Stories Archive - Page 12 of 16 - Concussion Legacy Foundation

Former Pro Surfer Mercedes Maidana’s New Mission

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.

This Wasn’t The Plan: Simran Kohli’s Story

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.

Daily Goals as we Fight CTE: Diet and Exercise

Click here to donate to The Mike Adamle Project: Rise Above and help support families living with suspected CTE.

Posted: March 2, 2018

Through The Mike Adamle Project: Rise Above, my husband Mike and I are on a quest to learn how best to live with CTE. Part of that process is discovering how to create the healthiest possible lifestyle for Mike when it comes to diet, exercise, and cognitive stimulation. Here’s what we have learned:

Exercise

Mike has always been most at home in athletics – in motion. Movement is like meditation for him. We knew exercise was important for health overall, but were there exercises that were found to be helpful for brain functioning? We discovered exercise increases oxygen to the brain, promotes neurogenesis (new brain growth), produces the release of “feel good” brain chemicals (like serotonin, endorphins, and dopamine), and reduces stress. All of these benefits also fight off the depression and paranoia that CTE causes.

While you should create your exercise plan in coordination with your physician and take into account what is appropriate considering your health and injury history, Mike and I discovered research linking the following physical activities with brain health, and Mike found they were FUN!

Biking – biking has all of the benefits you might expect, like cardio-vascular and strength/muscle improvements. Recent studies, however, have demonstrated improved movement for people with Parkinson’s. Brain imaging demonstrated improved connections in parts of the brain associated with Parkinson’s. Biking not only improved movement and cognition, but also proved to be more effective than drug treatments, according to this 2013 study.

Cardio Boxing – NO, we are not advocating punches to the head! But boxing is about so much more than punching: the patterns of jabs, punches, and undercuts includes thinking and memory skills used in coordination with body movement. When reacting to a partner, your brain is also working to read cues and react defensively as well as spontaneously planning your next moves. A boxing workout without head contact packs a one-two-punch of physical and cognitive exercise!

Ballroom Dancing – rumba, anyone? Believe it or not, ballroom dancing is one of the best activities for brain health as well as for overall longevity. Why? Ballroom dancing incorporates multiple facets shown to benefit our brains, bodies, and mental health. First, dancing is a workout – great cardio benefits, isometric muscle conditioning, and increased flexibility. Secondly, your brain is actively working by remembering dance patterns, body placement and positions. Your brain is also responding to your dance partner – whether you are leading or following. And speaking of dance partners, dancing is a social activity – the third facet that contributes to brain and social/emotional health. In ballroom, you are face-to-face and touching – powerful medicine for the brain. And lastly, dancing always involves music. Music is a potent therapy that evokes memory, improves mood, and triggers brain stimulation on multiple levels. Who knew you could waltz your way to wellness? (PS – Mike adds ballroom dancing is like a “get out of jail free card” with your wife!)

Diet and nutrition

Healthy diets are well-documented as a necessity for optimal functioning, well-being, and longevity – but there are so many different types of “diets”, it can be overwhelming to know which to follow and how to start. “Diet” conjures up spats of quick weight loss hacks and trends that come and go out of style but never really work in the long run, so paramount to us was eating in a way that was not only healthy, but also sustainable. And it had to be enjoyable and great tasting.

Our research showed that most disease, including brain degeneration, involves inflammation, so we concentrated on foods and a way of eating that reduced inflammation. A good brain diet is one that is anti-inflammatory and low glycemic, with lean protein, lots of antioxidants, and good fats that are high in omega-3 and 6. Sugar is a primary cause of inflammation and so we keep sugar intake to a minimum. Simple carbohydrates from things like white bread, white rice, packaged cookies and crackers, most processed foods, and alcoholic drinks metabolize into sugar when digested, so we try to avoid these types of food, as well.

Books have been written describing this way of eating (we’ve found The Perricone Prescription, by Nicholas Perricone, M.D., to be a good guide and many of the recommendations here are from his plan), but here is a snapshot of a healthy brain diet:

Basic eating plan

Eight to ten glasses of water
Three meals, evenly spaced throughout the day
Two snacks, spaced between meals
Each meal and snack should contain a source of protein (our bodies cannot store protein, so we need to provide it regularly), good carbohydrates, and fats in the form of omega-3 and omega-6 essential fatty acids
Choose fresh or frozen foods whenever possible

Antioxidant best bets

Avocado
Bell peppers
Berries – blueberries, strawberries, blackberries
Cantaloupe and honeydew melons
Dark green leafy vegetables – spinach and kale
Broccoli
Orange-colored squash
Salmon
Tomatoes

Optimal protein sources

Chicken breast
Turkey breast
Seafood – wild salmon (not farm raised), cod, halibut, sardines
Egg whites
Natural peanut butter without added sugar or salt

Other foods to enjoy

Nuts – almonds, walnuts, pistachios, hazelnuts, pecans
Beans – black, kidney, lima
Quinoa
Lentils
Olive oil – and lots of it
Coffee – a cup or two in the morning, minus all the sweeteners
Cocoa – yes! Dark chocolate is chockfull of antioxidants
Whole wheat or oatnut bread
Oatmeal – steel-cut or old-fashioned oats, not the instant kind
Tea – black or green
Spices – turmeric, ginger, garlic
Apples – green apples are lowest on the glycemic scale
Lemons – provide vitamin C and bioflavonoids; squeeze in water or on steamed veggies and fish
Cottage cheese
Greek yogurt – avoid varieties with added sugar

Foods to avoid

White bread
Cake
Cookies
Sugar-laden cereals
Doughnuts
White bagels
Instant rice
Puddings
Sodas

Vitamins and supplements

Although eating a wide range of healthy, fresh, and chemical-free food may provide all the nutrients we need, Mike and I choose supplements to ensure that we are providing our minds and bodies with all the nutrients needed; and when fighting a neurodegenerative deterioration, it’s essential to flood our systems with powerful fuel.

Learning from the experts

The exercise and diet plan Mike and I have incorporated into our daily lives is based on the latest research showing how best to promote brain health. I encourage you to stay up to date and sign up for CLF’s CTE Resources newsletter for access to what the world’s leading researchers on CTE are saying. One of those researchers is Dr. Robert Stern, director of clinical research at the Boston University CTE Center. Hear what Dr. Stern suggests when it comes to diet, exercise, and social engagement that will promote brain health:

Click here to make a donation in support of The Mike Adamle Project: Rise Above.

The Mike Adamle Project: Rise Above

Click here to donate to The Mike Adamle Project: Rise Above and help support families living with suspected CTE.

Posted: March 1, 2018

Why we’re here: from Kim Adamle, executive director of The Mike Adamle Project: Rise Above

“If I have this, then I want to be the one to show others how to LIVE with it” were the first words from Mike when his neurologist told him his epilepsy and cognitive degeneration were probably due to Chronic Traumatic Encephalopathy (CTE). The doctor did not have much advice to share with us on how to cope with CTE – the most he could advise was 1,000mcg of B12 daily, a healthy balance of omega-3 and omega-6 fats, and to work as long as possible – to keep learning and stay active.

There is no cure yet for CTE, so our quest became: How do you live with CTE? How do you stay alive and experience a life of quality? Mike has always lived his life 110% all heart and all-out, so we approached this challenge with the same vigor. Through many heart-wrenching, tearful, gut-honest conversations, Mike distilled the essence of his goals for his life fighting CTE: to live with Dignity, Optimism, Energy and Excitement, Contribution and Purpose, and most of all – to give Hope to others.

Awareness of CTE is just emerging, and doctors and researchers are working to discover treatments. But for the many who are affected right now, we need to share our journeys, our experience, and offer support to one another. We do not have the time or luxury of waiting; we need to take action now for the sake of those afflicted with CTE and traumatic brain injury (TBI), and for their families and spouses, who are often the care partners.

CTE/TBI is pervasive, so we knew our life plan had to be comprehensive and multi-faceted. We targeted these primary life areas:

Medical
Nutrition
Exercise
Learning and Cognition
Social and Community
Spiritual

From these areas we started drawing big concept maps, asking what resources we already had – who were our “teams”? You know the saying, “it takes a village”? Dealing with CTE requires teams – many, many teams. Drawing up our teams in each of the above areas helped us organize and identify people, resources, and activities to support Mike’s functioning.

After establishing our support teams, we researched what to do. Did you know our brains continue to grow connections throughout our lives? Our goal was to do all we could to promote overall brain health as well as try to support neurogenesis (the scientific term for new brain cell growth) to offset the brain deterioration from CTE. We don’t know if we can stop or slow the brain degeneration yet, but we can do things to improve the functioning of the brain we have and strengthen the trillions of connections between our brain cells. Because we were determined to live our best life for as long as we could, we knew that various therapies once or twice a week would not be enough: Mike’s therapies had to be constant and consistent, so we incorporated everything we learned into our daily routines. Activities promoting brain health became our lifestyle, and every activity became an opportunity for growth.

This journey is improved by a strong support team. Those “care partner(s)”, whether they be a spouse, children, or other family or friends, necessitates a strong commitment and healthy working relationship.

The content you read from Mike and me as part of Rise Above is designed to give you the inside scoop on how we have approached our life since that moment Mike was diagnosed with probable CTE. We have heard from many families going through experiences all too similar to ours. We want to give you tools, resources, a supportive community, and hope. As you read and watch all that Project Rise has to offer, also incorporate the expert information and strategies from CLF’s CTE Resources pages so that your resources toolbox is as full as it could possibly be. We’re here for you, and we will get through this together.

If you have questions for me or Mike, email [email protected].

Click here to make a donation in support of The Mike Adamle Project: Rise Above.

CLF Champion Spotlight: Kaila Parker

Posted: May 31, 2017

We’re grateful to Kaila for being one of our most active Champions and for supporting our Chicago branch of the Team Up Against Concussions education program, which teaches elementary-aged kids what a concussion is, and why they should care about it.

Can you tell us a bit about yourself and how you became a CLF Champion?

I’m originally from Cleveland and I went to undergrad at DePaul University, which is a partner with the Concussion Legacy Foundation. There was a group on campus that took a bunch of us from the science department (I majored in Biology) to help run Team Up, and that’s how I got introduced to the Foundation. We went to different schools and gave a concussion presentation to kids in grades 4-12. It was just a great experience. I got to meet Chris Nowinski which was really cool, and I got insight into the whole organization and saw the forefront of it all. It made me continue to want to get involved with this organization so when I moved back to Cleveland after college I became a Champion for you guys and did phone calls for the telephone database welcoming new Champions.

I started a research job last year but I’m still involved and doing as much volunteering as possible. It is such an awesome organization and you meet amazing people.

Your father Cardell Parker played in the NFL. Did that affect your decision to volunteer for the Concussion Legacy Foundation?

My dad played for the Detroit Lions in the 70’s. He was about to be traded to the Cleveland Browns, but tore both of his ACL’s in the same game. It was a career-ending game for him, but I think it was a blessing in disguise. My dad is a pretty big driving factor in why I connected so well with CLF. He’s an awesome guy and an even better father, but he has a lot of cognitive issues from dedicating the larger portion of his life to football. He’s taken this, though, and put it to good use as a little league football coach. He’s the coach who really stresses having fun and being safe over winning. Being a part of CLF has helped me further connect with him in advocating for an important issue and recognizing the need for something to change.

What is the most rewarding part about being a Champion for the Foundation?

The most rewarding thing for me is getting to know the normal people who might have an everyday experience where they become affected by head trauma. Being able to listen to people’s stories and let them know that I understand them and that this organization is there for them was really rewarding. Especially listening to people flip a switch and realize how serious this is and why it’s important to be aware and help spread the word to other people that this is just not a bump on the head…it’s a concussion. It felt great hearing how awesome and thrilled people became saying, ‘yeah I can totally relate and want to help!’

Being a Champion was a great experience because you never really know how many people are affected by concussions and traumatic brain injuries, even outside of sports. There was a surprising amount of moms and dads who were setting up a swing set for their kids and the swing set would fall on their head and give them a concussion and they wouldn’t really know the repercussions of it. There were also a lot of people who were just very interested in getting involved with the organization. It was nice to touch base with everyday people who were so interested.

Which of the Foundation’s events or campaigns is most meaningful to you?

I would say Team Up Against Concussions is the most meaningful to me. I loved listening to people’s stories, but I think impacting the younger generation is what really hit home with me. I love kids (I babysit quite a lot) and I really connect with children. So presenting Team Up even to kids who are not on a sports team but have a friend or cousin on one, and seeing them fully comprehend how important this is felt like it really mattered. With so many kids being active and involved in sports, being able to spread the word at such a young age is so impactful. It’s kind of inspirational to know that you made a difference like that.

What would you say to someone thinking about becoming a Champion?

Do it. I would say especially for college students who want to be involved with an organization. Even if you don’t really think it applies to you, it probably does. The time commitment can be as big as you want it to be and the time that you do put into this organization and making yourself involved is so meaningful at a young age.

If you’re applying for grad school or for jobs, everyone wants to be able to say that ‘I changed the world’ or ‘I made a difference’ and this is a perfect organization to do that for the resume. But also just to make yourself feel good and know that you’re impacting a significantly large community in need that most people don’t know exists.

Interested in becoming a Champion? You can learn more or sign up here.

Remembering Drew: Karly Mulligan’s Story

Posted: April 21, 2017

This is the story of a sister and brother.

They say you can’t choose your family, but you can choose your friends. In my case, I did not get to choose that I had an older brother. But, for as long as I can remember, Drew was always my best friend.

Drew was born on June 15, 1993. Four years later, I was born. When I look back at memories of us, so many good ones flood in. But, some of my favorites are centralized around the one thing D loved most: hockey. Whether it be the countless knee hockey tournaments that took place in our living room or the weekends I spent at the rinks cheering him on, hockey was always his thing that I loved because he loved it. Hockey made my brother so happy, even in the darkest times of his life. I will always be eternally grateful to the sport and the boys that made Drew so happy for so many years.

Drew’s whole life revolved around lacing up his skates and getting out there on the ice. Drew played hockey his whole life, spending weekends traveling with his teams and weeknights practicing. His senior year of high school, he lived with our aunt in Pennsylvania so he could play juniors hockey. He took online classes before returning to our local high school when the season ended. Drew graduated from RHAM High School in 2011 and then went away to North Carolina to attend High Point University.

Everything seemed to be going well for Drew. As much as it was hard saying goodbye to him and adjusting to being an only child, he was happy. He quickly made friends and started to get serious about his school work. But, when I think of High Point now, one story comes to mind… one where his concussions impacted him off the ice. He was playing basketball with friends and fell, hitting his head. Luckily one of his friends from home also went to school there and he called her. Obviously, when you hear someone hits their head, it is a given that they are in a lot of pain. However, his speech was slurred and he wasn’t making much sense. This is when I began to realize how damaging head trauma is.

I always knew Drew had a history of concussions. At a very young age, he got his first one during a game. Being 6’4” and scrappy, Drew was always the first to jump off the bench to defend his teammates or run his mouth and antagonize his opponents. Being the “enforcer” comes with lots of responsibilities, but in Drew’s case, it also came with a lot of concussions.

To be honest, I am not sure just how many concussions D had in total… sometimes I felt like a simple bump of the head brought on symptoms. Sometimes, I think he wouldn’t say anything because he didn’t want to be taken out of the game. But, it wasn’t until the last concussion that made brushing them under the rug impossible.

I will never forget where I was when I got the phone call saying that everything changed for the first time. He had come home from college his freshman year and joined another junior hockey team in Massachusetts. I was at my friend’s house when the home phone rang for me. It was my mom. I always had a fear of not being at Drew’s game in case something happened. Nine out of 10 games he was ok… this game he wasn’t. Someone checked him, but it was not a normal check. The other kid’s stick was pushed against his chin, popping Drew’s helmet off. When he landed, his head hit the boards then the ice. My mom had said he was coming home after going to the hospital.

When he came home, he was out of it and in a lot of pain. His last memory was being hit, completely forgetting the process of going to the hospital and getting home. After going to the doctors, they told him that his brain damage was so severe, he was never to play a contact sport again. A huge piece of Drew never came home with him after that game. This is when his worst nightmare came true and mine started.

I find it hard to verbalize who Drew was, because quite honestly, I have never met anybody like him. He was kind, but protective. He was smart, but an idiot at the same time. He was capable of being serious, but preferred not to be. After a bad day, I would come home to his freckled-face and goofy smile and no matter my mood, laugh until tears rolled down my cheeks. He made everyone laugh. Underneath his 6’4″ stature, Bauer jacket and exterior “game face,” lay a heart of gold. He would do anything for anyone if they just took the time to ask. He did everything for me. Most of what I know today, Drew taught me. Most of who I am, Drew inspired me to be.

When I think of my brother, I don’t like to think of the negative. I like to remember Drew as my goofy idiot older brother who had a magical power to make me laugh when no one else could. We had so much fun together doing anything, even grocery shopping. As much as we laughed and joked around, he was my rock. He was the strongest person I know. He was able to read my face and know exactly what I was thinking or feeling. And if it was something he could fix, he would. That was Drew.

After that hit, Drew was never the same. For weeks, he sat in a dark room refusing to talk to anyone. Yes, he was in pain from his concussion… but I think that what hurt more was losing hockey. Desperate to get back on the ice, he used to hide his hockey bags in the bushes in hopes my mom didn’t see. That hit changed it all. Drew scored a 2100 on his first attempt at SATs. However, simple things that once were easy for my intelligent brother to accomplish became frustrating. School work that I used to ask him for help with became so challenging, I found myself tutoring him. He became irritated a lot faster, snapped a lot quicker and smiled a lot less.

With this being said, Drew attended trade school to become an electrician and graduated top in his class. The work, though harder for him, got done. Concentrating, which was again more difficult, was accomplished. He did it. He started playing men’s league, which was non-checking, reintroducing hockey into his life. He got hired for a local electrician shortly after and started working immediately. He loved it. I was so proud of him. I thought things were looking up for Drew and I had high hopes that his new-found success was enough to keep him here. I so badly just wanted him to be happy.

On February 17, 2016, my brother took his own life and his last breath. Something like this still does not make any sense. I am consumed by pain, guilt and emptiness. Words cannot describe this feeling of life without my best friend right beside me. It has been over a year and I still can’t understand why or how… “why did he leave, how am I never going to hug my brother ever again, why didn’t he say something that night, how am I going to live life without my best friend?” I will never get any of these questions answered.

Drew used to tell me that he knew his brain was not working and that there was something wrong. He said he could feel himself being incomplete. He felt his brain change. I so desperately wanted to help him or give him answers myself. However, at the time, there were none.

However, after deciding to donate Drew’s brain, some of my family’s question found clarity. His brain was diagnosed with Chronic Traumatic Encephalopathy (CTE) as well as Post-Concussion Syndrome (PCS). The more I learn about CTE and PCS, the more I answer Drew’s questions. I wish I could call him and tell him he wasn’t crazy… that the changes and confusion he was feeling, he was not alone in feeling. Maybe he would still be here today if he had the answers.

My brother’s death was my worst nightmare that every day I wish I could wake up from. But, I know I never will. With this being said, what my family and I went through is something that another family should never have to experience. Drew’s death is a reminder of how important safety and observation is. No matter how bad they want to get back on the ice, don’t let them until they are ready. No matter how much they love the sport, no game is ever worth saying goodbye.

Before this, I had no idea what I wanted to do with my life. However, now my life path is clearer than ever. Brain damage and CTE are such an important cause that needs to be more well known. Through connecting with the Concussion Legacy Foundation, I learned a sad truth that my family is one of many families devastated by CTE. I want to help families like mine. I want to help kids like Drew. I want to make a difference. I want to carry out Drew’s legacy.

Since his passing, our family and friends have been committed to spreading the word of CTE and brain injuries. Each year we host an annual golf outing in his honor. All proceeds are donated to Boston University and the Brain Bank to further research and hopefully help other families.

Although Drew’s earthly journey has ended (far too soon), his passing continues to teach me things every day. I now realize that brain injuries are not something to mess with. Although the consequences can be life-altering, if you realize the severity and the potential dangers, avoidance is possible. So, if you or anybody you know suffers from similar conditions, please, please, please seek proper medical attention for the sake of you and your family. Had Drew known then what I know now, things could be different. Regardless of circumstances, Drew has always been and will always be my big brother–partner in crime–bodyguard (at least he’d like to think so)–role model, but most importantly–my very best friend. I know he walks beside me each and every day and I feel blessed to even have had the opportunity to have him in my life for the time that I did. We’ll always be together in mind & in spirit, jamming to our favorite song… “Like an ocean you can’t see, but you can smell…but I do know one thing, where you are, is where I belong.”

However, I do not want his death to be the only thing his legacy stands for. I want my brother to be remembered for the happy, loving, wiseass he was. I want memories of Drew to bring smiles to people’s faces. I want Drew to be remembered as the real Drew, who he really was before CTE. With this being said, I want his absence to serve as a constant reminder to all…

Solving The PCS Puzzle: Lily Winton’s Story

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.

My Legacy: Cyclist Kathryn Bertine Pledges Brain

Posted: April 3, 2017

The crash

Former professional cyclist Kathryn Bertine speaks cogently and confidently as she discusses her decision to pledge her brain to the Concussion Legacy Foundation. “When my time is up, I certainly don’t need my brain, but if somebody else can benefit from understanding it, then that makes me so happy.” Kathryn’s voice has an unmistakable liveliness and optimism to it, as though she’s sitting across from a young cyclist that might someday benefit from the research she is supporting with her pledge.

That liveliness and optimism might be the byproduct of surviving the crash that left her lying on a road in Mexico, her skull broken in two places, seizures overtaking her body, her family hundreds of miles away. That crash was one year ago today.

On April 3, 2016, Kathryn was competing in a professional UCI race in La Paz, Mexico, a city 920 miles south of the California border. As a pro cyclist for five years and an amateur racer for five years prior to that, Kathryn had raced in events like this for a decade, never so much as seeing a major crash, and certainly never being in one. But this day was different. As the cluster of racers made its final push a mile from the finish line, the woman just ahead of Kathryn crashed. Kathryn was the first rider to hit her from behind, and was launched into the air. Her head hit with a smack. Dozens of women crashed behind her. Bodies flew, knees skidded, and bikes and bones crunched together and piled on top of Kathryn.

When the wreckage began to clear, some of the affected racers gingerly got back on their bicycles and finished that last mile. Others cleared to the side of the road to tend to more serious injuries. Kathryn was sent into seizures. She had broken her clavicle, suffered two skull fractures (right temporal and sphenoid bones), and endured a severe concussion from the coup-contrecoup brain injury, as she would later be told. Kathryn could only lay helpless while the chaos of the scene spun around her.

A doctor whose job was to follow the race rushed to Kathryn’s aid and for an excruciating eight minutes, he carefully gauged the level and frequency of Kathryn’s seizures, hoping they would slow. They didn’t. Calculating that an ambulance would take too long to deliver his unexpected patient to life-saving care—“She’s leaving us,” he said in Spanish—the doctor decided he had to act immediately. He rushed back to his van and returned in time to inject her with a serum similar to Ativan, the drug commonly used to treat epilepsy. It slowed down the seizures, and saved her life.

The next 72 hours were touch and go. Doctors at the Mexican hospital where Kathryn was delivered were monitoring the massive swelling in her brain to determine whether or not she would need surgery. Her seizures became more minor until they finally dissipated enough for the doctors to decide they wouldn’t need to drill into her skull. Kathryn spent five days in the ICU of that Mexican hospital before she was airlifted back to the trauma unit of the University Medical Center in Tucson, Arizona. Her memory of these days consist only of a snippet here and a snippet there. Green Jell-O that she was fed by the nurses. A soft, brightly-colored fleece blanket. A companion who had flown in to be by her side. But mostly, that tense time when Kathryn’s family waited to hear whether she would regain normal brain functioning was, to Kathryn, just a fog.

Recovery

“Whether through social media, real friends who I see on a daily basis, or strangers, everybody was truly kind and supportive of me. That moved me. That genuinely moved me, to see that people cared that much.”

Kathryn looks through some of the many well-wishing cards she received during her recovery.

Kathryn’s next stop after the near-two weeks in the trauma unit was yet another hospital in Tucson—St. Joseph’s—where she was monitored and evaluated for brain function. After a week there, she spent a month in bedrest at her father’s home to regain the strength to transition back to living her life. She had to overcome her own stubbornness at times; understanding the challenges that lay ahead was the most important part of setting her recovery on the right path.

“I remember sleeping a lot. I took that very seriously during recovery – that rest was best. That was hard for me to juggle as a professional athlete; being there laid out on the couch was something that I clearly struggled with. I was thinking, is it going to be this way forever? Am I going to be able to return to the life I loved as an athlete? Am I going to be able to use my brain again to full functionality? I just had to be patient during that part of the journey.”

Kathryn’s network of caregivers provided comfort and inspiration. “I felt surrounded by people who were supportive. My dad, my friends, my business partner, my former boyfriend, even cycling fans and complete strangers… everyone was so incredible, kind and helpful. Finding a support network of close loved ones where I could be honest about how I was feeling helped me progress tremendously, because I could be my authentic self. That’s something I would suggest to anyone who is going through any type of brain injury, to have those people, whether family or friends or doctors, who work with them to get over those emotional and physical hurdles. That did such an amazing thing for me, to be able to have people to talk to.

In July, Kathryn joined her team in Bend, Oregon to race for the first time after her accident.

The need for patience continually revealed itself, reminding Kathryn to listen to her body and be deliberate with her recovery. There was no shortcut to this finish line. As time passed, her strength increased.

Kathryn’s year of recovery inevitably led her to reflect on the issue of brain trauma within her sport. She didn’t emerge with a fear of riding or a regret for the sport she chose. After being carefully monitored by her doctors and neurosurgeons, she even got back on the bike late last summer for one final event in pro cycling. “I wanted to race once more,” she says, “but not to win. I won when I woke up in the hospital. This time, I raced for personal closure.” She wanted to mark the end her professional career with something other than a traumatic brain injury, and she did so successfully, finishing the race safe and sound.

But Kathryn did emerge with a more crystalized perspective on safety in sports. People who learn about the severity of her accident always ask whether she was wearing a helmet, Kathryn says. “Of course I was! But even if you’re wearing a helmet, really bad things can happen. We don’t address that enough in any sport.”

The pledge

“When my time is up, I certainly don’t need my brain. But if somebody else can benefit from understanding it, that makes me so happy.”

After retiring from professional cycling in 2017, Kathryn Bertine now works as CEO of the Homestretch Foundation, which combats salary inequity for women in professional sports.

The VA-BU-CLF Brain Bank has now accepted more than 400 brain donations, and has received over 1,500 pledges. Most of those donations and pledges have come from men. By pledging her brain, Kathryn becomes the first official pledge from professional cycling and joins a growing list of prominent female athletes to pledge and raise awareness of the importance of concussion and CTE research. The list includes soccer legend Brandi Chastain, Olympic gold medalist Nancy Hogshead-Makar, and most recently Olympic hockey icon AJ Griswold, a friend of Kathryn whose story inspired her to pledge. These high profile pledges are making a difference; female brain pledges in 2017 are on track to triple the amount received in 2016.

“This pledge gives me emotional closure. If I am lucky enough to live through this traumatic brain injury, it makes me so happy to pledge my brain to research so that others can learn from what happened to me. I hope my story can help encourage other cyclists and athletes to pledge too.”

Exactly one year after her horrific crash, Kathryn Bertine is in high spirits with an eye toward the future. She tells her story as a way to rally the cycling community to contribute to brain trauma research. She is planning a trip to La Paz, Mexico in May to thank the doctor who saved her life. When asked her impressions of the doctor, Kathryn says: “He’s incredibly humble. I had tears in my eyes as I wrote a note thanking him for saving me in the middle of the road, and he humbly replied, ‘I was just doing what needed to be done.’” Altruism, it seems, is contagious.

Our Legacy: Providence College Rugby’s Pledge

Posted: March 1, 2017

Since its founding in 1978, the club has maintained a team ethos that welcomes everyone from life-long enthusiasts to true novices who haven’t even held a rugby ball. I fell into this latter category when I joined the team in 2012. I’m grateful for the program’s openness to teaching new players about the sport and its culture of comradery in competition. Rugby became a staple for me during college and I was even fortunate enough to play in England for a year abroad before returning to play for Providence.

While my experience playing rugby was overwhelmingly positive, I did sustain two concussions playing for the Black Pack, briefly losing consciousness both times. I was given immediate attention by players, coaches, and athletic trainers, so my injuries were by no means ignored. But looking back, the experience taught me how much more club rugby could learn about the aftermath of concussions and brain trauma. As a sport, we need to recognize that these hits are more than just dings and head knocks, and that it’s not just the most severe concussions that count. Any hits to the head have dangerous cumulative potential.

The goal of the Foundation’s My Legacy campaign is to honor those who are contributing to research and awareness, and to encourage others to join in the cause. When I reached out to the team about participating in the My Legacy campaign during Brain Pledge Month, the players and coaching staff enthusiastically embraced the opportunity. Head Coach Mike Cox has been with the Black Pack since 2009 and hopes that, by raising awareness about concussions and Chronic Traumatic Encephalopathy (CTE), the club can contribute to a cause greater than just a winning or losing season. “You know what? When it comes to this, it’s not about rugby,” said Coach Cox. “It’s about the players.”

At the national and international levels, some rugby teams are trying to improve their concussion response by hiring spotters to monitor players and by having multiple athletic trainers available to care for athletes. But as a college club team, the Black Pack’s ability to hire spotters or extra trainers is limited by funding – an issue we see throughout youth and high school sports as well. Unable to utilize as large a medical team as a professional club, the Black Pack recognizes the power of being educated and banding together.

Senior Captain Cameron Hughes, whose older brother captains the USA Rugby 7’s Olympic team, said: “Rugby is like a brotherhood and we need to look out for everyone’s long-term interests. I think it has to start with teammates, and if your teammates are prepared to say ‘maybe you need to go get checked out’ then it will eventually develop into opponents being able to say that to each other in a fair and justified way.”

Hughes grew up playing rugby in England and is a seasoned leader. When asked how he felt knowing that nearly the entire team was pledging, Hughes, who has suffered at least two concussions himself, said, “I’m really proud of the boys. It’s a great cause so I’m glad that they’ve all stepped up to help out. I’m sure more schools would do the same if they were just presented with the opportunity. I think once you understand it and once you have someone explain what you could do to help, it really doesn’t take away from you doing anything else.”

Attention is most often paid to research on head trauma and CTE in professional sports, but the research conducted at non-professional levels is also crucial. Researchers at the VA-BU-CLF Brain Bank have diagnosed CTE in 91 out of 95 former NFL players, and in amateur football players as young as 17. The disease has also been discovered in professional and amateur athletes who played rugby, hockey, and soccer, to name a few. When athletes choose to pledge their brain and speak up about this issue, they are helping to raise awareness, improve education, and promote much needed research at every level of their sport.

Senior Captain Tadas Jalinskas experienced several concussions while playing high school football and knows this issue shouldn’t be taken lightly.

“Cam and I take concussions very seriously. Injuries in general we take very seriously. If we ever see something, we pull the kid aside to talk to him and figure out what’s up and Coach Cox does the same thing. It’s talked about on the team.”

Jalinskas is a formidable player on the field and he has arrangements to try out for the Lithuanian National team following the spring rugby season. If all goes well, he plans to attend graduate school in Lithuania while he plays. But with this pledge he is thinking much further ahead. “Our careers are almost over but we have the rest of our lives to look forward to,” he said. “We don’t want to have any injuries like concussions that could be problematic down the line.”

Rugby is the fastest growing team sport in the US and it is attracting serious athletes to club teams throughout the country. The International Rugby Board estimates participation at close to 500,000 players and counting in the US. We hope that as the sport continues to grow, awareness about its potential risks will grow as well so that athletes can make more informed decisions.

The Black Pack has certainly done their part. Of the 30 players from Providence College who have made the pledge, many also played high-impact sports like American football, hockey, or lacrosse and some were wrestlers and boxers before finding rugby. These players have taken a tremendous step toward raising awareness about head trauma and understanding CTE by making the pledge. While the issue is intimidating, and it should be, it’s important to remember the power that clubs like the Black Pack have in banding together in order to improve the sport for the next generation of ruggers.

The team kicked off their spring season this past weekend in a tournament at Babson College. We wish them luck in their march to nationals.

Join the Black Pack and take the pledge here.

Harvard Hockey Goalie Pledges Brain

Posted: February 24, 2017

I never thought that at just shy of 23 years old I would have spent so much time thinking about my legacy. And yet as my hockey career ended just four short days ago (at the time of my writing this) I’ve spent a significant amount of time thinking about what my legacy will be. We have a saying in the Harvard Hockey program that our ultimate goal is to leave the jersey better than you found it for those who follow you. I now realize that leaving the jersey better than I found it does not stop with the Harvard Hockey program. It extends into the wider world of sports, and leaving that better than we found it. By telling my story, I hope that I can leave the jersey, and the sport at large, better than I found it.

I was an athlete from before I can actively remember. Everything my older brother did, I wanted to do too. That’s really why I started playing hockey. When I was eight years old I got my first chance to play as a goalie and fell in love with it. The rest, as they say, is history. It became part of my identity, and something that I was proud of. I was a goalie; one of those slightly crazy people who defies human nature and puts herself in the way of fast moving objects. And I loved every second of it.

When I was 13 years old, I suffered my first concussion. I was wearing a junior level mask because it never occurred to my parents or me that I should have been using anything better. I was training on the ice with a group of guys who were a few years older than me when I got hit in the head with an errant slapshot. I always loved the challenge of keeping up with older, faster athletes. The instant that the puck hit me, I knew something wasn’t right. I had been hit in the head before, but this felt different. When my friend and the goalie coach came over to see if I was okay, they discovered that the cage of my mask was dented, and that there was a red welt forming on my right cheek. My friend apologized countless times, asked me if I was okay, and in true athlete form, my response to his question was, “Where’s the puck? Did it go in the net?” Once they assured me that no, the puck had not gone in the net, I left the ice and called my mom. She came and picked me up from school, and took me home. I remember sitting with an ice pack on my face and head to try to keep the bruising at bay. I was home from school for about a week, and when my symptoms cleared, I went back to school, and within 2 weeks I was back on the ice without symptoms. I was young, it was my first concussion, and I was incredibly lucky to heal so quickly.

The second time I suffered a concussion was in a playoff game when I was 15. In the second period of a 0-0 tie against a team we were expected to lose handedly to, I got hit in the head with a stick across the left side of my head. I was in a butterfly (on my knees to cover the bottom of the net), when a puck was flipped in the air towards me. The girl on the opposing team took a swing to try and bat it out of the air and missed, but made clear contact with me. Having suffered a concussion at 13, I knew immediately that I was not okay. I remember looking up to see who hit me and struggling to determine if the number was 13 or 31. The numbers looked like they were dancing.

But it was only the second period, and we had to win this game in order to advance to the provincial championship tournament. My competitive instincts took over and told me that I shouldn’t say anything. If I told the coach that I wasn’t okay, they would take me out and we might lose the game. I couldn’t do that. So I finished that game. We ended up winning that game, although I can’t remember it, and advancing to the championship tournament. I remained silent. I only had 2 weeks until that tournament. I was a leader. I was the starting goalie. My team needed me, so I had to be tough. I had to suck it up for the team’s sake. At no point did it occur to my 15-year-old self that I might be hurting myself, or even the team, by playing through a concussion.

The decision to play through it was one that I suffered the consequences for. For almost six months following that decision, I was a different person. I was a shell of the chatty, competitive, smart, outgoing teenager those around me had come to know. My friends noticed that I wasn’t smiling as much. My teachers noticed that the quality of my work had dropped significantly. My family noticed that I was different, but none of us knew why. We know now. It was most obvious that I was still suffering in my math class. I went from being in the top of my class to having my teacher tear up an exam because he knew there was something wrong because I had done so poorly. And it lingered after freshman year of high school had finished. In September of my sophomore year in the review of what we had learned the previous year, I had absolutely no recollection of learning certain concepts. I had to go back and learn them from scratch while my classmates went ahead and built on the concepts they had already mastered. My decision to try and play through this concussion impacted not only me, but everyone around me for many months.

And yet eventually I healed and found my new normal. Anyone who has suffered a concussion knows that healing means finding a new normal. It’s a new version of 100%, but it’s not the same as who or what you were before. It can’t possibly be. But that doesn’t mean the story has to end. Mine certainly didn’t. My new normal was good enough to be the class valedictorian in high school, get me into Harvard, and onto the Harvard Hockey team.

On move in weekend of what should have been my sophomore year in college, my parents and I were involved in a serious car crash. We had stopped at a red light, and I was on the phone with my aunt making plans to see them for dinner when we were finished unpacking, when I saw the light turn green. My dad, who was driving, pulled out into the intersection, preparing to make a left turn. There were three lanes of traffic before the turn lane we were in. I remember looking out the window of the back passenger seat and seeing the dark color Jeep speeding at us. I tried to say something to warn my parents, but nothing came out of my mouth. The impact of the car was unlike anything I had experienced, despite having been run over more than once in my hockey career. Our car tipped up onto its side and came back down onto the road; airbags were deployed, the front passenger door was dented beyond recognition, and the front driver tire was parallel to the ground.

In the chaos of my parents both whipping around from the front seat to make sure that I was okay, and telling me I had to get out of the car immediately, I remember thinking to myself, “My hockey career is over. I won’t recover from this”. The flurry of activity that followed included a neck brace, being taped to a backboard, the trip in an ambulance, and a brief visit to the pediatrics unit of a local hospital. My memory of the weeks that follow is spotty at best. I remember watching my team do fitness testing because the trainer knew I had been in a serious car accident and didn’t want me to participate. I remember feeling like I was going to fall off the bridge and into the Charles River walking from my dorm to the rink to watch fitness testing. I remember not being able to leave my room without a baseball hat and my dark sports sunglasses on. I remember the pounding headache, the sensitivity to sound and light, and feeling like my world was closing in on me. On a continuous loop in my head I heard the screeching of the tires, saw the look of terror in the faces of my parents, and couldn’t escape the feeling of the impact against my body that had certainly spelled the end of my career.

A few weeks after the car accident, I met with my academic advisor because I still couldn’t go to classes. She kept the blinds drawn to keep the sunlight out of the room for me. I remember her telling me that if I had done something stupid and wound up concussed that the college might not be so open to preserving my eligibility. Ultimately, she advised that I take a medical leave of absence and go home to give my brain some time to heal. In the third week of September, I packed a suitcase and I flew home for the year.

The next few months were some of the worst in my life. Not only was I suffering from the symptoms of a concussion, but I was now isolated from my teammates and my friends at school. I truly felt like my life had been taken from me, and there was nothing I could do about it. I couldn’t get angry, because that would raise my blood pressure and make my headache worse. I definitely couldn’t cry because that would make the pressure in my head even more unbearable. I couldn’t escape into a book, as I usually did when I was sad, because I couldn’t focus or comprehend what was in front of me. I watched Gossip Girl. There were no explosions or loud noises and the plot was easy to follow. As a self-proclaimed bookworm who loves music, it was particularly hard to be happy because I was unable to do all the things that I loved the most. I couldn’t play hockey, I couldn’t read, and I couldn’t listen to the music I liked.

Somehow I recovered from this too. It’s truly amazing how resilient the body can be. I worked with no fewer than three therapists to get the concussion symptoms under control, to manage the neck and back pain, and to help me regain the mobility I had lost from sitting on the couch for months at a time. Once again, I had to find a new definition of normal. I could move without serious back and neck pain. The headaches eventually went away. The sensitivity to sound eventually subsided. I began to be able to walk for 15 minutes without feeling sick, then 30 minutes, then bike and workout. Slowly but surely I started to feel like myself again. I had a new normal, and it was just fine with me. In late March I got a job, and I was finally seeing the light. Maybe I wouldn’t be exactly how I was before, but I’d be damn close, and I wouldn’t stop trying to get back everything I felt I had lost.

I am now a second semester senior in college. I played four years on the varsity women’s hockey team. I still get headaches when the weather changes, and I am still sensitive to light, I still have neck pain and I have jaw problems that I wasn’t aware I had from the accident. My new normal is about to get me to graduate from college and start the next journey of my life, but not before I do some serious thinking about how to leave my sport better than I found it.

Suck it up. Play through it. Walk it off. These are the statements that float around constantly in the mind of the competitive athlete. The culture that we’ve created that surrounds sports doesn’t allow for any other thinking. It endorses the idea that no one and nothing is more important than the team, and helping the team win. I’ve had to learn the hard way that this simply isn’t true. The health and protection of our brains is more important than any game.

There is a fine line between giving up everything you are, and everything you hope to be, in order to avoid being labeled soft or told you’ve let your team down. I do not believe that anytime an athlete gets hangnail that he or she should be excused from competition. Quite the opposite actually. I’ve learned a lot about the strength of the human body and the strength of a team, by playing through a broken finger, a sore arm, gimpy knees among other things. But the visible injuries are the easy ones. Your teammates see you limping, see your finger bent backwards, see the slings and casts, they see the blood you’ve shed for them. The seemingly invisible injuries are the dangerous ones. Outwardly there’s very little evidence. No sling. No cast. No limp. But the functional trauma is real, and doesn’t get the attention and support that it should.

I’ve decided to join the Concussion Legacy Foundation and pledge to donate my brain because I want my story to help inspire others to take better care of their brains. I don’t want to watch any more of my teammates suffer in silence because they are afraid to speak up about their concussions in fear of lost playing time, or worse, for fear of being labeled soft or selfish. As athletes, it is our responsibility to have our teammates’ backs in competition, but we’ve fallen down on our responsibility to look out for each other’s brain health. The culture of playing through concussions needs to stop. I want to give back to the game that brought me so much joy.

My legacy will not be in the number of saves I made, or the number of games I won. I hope that my legacy will be in finding a way to leave the game I love better, safer, and healthier than I found it.

This is my legacy. I hope that you’ll make it your legacy too.