Finding a Mission After Losing a Son

Posted: January 5, 2016

Below is a full transcription of Graham Thomas’ interview:

On his son, Alexander:

Oh, Alexander loved Hockey. He played a lot of hockey growing up. Age seven through 16 at a very elite level here in the United States and wasn’t a huge checker but absorbed many hits over the time period. He had many, many blows where guys would crush him into the boards. He said, “Dad, I blacked out during the game,” and as he says he blacks out I’m like but you weren’t laying on the ice. He gets diagnosed, he’s out for three weeks and then gets allowed to play and while he’s playing he seems okay but at the end of that weekend was when he decided to take his own life.

What is Graham’s mission?

We felt invincible. We had all of the imPACT testing, we had all of the pre-screening as far as concussion goes but what we didn’t know were the symptoms of a concussion. I believe our foundation, the Untold Foundation, and my son’s legacy is that we have to make sure that everyone is educated properly. In partnership with the Concussion Legacy Foundation, we’re pushing very strong to make sure that everybody in America, or the world, understands what a concussion is, what are the symptoms, and what do you do.

 

My Legacy: Eric Winston Pledges His Brain

Posted: December 23, 2015

As an outspoken advocate for player health, Winston made headlines this season by calling out the shameful execution of concussion protocols by the St. Louis Rams on November 22 when quarterback Case Keenum took a vicious hit to the head and struggled to get up off the ground. Showing clear signs of concussion, Keenum was not removed from the game and evaluated, but instead dangerously stayed in the game for his team’s potential game-winning drive.

Winston is taking his commitment to player safety a step further. He has pledged his brain to the Concussion Legacy Foundation for CTE research when he passes away as part of the My Legacy campaign. So what’s it like being the president of a union, how does he view concussion awareness among NFL players, and what kind of legacy is leaving by pledging his brain?

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

Research on this issue is moving at such a fast pace, but each additional piece of scientific data helps inform players about the risks and allows us to make decisions about making the game safer. Ultimately, I want to be a part of that process that helps the next generation of athletes at all levels have a greater understanding of what science says about head trauma and hopefully that will lead to better treatment and prevention.

What do you want your legacy to be?

First, I want to be known as a player who did the right thing and approached my career in a way that helped other players. I love the game of football and all that it has done for me and my family, but when I look back years from now, it is important that other players appreciate the positions we are taking to make things better for them. Hopefully I’ll be using my brain for a lot longer – I’m hoping I get another 60 years out of it. But if contributing to this research can just help move the needle some, then I will leave the game better than I found it. I really believe in that.

 

Cincinnati Bengals player and NFL Players Association President Eric Winston has pledged his brain to the Concussion Legacy Foundation for research. Others can do the same. To learn how to pledge your brain, click here.

I’m sure your role as President of the NFLPA has given you a perspective that you might not have had before. What has that experience been like – what’s the most important thing you have learned?

Whenever you have a responsibility like this, you realize how much effort and work it takes to make even minimal gains. I have always felt that I have a responsibility to our players – past, present and future – but when you’re president of the union it adds that weight to it and people look to you to continue a legacy of building upon what has been done in the past. The challenges are very real, but I learned that the best way to improve things for the lives of players is to be uncompromising about certain principles, and health and safety is one of those. At the end of the day, I want to leave this union better for the next guy that comes in, and I think that’s really what it’s always been about. We should be proud of what we have accomplished over the past few years, but we also know we have a long way to go.

Do you think incidents like the Case Keenum concussion playing out in front of a national audience will help spur action in the right direction?

If I have my way, then yes, I hope it will change something and inspire additional improvements. That’s the thing – it’s not just about Case, it’s always about being better. We have made important changes and to the NFL’s credit, they have been willing to work with us on those changes. At the same time, we know that the main reason why they want to work with us on these issues is because we hold them accountable to certain standards. We want the NFL to now hold the teams accountable to the protocols that are in place. Accountability and responsibility cannot fall squarely on the shoulders of players; the same standards that apply to us should apply to the teams, and to everyone. The trainers are professionals, the doctors are professionals, everyone in this league is a professional. We want greater accountability to the hard work and improvements that we have worked together to implement, otherwise it means little. There’s no such thing as a perfect system. There are always going to be things that we fix, and we keep getting better at, and that’s what we’ve got to keep doing.

Read the USA Today article covering Winston’s pledge to the Concussion Legacy Foundation.

Imagine you were a rookie coming into the league again. What would you tell the 22-year-old Eric Winston as he was starting his career?

I could probably write a short book about everything I would tell myself both on and off the field. Over the last ten years I’ve learned so much. In a lot of ways, I’ve become an adult. When I say adult, I mean a real professional. What it means to be a pro, to carry that responsibility. I’m married and have a family now, so when I look back to when I was 22, I look at myself almost like I was a silly kid. While some of that was fun, at the same time it’s almost like I was a totally different person. So in a lot of ways I wish I could have sped that process up. Because you look back and say “oh man, if you were just a little bit better of a pro” – so I would tell myself to learn what it means to be a pro as fast as possible. Because it took me a little bit, and once I got it I think I really ran with it.

How much have players’ perceptions of concussions and head trauma changed since you first entered the league?

I think especially those in my class who were drafted in the mid-2000’s and played for a long time, our careers have run alongside this concussion legacy. When I came in the league, it was still at the point where you might hear, “here’s some smelling salt and get back out there.” There were still lots of big hits over the middle. ESPN was still rolling “Jacked Up” when I was in the league. So a lot of that was still going on. We didn’t understand a lot of it. And in the mid-point of my career, we’ve switched and we’ve changed, and started to understand this whole thing. Even in the last three years it’s evolved. The guys that are coming in the league now, and are two or three years in, are way different than the guys that are 10 and 11 year vets. No one ever wants to leave a game due to injury and risk losing their job to a replacement, but guys these days are willing to risk it in the sense that they know this isn’t a sprained ankle. This isn’t a hurt knee. Their outlook is totally different, and it’s because of this awareness and all the information we’ve been pushing. And that’s a very good thing.

Do you think NFL players are properly informed about the risks of head trauma?

I think we have done a great job of making the information available to players. At the end of the day we want to make sure we are fully transparent about what we know. It is scary to think how fast information on this issue is flowing and often times it is hard to separate the fear from realities of what is out there. When I first got in the league no one was talking about anything. Now, there are movies, documentaries and books coming out, there’s so much information out there and that’s a good thing. Players need to hear from us, namely the NFLPA, about what science says about the risks and then players have a choice to make about what to do. In the long run, we know that embracing, supporting and funding research can help us learn more.

To learn how to pledge your brain for research, click here.

My Legacy: Gary Fencik on the Future of Football

Posted: December 22, 2015

Now 61, Fencik still lives in Chicago and serves as a Partner and Head of Business Development at Adams Street Partners, a global private equity firm. True to his character, Fencik’s forward thinking has provided one more line for his resume: future brain donor. He has pledged his brain to the Concussion Legacy Foundation as part of the My Legacy campaign, to be studied for Chronic Traumatic Encephalopathy (CTE) after his death.

In this interview, Fencik spoke about his playing days, his thoughts on concussion and CTE awareness, and the legacy he hopes to leave by pledging his brain to research.

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

If there is some contribution that I can make to the research that might lead to improving the chances that other athletes in the future don’t have a problem, I’m proud to do that.

Do you think the idea of brain donation is catching on among athletes?

I think there is still a lot of awareness that needs to be done. I don’t know how many players are really aware that they can make this contribution. Or you’ll wait until it’s too late, you pass away, and then no one knows that you wanted to make a contribution. So it’s something that I’ve given thought to. It reminds me a little bit of when we were playing and going on strike. When you’re in your twenties people are talking about how you need better retirement benefits, and you’re going, “what are retirement benefits? That’s something that’s going to happen to me way down the road.” I think it’s pretty easy just to delay that decision. Even though you might want to make a contribution, you say you’ll do it “someday.” I’ve just reached that point where “someday” is today.

What do you want your legacy to be?

I’ve been very fortunate to have a great life. To go to Yale, certainly you don’t think about the NFL when you go to an Ivy League school. So to have a great career, win a Super Bowl for my hometown team, I feel very fortunate. Playing football and just having a great experience with so many fantastic athletes, I’m very thankful for that. And I think as you progress into your career and toward retirement, you start to think more about making a contribution back. And I would hope this will be part of my legacy and my contribution back.

During your NFL career, did you have an eye on making sure you had a plan after your career?

I think the players of my era did not have the benefit of free agency, and so most of my teammates worked in the offseason, or went to get another degree. Bob Thomas, who was our kicker, is today a Supreme Court judge in the state of Illinois. Alan Page, a Hall of Famer for the Vikings who finished his career in Chicago, today is a Supreme Court judge in Minnesota. I had a teammate who became a dentist. You had to work, because the dollars weren’t sufficient where when you were done with your playing career, you’d be in a position to potentially not have to work the rest of your life. So things were quite different back then.

I also had the benefit of having almost a parallel life where I had my Yale buddies who were going to business school, law school, and med school, and recognizing that at some point when this career ended, that I was going to need another degree to pursue whatever I was going to do after football.

You are a prime example of a successful transition from the NFL to a post-league career. What has allowed you to make that transition so smoothly?

Well, I don’t know that I felt it went smoothly at the beginning. I think the difference is that when you’re in your twenties and everyone is switching jobs, it’s very natural to do so. But if you are fortunate enough to play until you’re 30 in the NFL and maybe you have a wife and a couple of kids, the idea of taking three to five years to transition and see what you want to do when you ‘grow up’ is a different path, and a very lonely one. I was fortunate that I did go to business school while I was playing, and while I had some idea of what I wanted to do, as I look back, it still was a difficult transition.

What do you miss the most about playing in the NFL?

You have a goal every week that you’re either going to be good enough, both personally and as a team, or you’re not. It’s that immediacy and that certainty that you are going to play at noon, and by four o’clock you’re going to know whether your team was good enough that day. You rarely see it in business outside of sports. Things get postponed, decisions get delayed, it’s just much different than the certainty of a decision in the NFL.

I think one of the other things I miss is just being paid to work out. [Laughs] Now, I might work out after I spend a full day or travel somewhere, whereas in the NFL, they’re paying you to work out and stay in the best shape of your life, and you’re just having fun.

What do you miss the least?

I don’t miss the injuries, I don’t miss the aches, and I don’t miss icing my knees after every practice. Every single practice from the time I was injured in about my fourth year to the time I retired eight years later, I had to pack my left knee with ice after every practice as the regimen of staying in shape. I certainly don’t miss that.

How would you describe your style of play?

I was a wide receiver at Yale, so the transition to defense was a challenge. I learned through watching other players on the team, and from Doug Plank in particular, who I played with for six years. He really helped me become more aggressive. I think that at some point, most players stop thinking and simply move to a different gear, and I was fortunate to get that opportunity to do so. I certainly was known as a pretty good hitter, but I would say that my success in the NFL was predicated on having a defensive coordinator in Buddy Ryan who put a high degree of importance on playing smart. So I definitely saw myself as being a smart football player.

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?

No. I never gave it any consideration at all. I only had one concussion where I had to leave the playing field. I hit [Hall of Fame running back] Earl Campbell, and it wasn’t even a particularly good hit, but I had a 33-inch waist and Campbell had a 34-inch thigh. I came back and finished that game, and I think I tackled him or tried to tackle him the last three plays of the game, and although I got credit for the tackles, I was on the bottom every time. But I didn’t have any repercussions after that game. I can’t really recall that I had headaches after the game. So I feel very fortunate today.

Do you think about the potential effects of head trauma a lot now that you have retired from the game?

Going forward, all of us are concerned not about the shoulders or the replaced knees. Everybody’s just worried whether or not there may be a time where you start to develop symptoms as a precursor to CTE. I would say that there was a clear demarcation line in my life where my teammate Dave Duerson died by suicide. After that, there was no hiding or being evasive about the potential impact that this could have on the quality of my and all of my teammates’ lives going forward.

It struck me to see Mike Ditka say earlier this year that he wouldn’t let his hypothetical child play football. Your team, the Bears of the mid-1980’s, is one of the best NFL teams of all time, and these are football lifers who are now reconsidering the place of football in their lives. Is that a strange feeling?

I’ve talked to a lot of my teammates and a lot of people who I’ve played against and with, and I don’t know that anybody wouldn’t do it again. But my hope and expectation is that there’s going to be better protocol and better procedures to increase awareness. We’ve got to find the best way to modulate – you know you’re not going to eliminate them – but hopefully reduce the multiple concussions that could lead to significant problems in your adult life. And unfortunately, for some athletes it’s impacted them even sooner. And that’s really a tragedy.

Your daughter, now a college student and soccer player, has really dug into the issue of concussions. What has that been like for you?

It’s extraordinary to me that my daughter, who I thought was going to be an English major, is a neuroscience major now as a result of an internship with the Concussion Legacy Foundation. It completely changed her outlook in terms of what she wanted to focus on in college, and I’m very proud of what she’s doing. So I’m glad it had such a positive impact on her. I think the more people are educated in terms of concussions, they’re just going to make smarter decisions, whether it’s for themselves in sports, or for their children.

Does having kids of your own change your perspective on safety in sports?

When you talk about youth sports, I have a really high degree of confidence that people are getting smarter and technology is going to improve the ability to monitor these injuries. Instead of applauding and cheering pee-wee football players hitting one another, I think there are smarter ways to go about enjoying yourselves at a young age without having to put pads on. I don’t know anyone who, at the age of 8 or 9, said they aspire to play left guard. [Laughs] I coached flag football for my son and my daughter. I think with the fun of football, there’s so much you can do –– learn the rules and the importance of a huddle, and teammates, all of those things you can do without putting pads on.

To learn how to pledge your brain for research, click here.

Finding Bravery: A Day-by-Day Journey Through PCS

Posted: December, 7 2015

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

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

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

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

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

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

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

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

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

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

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

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

My Last Concussion in Hockey

Posted: November 30, 2015

We were losing 4-1 with less than five minutes left in the third period.  The puck had been in our defensive zone. When my team gained possession, I followed our defensive zone break out and swiftly cut across the neutral zone ice, preparing to receive a pass from one of our defensemen.

The pass went off without a hitch, but its perfect execution didn’t receive such a successful follow through.

I was laying face down on the ice before the puck even touched my stick.

I had been blindsided, a hit from behind.

I was violently thrown to the ice. The force created an enormous shock to my system, and my immediate reaction was one of complete and utter fury. My body felt like it had been attacked. I had never been so physically and mentally unprepared for such a forceful jolt to my body.

It shook me to my core.

I immediately heard what sounded like those extraordinarily violent, ear-piercing violin chords in horror films at the climax of a life-altering scene.

It was fitting for what was to come.

I was able to get up on my own and, after a few moments of catching my breath on the bench, I was back out on the ice playing. Surely a standard old routine penalty like that wouldn’t merit two years of suffering, wouldn’t abruptly and unjustly bring my hockey career to an end, wouldn’t lead me fighting tooth and nail to graduate on time, wouldn’t cause me to take a leave of absence from my first big job, wouldn’t create pain I didn’t know existed, and certainly wouldn’t send me traveling all over the continent to meet with confused and disagreeing doctors. Surely it wouldn’t lead me down a dark road of depression, anxiety, self-doubt and general existentialism.

I had never had a concussion before, and so my initial thought-process was one that consisted largely of lying to myself.

I tried not to give too much weight to the fact that my vision was fuzzy as I glanced around the locker-room, slowly undressing my gear while attempting to make sense of whatever it was my coach had to say after the game.

I tried not to worry that my head felt ten pounds heavier than normal, or that I couldn’t focus on anything my teammates were saying while we were eating our post-game meal.

Instead I told myself I probably just needed to hydrate and sleep it off, that I’d wake up and feel 100% again.

I had taken bad hits before, I thought. Be tough.

And I had seen other athletes play through it before, so I should too, right? Just pop some Tylenol, heat your neck and suit up for game two the next day.

Finishing that game feeling just as awful as I had when it started still wasn’t enough to convince me I should take a step back. Instead, I naively told myself another night’s rest must be what I needed. I upped my water intake just to be safe and took more Tylenol too.

The following morning, day three post-hit, I suffered through my team’s morning lift in the weight room, telling myself that the grogginess I was experiencing must be because I hadn’t had enough coffee. It was just like any other Monday, right?

Instead of giving any meaningful thought to the potential repercussions of continuing to play with a concussion, I took another round of Tylenol just as I had the day before and suited up for our on-ice practice.

I had never missed a practice or a game at Yale before, and I told myself now was not the time to break that tradition. Being only three months shy of the culmination of my career as a competitive athlete, I pushed on regardless. It was the bitter conclusion to a lifetime of hard work and dedication to a sport I loved.

Time was precious. I had worked too hard to take a break, to rest. So I battled through practice even though it was all so clear that something was off.

It had been clear from the moment I got hit. It was so clear but I did everything I shouldn’t have done anyway.

This self-inflicted, intuitive denial is a thought-process I imagine many athletes have experienced and will continue to experience so long as they choose not to take concussions as seriously as they should.

I wish I had.

A Mom on Returning to Learn After Concussion

Posted: November 23, 2015

Concussions are by far the most frustrating and scariest injury I have witnessed as a parent. As a healthcare professional I am passionate about educating athletes and their families concerning minimizing risk and maximizing recovery. While there are many parts to the concussion recovery process, for us the return to school with protracted recovery was often the most stressful and energy intensive.

I was very fortunate in the return to school arena of concussion management as my children had an advocate in the high school who listened to my concerns, was willing to ask questions and provided support. This doesn’t mean it was easy. At the time, the knowledge and protocols on return to school and concussion recovery were not as available as they are now. Most of the teachers were very cooperative and wanted to help but were not sure how to approach the problems we faced. To them my student looked healthy; they were laughing at their locker with their friends and chatting in the halls. Why could they not get their homework done or take a quiz? Why did they put their head down in class?

I learned that after some rest time at home, my teenagers had to be back in school even though they were not ready to focus and learn. There were advantages to being in that environment without the academic demands. They needed the social interaction, exposure to the material, the normalization of their life.

I encourage parents to have a constantly evolving return to learn plan. Follow the recommendations of your healthcare provider and keep the school nurse in the loop. They can be a vital member of the recovery team. Every child and every concussion is different. Some students never miss a beat with their academics but many others struggle, so you need to be ready for a challenge. Gradual reintroduction worked best in most cases for my children. Ask that they be allowed to take frequent breaks with permission to leave the classroom and to attend classes without having to take tests. When they can take tests, they might need extra time because of the challenge of focusing. When necessary, work with the healthcare provider and school to get accommodations.

For a student who is struggling it can be a balancing act. Increasing homework time may decrease their tolerance for being in school. Have them attend partial days without tests. Choose classes intentionally. Does your child do better in the mornings but have headaches in the afternoons? Do they need to attend math every day, as that is a subject that builds on its content? Can they skip the current book the English class is reading now and make it up later when they feel better? Maybe they can handle the English and history, but math is too much and needs to be put aside to be tackled with a tutor and extra time later in the recovery process.

My recommendations: work with your healthcare provider and the school staff. Be on the same team. Prioritize. Ask questions. Be creative with solutions. Most importantly, observe and listen to your child. Watch for signs of frustration, fatigue, and headaches. Listen to them for clues on what triggers physical symptoms as well as looking for signs of social isolation and depression.

To see my normally active, happy children struggle with the challenges of concussion and extended recovery processes was a tormenting challenge. Creating a plan and building a team helped tremendously. We survived by celebrating the little successes, dealing with the setbacks, and counting our blessings.

How Socializing can Help Fight CTE

My husband Mike Adamle and I constantly remind the people we engage with as part of The Mike Adamle Project: Rise Above that eating right and exercising are two of the more obvious and important components of a healthy lifestyle. But did you know socializing and staying connected with friends and family may also help your brain fight against Chronic Traumatic Encephalopathy (CTE)?

Dr. Robert Stern, Director of clinical research at the Boston University CTE Center, says staying socially engaged wires the brain in a way that may help slow down or even prevent it from getting damaged. This can be as simple as picking up the phone to call an old friend, joining a book club, or any other method of maintaining a social network. These connections are crucial in helping the brain protect against degeneration.

Mike and I have experienced the power of socialization firsthand. Watch the below video to learn more about how staying social has helped improve Mike’s mood, energy level, and overall mindset as he lives with what doctors believe is probable CTE.

 

What you don’t want to hear while battling PCS

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

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

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

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

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

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

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

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

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

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

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

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

What can you do to help spread awareness?

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

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

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

Educate others.

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

Don’t be a silent bystander.

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

“Experts” aren’t always right.

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

Be sensitive and supportive.

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

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

The worst is far behind me

Posted: September, 2017

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

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

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

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

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

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