Posted: November 15, 2017

Posted: September 8, 2017

I started playing hockey as soon as I became eligible, playing under the ‘Timbits’ hockey program. As early as I can remember, I fell in love with the game. When competitive hockey became an option, there was no doubt in my mind I wanted to try out for the team. I successfully made the team as a defenseman but as cliché as it may sound, I wanted to score goals like Sidney Crosby, my favourite player. I decided to move to forward in my third year of competitive hockey, and have never looked back. I would not trade my years of experience, competition, and fun I had playing hockey for anything. I’ve gained life lessons that will forever be ingrained in my character, like developing leadership qualities, instilling trust into my team, and learning to be disciplined and punctual.

In 2013, I was the victim of a concussion. In a playoff game, I received an impact to the head from the hit of an opposing player. His hands came up under my chin and I was flattened on my back. I quickly stood back up and went to the bench. To this day, I am unsure if I hit my head on the ice when I fell. To my own detriment, I was unaware of the signs and symptoms of a concussion, and the seriousness with which they should be treated. So, I returned to play. This is what I want to speak out on. A trainer or teammate should have flagged that I was hit very hard in open ice and suggested to take me out of the game or wait a couple minutes to see if any symptoms arose. My trainer at the time just asked me if I am alright to continue playing, as well as questions of ‘Do I know where I am’, ‘Can I read the scoreboard from the bench’. I knew where I was, and I could read the scoreboard. I did not have an immediate headache after the impact, in fact, it was only after the game that I started feeling ‘off’ and that is also when my headache began.

Four days later, I was playing in another game when I received a smaller impact to the head, in the corner of the ice during a battle for the puck. The opposing player’s elbow grazed my head, but it was enough for me to notice that I did not feel myself, and hadn’t been myself for more than four days. This was when I knew something was wrong. I started feeling a headache and slight dizziness, and I knew I needed to step out of the game. I watched the remainder of the game from the bench, supporting my team.

I saw a concussion specialist who informed me that I had gone through what was known as Second Impact Syndrome. This occurs when a person receives a concussive impact, and then receives another significant impact to the head within a short time frame afterwards. I was told that I was lucky to still be fairly healthy aside from the symptoms that came with the concussion. My doctor initially said to stay out of school and minimize cognitive stimulation for approximately a week or two – meaning no school, no sports and no physical activity. At the end of week two, I was still suffering from symptoms. It took around six months of rest before those symptoms cleared up. I was out of school and sports for the entirety of that six months. I tried to attend school on days when my symptoms had lessened, just to catch up, but I could hardly attend two days in a row before they worsened. When I started improving, I was slowly increasing more incremental activities into my daily routine. I was cleared to return to full activity with no issues once I had recovered. Just over a year later, in December of 2014, I suffered another concussion. Luckily it was minor, and I was also well equipped with the knowledge I needed to take the proper precautions. By slowly integrating more activity until I felt like there was no more limit to what I did and how I felt doing it, I was again cleared to play.

After that hockey season, I made the tough decision to take a couple years off contact sports, choosing to play non-contact hockey instead. However, in the fall of 2016, I decided to play contact hockey for one last time with friends I grew up playing hockey with. During the first game of the season, I was hit to the head by an opposing player whose hands came up and made contact to my chin. To most people that have had a concussion history similar to mine, you would imagine that my first thought would have been for the health of my head. Unfortunately, the pain in my jaw overpowered any thoughts regarding another concussion. I had not fallen unconscious, but I wanted to talk to my trainer to let him know what was happening. I told him what I was feeling, and he thought I was okay to play the remainder of the game if my jaw was still in place and all my teeth were still intact. Although he is not to blame for letting me go back out to play after a head collision, this trainer was well aware of my concussion history. Luckily, I did not receive any significant hits that rattled my head for the rest of that game. When I got home later that night, I was feeling off. I recognized the feeling as how I felt when I had my previous concussions. My mom took me to the hospital the next day for x-rays of my jaw as well as a concussion diagnosis, which turned out to be positive. At this point, I had been reminded of the concussion protocol more times than I could remember, so I was able to remember to minimize my stimulation, and start my road to recovery from there.

After a couple months of rest; away from school, work, and limiting time with friends, I did not show any improvement. My specialist determined that I had progressed into the PCS stage. Post-Concussion Syndrome (PCS) is a stage in which your concussion symptoms have persisted longer than the normal course of recovery. The way it was explained to me, PCS is a stage in which your body can be constantly on high alert. Your body cannot find a way to reassure itself, which can exhaust you without having to conduct physical activity. This is caused by an amygdala (part of the brain) that is unable to stop subconsciously scanning for threats. When your body is always in high alert, or “fight or flight” mode, it causes muscles to tighten to prepare for potential threats. This created my pains, aches, and tightness throughout your body.

Although the physical aspect of constant muscle tightness and maintaining your pain levels can be exhausting, it created a constant anxiety within me which I had not dealt with before. It’s general anxiety, caused by this high alert phase. This limits my ability to be out of the house because when I am out, my alertness increases and worsens my anxiety as well as my muscular aches. My average outing that also tends to be one of the higher strain “activities” I do, is going to the grocery store with my mom. It becomes less manageable based on how busy it is when we go. When it is not too busy, it is still a tough task, because of the brightness of the lights, the people and the constant background noises. This is a very normal task for someone else, but depending on the stimulation, this could worsen my symptoms and take me out of commission for the remainder of the day, or I could manage making it out without any repercussions.

Through my journey, I’ve found out the hard way that concussions are often misunderstood by people who have never been educated about them, unless a close relative or friend has previously suffered from one. Of course, the vast majority know what a concussion is and how it can affect someone for a short period of time. What many people do not realize is that the severity of the impact and a person’s previous concussion history can make symptoms increase in severity and duration. As I mentioned, if you’ve suffered from a concussion or know someone that has, this information is nothing new to you.

However, many people seem to think a concussion involves just a bump to the head, followed by a dark room and no electronics. While that is partly true, there are cases (like mine) where symptoms get to the PCS stage where there has been no change in condition for a prolonged period of time. You remain limited in normal activities that others find to be trivial and mundane.  To those around you who cannot grasp what you are going through, they can become confused as to why you are still struggling with certain things. As an example, I will use classmates at school. It is very hard for classmates to understand why you are no longer attending school. They see that you suffered a concussion and suddenly you’re out of school for a few months. Yet when they can come to terms with this absence, it becomes complicated again when they see you start integrating yourself into more stimulating activity, like seeing you at a grocery store or heard that you are having a close friend over to your house. They cannot figure out why you are able to go to a store and shop, yet you cannot attend school.

Concussions are not like any other injury, where you break a bone or sprain a muscle, because there really is no approximate time as to when a person will be fully recovered. The way I saw it was, if people couldn’t see the injury then they assumed I was fine. Therefore, I think classmates struggled to grasp why I was not seen in school for a long period of time. I believe the misconception of concussions had people wondering why I suddenly stopped attending classes to recover.

Truthfully, I never took what people thought to heart simply due to the fact that they do not know what I am going through or having to deal with. Whether it was the many appointments with various doctors, the acupuncturist, the massage therapist, the neurologist, or whoever I was seeing, the only person that fully understood was my mom because she was always alongside me. Other than my immediate family and close friends, no one really understands what I am going through on a day-to-day basis.

As frustrating as that misconception can be, I chose to accept it and work through it. It would be much harder to stay positive and continue progressing in my recovery if I spent time dwelling on what others thought. The only person that can dictate my recovery is me, by knowing my limits on how to push myself to do stimulating activities but stopping before I bite off more than I can chew. I know I will get better eventually. I know I will continue my life as planned, no matter what obstacles get in my way. The way I see my concussion and its limitations, is that it just put my life on pause until I am ready to take it on again. I may not have gotten my diploma at the same time as my fellow classmates, I may not still be working and making money like my friends are, but I will when this blows over. For now, the only thing I’m working on is my recovery.

I have had a concussion for about 11 months now. It has not been an easy road to recovery, but without the support and help I’ve had from friends, family, and doctors, this recovery would have been much more difficult. I missed the majority of my first semester of grade 12, along with the entire second semester, which means I lost the ability to graduate with my classmates. The one thing that helped me day in and day out was optimism, whether it was through others or reminding myself that I will eventually get back into what I was doing before this concussion occurred. I often told myself that my life was just on pause, that I was just sidelined, and I will succeed in what I wanted to pursue once I recover.

Posted: July 19, 2017

It’s strange how you can live your life never coming across the phrase “Post-Concussion Syndrome,” never thinking about it or knowing what it is. And then – boom – a series of events means you don’t go a day without thinking about PCS. How to fight it, how to solve it like a puzzle, how to explain it to doctors, or family, or friends

Three years ago I suffered a traumatic brain injury that affected every area of my life. I lost my career in big wave surfing and I was unable to keep a regular job because my PCS symptoms left me fatigued, anxious, and depressed. For three difficult years, I wasn’t myself.

It got to the point where I knew I needed drastic help, so I moved from Hawaii to Austin, Texas to start my recovery. I dedicated myself for fourteen months to extensive treatments and I was blessed to find the right guidance. My symptoms have gotten better, and I’m finally back in charge of my life and appreciating a new-found health that took so long to achieve.

I’m using my experience to help people who are currently suffering from the effects of a head injury and don’t know where to turn. The most important thing is to reach out for help and to stay hopeful. Your brain can heal. When you’re in the middle of a tough recovery process, this simple feeling of hope can be hard to find. Having a support system to keep you on track is essential.

I’ve decided to pledge my brain to the Concussion Legacy Foundation for research. I want My Legacy to be that I paid it forward, used my experience to help others navigate the seemingly impossible process of dealing with a traumatic brain injury. There isn’t a lot of research on brain trauma among surfers, and I want to be a leader in my sport, my community.

When you take a painful hit from an enormous wave like I did, it can be easy to focus on yourself, to dwell on why this happened to me. But the reality is that sports, especially extreme sports like big wave surfing, carry a risk of injury. I want the lessons I’ve learned throughout my recovery process to be available in case another athlete needs to hear that help is out there and they’re not alone.

Posted: July 3, 2017

At school Monday morning, I could not focus on the Spanish presentation as the words were jumbled and I couldn’t bear to look at the screen longer than a few minutes. I had never felt like that before, so that’s when I knew that something was wrong. Over the next fifteen months, my life as I knew it was completely different.

I took three weeks off from school to rest and recover. Unfortunately, I do not remember much from that time, as I was in a dark place. Literally, I stayed in my room with the curtains drawn and slept, a lot! Sitting on the main floor of my house was too bright and too loud for me. My head would constantly throb in pain. Some days I would wake up just to eat lunch, nap until dinner, and then go right back to bed. Other days I wouldn’t even eat because the headache pain made me so nauseous. This routine was repeated again and again. Time kept going, but I felt like I was standing still.

When I was awake, I walked around the house with a hoodie, sunglasses, and a hat on and only emerged from my room to go to a doctor’s appointment. We went to see so many doctors that I lost count. They all said the same thing, “you will get better, but it will take time. Unfortunately, we don’t know how long.” No one could tell me how long this would last, when my pain would subside, or when I would get my life back. That was so hard for me to understand. I was ending my sophomore year of high school and wanted nothing more than to get back to school. Throughout these three weeks, I had minimal contact with my friends.

What made things worse was that others could not understand my pain. No one from my team (players or coaches) reached out to me. The kids at school knew I was hurt, but they didn’t really know how bad things were. As time went on and no one reached out, my loneliness grew. I thought if I broke my leg, the kids would see the cast, sign it, hang out with me, and eventually I would heal. Unfortunately, there is no cast with a concussion, no obvious sign of pain or trauma. No tests to show progress.

After 3 weeks, I tried going back to school. To be clear, this did not mean full time, it meant showing up and seeing what I could handle. I went for a couple of days, but my headache would go from bad to worse. Each day my headache increased from the normal throbbing to the splitting “I need to lie down” category. Going to school was just too much – the noise, the lights, the questions, the incomprehensible material. It was overwhelming! Not only did I have to deal with the stress of sitting in classes and not understanding any of the material, I also received minimal support from my classmates. When my friends saw that I was back at school looking “normal”, they assumed that I was 100% better. Many of them asked, “how are you still concussed?” or questioned my dedication to the water polo team by asking “are you even still a part of the team?” I was not prepared to face these social hurdles and all the hurtful questions. After finding out that I didn’t have to complete my final exams that year, I was so relieved. But when my friends heard, there was a chorus of “omg you’re so lucky” or “ugh, I wish I could be concussed!” They just didn’t understand. Students recovering from a concussion need to be supported, not challenged or ostracized. After some discussion with the school, I was given final grades based on my year-to-date strong academic performance and told to focus on my recovery. Unfortunately, this relief was short lived as the severity of my concussion started to become more apparent.

My summer was comprised of more than 100 medical and non-medical appointments. No, that is not a typo! While the medical profession has come a long way on many injuries, diagnosing and treating concussions is still in its infancy. From the doctors, therapists, acupuncturist, psychologist, we tried everything. Sometimes, I felt pain relief, but typically it was just temporary. Many times, the treatment made my headache worse! I had to re-learn the basics. My balance was off, my hand-eye coordination was severely diminished, and my mind wasn’t able to find the right words or I would mix words up in my head. My cognitive therapist originally assessed me at a 3rd grade level. Think about that – I was a 16-year-old girl about to go into her junior year with the cognitive abilities of an 8-year-old. Although this was one of the hardest things I have ever heard, it was a catalyst that made me want to work harder to get back to my old self.

My 16th birthday was six weeks after my injury, but I didn’t feel much like celebrating. My headache was still constant. The noise, music, and chatting all amplified my pain. Even though I didn’t want a party, my parents insisted that I needed something to get my spirits up. I hadn’t seen any of my friends outside of school for six weeks, yet there was little curiosity about my health. Most of what we talked about was prom. I’m not saying that I needed that night to be all about me, but my friends showing a little more compassion would have helped. On my actual birthday, a girl from my math class, someone who I would call an acquaintance, texted me happy birthday and said, “I hope you feel better soon! Math class isn’t the same without you!” That little text message meant the world to me as it showed that someone cared. Just because my best friends didn’t care, doesn’t mean that other people didn’t. A note to friends of people dealing with a concussion: a small message showing you care means the world.

My life before April 14th was normal, as can be for a teenager. I enjoyed school and participated in many after-school activities, which included being on the varsity swimming and water polo teams. In fact, while I wasn’t the best player on the water polo team, I was chosen as a co-captain for the varsity team as a sophomore. Most of the girls that swam also played water polo, so we were all super close, or so I thought. Only one of the 20 girls on my team eventually reached out to me. My best friend of 12 years did not call or text for two whole months after she found out I got a concussion. I had a little bit of an easier time understanding why my friends at school didn’t reach out to me, but I was so hurt and baffled by the lack of care from someone who I considered my best friend. Looking back, I realize that the physical limitations from a concussion are difficult but they are emotionally compounded if you don’t have support from your friends. I guess it’s true when they say you really find out who your true friends are in times of need.

Before the start of junior year, I had a few meetings with some faculty and collectively concluded that I should drop my elective that year: AP Chemistry. I was so excited to take that class and challenge myself, but I was held back by my cognitive capabilities. This wasn’t ideal and added to the anxiety of my recovery. On my first day of classes, I spoke to all my teachers to explain my situation, as I wasn’t able to complete my summer assignments. Other students heard me telling teachers that I was still concussed, and they once again questioned me, “Simran, are you sure you still have a concussion?”, “How is it possible that you are still concussed?”, or “You have to be better by now. When I had a concussion, I was better in a week!” When I got home that day from school, I broke down, and began to question myself: did I really have a concussion for 5 months? Had I gotten so used to the constant headache that I didn’t even have a headache anymore? That was one of the hardest days of my recovery. However, I remember my parents offering great advice: you have to try your best to stay positive and only focus on what you can control. From that point onward, I decided that I would do everything in my power to get through this important year. This was the first year that I used extra time on tests, had a diminished homework load, and used Learning Resources at my school. Because I had all new teachers, I had to prove to them that I was willing to work hard and do my best even with my limitations. For the first two months of junior year, I wasn’t able to attend full days, as my headaches would be limiting part way through the day depending on the workload. I had a constant headache from April to October, six whole months, 175 days. At that point, the pain started to ease.

Throughout my various treatments, I pushed myself to stay positive. After a while my sunglasses came off, I could walk around without my hoodie, and was able to sit on the main floor of my house without exacerbating my symptoms. The lights didn’t bother me and nor did the sound of TV or music. As I went from appointment to appointment for pain relief and therapy, I started to notice progress there too. My balance was coming back, I could find the words in the word search without any help. In late 2016, I finally got an appointment with a well-known concussion doctor in Chicago: Dr. Labella. She knew concussions, she had an integrated plan for assessments, and a variety of treatments in case one didn’t work. One treatment she suggested was sub-occipital nerve block injections. These were injections in the back of my head attempting to numb the nerve that amplified my pain. The irony is that the most painful option was the only one that worked for me. For the first time in months, I was pain free!

I have learned so much about myself through this recovery. I have grown as a person and am so much stronger and more mature than I was before. There were days when I moped around the house, crying and my frustration would eat away at me. Why did this happen? What did I ever do to deserve this? Honestly, no one has the answers to these questions. What I do believe is that everything happens for a reason. This setback has taught me patience, dedication, perseverance, and the power of positive thinking. I knew I would get better, it was only a question of how long will it take. I now have the confidence to face any future adversity head-on and know that I can be successful. I recently finished my junior year and am happy to report that I received really good grades. As a wise man told me, it’s not how you start the race, Simran, it’s how you finish that counts. I believe I finished strong.

Posted: April 19, 2017

Talia Burstein, a junior at Emory University, is a human health major who aspires to attend medical school. As president of Emory’s Bioethics Society and a diehard Patriots fan, Talia takes great interest in the treatment and recognition of concussion-related syndromes and diseases. Talia interviewed high school student Lily Winton for the Concussion Legacy Foundation in order to better understand how patients manage Post-Concussion Syndrome (PCS).

During the summer going into her junior year, Lily Winton worked as a Counselor-in-Training (CIT) at the sleep-away camp she had attended since she was a child. During the second half of her summer, Lily started to experience headaches. Unable to figure out the source of her headaches, Lily attributed them to heat and dehydration. She slept more than usual and ignored them the best that she could. At the end of summer, despite the increasing number of headaches, sudden irritability, and some new neck and ear pain, Lily continued to train for tennis and prepare for the start of her junior year of High School. She knew the year would be full of hard schoolwork, tennis training, USTA competitions, college tours, and friendships. Lily visited her pediatrician to try to uncover the cause of her headaches. Did she have mono? Maybe Lyme disease? A cardiovascular issue? Her doctor ran many tests, but everything came back normal.

Once school began, Lily began to experience constant, more severe headaches, ringing in her ears, increased neck pain, and short-term memory struggles. When she tried to read, a whirlwind of dizziness and fogginess came over her. Lily just wasn’t acting or feeling like herself. She returned to her doctor to undergo additional testing but to no avail; none of the tests revealed anything abnormal. Despite the lack of diagnosis, which caused grave concern to Lily and her family, the pain of the headaches, and the inability to read with ease, Lily was determined to continue on with her junior year.

In mid-September, Lily forced herself out of the darkness of her bedroom to go on a college tour with her parents. While walking on the sidewalk of a busy Boston street, Lily began to stagger, nearly stumbling off the curb of the sidewalk into a moving car. Her mother quickly snatched her by the collar of her sweater to pull her back to safety. When Lily’s mom looked into her eyes, she knew instantly that something was very wrong. She asked Lily if she had hit her head and at first Lily said no but when Lily’s mom probed her to really think hard, Lily responded with “yes.”

Two months after the incident, the details of a tubing accident she had been in with a camp friend finally began to come back to her. Lily’s mom was able to phone the camp friend and find out the details of the accident.

When Lily was at her summer camp, she and a fellow CIT were tubing (pulled on a raft tethered to a speedboat). The boat driver revved up the engine to approximately 50 mph and took them on a wild ride, where they were whipped around and eventually thrown off the tube and into the water.

“For those of you who have never been whipped off a tube, when you hit the water it feels like hitting a brick,” Lily recalls. Typically, you fly off the tube onto your side but when Lily was thrown off she entered the water headfirst. Colliding headfirst with the lake caused Lily to black out immediately. When she finally came to and was pulled on to the boat, she was holding her head in pain. The boat driver quickly drove the boat back to shore where Lily walked herself back to her cabin and went to sleep. When Lily woke up the next morning, she had no memory of the events of the previous day.

“It was like all of a sudden, all the pieces of the puzzle made sense,” June Ferestien, Lily’s mom, explained.

The puzzle

Every puzzle has multiple pieces and this one was no different. In middle school, Lily was a superstar soccer and basketball player. At the end of 7^th grade, she got a concussion. Lily was out of school for a few weeks and was slowly cleared to return to her athletic training once all her concussion symptoms were gone.

On the soccer field five months later, in October of 8^th grade, Lily received her second concussion. This time, the concussion was a little bit worse. Lily suffered from worse headaches and nausea, which put her out of school for a month. While she did eventually return to all of her sports and activities, she noticed that headaches would linger slightly longer than usual.

After this second concussion, Lily’s parents decided she had to stop playing contact sports as a third concussion could make things terribly worse.

Lily, a natural born athlete, knew she had to reinvent herself. Looking for a non-contact sport, she took up tennis and grew to become a top player in Massachusetts. She played #2 singles varsity for her large public high school, where she was named Boston Globe All-Scholastic for the Bay State League. Lily had also earned a top 100 USTA ranking in New England.

When Lily went off to camp that summer before her junior year, she had figured out what it took to avoid any more concussions. She avoided soccer, lacrosse, basketball…even diving.

She didn’t know that soft water could hit so hard or that a fun afternoon of tubing could leave her with a hit so severe that she would have no memory of receiving it. So, when doctor after doctor asked probing questions, she had nothing new to reveal about what had happened.

Only when her memory of that summer day began to come back to her months later could she provide the doctors with the missing piece of the puzzle, the forgotten hit to her head. Now, with this new information, Lily finally had a diagnosis for her symptoms: a third concussion causing severe post-concussive syndrome (PCS). Post-concussive syndrome consists of multiple debilitating symptoms that persist long after typical concussion symptoms subside.

The circuitous road to recovery

Discovering a diagnosis was only a small sliver of the battle Lily had yet to face. By this point, she was a month into her junior year. She knew a typical third concussion would have her out for a few months so she took a short term medical leave for the rest of the fall semester and planned to return, good as new, in the winter.

The plan sounded great. Lily would still be able to graduate on time with her friends, return to playing tennis in the spring, and continue with her college search. Unfortunately, Lily’s case of post-concussive syndrome was far from typical. In fact, there is no “typical’ when it comes to concussions and post-concussive syndrome.

Lily’s time off of school was filled with a long and slow recovery. “For months I didn’t get out of bed. I lived with a chronic migraine. I couldn’t walk by myself. I couldn’t go up the stairs. No lights! I couldn’t have a normal conversation with people. I didn’t have my normal feelings and emotions. I suffered from really bad post-concussive syndrome,” Lily recalls. Her journey to recovery was an uphill battle; she got worse before she got better.

Lily frequented the emergency room with horrific pounding headaches that she described as a 12 out of 10 on the 0-10 pain scale. In the emergency room, and during a 4-day hospital stay, she received neck injections that helped ease the pain. In total, Lily had over 80 pain injections in her forehead, neck, and upper back. A normal neck is curved. Lily’s was stick straight. She described, “It looked like there was a metal rod going through it.” The doctors discovered that she had suffered severe whiplash.

While the injections helped relieve some of Lily’s acute pain, which allowed her to be released from the hospital, her overall pain was still unbearable. No medicine would work to treat the more than 30 symptoms she had been experiencing.

For her inability to sleep, she tried melatonin. No luck. When she could bear the light and tried to read, her right eye, which corresponds with the side of her head she hit, would not converge in the same way as her left eye. This made it impossible to read without blurriness and dizziness. She also suffered from saccadic eye movement, which prevented her eyes from tracking fluidly from left to right when she would read, so she could not properly comprehend what she was reading. It felt like her eyes were jumping. For these eye muscle injuries, she underwent ocular therapy. She had to retrain her eyes to function together. She used a line guide to help her eyes focus on one word at a time. Everywhere she looked was blurry so Lily received glasses, something she never would have needed before her concussion. The mixture of the blurred letters along with entire words jumping around made her lightheaded and nauseous. So nauseous that she did not have an appetite for even her favorite meals.

Social

As part of Lily’s recovery, doctors recommended that she slowly re-enter school in strictly a social context to try and re-assimilate her nervous system back into bright lights and constant noise. This meant attending lunch or an after-school activity, such as a basketball game. The timing of her appearances to school was confusing to friends and classmates, as they did not understand why Lily was healthy enough to socialize, but not healthy enough to come back to class. Lily tirelessly tried to explain the difference between a typical concussion and the ever more devastating post-concussion syndrome she was experiencing. Although Lily tried to slowly re-enter school in the winter for social purposes, she was still in so much pain that she decided it was best to remain out of school to focus solely on her recovery.

Life in the low-risk lane

“People don’t understand that each person is unique and each brain is unique and recovers in a different way,” Lily’s mother explained. Most teenage girls who suffer concussions slowly continue to get better. However, there are a small percentage of girls who get worse before they get better. Even when accounting for genetic make-up, location of concussion, manner of injury, number of prior concussions, and environment, there is no simple answer as to why one person’s symptoms are drastically different from those of someone else suffering a similar concussion. Lily’s biggest issue was that her third concussion was not reported so it went untreated as she continued with her summer camp experience and vigorous exercise for months after the incident.

When January came and the spring semester began, Lily realized she was not recovered enough to attend school so she continued her medical leave until the end of junior year. This was a hard decision for her, as it meant not graduating on time with the grade she had been with since elementary school. “I’ve already had to reinvent myself so many times. What’s one more time?” Lily jokes as she prepares to enter her junior year.

Reflecting on the struggles of daily life after three concussions, Lily adds, “I now live my life in fear of getting hit. When people picture concussions, they imagine a sports injury, but concussions can happen so easily in everyday life. You have to have more body awareness. It’s frustrating because there are so many things, even outside of sports, that I don’t do because I can’t put my head at risk.”

Today, Lily is back in school and thriving. Her reading and comprehension skills are fully recovered, her balance has improved, she is returning to her former physically fit self, and she has rejoined all of the social activities with friends that she enjoys. While she could not have recovered without the support of her parents and help of numerous doctors and therapists, she also credits her patience, perseverance and resiliency, traits she learned playing sports, in enabling her to make a well-earned recovery.

Posted: December, 7 2015

On June 4^th, 2010, I had a terrible waterskiing accident. A ski struck the area above my right eye and caused a severe concussion/TBI. At that point I had no clue how severely the injury was going to impact my life. My life pre-brain injury involved playing sports, succeeding at school, and travelling the world. I won athlete of the year in grades nine and 10, various MVP awards on sports teams, and in my last year of high school, I was granted the highest honor of “Top Graduating Athlete.” Beyond academics, I was on a Provincial Level soccer team.  We won the Provincial Championship three times and the National Championship once, and also placed second at the U.S.A. Cup, which included teams from Europe and Japan. After two ankle surgeries, I could no longer compete in soccer and changed to Track & Field. I was then recruited to compete on the varsity Track and Field team at the local university. Sports were always an integral part of my identity and life.

Everything changed after my last concussion.  I have had concussions before, but nothing as serious as the most recent one.  I was always able to “shake it off” and resume my normal activities. Sometimes I would take a couple of days off of school and the headaches, blurred vision, irritability and fatigue would ease up. With medical clearance, I would return to the field. However, this time was different. It took longer to get cleared to resume activities. When I returned to school I could not concentrate at all. My usual zest for learning was not there, so I went back to the doctor. I was told school and sports were not options at that moment. One might think I would have been happy to not attend school, but I lapsed into a severe depression at the mere thought of it.

Currently I have headaches. They are horrible, stop you in your tracks, lay down and shut out the world headaches.  I have little control over when they happen or when they will end. My balance is off, and I get dizzy and nauseated.  I can’t go places because lights make me sick.  My mood abruptly swings from calm to agitated, often for reasons that only make sense to me. New things stand out and impact my life that didn’t used to before my injury.  I cry more than I did before. I worry and stress about everything.

I tire easily.  It doesn’t make sense to other people that I have to lie down during the day. Crowds and noise are bothersome. I try to deal with the noise because I don’t want to annoy people and constantly ask them to be quieter. I can be forgetful, a problem compounded by the difficulty in explaining my condition to others. I struggle immensely with reading comprehension.

The hurdles I face post-injury have led me to develop strategies to be successful. One such strategy includes impeccable organization so I don’t forget to complete assignments for school, or to study for exams. Limiting time in front of screens – the computer, television, phone or tablet – is helpful too.

The symptoms from my injury have adversely affected my personal relationships and employability. I can only work for a couple of hours at a time because I get too tired and need more breaks than everyone else. It has been difficult to accept that I am not like a normal person my age who can go out with friends for dinner, to a bar, or shopping.

When I had my injury, post-concussion syndrome was only supposed to last between one and six months. But nine months afterwards, I was still dealing with all of the symptoms every day. I am grateful that NHL star Sydney Crosby spoke up about post-concussion syndrome, and that he was strong enough to sit out and heal. Once the doctors saw this, and that post-concussion syndrome is real, I felt my condition was taken much more seriously.

Going from a happy-go-lucky teenager to a young adult living with a TBI and its symptoms is something that I’ve had to accept. It has changed me as a person.

Two years after my injury, I had the privilege of speaking at a conference that put me on a path to share my story with hundreds of physicians, healthcare providers and other TBI survivors. Since then, I have attended other conferences, galas, and been published in the book “Concussed” by Keith Primeau and Kerry Goulet.  I have met the most incredible people since 2010 that have supported me throughout this journey. Many thanks to the Parkwood Hospital Brain Injury Program, Fowler Kennedy, The Concussion Legacy Foundation, Dr. Robert Stern and Dr. Robert Cantu in Boston, and Stop Concussions.

‘Ringing your bell’ is not something to take lightly. Shaking it off and getting back in the game is not brave. Real bravery is recovering properly, dealing with the symptoms, and possibly enduring criticism from coaches, teammates, friends and the media. Health is a fragile thing; don’t take it for granted, because it can change in a matter of seconds.

Completing my undergraduate degree in 2014, attending Chiropractic College in Georgia with a high GPA, reducing my pain medication, and being able to do some physical activities again are just a few things that I never thought I’d achieve! The most important thing I have learned from this journey has been to never judge someone. A quote I live my everyday life by is “be kind to one another,” by Ellen DeGeneres. You do not know what someone is going through behind the face they put on every day, you do not know their struggles or their story.  I am so proud of how far I have come since June 4th, 2010!

Thank you to everyone who has supported and continues to support me through this day-by-day journey; I wouldn’t be where I am today without you all.

Posted: November 23, 2016 | Written winter of 2015-16 during Esther’s medical leave

I cannot quantify the number of excruciatingly insensitive things that people have said to me about concussion and Post-Concussion Syndrome (PCS). I am continuously disappointed with the lack of knowledge and education. Even close friends have said shocking things.

One good friend asked me why I was wearing a soccer jacket when I didn’t play soccer. I didn’t even know how to respond since I had spent so many hours working hard for that team and to be a better soccer player.

A medical professional at a school told me to go get tested for Lyme disease, anemia, and Mono because it seemed unlikely that I could have concussion symptoms for so long. My concussion doctor laughed, and then politely assured me that it was still post-concussion syndrome. Being told that you don’t have PCS and that you have Mono (basically that you’re lying) is offensive.

On a day when I left school early with a splitting headache and had to miss a class, I told a friend why I was leaving early: that I needed to go home and take a nap because of the headache. Her response wasn’t ‘I’m sorry your head is killing you. Feel better!’ but rather ‘oh my god you’re so lucky!’ because I got to leave school to take a nap.  This also miffed me—did she not hear the part about the splitting headache?

Unfortunately I hear that I’m ‘lucky’ very frequently. Using that word to describe my situation seems astonishing. I am told that I am lucky that I don’t have to play a sport at school, but people forget that I loved playing soccer and hockey and would do anything to play again. I am told that I am lucky to have “free time” in place of sports. All of that ‘free time’ is spent going to concussion appointments and taking naps since I can’t physically do homework immediately when I get home from school without a rest. I am told that I am lucky to have extended time for testing when I would give anything to complete assignments and tests in the allotted time. Luck is not a word that I would use to describe 1,305 days of headaches, nausea, fatigue, dizziness, vision and hearing issues, and sensitivity to light and noise, combined with the loss of sports. I’ve celebrated three birthdays and three Christmases with headaches. All of that adds up.

I rarely know how to respond to such ignorant and insensitive statements. They usually catch me by surprise. I think especially with friends, it is important to say something. They’re your friends, the people whom you trust with secrets and want to be with. You deserve better than to hear those things and they deserve to know the truth about what is going on with you.

There is a lot of misinterpretation of the word ‘concussion.’ People hear it and think of a short-term injury that isn’t very severe. In my case, concussion and PCS have invaded almost every aspect of my normal life.

There have been so many times where I wish I had said something when someone said something insensitive. I often find it hard to come up with something reasonable to say. Speak up because even if you have already been offended, you might educate that person and prevent them from saying something like that to the next person.

One of the nicest things that anyone has said to me during my struggles with post-concussion syndrome came from a boy in my grade, a friend of a friend. He asked me why I wasn’t playing soccer and I told him that I had had a serious concussion and couldn’t play contact sports anymore. He said, “Oh my God, I am so sorry. I can’t imagine what it would be like if something happened and I couldn’t play baseball anymore.” Baseball was his favorite sport and it meant so much to me for him to project what had happened to me into his own life and think about how much it would affect him. A moment of empathy goes a long way.

I’ve been surprised by how much a nice comment means. If people say nice things it’s usually adults that say I’m strong and that I have handled this gracefully.

It’s nice to hear that I’m coping with the situation, but it’s sometimes better to hear someone tell you that it sucks or for someone to be able to see how it would affect his or her life. I often don’t want to hear that I’m strong because I’m not always. I don’t want to hear that ‘it’s ok’ because it’s not. And please don’t tell me again what a great college essay I’ll have, because honestly I would like to write about something else!

Posted: July 7, 2016 | Written winter of 2015-16 during Esther’s medical leave

Below are things that you can do to help whether or not you have had experiences with concussion and/or Post-Concussion Syndrome (PCS). Unfortunately, concussion and PCS are not talked about enough—you can help to keep conversations going.

Educate yourself. There are tons of ways to do this.

• Check out the Concussion Legacy Foundation’s website which has great information as well as inspiring stories.
• Read.  Start with:
  • Head Games by Chris Nowinski.
  • League of Denial by Mark Fainaru-Wada and Steve Fainaru.
  • Concussions and Our Kids by Robert Cantu, M.D. and Mark Hyman.
  • Conquering Concussion by Mary Lee Esty and C.M. Shifflett.

Educate others.

• Share information with your friends and family—the more people who know, the closer we are to making this less of a problem.
• If you hear someone say something ignorant about concussions, correct them.  Educate them and let them know that their thinking is wrong and potentially very dangerous.

Don’t be a silent bystander.

• If you think that you or a teammate has a potential concussion, SPEAK UP. The person who says that they are worried that they or a teammate might have a concussion and should be checked out is far braver than the person who pushes through, putting him or herself or a teammate at immense risk.
• Remember, your teammate who just received a head injury is not the best person to make the logical decision.
• If you hear anyone with a concussion being accused of being a malingerer or faking his or her symptoms, step in. This should not happen, and the kid being accused likely feels very unsure, uncomfortable, or self-doubting and doesn’t know how to explain PCS or concussion to the accusers.

“Experts” aren’t always right.

• It’s been widely reported that some team doctors have provided misinformation.
• Coaches may put a concussed kid back in the game out of ignorance or desire to win.
• I have had an athletic trainer tell me in front of teammates that I did not have a concussion when I was suffering with PCS with which I was diagnosed by Boston Children’s Hospital.

Be sensitive and supportive.

• If you know anyone suffering with concussion symptoms, say something. This person likely feels isolated and alone and probably doesn’t get a lot of support from their peers. Just say that you know how difficult it must be, that they are doing so well coping/carrying on, or that if they need anything they can talk to you.
• Think about how it would affect you—what if you couldn’t play your favorite sport anymore? What if you suffered with chronic pain every day and were expected to perform in school as well as everyone else?

Ask. Reach out. You will be amazed at how meaningful a simple “how are you” text can be!

Posted: September, 2017

In March, I went on a two-week school service trip to Rwanda. I felt so much better symptom-wise, and I wanted to challenge myself. It was extremely hot, very sunny, and we had long days with intense physical service work. We spent a few days in Kigali before a daylong safari and ended with a long stay at Agahozo Shalom Youth Village, a boarding school for Rwanda’s most vulnerable youth. Two years ago, I don’t think I would have been able to go on such a strenuous trip.  This year I had an amazing time there and participated to the fullest. I took a 10 mile hike at midday where we were swarmed by kids from the local villages who walked with us and whom we taught the ABCs, I enjoyed long bus rides, and I formed amazing friendships with students I met in Rwanda and with my peers with whom I travelled. Taking that trip made me feel very confident that all the worst of my symptoms were gone and reassured me that my road to recovery was near complete — I want to tell you that yours is, or will be, too.

If you’ve read my previous blogs, and experienced them yourself, you know how rough concussion and PCS can be. I wanted to deliver you an update. I was out of school for the 2015-2016 academic year with some tough symptoms. Now, having had a great junior year, heading into my senior year, and looking forward to college, I can assure you that you can get so much better. It may not happen overnight, but looking back at my medical leave year and the blogs I wrote then, things have changed so much.

Through the Concussion Legacy Foundation and my website, Headstrong, I want to keep telling you my stories, the good and the bad. I think it’s important to keep in mind where you’ve been and how far you’ve come in your recovery, wherever you are, but I also don’t want you to feel that PCS is going to be forever.

It’s important to remember that thoughtful changes can make a world of difference: harnessing little memory tricks, opting for dinners with friends rather than parties with loud music, remembering your sunglasses. And having friends who understand makes a world of difference.

Now, I feel that the worst is far behind me, and that I am able to successfully manage a few residual symptoms. I am capable of anything academically and professionally; I’ve handled myself at a tough private school, and I undertook an intense internship this summer. At this point, other than contact sports, there isn’t really anything that I cannot do.

So if you feel that you’re in for the long haul, the load gets a little lighter each week, and at some point, you’ll barely notice the burden.

Posted: January 22, 2019

CLF Ambassador and former intern Esther Lovett is a normal college student who carries something unique in her wallet – a brain donor card. Esther’s struggles with Post-Concussion Syndrome (PCS) and the subsequent search for answers has led her to dedicate much of her time to raising awareness about concussions and sharing insights with other PCS survivors. She was invited to speak at a TEDx event where she discussed her personal journey with PCS, culminating in her pledge to donate her brain to the VA-BU-CLF Brain Bank in 2017. Watch the video below and help us continue to shine the light on PCS.