Our Legacy: Providence College Rugby’s Pledge

Posted: March 1, 2017

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

 

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

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

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

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

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

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

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

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

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

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

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

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

Join the Black Pack and take the pledge here.

Harvard Hockey Goalie Pledges Brain

Posted: February 24, 2017

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

My Legacy: AJ Mleczko Griswold Pledges Brain

Posted: February 17, 2017

Griswold was a force on the ice. She led the U.S. women’s hockey team to a historic gold medal at the 1998 Nagano Olympics, and a silver medal at the 2002 games in Salt Lake City. In between, she captained the Harvard University women’s hockey team to a National Championship in 1999. That same year she was named the USA Hockey “Women’s Player of the Year” and won the Patty Kazmaier Memorial Award which is presented annually to the nation’s top intercollegiate varsity women’s hockey player.

It wasn’t until the tail end of her playing career that AJ Griswold noticed a change toward concussions. She was in Salt Lake City for the 2002 Winter Olympics and, for the first time she could remember, the team took a baseline test to help diagnose concussions. It wasn’t something she and her teammates spent more than a minute thinking about. They knew to avoid getting a concussion, but mostly because you never knew how much time you would miss if you got one.

Now Griswold has noticed a dramatic shift in her thinking. The mother of four kids, she says concussions scare her more now than they ever did when she was playing. Griswold cares about women’s hockey because it’s given her so much and she hopes by pledging her brain to research, she can leave a legacy of safety.

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

What the Concussion Legacy Foundation has done is fantastic. Just bringing awareness to the unknown – the risks and dangers of brain trauma and concussions is great. For me, I care about all sports, but I specifically care about women’s hockey because it was the sport that gave me so much. I want parents to be excited about have their children learn to skate and play hockey. I don’t want them to be fearful for their child’s future.

I have four kids, all four are playing hockey and they’re playing other sports, like soccer and lacrosse, where concussions exist. It’s scarier now, as a mom, than it ever was as an athlete. There is so much great research being done, but there is still just so much that’s unknown about what’s going on. As an athlete, you just sort of play through it and don’t think about the consequences, especially in high school and college. Now, I look at my kids playing and it’s really scary to think that I could be putting them at risk without even knowing.

What do you want your Legacy to be?

I have never been diagnosed with a concussion. So I think it will be important to see what damage had been done with no diagnosed concussions. I think we’re getting better and better at recognizing when someone has a concussion than when I was playing.

As a coach now, if a kid gets hit in the head, I don’t put them back in there. If he or she comes off with a headache – they aren’t going back in. They might say it hurts and then ten minutes later, they’re saying they’re fine. And it really might not be anything, but it’s not my responsibility to take that risk. I mean, it’s youth hockey, they’re only ten. It’s not worth it.

I want to do anything I can in my years after playing to help future generations, whether it be my kids, my friends’ kids, or my kids’ friends. That’s My Legacy.

What has been your experience with concussions?

I was never diagnosed with a concussion in my career. I don’t think I’ve had one, but we really didn’t know much about them and it wasn’t something we were overly concerned with. There were unknowns about it. There was a feeling of ‘you don’t want to get a concussion because then you don’t know how long they’re going to keep you out.’ I don’t think anyone knowingly played through them, but I also don’t think concussions were diagnosed nearly as often.

What’s the major difference between how we view concussions now and how we viewed them when you were playing?

I think there’s more awareness – obviously there’s still so much we don’t know, which is why the research is so important, but there’s definitely more awareness now which is a start.

It’s interesting to me how much more information there is on concussions and head trauma than when I was playing. Which is crazy because there’s still not nearly enough! It wasn’t until 2002 before the Salt Lake City games, the very tail end of my career on the national team, that we did baseline testing. And even then, I don’t know that anyone actually used it. There weren’t as many concussions diagnosed when I played. Looking back on it, I’m pretty sure people had concussions and just didn’t know it.

Unfortunately, it’s taken high profile athletes from the NFL and NHL that have had concussions and tragedy to bring light to the risk of repetitive head trauma.

How does the hockey community view concussions?

Within hockey, Sidney Crosby has brought a lot of attention to concussions and brain trauma and recovery. I think that’s been great because he’s a star and he’s been smart enough to take the time to fully recover from the concussions he’s suffered. That’s the good part. The hard part is when the players who aren’t Sidney Crosby get concussions. They don’t have the same name recognition – they need more protection. There needs to be more player education and awareness of the dangers of concussions.

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

Of course. I would love to see more athletes, men or women, make the pledge. Men have had the opportunity to play professional and Olympic sports much longer than women, so the pool of retired male athletes is much larger. We’re getting to a time with the Title IX generation – women who played in the ‘90s, a big time for women’s sports – that they’re getting older. I’m hoping more and more women see the benefit of research and are willing to do it. It’s incredibly beneficial.

Jennifer and Steve Murra: A Rugby Story

Posted: February 14, 2017

This is the story of my husband, Steve Murra, “bigger than life” dad, husband, coach, friend, and person.

Steve and I met two days before my freshman year of high school.  I had just moved to Iowa Falls, Iowa and Steve, who was a junior at the time, had lived there his whole life.  We quickly became friends through our involvement in our church youth group. Two years later, Steve shared with me that he had wanted to date me since he met me and I felt the same. We became inseparable, the couple everyone knew and wanted to be – it was always Steve and Jennifer – never one without the other. We were married in 1993, still both in college.

Steve had started playing rugby at age 17 and played for 20+ years, for the local Iowa Falls Rugby Club where his dad was the longtime coach. His passion for rugby developed quickly and he became highly involved in the sport at many levels. He was a student of the game and loved every second of being on the rugby pitch.

In 1994, Steve was asked to start a women’s rugby team at the University of Northern Iowa. Little did we know this would be the beginning of what would define our lives for the next 21 years. Steve began coaching and quickly grew a strong program. He had an uncanny ability to teach rugby to anyone. His players played with their heart and soul and always wanted to make him proud. He believed coaching was not just about teaching the sport, but also about helping his players grow as people and learn to be strong women. I started out managing the team and then became his assistant coach – we did everything rugby together. Highly successful as a coach, Steve not only had fun coaching, but made it fun for the team all the while instilling a desire to win. Steve’s coaching record was strong with an overall record at UNI of 350-51. He coached many players who rose to be highly successful including 3 USA Senior Women’s Eagles & World Cup players, 9 USA U23 Women’s Eagles, 6 1st Team All Americans, and countless players who advanced to local and regional All Star Teams.

Steve was also the Head Coach for the U23 Women’s Midwest Thunderbirds, an All-Star Team encompassing 9 states. He won a National Title coaching that team and went on to take the team on international tours for the past few years.

Our first child, a daughter was born in 2001 and she began traveling with us to rugby events. When our son was born in 2006, he traveled to Penn State for Nationals with us when he was 5 days old. Rugby was our life and it was our family’s life.

Steve was an amazing, loving, caring person who always saw the best in people and always gave everyone a chance. He had a way of making every person he met feel special and accepted. He knew no strangers and made friends everywhere we went. He truly impacted the lives of every person he knew. Steve was hilarious and could make any story sound interesting and typically took over any room he entered. He taught American History at a community college and was a favorite instructor at the school because he made the class fun and interesting at the same time. His passion for teaching and coaching was obvious to anyone who observed him or talked to him about those subjects. Steve was simply a beautiful person.

Through it all, the number one thing in Steve’s life was his family, especially his kids. Steve’s schedule allowed him to spend a great deal of time with his children. He was well known at the kid’s school volunteering for various things and always went on school field trips. He was involved with all the sports in which our kids participated, coaching our son’s flag football team and being the head timer for our daughter’s swim meets. He was an exceptional father and loved his children more than anything.

It is truly difficult to find a way to describe Steve, this bigger than life person. Words that come to mind are: carefree, uninhibited, daring, non-judgmental, unconventional, laid back, calm, funny, adventurous, loyal, accepting, pioneering, determined, witty, generous, smart, women’s rights advocate, compassionate, charming, stylish, thirsty for knowledge, father, friend, and teammate.

Unfortunately, Steve’s personality slowly started to change. I didn’t realize at the time how things were slowly slipping away, but now looking back I can see it clearly. The person who once had unending patience, had a shorter and shorter fuse. The person who was happy and laid back, became angry and uptight. There were long periods of normal behavior and short periods of the angry, unhappy person which slowly turned to short periods of normal behavior and long periods of him being a person I did not recognize. As time wore on, the anger worsened and began to impact most areas of his life. Steve complained of headaches often and took a great deal of ibuprofen. I had countless conversations with him over a period of many years, begging him to get help, asking him what was wrong and why he was so different. He always told me there was nothing wrong or that he was working on trying to make changes. I never saw those changes other than small windows of days when he seemed a bit better.

Steve’s behavior spiraled downward over the course of the last year of his life, very quickly. He chose to retire from coaching at UNI in January 2015 and things spiraled even quicker after that. He went on his last tour overseas in August 2015. During the Fall of 2015, his behavior worsened and he started abusing alcohol. By that point, he was angry most of the time, had become paranoid, and was putting me down to our kids. I discovered he had stopped paying our bills and when I asked him why, his only response was “I don’t know”. In January 2016, I made the hardest decision I ever had to make in my life and asked him to move out of our house because I could no longer tolerate his behavior toward me or the kids. I begged him to seek counseling and make changes so he could come back home.

Never in a million years did I ever think I would ask this person who was so amazing and my best friend, to leave our house. We always planned to grow old together.

Steve always had a special relationship with my parents. He lived with them while I was in college and had nowhere else to live. My parents considered him their son. When I asked Steve to move out, my parents agreed to let him stay there until he could find a place of his own.

Steve died by suicide on February 20, 2016. Regardless of how far he had spiraled, I never thought he would ever do something that would hurt me and the kids so much. This was not behavior anyone would ever expect of the Steve they knew. The news of Steve’s death sent shock waves through the rugby community and our home community. This was a person who loved life and tried to make the most of every day. Unfortunately, my parents were the ones who found him. Their lives will never be the same. My kids won’t go to their grandparent’s house anymore, a place where they previously spent a great deal of time.

As his behavior was worsening, the possibility of CTE came to mind given his years of playing rugby. Steve never had a diagnosed concussion. When I was notified of his death by the medical examiner, I asked that his brain be tested for CTE because Steve taking his life made no sense for his personality.

I truly believe Steve tried his best to get well, but ultimately he knew there was something wrong with him that couldn’t be cured. Now I know, he really couldn’t answer my questions about why his behavior was changing, he really didn’t have the ability to answer.

On November 10, I received the results of the CTE testing and was told Steve had Stage II CTE. I felt so sad for him having to suffer, but I also felt relief at having an explanation as to how this person who I had loved so much and had been with for 28 years changed into a person I didn’t know.

Suicide always has far reaching ramifications. People blame themselves for the person’s death and try to figure out the answer to why. This diagnosis has allowed me to explain to my kids that their dad’s suicide was not because of anyone, it was because he was sick and couldn’t make sense in his head anymore. So many families never get this information and forever wonder why. We have an answer, we have some peace, we miss him every day.

Moving forward

When I initially asked for the CTE testing, I was focused on finding out what caused Steve to change so much and ultimately take his own life. But as I awaited the results from Boston, I began thinking about how having this testing done was also a way for Steve to help others as he had done his whole life, by making this donation to the CTE program. I started realizing the impact it could make if there was some way I could find meaning in this situation by reaching into the rugby community to both increase awareness and to encourage those in the rugby community to make a similar donation.

After I received the results, I felt compelled to tell Steve’s story in hopes it would inspire the rugby community and anyone he may have touched to get involved in this important research. In talking with staff at the Concussion Legacy Foundation, it was clear there needed to be more in-roads to the rugby community and more females involved in the research. I realized I had the ability to help with both of those needs. I talked with my children about what I wanted to do and what I knew Steve would want us to do. They both agreed, telling his story and reaching the rugby community was important and this was a way we could help do that.

Steve was a pioneer for college women’s rugby and led the way for so many women to succeed in the sport. Now my wish is that he will lead the way for the rugby community to help the world learn more about CTE.

I hope someday my kids are able to find meaning in all of this. If we can add to Steve’s legacy by reaching a large number of people, encouraging their participation in the research, and possibly through all of that make a difference, then that is our meaning. There was a time when I didn’t think I would ever stop crying after Steve died, but slowly the tears faded and I was able to see more clearly. I have said through all of this, there has to be some meaning and some purpose is supposed to come out of this – I have been waiting to figure out what that is. I now know, we have found it.

We will never forget…

“The rugby gods are smiling on us today” – Steve’s favorite quote.

My Legacy With My Football Star Dad, Dave Behrman

Posted: January 5, 2017

Dave Behrman and football…how good was he?

I was never an advocate of football and didn’t realize while growing up that he will forever be remembered as one of the greatest offensive tackles in Michigan State University football history. He was always big and as a 6-foot-4, 265-pound tackle he dominated opponents with his strength and quickness. MSU Head Coach, Duffy Daugherty, said that “If there is a college lineman anywhere with his speed, power, quickness, and intelligence, he has been well hidden.” Dave was an All-American pick in 1961 and 1962 and became part of the 1963 College All-Stars team that upset the NFL Champion Green Bay Packers, 20-17, on August 2, 1963 at Soldier Field in Chicago. After being distinguished as a first round draft pick in both the AFL and NFL, Dave’s AFL All-Star career with the Buffalo Bills and Denver Broncos ended in 1967 with back injuries. It was after that time period that he became a full time dad.

How do you remember your dad?

After football, he finished his business degree at Michigan State University and spent his career in the manufacturing and production environments in business and with the State of Michigan prison system tool and die shop. He loved tools and could make anything. He was a very intelligent man. At one point in my childhood my sister, Kellie, and I were wondering if he may have been one of those people who actually had a photographic memory, because he appeared to be able to retain everything he had ever read, learned or experienced.  He also loved science and the value of scientific research, and I did too.  He taught me that anything I ever needed to know could be found by researching it. At the same time, he taught me to pay attention to that pit in my gut, that feeling  that you get when something isn’t quite right, and that the first thing that pops up might not be right, but it is the direction you go in seeking the answer.

Maybe that’s what caused him to be so good with “fixing” me. He worked with me before my ADHD diagnosis was available, without an owner’s manual, so to speak, by taking an interest in me, helping in what I was trying to do, helping to develop skills that I was good at. Since I learned by doing and not through lecture he would say, ‘don’t worry about mistakes, just make sure you learn something from them when you make them and try again.’ This is part of what motivates me today. His interest was always in what I was trying to accomplish. With my homework he simply read the chapter, looked at my assignment, and basically retaught me the lesson, one-on-one at the dining room table.  Who knew just how effective that would actually be? This one-on-one fatherly touch continued when I was being punished for some teenage transgression. He would reconnect with me, alone, to discuss at length what happened, without judgement or anger, listening to me and even sharing his own personal experiences.  All of those moments usually ended in some sort of agreement, often including a handshake, which I recognized as a contract that was in my best interest. And I honored every one.

Even as an adult today, one of my favorite early memories was a trip to grandma’s house and I realized that I had forgotten my baby blanket. We couldn’t go back because we had gone too far and I was not happy. My dad stopped at three stores along the way to grandma’s until we found a baby blue blanket with satin trim that made me happy. He was someone I knew I could count on.

All of this changed when the onset of his Chronic Traumatic Encephalopathy (CTE) began.

When did you notice that changes in him were taking place?

As he got older, his interest in his workshop at home helped him focus by being alone, just like the boating and fishing activities where he could retreat from the confusion of his mental decline and the conflict of a struggling marriage. As a natural introvert, with a talent in fixing and building things, he liked model boats and collected Karmann Ghias that he could repair and restore in his workshop. It was odd that he liked these tiny cars because he was so big and they were so small. Maybe the size of the cars represented the contradiction in his power and skill in football vs. his quiet, peaceful, and thoughtful demeanor as my dad.

Sadly, the depression, confusion, memory loss, lack of motivation, secretive behavior and balance issues, attributed to CTE, began to take over as he became more and more isolated. He lost the ability to maintain interest in friendships as well as being a devoted grandparent. We didn’t understand who he was becoming or what was happening. At times he was clear thinking in making a point and just as quickly he would lose all sense of logic and understanding of the truth. We reacted with anger, hurt and resentment and his behavior was hard on family relationships—because we didn’t know. As a result, we started professional medical support for him far too late. It wasn’t until we saw the Frontline Special, League of Denial: The NFL’s Concussion Crisis in October, 2013, that we began to understand what was happening to him, but the damage was done. When he died on December 9, 2014, he was diagnosed at the Boston University Medical Center for CTE with Stage III/IV CTE dementia.

How do you think about football as a result of your dad’s condition?

My dad never wanted my son, David, to play in the youth football programs in grade school. When he called me about the possibility of his playing, his advice was for David to pursue dog training or work related to animals. My dad didn’t eat, drink and sleep football like some athletes do—it wasn’t his passion. For me he was quiet, principled, shy and liked being by himself. It was sad to lose him to this disease (CTE). Knowing what I know now about my dad, I’m not so much in favor of football. I’ll admit that I don’t really understand the sport all that well and appreciate the fact that some people may disagree with my thinking.

A High Schooler Speaks Up Against Concussions

Posted: September 26, 2016

On October 19th, I will be one of ten Westchester County teens to be presented with the Milly Kibrick Youth Service Award for my work with concussions. I am so honored to be recognized for my advocacy work with concussions, but frankly, I never thought I would be an advocate for concussions in high school; I thought I would be a football player.

In my freshman year, I suffered a major concussion. I assumed I would bounce right back as I did from the one other concussion I had sustained. I figured I would rest for a day or two and then I would be fine. I thought I would be better in no time. I was wrong. It took me more than two full months before I could return to school and just over a year for my brain to fully heal.

When sophomore year came around, I was sick of concussions. My freshman year had been all about my concussion and I was aching to finally return to normal life and forget this injury ever happened. But I found myself thinking about my injury more than ever before: how frustrated I felt when every doctor I went to told me the same thing about staying in a dark room and just giving my brain “the time it needs to heal”; how each day I would wake up filled with false hope about this finally being the day my headache would go away; how no one at school really knew how to handle my long absence or my impaired cognitive abilities. I knew something needed to be done.

So I contacted the Concussion Legacy Foundation, hoping they would let me join their mission to help educate athletes and their families on concussions and Post Concussion Syndrome (PCS). Even though their Ambassador program wasn’t off the ground yet and they don’t often work with high school students, I was able to get my foot in the door and start a fundraising campaign for concussion research. After many hours spent over the course of several months calling friends and family, and through creative ideas like a March Madness bracket to raise money, when all was said and done I had raised over $10,000 for concussion research. I also had proudly earned the title of CLF High School Ambassador. In addition, co-founder and CEO Chris Nowinski agreed to come to my school and speak to and further educate the physical education staff, nurses, and varsity coaches on concussions.

Chris’s visit was amazing, but I wanted to do more. I felt I had just scratched the surface on what I could do to raise awareness about concussions and PCS. So Chris put me in contact with Dr. Mark Herceg, Commissioner of Mental Health in Westchester County. After hearing my story, Dr. Herceg offered me a chance to share it on a bigger stage. He invited me to be a part of the Westchester County Concussion Task Force and to come speak at a press conference unveiling the task force’s “Ten Best Practices for Concussion Management.” I spoke to the press about how my life was changed from concussions. I explained how the Ten Best Practices would have benefitted me. People need to be educated on concussions to provide support and understanding. The story was featured that night on several local news outlets.

After hearing me speak at the press conference, Eileen Reardon, executive director of the Brain Injury Association of New York, invited me to present at their first ever Advocacy Day in the state capital, Albany. There I once again shared my story, this time in front of a group of New York State Senators and Assemblymen. I now had the attention of people who could help promote education and awareness of concussions and PCS on a larger scale than I ever could have imagined. I am honored to been a part of the fight to promote legislation that would help Traumatic Brain Injury victims.

Looking back on all I have accomplished in the last three years, I am proud of who I have become and the work I have done. I never thought that reaching out to CLF would eventually lead me to an official Westchester County press event, let alone a podium in the lobby of the New York Legislature, but I’m glad it did. Though I never set out to be, as one reporter called, the “poster-boy for concussions in Westchester,” I would not trade the title for the world.

It is difficult to think of the day I got my concussion, mostly because I don’t remember much of it. I have been told that my teammate Ben brought me off the field when he sensed something was wrong with me. He said I was slumped over in my stance, wobbling back and forth, and looked asleep. I am thankful that I was lucky enough to have had someone looking out for me on the field that day. It’s scary to think about how much worse my injury could have had my teammate not been there. That is why I was so proud to be a part of Team Up Day and to bring it to my school. I feel very connected to this initiative and know it can help a lot of people. With over 44 million youth athletes in America, it is important for them all to know they have someone else looking out for them. Athletes have a responsibility as teammates to help each other in their times of need. Let’s all Team Up and Speak Up to fight concussions!

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 DementiaJim 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.