My Legacy: Football, CTE and Unintended Impact

Posted: May 12, 2016

One person in particular is developing the discussion beyond the professional level. This person, Jim Proebstle, is uniquely situated to tell the powerful story of a man who struggled dearly with dementia as a result of concussions and repetitive brain trauma in his athletic career. It is the story of a man who would never make the headlines of the sports section because his name wasn’t widely known. It is a story of rapid decline, radical transformation, and eventual diagnosis of CTE. It’s the story of Jim’s brother, Dick Proebstle.

Jim’s closeness to his brother provides an intimate perspective on the world of concussions and CTE. Most stories offer little information about the personal lives of those suffering before symptom onset. Jim, who himself won a national championship ring as a tight end for Michigan State in 1965, has published three books and is an award-winning author. In Unintended Impact: One Athlete’s Journey from Concussions in Amateur Football to CTE Dementia, Jim provides a masterful portrayal of the tragedy of his brother’s life. We spoke with Jim about his book, his brother, and the past and present state of concussion awareness.

What was your relationship with your brother like as a child? How did it motivate you to write Unintended Impact?

I wanted to tell the whole story of concussions and the development of what can happen from repeated blows to the head. My brother and I played grade school, high school, and college football together. He was my older brother by two years, and an extremely talented athlete. Dick was a classic overachiever in everything he did, whether in the classroom, sports or whatever. I really looked up to Dick as a leader. How could this all-American young man end up with a life that contradicted his work ethic and fundamental value system? I wanted to tell his story, as I knew there were other Dick’s out there.

I started writing Unintended Impact right after Dick died. I was in a unique position as we were together in grade school, throughout adulthood, and ultimately to the point where he died. I couldn’t find any reporting that told the whole story of CTE. All I found were bullet points, the last chapter, so to speak. I felt I was in a unique position to speak about the progression of CTE from beginning to end.

What was the first thing you noticed that made you realize Dick might have a problem?

The migraine headaches came first and started right after college. Dick never flunked out of anything, but as a result of the headaches, he flunked out of law school at the University of Minnesota. He just simply couldn’t concentrate. These continued throughout life and we never knew the cause. It was his wife, at the time, that said, “It’s those damn concussions.” And she was right. The significant personality changes, however, didn’t start until his late 30’s.

In the beginning it was just “one-off” behavior quirks- whether it was aggressive behavior, arrogance, or memory issues. With time his interpersonal skills started to drop rapidly. Even his language suffered. From the outside, we thought, “What is wrong with Dick? He seems like kind of a jerk.” The community started to respond negatively, as well, as he fought back. We didn’t know about CTE—these were behaviors that we saw as personality issues, not that something was wrong with him mentally, or part of a disease. Instead we judged him. Looking back, that’s one of the things I regret most. However, Dick and I remained close, and my wife and I were probably the only people that he would trust.

At what point did you say this is a medical issue and we need to seek professional help?

When Dick was about 40, I thought it was odd that when we would visit him he didn’t have any friends. We grew up in the Canton area where he lived. That’s when we said this just doesn’t make any sense. Dick wasn’t the life-of-the-party type of person, but he was a nice guy. He was helpful and generous. He used to have friends, and somehow they just all went away.

Many years later, my dad told my wife, Carole, on his deathbed, that “Something is wrong with Dick.” That was a very declarative statement. We started to pay more attention. But Dick lived in Ohio and we lived in Chicago and it wasn’t always easy to keep track of the changes.

Later in the 1990s timeframe was when Dick’s situation really went off the wagon. The whole value system we grew up with, including what you believe in, what’s important to you, and what you fight for just left him completely. And along with that came additional behavioral issues; slurred speech, balance, significant memory issues, paranoia, judgment and problem solving issues, more aggression—that kind of stuff.

There was nobody telling us that this was a disease—that there was a reason for his decline.

What triggered my mind as to CTE was the Dave Duerson death. We were living in Chicago and the story was in the newspapers. I read it and looked at Carole and said, “That’s what Dick is suffering from.” We quickly became connected with the Concussion Legacy Foundation. At that time it was called Sports Legacy Institute. Everyone was enormously helpful to the family. Dick’s son, Mike, called Chris Nowinski and explained the situation. At that time Dick was in a memory center and long-term care facility. We knew he wouldn’t make it through the year. Even they didn’t know about CTE. Less than a year later, he died.

You played for a national championship team on Michigan State in 1965. What was awareness like in those years regarding brain trauma?

It was different back then, first of all, no one ever called it “brain trauma.” The idea of a concussion was just a temporary disruption to your ability to play—a ding. The treatment was to take someone out of the game or practice and give them a moment to collect themselves—maybe some smelling salts. The person in charge of your wellbeing was yourself because within a short period of time after getting your “bell rung”, the position coach would ask you, “Jim, are you ready to go back in?” And of course, if you ask a player then if he was ready to go back in the game, there was only one answer: “Yes.” We had no education about concussions or what we should do if we got one. We were in the “dark ages” from the 50’s through the early 2000’s.  It wasn’t until about 10 years ago that our knowledge changed and our behavior as administrators, coaches, and players slowly started to change with it. We still have a long way to go.

Are there any specific concussions that you remember from your playing days?

Several. Three out of the four that come to mind were in practice—two where I was knocked completely unconscious, one during the game. I was a tight end running a drag route against the flow of the action. I caught the pass in the air but the linebacker hit me perfectly and took out my legs as I went up for the ball. The first thing that hit the ground was my forehead—hard. I was very proud of the fact that I didn’t drop the ball. I was lying on the field flat on my back with the ball on my chest. They took me out of the game, but was back with the next series of downs. Playing hurt was expected. What made the papers was the catch, not the concussion.

What is your opinion about concussion-related injuries for younger players?

I am not in favor of youth tackle football. I think we should start by playing touch football or flag football until high school, at which point we would have an option—an informed choice to play tackle football. I tell people that the only thing I learned playing football at the age of ten was that I was bigger than everyone else. I didn’t learn anything about the game that I couldn’t have learned playing flag football. In fact, I may have learned more. There’s no question that toughness is a requirement for tackle football, but so are so many other skills such as strength conditioning, quickness and footwork, blocking foundation, eye-hand coordination, angle of pursuit, teamwork, execution, timing and discipline, etc. All of these can be learned without the tackle element of football. As a player develops in the game they can make a more informed decision about whether they want to continue with contact football.

You have pledged your brain for CTE research. Could you please speak about your decision to do so?

My brain will obviously be of no use to me at that time. It makes perfect sense to me that a donation can create value for someone else and/or for the sport you love so much. I really didn’t have to think about the decision for very long.

What do you want your legacy to be?

An offensive lineman’s first job it to protect his quarterback. Dick was my quarterback. That says everything to me. Dick always had my back. He always took the high road when I was taking the low road. Some decisions that I would have made without his advice would not have been good decisions. My legacy through Unintended Impact is to honor Dick in the same way that he honored me in life. I would like my legacy to be a meaningful effort contributing to the educational component surrounding concussions. I think football is a great sport and I don’t want football to go away. I believe that player safety and football can co-exist in a sport that breeds excitement. Everything evolves and so will football.

My Legacy: The Story of Legacy Donor Tom McHale

Posted: May 10, 2016

Below is a full transcription of Margy and Marnie’s interview:

The McHale family:

Margy McHale: I’m the youngest of five and then Tom was fifteen months older than I am. We’re really close to in age – there’s less than eight years between five of us. Tom and I were extremely close. Many people I think thought we didn’t even have other brothers and sisters because we were always hanging out. He and I actually shared a room when we were younger. We had a mutual trust with each other even as very young kids, always talking going to sleep every night. I went to most of his games growing up, everyone did in the neighborhood. It was a planned community so everyone supported each other.

Who was Tom McHale:

Margy McHale: My brother, when he swam on swim team as a kid always had records, he had records in high school for track, anything he did, he did really, really well. My brother was an extremely kind person, fun, always interested in everything I was doing. When you spoke to him you felt like you were the only person in the room. During college or even after that, even when he was married, we would spend hours talking after everyone would go to sleep and just catch up on everything and I still live where we grew up, so he’d want to know about everybody. He was a really, really good person. Just a gentle, gentle man. He loved his family. He has three children; his oldest boy is special needs.

What happened to Tom:

Margy McHale: Nine years in the NFL. He’s not your typical football player. He loved it and he respected it and it was a business and he was extremely good at it, but it wasn’t something that defined him. He was into cooking and a lot of other things that never really were football related. I don’t think he and I ever really talked football that much. We were brother and sisters, we talked life. Tom seemed fine for a long time and then there was a huge shift in his personality and he started doing drugs and drinking and not taking care of himself. It was really sad to see because we could talk forever and be together forever and those conversations change and he didn’t reach out to me or return my calls.

What is CTE:

Margy McHale: Chronic Traumatic Encephalopathy is Tau proteins building up in your brain and basically, it’s shutting your brain down and causing damage to your brain. Intelligent, wonderful men who’ve given their life to play and entertain people – can you imagine for all these guys not knowing what’s happening to them?

What do you want Tom McHale’s Legacy to be:

Marnie Abramson: Most people are not going to become professional athletes but most kids will play sports. I hope that the legacy with this event is that sports get safer.

Margy McHale: I want to win if I’m playing something but not at the expense of not being around to enjoy your children, permanently be in brain damaged, having pain from headaches the rest of your life. It should never happen. It doesn’t have to happen and it will change. But people have to get on board and that’s why we do what we do.

My Legacy: In Memory of Owen Thomas

Posted: April 26, 2016

On April 26th, 2010, a shockwave ripped through the social fabric of Parkland School District: one of our greatest sons, Owen Thomas, killed himself. The shocking news spread like wildfire across text-message lines, Facebook inboxes, and phone calls, and within an hour, hearts all across the United States were devastated over the loss of a brother, a friend, a student, a son. He was 21 years old.

Owen Thomas was more than your average man, far more. He was an A-type personality, a vibrant smile, and a bull of a body with a thick neck and flowing orange hair. To the girls who passed him in the high-school hallway or had class with him, Owen was a gentle giant, a gentleman. He was also the brightest mind in all of his classes, humbly keeping a GPA above 4.0; his friends only knew if they asked. To his opponents on the football field, Owen was a mythological creature. The fiery tips of his sweat-glossed hair, which flared out of the bottom of his helmet, were his calling card; running backs did not run towards that hair, nor did quarterbacks throw. To his coaches and teachers, he was one in a million, an inspiration to those whose job it was to inspire. Owen’s teammates, who unanimously voted for him as captain, thought of him as a fearless leader, similar to the way Scotsmen felt about the brave William Wallace as he proudly galloped out in front of the modest Scottish army. No matter what their odds were in the fight, Owen’s teammates were ready and willing, confident of victory with O.T. leading the charge. Those who were closest to Owen knew that he was all of these things and more.

There was, however, a heavy price that Owen paid to be such a fierce and dynamic person. He was a dedicated student who would often lock himself in his room, working for hours with the Beatles playing in the background until every assignment was completed flawlessly and to the satisfaction of his teachers. His work ethic when it came to academics was baffling to his friends. Even greater was his dedication to competitive athletics – especially football.

Whether it was running sprints, powerlifting, or practicing on the field, Owen’s tenacity was unmatched.  He seemed to enjoy the pain and struggle that everyone else dreaded. Owen never complained, and he was never hurt. In fact, he challenged his own teammates to question whether they were truly injured, or just “banged up a bit.” It was a coach’s dream to have Owen around because he would raise the entire team’s effort simply with his stoic presence on the field.

Owen Thomas was the embodiment of old-school American football – hard-hitting, nose-for-the-ball, hit ‘em in the numbers football. On Fall Friday nights under the lights of Orefield Stadium, when the tests and papers had all been turned in and a hard week of practice had ended, Owen shined. Thousands of fans watched in awe as #31 went to work, pouncing on the ball-carrier like a hungry lion. After high school Owen moved on to the University of Pennsylvania where he was admitted into the illustrious Wharton School of Business; he continued to be a dominating force on football field for the Penn Quakers. It was not surprising for his friends and family back home to learn that he was quickly endeared by everyone he met at Penn, where he was voted team captain and helped lead the team to an Ivy League Championship.

He played the brand of football that people wanted to see – the brand of football that made it America’s favorite pastime. Owen’s style was similar to Chuck Bednarick, Jack Lambert, and Dick Butkus: he was not blazing fast, but he would always find his way to the ball, and when he got there, he was mean. All the good that came from Owen’s abilities, the 17 straight wins at Parkland High School, the Ivy League Champion ring, the trophies, the entertained fans, the community pride, it all came with a price – a sacrifice.

Owen was a pitbull without a leash on the field, and it was silently killing him. CTE, or chronic traumatic encephalopathy, developed in his brain as a result of head trauma from football. Scientists believe this disease causes symptoms of depression and affects rational decision-making. In 2010, in his apartment, Owen took his life. He is the youngest and one of the first football players to be diagnosed with CTE. Since that day, awareness of the disease has skyrocketed. Campaigns to make athletics safer have resulted in rule changes from youth sports all the way to the NFL, and new equipment has been designed to prevent head trauma.

 

In six short years since his death, the whole persona of football has changed. The helmet-to-helmet hit is no longer glorified, and that is a good thing. Concussions are treated as life-threatening injuries, because they are. CTE is being studied and cures are being researched. In general, our society is having a revolution in sports safety that is keeping the passion of the game intact while caring for the health of athletes.

We should revere and respect the way Owen and others like him played their sports with passion and unmatched tenacity.  We should also learn from their stories. We should join the fight to make sure that athletics do not die out, but grow stronger and better – safer.

Learn more about Owen Thomas’ story from Malcolm Gladwell’s Revisionist History podcast episode, ‘Burden of Proof'” at https://www.pushkin.fm/episode/burden-of-proof/ 

My Legacy: Nancy Hogshead-Makar

Posted: April 20, 2016

What separates Hogshead-Makar from other Olympic greats, however, is her work after her distinguished swimming career ended. She is the founder of Champion Women, an organization that advocates for girls and women in sports. Prior to founding her organization, she was the Senior Advocacy Director at the Women’s Sports Foundation, a lawyer at Holland & Knight, and was a law professor at Florida Coastal School of Law. Often her work has brought her to testify before Congress on behalf of women’s rights. She’s been honored with the Lifetime Achievement Award from the Women Owned Business Association, the Title IX Advocate Award from the Alliance of Women Coaches, NOW’s Courage Award, and induction into eleven halls of fame.

During the VA Brain Trust Summit in Washington, D.C. held Wednesday, April 20 by the U.S. Department of Veterans Affairs, Hogshead-Makar announced she is pledging her brain to the Concussion Legacy Foundation’s My Legacy campaign. The setting was significant to Hogshead-Makar, who has three uncles who served in World War II, one of whom is still living, and a nephew who is a Second Lieutenant in the Army.

Hogshead-Makar has always found that sports helped prepare her for life and she wants to make sure future generations have the same opportunity. We asked the Olympian, lawyer and advocate why she’s pledging her brain in pursuit of that goal, and what she wants her legacy to be.

Why are you pledging your brain to the Concussion Legacy Foundation? What are you hoping comes from it?

All of sports need to band together on the issue of brain health, concussions, and safety measures. Yet while doing so, we don’t want to scare parents into withdrawing their kids from sports altogether; we all want to affirm the importance of youth sports for kids, letting families know that they can play safely. Donating my brain is part of the effort to make sure youth sports are safe.

What do you want your legacy to be?

I am a civil rights lawyer. I concentrate on issues of girls’ and women’s participation in sports;  things like girls and women having equal participation, scholarships and treatment, free from sexual violence and abuse, and LGBTQ and employment discrimination. Part of that comes from wanting to increase the opportunities for all kids to be able to play sports, and to do so safely. I’m committed to increasing opportunities for kids to play … in safe ways, in ways that lead to positive-life outcomes like more education and employment, more STEM graduates and better emotional health measures.

Years ago, I noticed the concussion discussion was very football-centric and very much centered around men’s high-profile sports. I wanted to make sure that women and youth sports were in the messaging, so when new safety measure emerged, they weren’t limited to a small segment of sports.

We know, in the aggregate, that sports provide really unique educational and growth opportunities for kids. I always say the least important thing I got out of my swimming career is my Olympic gold medal. Don’t get me wrong— it’s very important to me — but the most important thing swimming did for me was learning about winning and losing, postponing short-term gratification for long-term rewards, and teamwork – things that are hard to learn on a blackboard. It’s what I want my kids to get out of sports. Sports participation isn’t just associated with better college graduation rates and more full-time employment; it’s been shown to cause these positive outcomes.

With clear scientific research, all of sports, whether it’s swimming, gymnastics, soccer, football or anything else, need to stick together and take a stand for the future of youth sports, by making sports as safe as possible.

How will pledging your brain affect youth sports?

By pledging my brain, I’m hoping to encourage others to do so. We must get as many athletes as possible to pledge their brains to make youth sports better and safer.

Would you like to see more prominent female athletes step forward and pledge their brain to research?

Of course. And I think they will when we get the word out. The importance of the Concussion Legacy Foundation mission will lead to more athletes, both women and men, pledging their brain for this important cause of brain health.

You’ve been a huge advocate of physical fitness among children. How will pledging your brain help promote that cause?

Anything I can do to be part of the team to increase brain health is a worthwhile endeavor, including pledging my brain.

My goal is to have more kids involved in sports, regardless of socioeconomic status or zip code. I’d hate for football to become like boxing; keeping the same rules and relegating the sport to kids with very few life-alternatives. I’ve read that participation numbers in youth football are going down. My hope is that these kids aren’t dropping out completely, and have safe sports alternatives to football.

At the same time, it is impossible for any activity or sport to be concussion-free. My niece got a concussion on the 4th grade playground, just horsing around. It took her out of school for almost four months, and she benefitted from the research from the Concussion Legacy Foundation. We’d have a concussion every third year on our team, as someone whacked the wall coming in from a hard backstroke set, or fell on the wet deck. All sports, including non-contact sports, need to be aware of brain health.

You have an illustrious post-athletics career in advocacy, namely for women and children in sports. What took you in that direction?

Without a piece of legislation called “Title IX,” I would not have had my college athletic career or my Olympic medals. No matter how good I was— American and world records – that no matter how hard I worked – I was in the water four hours a day, lifting weights and running – none of that would have mattered if it hadn’t been for this statute which said that schools that received our tax dollars had to provide men and women with the same educational opportunities. I was lucky; I graduated from high school in 1980, hitting the new flood of collegiate sports opportunities and scholarships at the right time. Unlike those that have always known opportunities, I was acutely aware of my good fortune, and I wanted to make sure many more women had that opportunity.

A good sports experience can set a person up for future success in life in every way; physical health, emotional health, and economically productive. A high school sports experience means at least a 40% decrease in breast cancer. It is the best proven way to reduce adulthood obesity. I could go on and on about the research here, but the point here is that these are outcomes that are good for everyone; for our country.

The solution to the new research on brain injuries and brain health is not to throw out these long-lasting benefits with the cleats, saying goodbye to the playing field altogether. Instead, our common goal is to eliminate head injuries as much as possible, and treat them the right way at all levels of sport, so kids can continue to play sports in a safe way. The question becomes: how do you make concussion safety universal in youth sports, so more and more kids can be involved in a safe way? I think donating my brain, being here today is the best way to accomplish those goals.

My Legacy: Brandi Chastain Pledges Brain

Posted: March 3, 2016

Hundreds of thousands of youth, high school and college soccer careers were inspired by Chastain’s left-footed boot in 1999. A soccer lifer, she continues to be involved with and give back to the sport. Chastain is a Volunteer Assistant Coach at her alma mater, Santa Clara University, and is a vocal advocate for Safer Soccer, the campaign that encourages delaying the introduction of headers in youth soccer until high school.

The soccer icon isn’t stopping there, however. Chastain has pledged her brain to the Concussion Legacy Foundation as part of My Legacy. During an age in which we’re seeing an ever-increasing need to prevent, manage and treat concussions and brain damage from soccer, one of the sport’s biggest legends is giving all she can to help make the sport safer for future generations.

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

With more information, the greater public can make better choices. I won’t be witness to the results when I donate my brain, and I hope that day is a long way from today, but I’m hoping that my donation helps change things for the positive. I hope my experience in soccer and what I am able to give back helps put soccer in a better place than it was when I started.

Having played soccer since I was little, I can’t even attempt a guess at how many times I’ve headed the ball. It’s a significant number. It’s scary to think about all the heading and potential concussions that were never diagnosed in my life, but it’s better to know.

How do you envision this research being used and making a difference for future generations?

Making a pledge like this, ultimately I’m thinking about the players. How do we evaluate what happened in my brain – when I started doing things like repetitive heading – and then take those results to improve the way we coach our young players? Can what we learn help change rules even more? Maybe by the time they study my brain, we’ll have other testing for things that aren’t even in our vision at this time. To move forward, you have to examine what’s happened in the past and see how we can change things for the future.

What do you want your legacy to be?

My experiences through sports have all been amazing, and I’m so grateful that I lived in a community that supported me participating. Because of my experiences, I have an opportunity to influence other coaches, players, and parents. Through working with Chris Nowinski and Dr. Robert Cantu I’ve learned a lot about the health and wellness of our athletes in a way that I never thought about before. We’ve asked questions that no one ever posed before. Because of these conversations and these interactions, as a parent I see my legacy changing from a soccer player to an athlete ambassador. I want to protect my kids – and it’s not just my kids, but every kid who steps onto the soccer field. I want to protect them and make sure that they get to have the kinds of experiences I had through soccer, while being safer and cared for.

You’ve been very involved with the Safer Soccer campaign to eliminate heading for kids under 14. That campaign saw a victory in November, with U.S. Soccer announcing its new rule prohibiting heading for players under 11 and limiting headers for players aged 11 to 13. What was your reaction to that news?

It’s a positive step that there’s been an amendment on the age, but there’s still a long way to go to provide a safer soccer environment for our kids, and for all of our players. We’d love U.S. Soccer to stand up and say, ’11 is still too young. Let’s protect these kids even longer.’ And what we’re pushing for doesn’t just apply here in the U.S., it’s really on a global scale. Soccer has a great influence on the world, and it has the opportunity to stand up and make a statement that as a unifying organization it wants to really make a difference in the lives of people, especially the youngest and most vulnerable people playing its sport.

Is donating one’s brain to research something that you’d like to see catch on among other former athletes?

This is such a personal issue, but what I would encourage is that everybody who’s had experience in sports should feel compelled to participate in helping make their sport better. If you have been a player who’s had multiple concussions or repetitive heading, to me it makes sense to donate and to be a part of a solution.

For so long, players with concussions have in many ways had to be in the dark on their own, dealing with symptoms, diminished capacity, or eventually experiencing the pain of having to step away from their sport. When you feel vulnerable and you feel like there are no answers, you feel alone. This is a chance to be empowered. By knowing that we’re not alone, and by working together and getting more people to follow suit, maybe in the future, we have less reason to worry about concussions. Ultimately, that’s where we want to get to. We’d like to be out of the job of talking about this.

RELATED: Pledge your brain to research

Below is a full transcription of Brandi’s interview:

WHO IS BRANDI CHASTAIN?

My name is Brandi Chastain. I’ve been in three World Cups and three Olympic Games.

ON THE CULTURE CHANGE IN SOCCER:

When I was with the national team as a player we talked about the legacy that we would leave and what we were doing on the field and how it would impact the game. Initially, it was about playing hard and being a team and, you know, setting goals and learning leadership skills and all the things that you need in life to be successful. But no one ever talked about being safe.

ON WHETHER KIDS SHOULD BE HEADING:

I don’t think anybody below the age of 14 should head the ball. Being more knowledgeable about what can happen to a small person whose musculature is not developed enough, and their brain is not developed enough, they don’t have enough life experience. They don’t understand space and time and awareness. These things that really allow a professional player to make good decisions and to protect themselves that these young kids don’t they just don’t possess these tools yet. Every sport has a chance to evolve. I think this is a part of our evolution.

ON SAFER SOCCER AS HER LEGACY:

Safer Soccer is the legacy that I’m hoping to leave for the long haul, for the future of this game, where we’ll have more people who will start the game as youngsters and play the game longer because they’ll be safe.

My Legacy: Matthew Fier Takes Action

Posted: February 11, 2016

I played highly competitive tackle football for nearly a decade. My playing days were at the tail end of the concussion-ignorance era. Concern over concussions was new territory, with little information and little support. Back then, there were no real tests except for balance and the presence of headaches. To this day, I’m not sure if I had repeated concussions (mostly from football), or if I had a few that I simply never healed from. Regardless, I stopped reporting (e.g., caring) after my 6th concussion made it to the medical report.

Don’t get me wrong, I wasn’t the stereotypical jock who lived and breathed football. I was in the church band, an honors student, and an aspiring writer. I could remember anyone’s name and little details about them years later. My friends hated that I could bring up an old memory just to embarrass them around their girlfriends. But I was also 16, barely a sophomore, and just wanted to play ball.

In 2009 (concussions, a torn ACL, and a fractured back later), my playing days were over. I had a few recruitment letters collecting dust on my desk, but I had another set of contact info on top of them: the Concussion Legacy Foundation (called the Sports Legacy Institute at that time). They had made some small ripples in the sports community touting Chronic Traumatic Encephalopathy (CTE) before anyone would accept its existence. I emailed them, and found out there was no way to diagnose CTE in a living person.

Since then – despite the advances amazing doctors and researchers have made – the only way to officially diagnose CTE is still post-mortem. They open the brain and look at the tissue in search of build-up of an abnormal protein called tau.

Most readers probably know about CTE or have seen the movie Concussion (disclaimer: I haven’t yet, mainly out of fear I’ll cry in the theater). According to the Concussion Legacy Foundation, symptoms of CTE can include “memory loss, confusion, impaired judgment, paranoia, impulse control problems, aggression, depression, and eventually progressive dementia. Symptoms can begin to appear months, years, or even decades after trauma has ended.”

I love sports and being active. I love football and the glory that came from hitting a quarterback. I love barreling down Mt. Hood on my snowboard and riding a jet-ski at 40 mph on the Columbia River.

But I hate the headaches, I hate the days my eyes can’t focus, and I hate the ringing in my ears. I hate no longer recognizing people that have played significant roles in my life. I also hate the idea of kids not being able to enjoy life, living in some computerized bubble, because parents are (rightfully) afraid of them developing CTE like Junior Seau, Frank Gifford, or Tyler Sash.

That’s why after considering the future of the next generation, I’ve pledged to donate my brain to research. I don’t want to hit my mid-50s and no longer recognize my kids.

By pledging to donate my brain, I’m pledging that I want my legacy to be just one of the ripples making sports safer. I want to be remembered for making a difference, helping future generations be able to be healthy and active. I want my legacy to be that I helped save lives and revolutionize brain safety.

My future and the possibility of CTE is not something I can dwell on, but it’s something that I have to live with. So until we find a solution, let’s stand up – let’s not live in fear, but strive to make a difference. Do everything you can for yourself, or for someone that you love who has gone through multiple concussions: raise awareness, fund-raise, or even pledge to donate your brain.

We all have a responsibility for today, tomorrow, and tomorrow’s tomorrow. That’s my legacy. What will yours be?

John and Sylvia Mackey: Mr. and Mrs. #88

Posted: February 5, 2016

As a star tight end at Syracuse University, he quietly and peacefully made inroads into the discrimination that permeated society, building lifelong friendships that transcended ethnicity and socioeconomic backgrounds.

With the Baltimore Colts, John revolutionized the tight end position and was selected to the Pro Bowl five times, accomplishments that earned him a place in the Pro Football Hall of Fame and praise from Mike Ditka as “the greatest tight end to ever play the game”.

As the first president of the National Football League Players Association following the merger of the NFL and AFL, he fought for better pension and disability benefits for players, and gained the right to free agency that today’s NFL players still enjoy.

John’s advocacy efforts – his determination to give back – didn’t stop with the NFLPA or end with his NFL career.

He partnered with Jack Kemp to launch a non-profit that gave educational assistance to disadvantaged children. He actively supported the civil rights movement that changed the course of history. He reached out to others, whether it was to offer guidance on career choices or to advocate for recognition of an under-appreciated teammate.

That’s the kind of person John Mackey was.

Although dementia robbed John of his powerful voice, his private battle with the disease became the public face of the link between head trauma and Chronic Traumatic Encephalopathy (CTE). He was the catalyst for the 88 Plan that provides financial assistance for those affected, for the advocacy and fundraising efforts of his Baltimore Colt teammates that helped so many former NFL players, and for my own involvement in the Concussion Legacy Foundation. When John died on July 6, 2011, the widespread media coverage focused as much on these later-in-life accomplishments as on any of his achievements earlier in life. Even in illness and in death, he changed the world.

That, I believe, is John Mackey’s greatest legacy.

Sylvia Mackey
Mrs. #88

Lost and Found: My Search for Peace of Mind

Posted: January 26, 2016

The next couple of days were painful and confusing. Days slowly turned into months, and months into years. I took significant time off from school to sit in a dark room. It was a year before I found a couple of pain-free days. Two years before I could sit in direct sunlight. Three years before I was able to successfully drive again. Four years before I was able to spend some time on a computer. Last year was the first I could watch the Rangers play on TV without inducing a migraine.

Six years is a significant marker for me, as I have finally come to terms with the reality that my life will never be the same as it was before the concussion. After all, it takes a long time to break the habits we create when we commit to being an athlete. Before my concussion, I defined myself by the limits to which I could push my body. I was raised to work through those things that are difficult. When stressed out with school, I would run sprints on the track. When I was sick and couldn’t breathe out of my nose, the best thing to do was to sweat it out on a long run. In hindsight, it is no surprise that after I got hit, my mind consistently thought that all I needed was a good set of sprints to get my head back in the game. In my new concussed world, however, my body would continue to remind me that this was flawed logic when you’ve injured your brain. Inevitably this is one of the reasons athletes return too quickly after getting knocked in the melon: for many, to be active is healthy. For us, in order to be healthy, we must be active.

After two years of trying to find balance within the limits of my concussion, I was fed up, depressed, and desperate for a change. Everything seemed to trigger migraines, and I felt numb to the world around me. When I told my college advisor that I was going to drop out of school, she urged me to look instead to alternative academic options.

A month later, I was sitting in a canoe with a duffel bag.

I would spend the next three months in a secluded yurt village, Arcadia, in the Adirondack Park with eleven other students, two assistant directors and a yellow lab. In the absence of technology and running water, together we learned the value in a materially simple life. We spent every meal around a large wooden table in the only permanent structure at Arcadia, eating locally sourced food that we had cooked for one another. The discussions around that table were limitless. Every weekday, a professor from school would drive into the Adirondacks, hike a mile into the woods, and paddle across Lake Massawepie to spend the day outside with us. In the absence of computers and phones, our learning came directly from the environment that we were embedded in.

Two weeks after paddling across Lake Massawepie and settling into my new home at Arcadia, my concussive symptoms were essentially eliminated. In this new life where you had to haul and treat your water before drinking it, stimulation came from conversations, sleep cycles mirrored that of the sun, and contrary to ordinary life, multitasking only led to mistakes. My migraines were depleted; I noticed a phenomenal increase in attention span; I slept well and no longer felt foggy. But most importantly of all, I was happy. I was disburdened from my concussive state, free to re-create my new self.

The hardest part about my experience in the Adirondacks was leaving it. There is no question that the Adirondack Semester allowed me the opportunity to take a long deep breath during a time in my life when I needed one more than anything. But life in the stimulating world we live in is not easy after a Traumatic Brain Injury. As I returned back to the demands of everyday life, my daily migraines, cloudiness, fatigue and vertigo returned alongside me. My head was on complete sensory overload, and I had a very hard time adjusting.

After a few months of a deep depression, a game of drugs, and my first positive visit with a doctor, I slowly began to turn a corner as I learned to look again toward the small steps, just as I had done so intentionally when living in the woods. I began to view my body as an energy bank. For it to be full, I needed to make sure I got enough sleep, kept my blood sugar up, and made the space to spend time in an environment isolated from too much stimulation. Certain activities would deplete my energy bank quicker than others, and to keep myself healthy, I couldn’t let that bank fall too low or too rapidly.

Today, six years later, I am no longer sitting alone in a dark room, and for that I cannot complain much. Although I still have persistent migraines, many of which are induced by failed attempts to work out, I have been able to carve out a place for myself in this world. Over time, I have allowed myself to slow down, find successes in the small steps, and form new relationships on values that are meaningful. Although I am oftentimes still frustrated, I no longer feel lost.

A High Schooler Lessens the Impact of Concussions

Posted: January 12, 2016

Concussion Legacy Foundation Champion Chris O’Connor spoke to Brooke about her story and her message to others.

What was the first example of cognitive impairment that you can remember after the concussion? How did it make you feel?

After having my concussion, I found myself falling asleep in class. This wasn’t like me at all. I’ve always been a good student. I also had a really hard time focusing in class and remembering things. I felt scared and it made me realize that this concussion was serious. I felt overwhelmed in school and in life in general due to my cognitive impairments.

How did your concussion impact your academic life?

I had to study more and harder. Homework took me twice as long, writing essays took me twice as long. I’m constantly staying after class with the teacher to be sure I have all of the due dates of projects and the dates of tests written down, because I know I won’t remember them. I’ve had to learn new study habits and have been lucky to have the help of my Spanish tutor to show me new methods of memorization and learning. For the first year following my concussion, my grades suffered. It’s been almost two years since my injury and my grades are finally back to where they were before my concussion, but it still takes more effort than before to achieve an “A”.

Brooke met Concussion Legacy Foundation Executive Director Chris Nowinski at the organization’s 8th Annual Impact Awards in November, 2015.

Do you have any suggestions for your peers about concussions, specifically for those recently diagnosed, or for friends of people experiencing symptoms?

I recommend avoiding getting a concussion!  But if it happens to you, notify every teacher about your injury so they can understand what is going on with you. Talk to your school nurse and guidance counselor to have academic accommodations made and a return-to-learn plan put in place. It’s important to realize that using your brain in academics is stressful to your injured brain and can worsen your symptoms or slow your recovery. Your coach will keep you off the field until you’re cleared and ready to return to sports play, but I’ve found that when it comes to academics you need to speak up for yourself to get help.

Are there any particular activities that have helped with your symptoms?

Sleep helps a lot. I’ve found my symptoms are worse when I don’t stay rested. Even almost two years after the impact, I still have triggers of post-concussion symptoms. Running, jumping and dance class still cause headaches for me, as does bright light or flashing lights. Long school days followed by a lot of homework also causes me to have a headache. It’s frustrating not to be able to do the some of the things that I enjoyed before my concussion.

Why are you passionate about promoting education and awareness about TBI?

I’m passionate because I see it as a rising crisis for kids my age, whether the head trauma comes from sports, a car accident or a fall, teens are at risk. It seems like most of America isn’t aware of what a concussion is and how to deal with it. If everyone were more educated about TBI, then we could be more supportive of people around us who are suffering from a brain injury. When I first suffered my concussion some classmates doubted my injury, thought it wasn’t a big deal or had a concussion of their own and didn’t think much of it. No one should be made to feel like they are being dramatic or faking their injury. I want to educate teens and adults so they can be more understanding and know what to do if someone they care about suffers a TBI.

____________________

The following segment is from Brooke’s website, http://www.lessentheimpact.org.

I wish I could tell you what happened, but I don’t remember the details. In March of my freshman year, I was accidentally kicked in the head and knocked unconscious during play in a mandatory gym class. I was diagnosed with a concussion, but no one knew how severe it would be.

I lost weeks of school. Unfortunately, I had no baseline testing, so I was cleared to return to activities before I was fully healed.  Academics became extremely challenging; many of my teachers didn’t know how to make the appropriate accommodations for Post-Concussion Syndrome. Over a year later, although greatly improved, I still continue to have post-concussion headaches and memory issues causing me to struggle to be the “A” student I was prior to my brain injury.

It is estimated that as many as 3.8 million concussions happen in the U.S. per year in competitive sports; however, up to 50% of those concussions go unreported. Many kids don’t report their injury because they are afraid of being judged as “wimp,” or being denied participating in the sports they love.  Others think a concussion isn’t a big deal since the wounds aren’t visible.

During my own recovery I felt isolated, discouraged, frustrated, and angry. I was teased for wearing sunglasses when I was sensitive to light. I was made to feel as if I were “faking” my issues by many of my peers. I wasn’t able to continue in my after school activities that I loved so much.  In reality, just getting by on a day-to-day basis was difficult. I don’t want other kids to go through what I did. Physically having a concussion is bad enough, the extra emotional toll it takes is unnecessary.

We can act together to lessen the impact of a concussion on a child by being a more understanding school community and support system.  Everyone in the community should become more educated about concussions. Teachers, coaches and parents need to be aware of the severity of a concussion, it is by definition a mild traumatic brain injury, and should be taken seriously. We should encourage kids through awareness and education to report their injuries and any symptoms that could indicate a concussion has happened. By talking about concussions and creating a greater understanding, we improve the outlook not just for the injured person, but for everyone involved.

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.