, depressed and without any real sense of purpose. As a result, I started drinking heavily and used drugs to combat the headaches and emotional distress. There was a stage where I was unable to listen to music without the onset of a headache and I did not feel “normal” or symptom-free unless I was intoxicated. Looking back now, it’s easy to say how foolish I was but at that stage in my life, my concussion knowledge and the long-term effects they can have on your brain and cognitive ability were minimal. There was a moment where I had accepted that headaches, pressure and other physical symptoms would be a part of my everyday life that I would have to endure. My ignorance, wishful thinking, and lack of knowledge resulted in me not treating my rehabilitation seriously. In my mind, I never associated concussion problems with severe cognitive impairment later in life and I didn’t realize the effects that drugs and alcohol can have on someone who is trying to recover from concussion symptoms. These are only temporary solutions and prolong recovery, negatively impacting you in the long run.

 

How did your concussions affect your career path?

For a while I had no idea what I wanted to do after hockey. I was going through the motions and it wasn’t until recently that I decided on what I wanted to pursue. As I’ve gotten older, I’ve became more and more fascinated with the brain, how it works and how the physiological processes affect our behavior. Although I have very limited knowledge on the subject, I have become increasingly interested in the concept of neurogenesis and how we are able to promote it. As of right now, I am finishing my undergrad with a double major in Sociology and Psychology and would like to pursue a graduate degree in Psychology. I strongly dislike seeing people suffer and it provides me with a genuine sense of satisfaction when I am to help. In addition, I would love to combine my passion for sports with my Psychology background to be able to work with athletes.

 

How are you now taking your concussion experience and making a difference?

Concussions have changed my life. They have made me into the person I am today and I strongly believe that concussion awareness is extremely important. I try not avoid making uneducated assumptions but my guess would be that the majority of individuals who have suffered a concussion go through a quick and relatively pain-free recovery. However, in some cases there are negative consequences linked to a concussion. Hopefully by being completely transparent with my experience, I am able to shed some light on the harsh realities that can be potentially associated with concussions. Ultimately, my goal is to help others who might be going through similar situations. I have been involved with concussion awareness on and off since grade 12. In 2014, I took part in a symposium with world re-known concussion researcher, Dr. Charles Tater and concussion advocate/NHL hall of famer, Ken Dryden. Almost a year later, I received the Award of Merit, from the Brain Injury of Canada Awards. Today, I am involved with Concussion Legacy Foundation Canada where their goal is to educate players, coaches, and parents on concussions. In the future, I would like to continue to further my involvement in any way possible. Hopefully one day from a medical standpoint.

 

What advice would you give to young athletes?

First and foremost, be open and honest with yourself and others. If you are suffering from head problems, do not ignore it. People always preach not to take brain injuries lightly, and they are right. It has been seven years since I last played hockey and I still deal with symptoms on occasion. Trying to tough it out because it is the championship game or a scout is in the stands is not worth it – trust me. Secondly, as cliché as this sounds, surround yourself with people you can always count on. I was lucky to be surrounded by an incredible group of friends and family, most notably my mom and Nana. If an athlete is put in a situation where they are forced to give up their sport, it is vital to have a good support system around. It is a difficult transition; for many kids growing up their social circle, passion and identity is associated with their sport. Another piece of advice for those who find themselves in this situation where they cannot continue to play due to injury, is to find a positive outlet. I know this may be obvious advice but it can be easy to get caught up in activities that may be harmful. Find something that you are passionate about and enjoy doing. For me this was working out and ironically, kickboxing. However, I am only allowed to take part in pad work and technique – absolutely no contact. Lastly, do as I say, not as I do. I have made some mistakes in the way I dealt with my concussions, ones that you can learn from.

 

If you could go back and do things differently, what would you do?

There are a few things I would go back and do differently. The blatantly obvious decisions I would change are not continuing to play while being concussed and not to have resorted to drugs and alcohol as a way to deal with my symptoms. As cheesy as this sounds, the decisions I made back then, have shaped me into who I am today, and I would not change much. That being said, my one constant regret was trying to separate myself from hockey and the hockey world. There was a period where I wanted very little to do with hockey, I stopped going to my own games and broke off ties with a lot of my teammates. I made the mistake of isolating myself from something that provided me happiness. As I’ve gotten older, I have a greater appreciation for the time I am able to spend on the ice and around the boys. I think almost anyone who has played a team sport can testify that one of the best parts of being on a team is the camaraderie between you and your teammates.

Who Am I If Not an Athlete?

I was eight when my Mom first told me she had signed me up to try the sport of ringette. Prior to that, I had tried softball, piano, skiing and snowboarding, swimming, done jazz and hip-hop dancing, gymnastics, soccer and many other activities. I can remember clearly the first day at the rink. My Mom had dressed me at home, in an assortment of hand-me-down hockey and ringette equipment – and I’m pretty sure, a bike helmet. Even my skates were on with skate guards, as I sat sweating in the back of our mini-van, thinking “what in the world did my Mom sign me up for now”. Did I mention my stick? For those of you who don’t know ringette, you use a straight wooden stick with a plastic tip on the end. The one I had, was a hockey stick with the blade cut off…I kid you not. We get to the rink and I went waddling into the arena, pulling on my Mom’s pant leg and begging her to take me home. I was causing a scene as all the other girls were flying around the ice, and I knew I was going to topple over like Bambi the second I stepped on the ice. Before I knew what was happening, my Mom grabbed me by the shoulder pads and plopped me on the ice. At this point, I knew there was no turning back. It wasn’t until a friend of mine from Girl Guides said “Hey Em, get out here” that I decided to take my first stride, and I haven’t looked back since.

I played ringette competitively for 10 years for the Mississauga Mustangs. My position was forward, as I had to be in the middle of the action and fighting for the ring at all times. At the age of 12, my coach gave me the nickname Taz, a shortform for Tasmanian Devil from the Looney Tunes as I was quick, aggressive, feisty, yet tactical. I was a smart player and could always see the full ice and determine the best pass to make. I always gave it everything I had, and left it all on the ice – every single time. In my later years, I was chosen to be assistant captain and then captain for 3 consecutive years. I found myself comfortable in a leadership role, and feel I set a good positive example for my teammates. We practiced every week, and played games every weekend. To say there was nowhere I would rather be than on the ice, was an understatement. I was fully myself on the ice.

As an aggressive go-getter player who weighed 115lbs and measured 5’1 at the time, I took my share of knock downs. Some of the parents referred to me as a bungie cord – when I fell, I would bounce right back up. And that’s what I did well, at least most of the time. My first concussion was in 2010. I was circling around the net with the ring, and a player on the opposing team cross-checked me into the net, and my head hit the goal post. I fell to the ground, and this time I stayed down. Our trainer ran out onto the ice, and I remember feeling quite disoriented. I couldn’t remember what had happened, but the trainer had told me I hit my head. I felt suddenly weak and nauseous and just wanted to get off the ice and out of the spotlight of all the glaring parents and fans. She brought me to the dressing room, and asked me to rate my symptoms on a scale – foreign to me at the time, the SCAT form. At halftime, all the players flooded into the room, alongside the coaches wondering if I could get back on the ice, and my parents worrying about how I was. I remember trying to rationalize that the only reason my head hurt was because I hit it, just like if I had hit my arm – and insisting that I was fine. The trainer recommended I stay off the ice for the rest of the game, which was the right decision at the time. Being an athlete however, it angered me to have to sit on the bench while the rest of the team continued to play. This is where I realized how “silent” this injury was. No one could see it, but I was hurting. My family physician suggested a week off practices and games (which felt like an eternity as an athlete). I vividly remember walking down my high school hallway and finding the lights excruciatingly bright. After a week of decreased screen time, no exercise, lots of rest and multiple ibuprofens, I was back on the ice.

In the following years, I struggled with numerous concussions, both diagnosed and undiagnosed. On one occasion, I was cross checked from behind (did I mention ringette is non-contact?) and flew head first into the boards. I was carried off the ice on a stretcher and brought to the nearest hospital. Concussion. On another occasion, I was driving with a friend and he stopped abruptly and my head swung forwards and backwards. Concussion. Another time while teaching swimming lessons, I had a preschool student come down the slide and accidentally give me a kick to the head. Concussion. I had another collision on the ice, that seemed like any other. Concussion. I was walking up the stairs in my student home and my friend jumped out and scared me, causing me to hit my head into the door. Concussion. I think you get the point. Some of these events I shared with my parents, friends, doctors and others I kept to myself. It was obvious that I was becoming more prone to this mild traumatic brain injury. Yet, I continued to play.

Grade 12 was a terrifying year for me, as I wanted so desperately to get accepted to Western’s Kinesiology program. My career goal was to become a physiotherapist, and the only place I wanted to attend was Western. My decision to pursue Western was also largely influenced by the fact that they had a successful Varsity Ringette team. The day of my acceptance was one of the greatest moments of my life. I tried out for Western’s ringette team, and was selected there as well. I was a Varsity athlete, at a well-known highly-educational establishment. Life couldn’t get much better!

To top it off, the ringette team was great, the players were fun yet motivated, and the coaches pushed us hard. We played our first game in Dorchester, and I remember feeling overwhelmingly proud of myself. I was wearing the Western jersey, and my parents were there to cheer me on. I felt powerful, playing my favourite sport and representing my school. Little did I know; it was going to be my last game. The following week during practice, we were doing one-on-one drills and I was up against a defender. I did my best to push her off, but I ended up getting knocked down and my head made contact with the ice. Immediately I shot back up, and headed to the back of the line. I remember seeing my coach skating over out of the corner of my eye, and I was dreading the question he was about to ask. Before he could say anything, I blurted “I’m fine”, but that wasn’t enough for him. I told him I had been concussed several times before, and I knew the symptoms like the back of my hand. I convinced myself that it wasn’t another concussion so I continued to participate for the rest of the practice. The coach insisted I make an appointment with a physician, just in case. I eventually gave in and scheduled an appointment with Fowler Kennedy Sport Medicine Clinic on-campus. Two days prior to the appointment, I was still asymptomatic and had to take an elevator in a building. You know the feeling of your stomach dropping on a roller-coaster, or sometimes in a tall story building elevator? Well, I felt that but much worse. I felt like my head was swollen up like a balloon, I was losing my balance and suddenly wanted to vomit. This is when I knew that something else was going on and I broke down crying because I knew what was coming next.

I first met with the Sport Medicine physician at Fowler Kennedy in October. We had discussed the specifics of the fall, symptoms I had been having, as well as (yup) my concussion history. It didn’t take much time for her to officially diagnose me with a concussion. She recommended one week off of classes and ringette, and that we would reconvene in a week’s time. At the time, my primary concern was not getting back on the ice, because I had been down this road before. I knew that after a week I would go back and see the doctor, and she would clear me to return to play. What was really bothering me, was taking the time off school. It was my first year of university, and being a week behind on lectures and readings felt like 3 months in high school time. I put an immense amount of pressure on myself to begin with, and not being able to keep up with the work while my roommate, classmates and floormates did, was disconcerting. I sat in my dorm in the dark, and only left to get food. First year parties and events were happening around me, yet I found myself isolated and alone. “Are you sure it’s okay if we go?”, is what they all asked me. “Of course” I would say, but truly, I did not want to be left alone. A week went by and I was ready as ever to return to school and ringette. The doctor asked me how I’d been, I chose to be honest and admit that I still had sensitivity to light, pressure in my head, feelings of anxiety and difficulty sleeping. She decided that another week off is what I needed to ensure I was completely recovered. Reluctantly, I agreed – she knew best I suppose. I decided to go back home for the week, to combat the feelings of missing out. That week was filled with feelings of loneliness, popping ibuprofens, sharp headaches and dark rooms. I was counting down the days until I could go back to Western. I just wanted to have the “normal” student experience. At the end of the week I headed back up to London. Feeling optimistic, I met with my physician. We had our regular conversation about my progress, and I told her I was still slightly symptomatic, but put emphasis on how I was feeling so much better. She looked at me, and I was mortified because the moment I had been dreading, and pretending would never occur, was about to happen. “Emilie, I think it would be best if you did not return to school for the remainder of the semester. I also think that it would be a good idea for you to quit ringette for good”. Those words still haunt me to this day. Immediately, I burst out crying. How could this possibly be happening? My plan of the perfect university experience crumbled before my eyes. The worst part was that she looked at me and said “I know how you must feel….”. and I don’t remember the rest of the sentence because of how offended I was that she thought she could possibly relate to what I was feeling. She did not know, and she had no right to pretend like she understood. With tear-filled eyes, we agreed I would follow up with her in January. I tried calling my Mom. No answer. My Dad. No answer. I remember curling up on the side of the building, and bawling my eyes out. I had never felt so lost and alone in my entire life.

My therapy team included chiropractors, physiotherapists, kinesiologists and physicians. We worked on balance, reading, memory, and emotional control. It was a long few months. I would not have made it through without the support of my family and my friends. I remember catching my Mom crying because she felt sorry for me, and it absolutely broke my heart. She couldn’t relate, but she was there for every second of my struggle. She held me when I cried, read for me when I couldn’t, drove me to my appointments, and promised me I would come out stronger than ever. And I did. In January, I returned to Western to complete my first official semester of university and completed it very successfully. I was welcomed back with open arms, and am eternally blessed for all the friends that helped me re-integrate back into student life.

Fast forward to today. I’ve battled with anxiety and depression from my concussions. I’ve questioned who I was, if not a ringette athlete. I have struggled to find other hobbies that made me feel the way that ringette made me feel. I sometimes felt completely lost and alone. I continue to suffer from chronic tension headaches and migraines. But I made it. And I know that at the time your life changes, it feels completely impossible to surpass, but you do, and you come out of it a better and stronger version of yourself.

Personally, one of the ways that I found helped me accept my plight was to give back to others in similar circumstances. In my third year of university, I was the student athletic therapist for the Varsity women’s hockey team and was their first medical response team in case of injury. I knew how to relate to an injured athlete, as an athlete – and I think it made me a better student therapist. Secondly, I got involved in concussion research in the Neurovascular Research Laboratory at Western. I was in contact with adolescents who had been diagnosed with sport-related concussions and attempted to understand the physiological changes that occur in the body with this injury. I was able to spend one-on-one time with them, tell them my story, and let them open up to me about theirs. Making someone else’s negative experience more tolerable helped me overcome more fully my own anguish.

Although writing my story was harder than I imagined it could be even after 5 years, it was a therapeutic undertaking for me and others. It is important to see it as a story of success, of growth, change, and of strength, as opposed to an atrocity or a tragedy. It is important for young and older adults, to see that they there is a light at the end of the dark tunnel and that the struggle is part of the journey. I hope that my story can provide a sense of comfort to others who are going through concussion recovery. There is life after these experiences and while you may have to make changes in your life, there are other equally rewarding experiences that await.

Fish out of Water: Caring for a Child with a TBI

Can you give us a brief overview of why you feel it is important to share your experiences, both personally and as a caregiver, with head injuries?

Our family, has had to deal with the hardships of maneuvering through the uncharted territories of caring for a child that has been deemed to have acquired catastrophic brain injury to her frontal lobe. I can tell you that it is hell. While we are in the midst of a lawsuit, which in itself is difficult, it has afforded us the opportunity to have “cutting edge” treatment providers. Now by saying this in no way means that the treatments are cutting edge but it does put us in a situation other may not have the ability to pay for.

My daughter sustained a life altering catastrophic brain injury at 15 years old and has not been the same since. The vehicle that she was a passenger in was traveling at excess speed, when it struck an articulated bus. Her head stuck one of two places the B-pillar or the side window with an impact speed of roughly 75 km/h. Scenario one has my daughter’s head struck the B-pillar at a determined the g-force would of 628 g. Second scenario, is if she had she struck window glass the g-force impact would be 765 g. It has been 9 years and within those years, I am learning what directions to follow and ones to avoid. There is no book on how to care for someone that sustains these types of injuries. At the hospital, knowing that on scene she was unconscious, choking on her blood, convulsing and combative, in which they had to sedate her. After doing scans to ensure she didn’t break anything, tell us that her nose and orbital bones were broken and after they sewed up her head with 14 stitches, they sent us home with a pamphlet that talk about minor concussions. Told me to look out for headaches, and vomiting. We got 10 feet from her hospital bed, when she started to vomit. They saw us a half and hour more and sent us on our way. Little did we know what the real extent of her injuries were. So from point of triage to today, we have had to follow a path not travelled.

 

Can you describe your experience as someone who has suffered a concussion? How did your recovery process go? Is there something you wish you would have known that would have impacted either your attitude toward your recovery or your recovery in general?

I have sustained many concussions, one from a vehicle accident which I was a passenger in and the others through sports. During my accident, the other driver hit me head on and I sustained severe whiplash which was not treated at the hospital. This injury has plagued me for 31 years.

I also played competitive basketball which I can guess I must have had minor concussions every game I played. I did have one concussion that I can distinctly recall, which knocked me out for a moment and when I came to I could not remember what happened. I saw a tunnel of lights for hours and even chipped a front tooth. Again, no hospital visit. I do have light sensitivity, irritability and migraines. I also have experienced ocular migraines in the past but for me, the light, noise sensitivity, and irritability are daily struggles I still experience.

Looking back I only wish that I would have known I had an injury and had been able to seek out help.

 

Can you describe how your daughter’s severe head injury impacted both her and your family?

This experience has been life altering. We were like fish out of water, not knowing what to do or what to expect. She went from sleeping 22 hours of day, to falling asleep mid eating, to forgetting words, keys, glasses etc., outlandish odd behaviour, drugs, losing ALL of her friends, police calling the house, aggressive threatening behaviour, destructive behaviour, abusive behaviour + language, walking on egg shells, suicide threats, deep deep depression, mood swings, bad actors in her life, debt etc.. the list goes on.

We have had to bail her out of situations that I never dreamed I would be in. Had to advocate for supports, school accommodation, employment situation, etc. We as a family have sustained a financial burden, family dynamics are irreparably changed, our lives are guided by the mood of our dear daughter.

But more than anything, it is hard to watch her hate herself so much; to the point that she wished she wasn’t alive because an injury that was not her fault that changed the very core of who she thought she was. To be devastated that all her friends and some family members left her when she needed them the most. It’s hard to watch your child die inside. We are always championing her, supporting her, encouraging her, advocating for her because we believe she is worth it. We see her drive to prove the world that she can do, therefore will do – her passion to persevere beyond all obstacles, her beauty, her gentleness, her resilience and all of her gifts that she possesses to be an inspiration to others.

 

How do things change as a caregiver of someone who has had a severe head injury? Was there anything you were not prepared for or support systems that you wish you could have had access to?

The day she got injured my life was a game changer for my role as just mother. I am her confidant, her punching bag, her advocate, her champion, her cheerleader, her manager, her accountant, her safe place, etc., the list goes on.

There are limited supports in place for caregivers in situations like this. Things as simple as helping them stay healthy (mind/body), be a fully functional mother/brother/father/wife etc., guiding them through to the proper channels for tools to help their injured family member, and advocacy for the health of their loved one are not so obviously available.

The big things I wished that I was prepared for:

  1. More info at the hospital about head injury so I could oppose the fast discharge
  2. A social worker (or someone) assigned at the hospital to educate me in next steps, follow up, and be there as a resource
  3. As a mother, I was shell shocked, afraid and hyper vigilant
  4. Since the accident was a result of a car accident I would have wanted someone to walk me through our rights as victims:
    • Do I need to contact a lawyer? What to ask the police, doctors, etc.? What my rights were to allow me to stay home with my daughter? How to go through the process of completing a disability form, ODSP?
    • Insurance claims – what to do, how to do it, what to ask , what benefits do you really have and how to get them?
    • Support for caregivers and a 24h emergency response resource. Having a child with this disability makes it difficult to maintain household responsibilities, while ensuring that all treatments, appointments etc. are met. And getting a call from your daughter, screaming and incoherent is frightening and something I was not prepared for. To know you have someone available to you when you experience these outbursts or even when your child is just acting a bit differently would have been a resource I would have benefitted from.Legal capacity: This needs to be better defined and allow caregivers the rights to overturn decisions. Just because she can understand the value of a dollar and understands that bills need to be paid DOES NOT mean that she has capacity to act on her knowledge.

 

If there was one piece of advice you could offer to other caregivers, family members, or friends of those with a head injury, what would it be?

This one is hard one to answer. I would say find the best doctor you can. Research, get a good lawyer. Keep good notes, keep advocating, and be sure to try and take care of yourself mentally, physically and emotionally.

 

Parting words: My focus

While I am grateful for the parents like Rowan’s who have opened up the dialogue on preventive protocols for secondary concussions which was needed in a big way, I think the word concussion and the way we currently think about these injuries can be deceiving. My feeling is that there is a perception that a concussion is something that one can get over and move on and with no lasting effects. While this is true for a large subset of the population, this is in no way the reality for all of us. Yes, my daughter suffered a TBI, which is not the same as a concussion/mTBI (mild Traumatic Brain Injury); however, I myself sustained concussions and still suffer from symptoms of PCS years later.

Additionally, there is not a lot of dialogue around how the injury, whether minor or major, affects family and friends of the injured. While we spend so much time talking about the injury itself, we forget that those family and friends are suddenly left with the burden of heavy lifting by supporting, advocating, directing, managing, caring, and mentoring, above their own needs, because the system doesn’t understand the impact that brain injury has on them.

I struggled with every aspect of this journey, from applying for and being denied a disability tax benefit (multiple times), initial care/diagnosis at the time of injury and understanding that what my daughter sustained was not a concussion, but instead a TBI (Traumatic Brain Injury), keeping myself and my family afloat when we clearly had no idea what our lives had become, and navigating through the health care system, lawsuit, etc.

I have learned over the 9+ years that treatment protocols are inconsistent or regulated. The research being done to study the effects of injury on the brain are being explored from different bases. Money that is being funded for brain research is being allocated to duplicated research agencies and the findings are not being shared. The best way to describe it is that each agency works independently from one other. While preventive measure of protecting your brain and recognizing the sign of trauma through sport are very important, it is only a small part of the issue. The leading cause of traumatic brain injury in Canada are:

Motor vehicle collisions (45%)

Falls (10%)

Bicycle incidents (10%)

Sports, Assaults, other traumatic causes (10%)

Workplace Injuries (10%)

Medical conditions or diseases (10%)

Asphyxia, poisoning, other toxins (5%)

If sports only account for 10% of all brain injuries why are we spending so much time studying the effect of injury in sports? I feel it doesn’t matter how you acquired your injury, it matters what the right treatment protocols for each level of severity. We need proper supports in place until the patient no longer requires it, education, and support for the caregiver, just to name a few.