Hockey, Hits, and Hope: Dillon Abend’s Story

Posted: March 27, 2019

I started playing hockey at the age of five, doing local clinics, playing with local travel teams, and doing 3 on 3’s with my cousin. I fell in love with hockey because it takes not only great technique but a great mind to succeed. Hockey is a thinking sport where you must be thinking ahead to the next play before you can execute the current play. Through my own experiences and by learning from my teammates, hockey has made me a more dignified person, a better problem solver, and more understanding.

On a Sunday night in July 2018, though, my hockey career took a pause. One mammoth blow to the head on one play turned my life upside down. That’s why this past year has been the hardest of my life. And that’s why by telling my story, I hope I can provide some hope to other kids going through the same thing. Here’s how it happened.

There was captain’s practice at my High School. There was a coach present, but college kids were running it. At the end of practice, the college kids instructed that we do a non-contact 3-on-3 drill. In the last minute of practice, the college kids blew the whistle and I went in. There were upcoming freshmen on the team and I wanted to show them I was one of the nice kids and to help them learn and develop. I received the puck and dangled through two defenders and looked to pass to a freshman on the post. Out of the corner of my eye I saw a teammate charging at me halfway across the ice. I thought he was just going for the puck, and then BOOM. I was hit by what felt like a truck and suffered a double-concussion. The first came from the whiplash, then the second from my head hitting the ice. I saw stars and was very dizzy and my mind has felt cloudy ever since. I had no idea what was happening and stumbled back up and felt like I was going to throw up off the ice.

I was out for a couple of weeks after that day. I missed five practices and a camp, and started to feel pressure to practice again. I wasn’t completely symptom-free but felt close enough to normal to play again. But practicing brought on a headache and I stopped after that.

I tried to go about my normal life. I was hanging out with friends, going to school, exercising, and driving. I was trying to be a normal teenager. But my symptoms made that impossible. It got to a point where I was throwing up in school because I was trying to do math problems and then throwing up again at home because I was trying to catch up on the work I couldn’t do in school.

Eight months later, I am still symptomatic and have major neck problems. My memory has suffered since the incident. Before the injury, I was doing great in school, had a big group of friends, and was a tier-1 AAA hockey player with high hopes for playing college hockey. Since the injury, I have not been able to comprehend or learn new concepts at school, hang out with friends, or even have Thanksgiving dinner without my head pounding. My head feels like Niagara Falls is rushing through it.

I had to take a break from school, my friends, and hockey to recover. During that time, I’ve picked up some strategies to help deal with my headaches and nausea. I put a blindfold on when my symptoms flare up to help subdue them for parts of the day. Screens make my symptoms worse, so I limit my phone time and stopped watching TV. Busy areas only make things worse, so I avoid them now. And as much as I want to be an athlete again, I had to stop trying to exercise to give my brain a break.

Is it working? A little. I’ve seen progress and hope my sacrifices will end up curing my concussion for good.

While I’ve dealt with my concussion, my dad has been battling Stage 4 Pancreatic Cancer, lost his job, and is bed bound in chemotherapy. Hell is an understatement for what I’m going through. While this concussion has drastically changed my life, I know that all I can do is have hope. I know I will get better and have hope that I’ll be healthy and happy one day, hope that I’ll be very physically fit again, and hope of attending a good school and playing college hockey. I have hope that my dad will have energy again and be cured of his cancer. And I hope my story can show kids who are battling a concussion how things might seem tough, but if you take the time to recover it will all get better eventually.

 

How My Brain Pledge Will Help Other Veterans

Posted: February 28, 2019 

Matt is one of thousands of people who have pledged to donate their brain to CLF to support research. He shared his thoughts about Project Enlist, CLF’s program to advance research in the military community, during Brain Pledge Month 2019. Watch the video and read on:

Why is pledging one’s brain to research something that you’d like to see catch on among service members?

I’ve pledged my brain to CLF, and as you know, I’m a veteran. My former boss, and good friend, Bob McDonald, also a veteran, who was the Secretary of the VA, has pledged his brain as well. The more veterans we can inspire to pledge their brains – veterans who have typically played sports or who have been in combat – the more work we can do toward the advancement of vital brain research.

 

It’s seriously important to get as many veterans’ brains pledged as possible. It’s very similar to pledging your organs when signing for your driver’s license. It’s a really impactful and important thing to do for research; and I think every veteran should at least consider it.

Just to be clear, for this effort to be successful in the long run, we will also need to conduct research on brain specimens that have not been subjected to trauma – to act as a control group for the research. Every pledge counts no matter the exposure you have had to brain trauma.

What do you hope Project Enlist will accomplish?

Researchers have made tremendous progress learning about the consequences of brain trauma in various sports, but there is still so much more we need to know about TBI, and the causes of PTSD and CTE in veterans. It’s critically important that we learn what is unique about the brain trauma that many veterans are exposed to during military service. Through Project Enlist, we will mobilize the military community to support this research, and I hope it accelerates efforts to improve the long-term health and well-being of not only our veterans, but of Americans in general.

 

The VA is a collaborator with Boston University and the Concussion Legacy Foundation on the VA-BU-CLF Brain Bank. What did you learn about the VA’s research capabilities while you were there, and how did you eventually get involved with the Concussion Legacy Foundation?

First of all, people know very little about the monumental research that is done at the VA, and it’s not just for veterans. The VA has conducted major pioneering heart studies, performed the first liver transplant, developed the nicotine patch, and the list of discoveries and major breakthroughs in healthcare go on and on – in fact, doctors working for the VA have received several Nobel prizes, and numerous Lasker awards. Ironically, major innovation and game-changing research are not what the VA is known for, but the VA and its brilliant researchers demonstrate these unique and significantly impactful qualities every day.

I got involved with CLF a few years ago while serving the VA under then Secretary Bob McDonald. I became intensely interested in brain science because so many veterans suffer from brain injuries and from PTSD. We thought it was critically important to explore, and better understand, why these phenomena were happening at higher rates in the military. So one of the things we (the VA) did was to start an event called “Brain Trust.” We gathered the best and brightest from all over the country in brain research, and brought them all together. We wanted to create an environment conducive to partnerships and creative thinking. During this time, Bob Costas introduced me to Chris Nowinski.  Of course Chris and the Concussion Legacy Foundation really stepped up to the plate for Brain Trust. I was so impressed by Chris, his team, and the work CLF has done, that I eventually worked with Chris to come on to CLF as an informal advisor. Ultimately, Chris and the board asked me to join in a more official capacity as a full-fledged Board member. I’m extremely honored to be part of the CLF team.

What do you hope to accomplish as a member of CLF’s Board of Directors?

First and foremost, my focus will be on improving the lives and long-term health and well-being of veterans. I hope my experience and connections in the military and veteran community will help push research forward through programs like Project Enlist, and help enhance the work CLF is already doing for veterans and their families.

The awareness of concussions and CTE right now is probably higher than it has ever been. Did you ever think about all those hits adding up while you were playing hockey for West Point or during your military service?

When you’re young, of course, you think that you’re invincible. I never really thought of the hits to my head as a boy or as a young man, but I think about it now – much more frequently. And the idea of invincibility, which is a common theme by the way, as our brain donor families talk about their loved ones – many of whom were professional athletes – and who ultimately suffered the consequences of CTE. This feeling of youthful invincibility is exactly why we need to raise awareness with young men and women, as well as their families – before CTE can take hold as a result of repeated hits to the head.

And as you translate this to military service, and the greater vulnerability to our military men and women in combat zones as they serve our country, it’s critical that we better understand what is really happening inside the brains of these brave service men and women as a result of exposure to explosions, blast, and the impact of trauma. We are only in the embryonic stages of brain research, and we need to learn so much more about how this trauma could be connected with PTSD, and other possible psychological manifestations of CTE. We have a long way to go, and the only way we can make progress is one important step at a time.

You are a prime example of a successful transition from the military to civilian life. What allowed you to make that transition so smoothly?

I’m not sure… I guess I’ve been very lucky to have had a very supportive family around me since I was a kid; and have been, and continue to be, surrounded by great people – wonderful employees, terrific bosses, talented colleagues, and extremely helpful and caring mentors.

Join Matt Collier and pledge to donate your brain.

A Powerful Documentary: “Football in America”

Posted: November 20, 2018 

I submitted this film to the Sports Emmy group back in 1982. I was amazed when it got nominated for Outstanding Achievement in Sports Programming and shocked when my brother in law called me to say he had accepted the award for me. Our small crew consisted of me as director/cameraman/interviewer, and an assistant/sound person. Funding for the film was a PBS grant out of WNET in New York City. What was most telling to me was that the sports industry was acknowledging that there was a problem with the game of football and it deserved attention. Thirty-seven years later, with today’s players bigger, stronger and faster, I want to thank Chris Nowinski and those at the Concussion Legacy Foundation for honoring our film, and its cautionary message once again.

How A Jockey is Racing Toward Concussion Safety

Posted: September 21, 2018 

The Massachusetts native was hospitalized in Washington D.C. for intensive care and spent the last year recovering from her injuries, the most persistent of which is her severe concussion. The experience showed Miller just how difficult it can be to return to life after a concussion – and how much research still needs to be done to understand the effects brain trauma can have on long-term health.

Now, Miller is pledging to donate her brain to the Concussion Legacy Foundation to raise awareness about the need for research. There is growing awareness about research on brain trauma in the jockey community, but much more progress is needed. Miller hopes that her experience and her enthusiasm to improve jockey welfare will inspire more jockeys to pledge their brains and create a larger educational movement in the racing community.

Could you tell us about your injury last year and how it happened? What has the recovery process been like for you?

I went down in a race in West Virginia and I don’t remember much of that day. After watching the replay, it looks like I was quite likely knocked out upon hitting the ground. I had one horse left behind me in the race who came along and kicked me in the jaw when he tried to jump me. Whether the brain injury came from the initial fall or getting kicked by a thousand-pound animal, I’m not sure. It could have been either or could have been both.

I ended up with two jaw fractures and three separate brain bleeds all on the surface of my brain that put me in the ICU, I’m not sure how long. Then I was in the hospital for a couple weeks, and I stayed at another rehabilitation hospital for five days after that.

 

My memories are a little fuzzy from when I first got out of the hospital. I know they warned me a lot about the possible psychological aspects of head trauma like depression and anxiety. They warned me enough when they discharged me that I remember it. Now I’ve been discharged from my speech rehab, but I’ve still been in physical therapy.

What is your general sense about how concussions are perceived in the racing world?

I think it’s more just something that’s accepted as a risk that we are willingly taking to do something that we love. From what I know, it’s not openly spoken about. The one thing I do know is we are all very aware of the risks. All of us have either heard of or met jockeys who have had serious injuries whether they be brain injuries, spinal injuries, or even deaths from going down in a race. We all know it’s a very real possibility, and that it’s significantly more a matter of luck than skill or decision making.

Why are you donating your brain to the Concussion Legacy Foundation?

I think it’s important to further both research and awareness as much as possible now, rather than getting to the point where we have parents saying it’s not safe for their kids to play sports at all because the proper research was not done ahead of time. Too many people are getting hurt, so let’s find out what adjustments need to be made now so that in the long run all of these sports that we love can keep going.

Is donating one’s brain to research something that you’d like to see catch on with your fellow jockeys and fellow riders?

Absolutely, I think it’s a good way to spread awareness. Most jockeys currently racing tend to be younger – hopefully they live nice long lives – but by the time they pass away there will probably still be research to be done. So why not donate it? We are certainly in a position to have suffered a variety of brain traumas. Most of us will get through our careers suffering numerous concussions and some will have some big brain injuries, so I think it presents a good pool of variety to gather information.

Did you struggle to manage and coordinate your recovery?

The insurance company did provide me with a nurse case manager for the first few months. She organized all my appointments and came into almost all of them with me, just in case I was struggling to ask a doctor a question or understand something, so she could get more details. We’d talk about it afterwards and she would take notes on everything, so I didn’t have to feel the pressure of trying to remember everything that was discussed. She was immensely helpful with that. It would’ve been nicer to have her a little bit longer but I’m glad I had her for as long as I did.

But I feel lucky. After a brain injury, you aren’t really in a position to be seeking help because you aren’t necessarily mentally capable. And on top of that, I grew up in America, English is my primary language and I’m familiar with our medical system. A lot of the jockeys I race with are young guys from other countries and I couldn’t imagine trying to go through this if I was still learning English at 18 years old while my family is in another country.

What do you hope the future of horse racing will look like in relation to brain injuries and jockey welfare?

I would like to see everybody get on board for making sure jockeys don’t ride when they aren’t cleared and aren’t medically ready. I don’t believe that there is ever going to be anything that will completely get rid of the risk. But I’m not looking for that as much as utilizing what’s available for technology to decrease the risk. One of the concerns for a lot of jockeys is the time spent out of work is time spent with no income. Some people rush back to work because they have families, and that’s understandable. Not every injured jockey knows about the financial resources available to us because it varies a -little bit state-to state. Also, many people are trying to put better concussion protocols in place, but they are not consistent nationwide. We need to take the best technology and the best recovery protocols and make it all a little more accessible for those that get hurt.

Join Jenn in taking the pledge to donate your brain.

CLF’s ’17-’18 Teammate of the Year: Sydney DeMasi

Posted: September 12, 2018

Sydney DeMasi from the Somerville High School Girls Soccer team went above and beyond to protect her teammate Samiyra.

With only a few minutes left in one of the final games of the 2017 season, a forceful kick by the opposing team struck Samiyra directly in the forehead. Sydney witnessed the ball hit Samiyra and, as good teammates do, went to check on her.

As Sydney remembers it, “Sami was like ‘I’m fine, I’m fine.’ But then it got to the point where she was unsteady walking.” So, Sydney informed Somerville’s athletic trainer Michelle Kelly that something was wrong with her teammate, and also told Samiyra to check in with Michelle.

The next day in school, Sydney sought out Samiyra to see how she was feeling. “I asked her if she saw Michelle or the coach. She said, ‘No I think I’m fine.’”

Despite Samiyra’s assurances that she felt okay, Sydney suspected that she was hurting. Sydney noticed Samiyra was squinting at the lights and she admitted to getting headaches.  “Sami is not one to speak out when she’s hurt, she’s very quiet…[but] I was told by another teammate she was falling asleep in class which isn’t like her, so I told her to go see Michelle,” said Sydney. Still worried, Sydney followed up with Michelle Kelly and Samiyra later that day to be sure that she reported her symptoms. It turned out that Samiyra did have a concussion.

Samiyra was diagnosed and entered the concussion protocol to start her rest and recovery process right away. But not long ago, a concussion like Samiyra’s might have gone unnoticed and undiagnosed. It’s impossible for coaches and athletic trainers to monitor every player at all times, so occasionally concussions can slip through the cracks. That’s why looking out for teammates and speaking up when a concussion is suspected, the core principles of the Team Up Against Concussions program, is so crucial to keeping athletes safe.

Team Up Against Concussions encourages coaches to give a speech at the beginning of every season asking their players to speak up if they think a teammate might have a concussion. Understanding that injured athletes often cannot recognize when they have a concussion, or that they may feel pressure to stay in the game, the goal of the program is to create a positive concussion culture and make sure athletes with a possible concussion are removed and checked immediately. Studies show that immediate removal is the key to getting them back to full strength and back in the game most quickly.

And that’s just what Sydney did. Michelle Kelly and head coach Tony Arias have created a positive concussion culture on the team by teaching their athletes how to recognize the signs of a concussion and about the importance of speaking up if they think a teammate has a concussion. “The kids really do look out for each other,” said Michelle Kelly. “The soccer team in particular has this family mentality where they protect each other.”

That protective family environment is obvious in Sydney’s actions and in how she speaks about her teammate. “Sami is a big part of the team,” said Sydney. “If she wasn’t able to play ever again because she got hurt worse, it wouldn’t just hurt us, it would hurt her. Soccer is something she loves and we all love, and we all want to be part of it together.”

“I’m very proud of what Sydney has done during the couple of years that she has been with the program, especially when she took initiative that night with Samiyra’s case,” said Coach Arias. “She is one of those people where if she wants something done, she gets it done. That’s her character and I was not surprised that she handled it so well.”

 

Michelle echoed Coach Arias’ praise of Sydney. “To be able to recognize that someone is in distress – make sure they’re ok – realize they’re not ok – and to tell somebody about it then make sure the follow up happened, I think that’s something pretty remarkable. We don’t see that all the time.”

The Concussion Legacy Foundation is proud to present the Teammate of the Year Award to Sydney and hope that more athletes follow her outstanding leadership.

Carlijn Schoutens’ Olympic Comeback

Posted: July 25, 2018

Despite wanting to return to training, Schoutens battled nausea, headaches, light sensitivity, and emotional instability that made training impossible. But after taking the time to recover fully, Schoutens returned to the ice for the 2016-2017 season healthy and determined to reach the 2018 Winter Olympics in Korea. Schoutens’ remarkable drive to realize her Olympic dreams helped her overcome a late start to the 2016-2017 season and carried her all the way to Pyeongchang, where she earned a bronze medal in the Team Pursuit event.

Now, Schoutens is sharing her experience and joining the Concussion Legacy Foundation to help athletes who are struggling to cope with their concussions. Read on for an Olympic perspective on the hardest part of recovering from PCS, seeing an elite teammate struggle with a concussion, and what athletes at every level can do to navigate these challenges.

You suffered a pretty serious concussion back in 2015. How much did you know about concussions before then?

Not enough. I didn’t realize that it was a potential problem in my sport. I must have been around people that had concussions, especially in short track where there are more falls, but it just wasn’t on my radar. I always thought of contact sports first. Luckily it was on my coach’s radar.

I fell in a really uneventful way. I slipped in the turn and slammed into the pads, just like you’re taught to do as a kid: with your back first in a seated position. That was all completely textbook. At first, I had no symptoms at all – I finished the workout, did another workout, and went to work.

The next morning, I woke up early and I threw up. I tried to fall asleep, but I kept throwing up. I texted my coach and told him “I must have food poisoning or I’m just sick. I can’t come train.” He was worried because I had fallen the day before so he sent someone over to take me to the hospital. I was diagnosed with a concussion there. It never occurred to me that the nausea could have been from a concussion.

Schoutens (left) celebrating with her Team Pursuit teammates Mia Mangenello, Brittany Bowe, and Heather Bergsma in Pyeongchang after winning bronze.

No concussion experience and recovery are exactly alike. What was the most difficult part for you and what made the biggest difference in your recovery?

The early phase was easier, even though I was really sick – nausea, headaches, locked in a dark room kind of thing. There was a lot of empathy and understanding as to why I couldn’t come to practice and I couldn’t train.

Then there came this whole phase where I kept getting knocked back down in the recovery process when I thought I was ready to go. It became really frustrating – feeling like the recovery was dragging on forever. I didn’t know how to resume training without taking more risks. On top of that frustration, I had some cognitive symptoms like sadness and emotional instability. I didn’t know what more I should be doing to get better and I thought that was way harder.

So, I think a couple months later when I still was not over the concussion was a lot harder than the acute phase.

What were some things you didn’t know about concussions before you had one?

I didn’t really realize that mental or emotional symptoms can be a part of it. For me, after 4 or 5 months, it got really tough mentally to keep being patient and stay sane.

I also had never experienced the difference between [orthopedic] injuries and concussions. Not long after I got injured a teammate broke his arm and he couldn’t skate either. But the difference was, soon after his injury, he was able to go watch practice and hang out and cheer people on. I was so jealous of that because I couldn’t even do that. I couldn’t have that social interaction and support my teammates because I was stuck at home. I always felt like with some other injuries that are more visible or more physical you can focus on something else for a little while – like make a lot of progress in school or go on a vacation or go home. With a concussion, you can’t do anything at all and that was what was so tough about it.

What do you wish someone had told you while you were recovering from your concussion?

Focusing on recovery is very important. At first, they told me not to train for a week and I was like—ok, that’s pretty bad. I had no idea how much worse it was about to get. There was a point about 4 months in where we finally decided to give up on my season and that was just a load off my shoulders. I could just do nothing at all and focus on my recovery and not worry about skating for a bit.

I talked to a sports psychologist a lot throughout. One time he put me in touch with another athlete of his who had had a concussion. We just met up and had a coffee and she told me about her experience with her concussion. That was very helpful to me. Having that connection with her and being able to text her saying, ‘Oh I’m still not better. How are you?’ That was really nice.

I also did a good job of tracking my symptoms. I have a whole collection of sheets where I tracked my symptoms so we were able to see some kind of trend and progress and that was helpful.

Finally, setting small goals for things other than skating really helped me. Like ‘Oh today I’m going to floss my teeth’ and that would be my goal for the day. If I did it, I could check it off the list and say I had at least accomplished something.

Schoutens’ first skate after months of tracking her concussion symptoms in a notebook.

 

Your teammate Brittany Bowe also suffered a concussion in 2016. Did you ever get a chance to talk about the experience with her?

We’re around each other all the time so we definitely shared some experiences. I had just recovered and made my initial comeback when it happened to her. We had a very similar timeline – concussion in the early season, trying to come back, and having recurring symptoms. It was very similar to my experience. It’s pretty special that we were eventually on a team together and got that bronze medal after we both had very similar struggles leading up to the Olympics.

How do you think speed skating in general views concussions?

I think they are taken seriously now. What happened to me and Brittany gave people a reminder that concussions don’t only happen in short track and that concussions can be very, very serious.

Do you think Olympic athletes are properly informed about the risks of head trauma?

I think they are taken seriously now. What happened to me and Brittany gave people a reminder that concussions don’t only happen in short track and that concussions can be very, very serious.

Do you think Olympic athletes are properly informed about the risks of head trauma?

I think at my level, yes. We have so many resources being on the national team. I had a trainer that was available to drive me to the hospital the same day I started showing signs of a concussion and saw a doctor that was affiliated with US Speed Skating and could give direct feedback to my coaches.

But if you’re trying to get to the national level and you’re maybe five years old and you’re just at your local team with your local coach, maybe people don’t fully understand that a concussion is an injury that’s very serious. Not everyone has the same support we do, so I think that, for those kids that are trying to get to the national level, awareness is probably not as great.

So, what I would say to those kids is, even if you don’t feel outside pressure, you have to get over that pressure that you feel within yourself.  I feel like that’s a very big hurdle to overcome to finally give yourself time to recover and put that before any other goal you have.

How important do you think it is for elite athletes to set a good example when it comes to dealing with concussions?

I think that’s really important. If I was a 15-year-old with a concussion and I was getting ready for Junior Nationals or another big competition, I might want to ignore the symptoms of a concussion and be quiet about it and act like it never happened. But if I see someone at a higher level going through the same thing and stressing how important it is to focus on recovery then I maybe would feel more supported and be able to make the right decision.

How do you hope to use your role as a CLF Team Up Against Concussions Ambassador to impact your sport?

I think both my positions – as a Team Up Against Concussions Ambassador and member of the US Speedskating Athletes’ Advisory Council – give me an approachable, role model position where anyone could feel like I’m there to look out for them and help them.

I hope that I can use my reach within sports to let people know that I had a concussion and that it ended well after I took it seriously. I hope that everyone feels like they can reach out to me if they have any questions or they can use what happened to me as guidance for making their own decisions and feel like they aren’t alone in their concussion struggles.

What’s next for you?

I’m going to continue to speed skate in Salt Lake City. I was in medical school before I took a break to get ready for the Olympics so I’m also resuming medical school. I’m really looking forward to doing some research with the orthopedics department in Utah.

Concussion Advocacy Through Kindness

Posted: May 25, 2018

My story

​​On December 15, 2015, I hit my head on the granite counter top while picking up my homework off the kitchen floor. There was an immediate onset of headaches. After a couple of days visiting the school nurse, it was determined I may have a concussion and should see my doctor. What started out as a likely concussion escalated over time to much more. Eventually, I would end up seeing some of the best doctors the world has to offer at both The Floating Hospital for Children at Tufts Medical Center and Boston Children’s Hospital.

My health significantly deteriorated between December 2015 and March 2016 with no real known explanation other than the concussion. School, work, and activities were stripped away, school days were reduced, and homework was no longer an option, yet my health continued to worsen. Following a visit to my Ophthalmologist at the end of March 2016, he found significant swelling of the optic nerve and fluid-filled optic discs, further launching a myriad of testing. It wasn’t until early April 2016 when my growing medical team found a blood clot at the base of my sagittal sinus vein. To quote one of my physicians, “it was the perfect storm”:  a concussion, high intracranial pressure and a blood clot.” Said another way, “it’s complicated”, a term that I have become all too familiar with. I was hospitalized in April 2016 to address the blot clot and pain management. I did not attend school from April – June, missing out on my last year of elementary school and all the fun activities that went along with it.  During this time, I remained in significant pain. In addition, I lost my balance forcing me to walk with a cane, spent many hours enduring tests and sitting in doctor offices, attended physical therapy several times a week, participated in alternative treatment options, was tutored to get caught up on missed academics and somehow managed to get through each day, using the mailbox of cards and acts of kindness from friends and strangers as my beacon of hope. Not to mention, I did try to enjoy a daily dose of the Ellen DeGeneres show, along with my sisters, to make me laugh. It usually worked.  “Hope” was, and is, a word we use daily. I received fantastic news at the end of August 2016 when the blood clot had dissipated, my balance returned and I was able to return to school as a proud middle-schooler in September 2016.

Although the blood clot cleared, there are lingering medical issues that remain, with the most prevalent long-term side effect of a constant headache and chronic fatigue resulting from high intracranial hypertension and post concussive syndrome. Neither can be seen to the eye, but are part of the hidden illness that have never gone away.

After meeting with many doctors at The Floating Hospital for Children at Tufts Medical Center and The Brain Injury Center at Boston Children’s Hospital, I was encouraged to get involved with something that would help replace what I have lost in terms of my participation in activities I once loved, e.g. contact sports and related activities, and to help with the associated psychological impact. After one of my many physicians had learned of my 2016 philanthropy efforts of donating my birthday money in the form of gift cards to the Hematology Clinic at Tufts, I was encouraged to move forward with the Mighty Meredith Project. Therefore, after months of discussing the purpose and potential charitable offerings, together with my parents, we decided on the following mission for the Mighty Meredith Project:

• Bring education and awareness to having a Traumatic Brain Injury as an adolescent, with specific attention on their hidden impact – both physical and psychological.

• An avenue to give back to the medical community involved in my care, both past and present and support TBI research.

• Promote kindness, especially to those who may have a “hidden injury or illness.”

Presently, my recovery is slow and sometimes stymied by complications from the TBI. While I am able to attend school and participate in activities such as Student Council and re-defining my new “normal” through the world of dance, philanthropy and the advent of the Mighty Meredith Project; some things will always remain off limits and my life has been forever altered with one hit of the head.   The hope for the Mighty Meredith Project is to bring a bit of hope, joy and education to as many people as we can and to let traumatic brain injury suffers there is a network of us willing to help at any time.

Interview with Mighty Meredith

If there’s one thing you’d want everyone with TBI to know, what would it be?

You’re not alone.

You had to adjust to a “new normal.” What are some of the adjustments you have had to make?

I used to play lots of sports but I can no longer play any sports for the rest of my life. I can’t ski, I can’t sled. I can only dance. And that was a big one because I used to play soccer, basketball, lacrosse, everything. And now it’s just dance.

Concussions are an “Invisible injury.” Was that one of the most difficult things about it? 

Yeah. It was one of the most difficult things because I would go to school and do my homework but people only saw me at school, they didn’t see me go home, go to bed, cry because of the pain. I would go to school and seem fine. Also, living with a headache constantly was hard. People would usually think, ‘a concussion! Big whoop.’ Not really- it is a lot more than that. I have lost a couple friends from this, because they thought I was lying or exaggerating for attention.

What was most important to you when you started the Mighty Meredith project?

I love being kind. I love seeing people smile when I do something nice for them. That was a big part of it. Another part of it was raising awareness for traumatic brain injuries.

What is your main goal with the Mighty Meredith Project?

I think I want everyone to understand what it is like. I don’t want them to have to go through it but I want everyone to understand what it is like to live with a hidden illness. I want everyone to be kind to one another because you never know what is going on behind the scenes.

Are there any short-term goals for Mighty Meredith project? What do you have planned this summer?

We did a bake sale last year. We are doing another one this year. What I, personally, really want to do… when I was sick… I would watch Ellen every day, and I have always wanted to be on the Ellen Show.

How does it feel, knowing that you are other people’s strength as Mighty Meredith?

It is nerve wracking, but it is also feels really good. When I was sick, I didn’t really have anyone I could look up to who’d been through this.  I was just kinda figuring it out by myself. If I did have someone, I think it would be a lot easier. Now that people can see me and see that they are not alone and that they have someone that knows what they are going through. It’s good.

Was there one specific talk that made you step back and realize, whoa this is something?

I have done a couple. Some with local Daisy-Brownie troops, one with the student council at the high school. But there was one, at a local gym in town, after the fundraiser was over, I stood up and spoke and everyone started to cry. And I realized then, that this is big and this is what I want to do. It’s cool.

What was it like to meet Chris Nowinski and the CLF staff?

I have wanted to meet Chris Nowinski ever since I heard about the CLF and what he was doing to help others with TBI’s and raising awareness of concussions. I thought our scheduled meeting would just be involving Chris, my mother and I. I then turned the corner and it was like I was a celebrity walking the red carpet. The entire staff of the CLF was right in front of me. My heart was pounding with joy and my mouth hurt from smiling so much. The fact that the entire team took time out of their busy day to meet with me made me feel overwhelmed with love. That was the best day ever! Thank you to all the CLF staff for meeting with me, and to Chris for making me, a girl who once struggled with finding her new normal, feel like I was a part of something big.

Hockey Was My Identity: Audrey Warner’s Story

Posted: May 23, 2018

“You go to Harvard?” they said.

“Yes, I play hockey” I replied.

This has always been my immediate response up until this year. Now, when asked this question I say “yes” with a very apparent hesitation. But why the hesitation? The answer is that hockey was my identity. I was not a student at Harvard, I was a hockey player at Harvard. Hockey was my passion and hockey was my life. Every daily decision and sacrifice I made for years was in the best interest of me as a hockey player –  whether that was getting up early to skate extra, shooting countless extra pucks, working out more, getting my rest instead of hanging out with friends or always eating the healthiest option. I will be one of the first to tell you that all of this can change in an instant.

I want to offer each and every one of you reading this a challenge: don’t let your sport define you. Everyone laces up their skates, ties their cleats, or buckles their helmet for the last time at some point in their life; unfortunately for some, it happens much sooner than others. Furthermore, unfortunately for some, it is not by choice.

Up until February of this year, I was just a Harvard Hockey player from Shaker Heights, Ohio. Growing up, I even left my home town to go to Minnesota. My friends knew I only left them to play hockey. I dropped everything to be a hockey player my sophomore year of high school. I left my family, my friends, my school and my hometown to be the best possible hockey player that I could be. I put every ounce of me into the sport that I not only loved, but that defined me day in and day out because I let it.

If I have learned one thing from suffering traumatic brain injuries, it is perspective. When a doctor looked me in the eyes and told me that I should not go back to doing what I love, I was heartbroken. Not only was I heartbroken, but I definitely did not know who I was without hockey.

I will never forget the day my dad looked at me and said, “in life we do not get to choose our cards, we only learn how to play them.” We can look at a career-ending brain injury as stripping us of our identity or we can use it to help redefine our identity. Words cannot express my gratitude for what the game has given me and taught me over the years. It has put incredible people in my life. Hockey undoubtedly is and will be a huge part of my life, always.

I am not going to tell you that walking away from your sport is easy. To this day, my eyes glisten as I walk across the bridge to the rink to support my teammates every weekend, but I cannot help in doing so with a grateful heart. I will hold on to the memories, the lessons and the friendships that hockey has given me forever. I would not wish for even a second of doing what I loved back. I truly believe that everything happens for a reason, even when we ourselves are unsure of the reason.

Where would I be today if I had not been a hockey player? The answer is not at Harvard.

Lastly, I would not have the opportunity to be a part of this great community and the Concussion Legacy Foundation that is making the best of life’s circumstances.

“It’s Fine, I’m Fine”: Stephanie Everett’s Story

Posted: May 11, 2018

“You are what you’ve overcome,” reads the military dog tag that hangs from my neck. Today and every day, it is a symbolic and physical reminder of how far I’ve come in the three years since choosing to apply to Dartmouth College instead of West Point.

With one concussion under my belt from my final high school baseball days, I walked onto the Dartmouth varsity soccer team as a goalie. Two weeks into practice, I was knocked on the temple by a stray shot I didn’t see coming. Exactly one year later, I took a ball to the nose during a scrimmage. All three times, I felt fine – just “shook it off” and continued with practice. It wasn’t until the following morning that tremendous pressure would fill my head, signaling something was wrong.

As athletes, we are conditioned to think we are invincible. We have to perform at 110% every time we hit the field, and are pushed back into playing before injuries (to the brain or otherwise) are fully healed. I fell victim to that competitive nature, returning to play when I was “good enough,” not good. There was no doctor mandating I stop contact sports. I was the only person who knew how my head was doing, and was the only person who could decide my future.

I started to feel more insecure than ever. I was going through the motions, listening to the same prognosis from doctor after doctor, and sitting on the sideline every day at practice. I was unhappy and unfulfilled, but unable to admit it to myself. I thought being an athlete was everything. As a ballerina, soccer, and baseball player from the age of four, “athlete” was the only identity I’d ever stuck with. But after nine months of school, waking up every day feeling the same – or worse – than the day before, I started to come to grips with the decision I knew I had to make.

Little did I know that trading my cleats in for character shoes in the spring of my sophomore year would finally bring me home. Theater was the last activity to be cut from my schedule when I committed to college soccer, but the first one I returned to after quitting. I took my first college theater class that spring, and fell so in love with it that I found myself interning this past fall at Northern Stage, a regional theater in Vermont run by one of Dartmouth’s professors, Carol Dunne. It was during this internship that I learned about marketing, development, and education in the theater sphere, and got my first professional acting contract. Dunne pushed me to pursue writing in my free time, knowing that I was still struggling with Post-Concussion Syndrome (PCS). Though I truly couldn’t think of anything scarier, I agreed to dive into a one woman show on my own experience with head trauma… “my diary – staged,” as the play begins.

For over a year, by that point, I had practiced shutting the bad out, afraid that sinking into the negatives of PCS would make my recovery even longer. Writing this play, ironically titled “It’s Fine, I’m Fine,” became a way for me to finally put into words everything I couldn’t before.

But it’s not just a play about a headache.

“It’s Fine, I’m Fine” is about the invisible. Anyone who has dealt with TBI and PCS knows that our symptoms aren’t our only trouble, and we certainly know that they’re never conveniently-timed. “It’s Fine, I’m Fine” is about transitions and self-discovery. About losing direction and letting go. About relationships and sexuality. About mental health and the therapist my parents don’t know exists. It’s an ode to the twists, turns, and deep dives in adolescence that we mask with “I’m fine.”

Maman’s Cooking

When Maman – that’s French for Mom – cooks,

you best stay out her way.

By the time I wake on Saturday mornings,

the smells slipping through the

space under the door

are a delightfully confusing mix of

roasting garlic and

Vermont maple syrup.

She’s up at the crack of 9am to begin that evening’s meal

just as dad finishes breakfast.

By the time I reveal myself,

she is two countertops-deep in

the dish of the day.

Clanging pots and pans,

she doesn’t care –

if she’s up,

so, too,

should the world

be.

From the sunporch

comes the banging of drums and African dialects.

Music from

Senegal,

Ghana,

la Cote D’Ivoire –

in this, Maman does not discriminate.

And so we have Saturday morning:

sound waves and scents

wafting and weaving

together in

sweetly-savored harmony.

But now

when memories like these pull me back home,

I can do nothing but sit and stare –

knowing that full meals of this

will end in misery.

Like dessert on a too-full stomach,

Maman’s cooking is too rich,

too heavy.

Bogging down my foggy mind.

No,

rabbit food will have to do.

Sometimes I fail, and I indulge.

Feeling, in those 20 minutes

before my new plateau derails,

that everything is back to normal.

And I am just home

on a Saturday morning…

 

My friends, my family, my community – they all know me as the confident, put-together girl who bounces from one extracurricular to the next with apparent ease. This show is my way of taking the mask off, even if just for an hour. This show is me admitting that sometimes I’m scared out of my mind, that sometimes I’m weak, that sometimes I cancel plans to go home and cry on my dorm room floor. The state of my head is my first thought in the morning, and most often the determinant of my bed time. I feel trapped by the things I have to do, or the food I have to eat, or the events I have to miss just to keep the muscle tension from getting worse than it is to start. In the show, I reference the exact number of days I’ve been dealing with the symptoms of my third concussion. When I was writing, that number was in the 300s. A week ago, that number doubled.

But I am a happier person than I was at 300, and miles above where I was at 0. I found my way back to theater, and know wholeheartedly that it is what I want to pursue for the rest of my life. There is no better feeling than telling stories night after night that matter, that change lives. If my show makes just one more person think twice before making assumptions, I’ll be happy. I know this is what I am called to do – finding the silver linings, inspiring compassion, and making the invisible visible.

My Head Hurts: B.J. Catalon’s Story

Posted: April 6, 2018

I smile a lot, but I’m afraid. I laugh but I’m terrified, I can’t differ the truth from all the lies. To chase a dream, where you hear the fans scream, stands filled with jerseys of ya damn team. A man’s game, a man’s pain, sacrifice my all, why should I feel this shame? War scene, you’re a friend to me battling against our enemy, armor shield body guard, but my head is losing memory.

Never forget the memories of this wonderful sport, even if I’m older and all out of sort, inches away but came up short. What’s going on inside my head? Who are the voices I hear? I try to imagine but the images disappear. Search through iCloud, but nothing’s quite clear, is this something for me to fear? Don’t complain ‘cause men are tough, life is hard, the game is rough, the crazy thoughts, my brain is stuffed, is this God’s Plan, I need an angel’s touch, left behind, I was just angel’s dust.

This must be a mistake, I was meant to be great, losing my balance due to this shifted weight, stumble sometimes and can’t walk straight. Even though it’s for protection, my mind is like a weapon, I believe my whole life that this was my blessing; so why the rejection or the feelings of severe despondency and dejection. In other words it’s depressin’, to play the game my whole life and finally get taught the lesson. Not afraid to fail, not afraid to lose, didn’t know the scars would still bruise. I smile, inside me is still that little child, whose joy I haven’t felt in a while.

Round and Round, my head pounds the sound, of my heartbreak as my head mounds the ground. Telling me I’m up next and couldn’t be more closer, Doctors visit just to tell me that it’s over, tried to cry but I was given no shoulder, missing old days cause I hate getting older. I smile a lot, but I’m afraid. I laugh but I’m terrified, it’s something going on with what’s between my eyes.