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.

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.

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.

Posted: April 26, 2016

On April 26^th, 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/ 

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 4^th 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.

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.

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 6^th 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?

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