Warning: This story contains mentions of suicide that may be triggering to some readers.

I would never, in a million years, have thought a decade of repetitive head impacts could cause a neurodegenerative disease in a 32-year-old female. Trust me, if it wasn’t personally happening to me, I wouldn’t believe it. But it is, and my brain is dying before my very eyes. It is heartbreaking for my husband Andrew to witness. I am lucky to have his unconditional love, his understanding, and his unwavering support.

I share all of this publicly with complete transparency for the sake of CTE awareness, so when I am diagnosed with CTE postmortem, these words will be here to provide an account of what it’s like to live with this disease, in hopes we can prevent it. If I can’t turn my suffering into something meaningful — into something positive — then what is the point? My only wish in life is to alleviate the suffering of others, and I hope that my attempts to shed light on this horrendous disease will help to do just that.

I started playing soccer and heading the ball at 6 years old. By the time I was 9, I already knew what I wanted to be when I grew up: a professional soccer player and a doctor. As I got older, my passion for soccer and my love for science only grew. Like most athletes, I was extremely competitive, driven, and goal-oriented. I was also willing to play through anything. My pain tolerance was through the roof, and I had an innate desire to excel at everything. I once somehow played half of a game with a broken collarbone because I didn’t want to sit out. By halftime, I walked off the field and finally went to the ER.

Between playing soccer for a club, my school, and the US Youth Soccer Olympic Development Program, I was involved in the sport practically year-round from age 8 to 18. I earned a scholarship offer to play at Louisiana State University, which I officially signed as a high school senior. I lettered my freshman year but only got playing time in seven games my true freshman season. This was not enough for me. After the season concluded, I wanted to transfer to another D1 school where I could make an immediate impact on the field. I went on official visits to Appalachian State and College of Charleston, accepting an offer from the latter. It was truly the perfect-sized program for me, and I was able to secure a starting spot as a center midfielder in the fall of 2010, my sophomore year. But after playing through a series of concussions that season, I was never cleared to play soccer again.

My first diagnosed concussion was not until I was 19 years old. I have no idea how many undiagnosed concussions I sustained over the years. My parents can remember tournaments where I took significant hits, but I always eventually got up and kept playing. We never thought anything of these hits, and we definitely didn’t realize something as seemingly minor as heading a soccer ball could have any long-term neurological consequences.

In hindsight, the first sign something was wrong with my brain was the excessive, inappropriate weeping — and my inability to stop it. I had no clue this was a concussion symptom. No one ever told me, so how could I have known? At the time, most doctors didn’t think the two were related.

I couldn’t lie this time and say I felt OK enough to play. I couldn’t even get a word out between the profuse sobbing. So, I was finally forced to sit out, officially in concussion protocol. No school, no contact, no running, strict rest. Being a stubborn athlete, I was secretly running and training the entire time. In my defense, I didn’t know there would be a cumulative effect to my brain and that the symptoms could or would be permanent. I thought the pain of pushing through these concussions would be fleeting. I certainly didn’t realize it could mean my symptoms would be persistent. I also didn’t realize the number of repetitive impacts I was taking would put me at risk of developing a neurodegenerative disease.

I also suffered from cognitive deficits, making it nearly impossible for me to finish my undergraduate degree. It took the next six years to finish my last four remaining academic semesters. Before my concussions, school was always easy for me. I was a pre-med biology major with a 4.0 GPA. After my concussions, simply sitting through a three-hour science lab was absolute torture. I could not function like before and had to drastically reduce my course load. I swapped out medical school for a more realistic goal of becoming a nurse practitioner. Still, I was determined to fully recover, get my old brain back, and live life on my own terms.

Along with the cognitive deficits and crying spells came the suicidal depression. It’s worth noting that prior to my concussions, I did not even believe in mental illness. I thought depression was circumstantial and people who claimed to suffer from it were simply making excuses. In a matter of months, I went from not even believing in mental illness to experiencing depression so severe I was barely clinging to life.

To this day, the suicidal depression remains the most difficult for me. I am fortunate antidepressants work for me, because I don’t think I could survive otherwise. Admitting this doesn’t make me weak; it makes me honest about the damage to my brain. I attempted suicide twice in my early 20s, when I was still drinking alcohol. I quickly learned alcohol and my brain do not mix well anymore.

It wasn’t just the suicidality that worsened, but also the rage. By my mid-20s, fits of rage started popping up more and more. I had been dealing with suicidality and other post-concussion symptoms for about five years when the rage began. I also became increasingly sensitive to alcohol, and one beer actually made me attack and bite another person like a wild animal when I was 27. I have not touched alcohol since. These rage episodes are scary enough when I am sober; adding alcohol to the mix is like throwing gasoline on a fire.

I’m not sure when it became evident to my family and I that this was not just PCS anymore, but something much more serious. These events over the years made it obvious my brain was getting worse, and we might be looking at a whole different beast: probable CTE. One thing you must know about my story is I always assumed I would make a full recovery from my college soccer concussions. I wasn’t resigning myself to the fact that I probably have CTE and giving up. Three months of hyperbaric oxygen therapy, countless neurorehabilitation stints — vestibular rehab, cognitive therapy, you name it. I tried everything in the books for a decade.

While working towards my goal of becoming a psychiatric mental health nurse, I took a job in the behavioral healthcare field after earning my degree in 2016. Then, only six months in, I was assaulted by a patient. I have no memory of the event, but I was jumped and tackled to the floor, dragged across the floor by my hair, and kicked and punched repeatedly in the head. This, after sustaining a serious concussion (again, on the job due to a patient assault) three weeks prior. Both of these incidents were devastating. I had just moved to Nashville and worked so hard to bounce back from my career-ending concussions sustained during college soccer. Years of post-concussion symptoms meant spending most days confined to a dark room battling suicidal ideation, debilitating migraines, extreme sensitivity to noise and light, and disabling cognitive deficits. But I persevered and completed my degree, got engaged, and planned to enroll in Vanderbilt’s accelerated BSN program.

Unfortunately, the concussions I sustained while working in behavioral healthcare made my symptoms worse.  I can no longer hold down a job at all. But here’s the thing — my brain was already worsening before these concussions. My fine motor skills were deteriorating and the cognitive deficits I dealt with were not getting better. My suicidal depression also kept getting worse, requiring higher doses of the antidepressant that works for me. The concussions from work were simply the final straw.

Please take concussions and CTE prevention seriously. The scariest part about having probable CTE is neurobehavioral dysregulation. It leads to violent behavior with no basis in reality. I’m not sure if there is anything more terrifying than witnessing yourself fly off the handle, screaming at the top of your lungs, physically violent, filled with rage and suicidality, all while being completely unable to regulate it. This disease makes one a monster at times. Andrew has learned to spot the signs — the dead look in my eyes, the irrational anger, the terror. It is partially traumatizing for him to see me in these states, but I am grateful to have someone that loves me through this disease and can see and appreciate when the real “Kelly” is present.

As my probable CTE progresses, I also have days where I am not “here” mentally. Andrew says he can tell whenever I’m absent. “It’s like you’re not really there; you’re not behind your eyes. You’re completely gone,” he says to me through tears. “I just miss my Kelly, that’s all.” He is right. I am cold, empty. My expression is flat. The life behind my voice is gone. I can’t even think. I feel like the walking dead. I have no idea where I’ve gone. All I know is that I’m not here.

These types of days, filled with vacant eyes and blank stares, are popping up more frequently. I am sad for my husband and how he has to witness my mind and personality deteriorate in front of him. I don’t think this is how he pictured our 30s. He has to cope with little losses of me on a daily basis. Degenerative brain diseases like CTE are devastating for the entire family. I am not ready and don’t want to fade away, but I will try to embrace this next chapter with grace and dignity as I hold on to myself with all I can.

For the past 13 years, what I originally viewed as a journey of recovery has gradually shifted to one of acceptance. I have found the most solace and comfort by being brutally honest about my situation and accepting my brain and this disease for what it is.

Fortunately, there are some treatments that have helped. Medical marijuana specifically has improved my quality of life tremendously these past three years. It keeps me present when I appear to have that lifeless look in my eyes. It also helps with sensory overload, fits of rage, and my suicidal depression. I’ve also found a medication which regulates my behavior. It not only prevents the random inappropriate weeping, but has eliminated so much of my anger episodes. Last but not least, the antidepressant sertraline has been a lifesaver.

In addition to neurobehavioral medication, I lean heavily on my support system. My family fully supports me and understands CTE. They have been with me on this journey every step of the way. I am forever grateful for these amazing human beings whose love has often been the catalyst and motivator for me to hold on and endure. I’ve learned over the years that support can come in many forms. My dogs often help me get out of bed on days where I do not have the strength or willpower to do so myself. I have found myself reaching out to the Concussion Legacy Foundation through their CLF HelpLine (thanks guys!) more times than I can count over the past 13 years. Please know that you are never, ever alone.

It’s important to know even if all your support systems seem to fail, you are stronger than you realize. If I can survive this, so can you. I know it can feel overwhelming when the darkness hits. I know it’s impossible to feel even a sliver of hope things will ever get better. You need to remember the only constant is change; that these feelings will pass, and that you will be reminded again life is worth living. I have been at rock bottom a million times, my brain yearning for death by my own hand, but I have learned to find the light in the darkest recesses of my mind. And if there is no light to be found, I tell myself my brain is playing tricks on me, and that to give in to the suicidal depression would mean CTE wins. I am competitive and will never let CTE win. So, I press on, and so will you! Just remember, never stop reaching out to others when you are depressed. None of us can get through it alone.

The thought of potentially alleviating at least one person’s suffering by donating my brain to CLF to support CTE research is what keeps me going and makes all this suffering worth enduring. I can’t think of a better legacy than to help contribute to research so no other athlete or veteran has to deal with what I and so many others have experienced.

Finally, my heart goes out to all those who suffered from CTE and ultimately took their own lives. I know how hard it is to have absolutely no control over the torture your own mind is inflicting on you. I know how hard it is to choose life when your brain is telling you to choose death. Rest In Peace. Your legacies live on.

Posted: April 21, 2017

This is the story of a sister and brother.

They say you can’t choose your family, but you can choose your friends. In my case, I did not get to choose that I had an older brother. But, for as long as I can remember, Drew was always my best friend.

Drew was born on June 15, 1993. Four years later, I was born. When I look back at memories of us, so many good ones flood in. But, some of my favorites are centralized around the one thing D loved most: hockey. Whether it be the countless knee hockey tournaments that took place in our living room or the weekends I spent at the rinks cheering him on, hockey was always his thing that I loved because he loved it. Hockey made my brother so happy, even in the darkest times of his life. I will always be eternally grateful to the sport and the boys that made Drew so happy for so many years.

Drew’s whole life revolved around lacing up his skates and getting out there on the ice. Drew played hockey his whole life, spending weekends traveling with his teams and weeknights practicing. His senior year of high school, he lived with our aunt in Pennsylvania so he could play juniors hockey. He took online classes before returning to our local high school when the season ended. Drew graduated from RHAM High School in 2011 and then went away to North Carolina to attend High Point University.

Everything seemed to be going well for Drew. As much as it was hard saying goodbye to him and adjusting to being an only child, he was happy. He quickly made friends and started to get serious about his school work. But, when I think of High Point now, one story comes to mind… one where his concussions impacted him off the ice. He was playing basketball with friends and fell, hitting his head. Luckily one of his friends from home also went to school there and he called her. Obviously, when you hear someone hits their head, it is a given that they are in a lot of pain. However, his speech was slurred and he wasn’t making much sense. This is when I began to realize how damaging head trauma is.

I always knew Drew had a history of concussions. At a very young age, he got his first one during a game. Being 6’4” and scrappy, Drew was always the first to jump off the bench to defend his teammates or run his mouth and antagonize his opponents. Being the “enforcer” comes with lots of responsibilities, but in Drew’s case, it also came with a lot of concussions.

To be honest, I am not sure just how many concussions D had in total… sometimes I felt like a simple bump of the head brought on symptoms. Sometimes, I think he wouldn’t say anything because he didn’t want to be taken out of the game. But, it wasn’t until the last concussion that made brushing them under the rug impossible.

I will never forget where I was when I got the phone call saying that everything changed for the first time. He had come home from college his freshman year and joined another junior hockey team in Massachusetts. I was at my friend’s house when the home phone rang for me. It was my mom. I always had a fear of not being at Drew’s game in case something happened. Nine out of 10 games he was ok… this game he wasn’t. Someone checked him, but it was not a normal check. The other kid’s stick was pushed against his chin, popping Drew’s helmet off. When he landed, his head hit the boards then the ice. My mom had said he was coming home after going to the hospital.

When he came home, he was out of it and in a lot of pain. His last memory was being hit, completely forgetting the process of going to the hospital and getting home. After going to the doctors, they told him that his brain damage was so severe, he was never to play a contact sport again. A huge piece of Drew never came home with him after that game. This is when his worst nightmare came true and mine started.

I find it hard to verbalize who Drew was, because quite honestly, I have never met anybody like him. He was kind, but protective. He was smart, but an idiot at the same time. He was capable of being serious, but preferred not to be. After a bad day, I would come home to his freckled-face and goofy smile and no matter my mood, laugh until tears rolled down my cheeks. He made everyone laugh. Underneath his 6’4″ stature, Bauer jacket and exterior “game face,” lay a heart of gold. He would do anything for anyone if they just took the time to ask. He did everything for me. Most of what I know today, Drew taught me. Most of who I am, Drew inspired me to be.

When I think of my brother, I don’t like to think of the negative. I like to remember Drew as my goofy idiot older brother who had a magical power to make me laugh when no one else could. We had so much fun together doing anything, even grocery shopping. As much as we laughed and joked around, he was my rock. He was the strongest person I know. He was able to read my face and know exactly what I was thinking or feeling. And if it was something he could fix, he would. That was Drew.

After that hit, Drew was never the same. For weeks, he sat in a dark room refusing to talk to anyone. Yes, he was in pain from his concussion… but I think that what hurt more was losing hockey. Desperate to get back on the ice, he used to hide his hockey bags in the bushes in hopes my mom didn’t see. That hit changed it all. Drew scored a 2100 on his first attempt at SATs. However, simple things that once were easy for my intelligent brother to accomplish became frustrating. School work that I used to ask him for help with became so challenging, I found myself tutoring him. He became irritated a lot faster, snapped a lot quicker and smiled a lot less.

With this being said, Drew attended trade school to become an electrician and graduated top in his class. The work, though harder for him, got done. Concentrating, which was again more difficult, was accomplished. He did it. He started playing men’s league, which was non-checking, reintroducing hockey into his life. He got hired for a local electrician shortly after and started working immediately. He loved it. I was so proud of him. I thought things were looking up for Drew and I had high hopes that his new-found success was enough to keep him here. I so badly just wanted him to be happy.

On February 17, 2016, my brother took his own life and his last breath. Something like this still does not make any sense. I am consumed by pain, guilt and emptiness. Words cannot describe this feeling of life without my best friend right beside me. It has been over a year and I still can’t understand why or how… “why did he leave, how am I never going to hug my brother ever again, why didn’t he say something that night, how am I going to live life without my best friend?” I will never get any of these questions answered.

Drew used to tell me that he knew his brain was not working and that there was something wrong. He said he could feel himself being incomplete. He felt his brain change. I so desperately wanted to help him or give him answers myself. However, at the time, there were none.

However, after deciding to donate Drew’s brain, some of my family’s question found clarity. His brain was diagnosed with Chronic Traumatic Encephalopathy (CTE) as well as Post-Concussion Syndrome (PCS). The more I learn about CTE and PCS, the more I answer Drew’s questions. I wish I could call him and tell him he wasn’t crazy… that the changes and confusion he was feeling, he was not alone in feeling. Maybe he would still be here today if he had the answers.

My brother’s death was my worst nightmare that every day I wish I could wake up from. But, I know I never will. With this being said, what my family and I went through is something that another family should never have to experience. Drew’s death is a reminder of how important safety and observation is. No matter how bad they want to get back on the ice, don’t let them until they are ready. No matter how much they love the sport, no game is ever worth saying goodbye.

Before this, I had no idea what I wanted to do with my life. However, now my life path is clearer than ever. Brain damage and CTE are such an important cause that needs to be more well known. Through connecting with the Concussion Legacy Foundation, I learned a sad truth that my family is one of many families devastated by CTE. I want to help families like mine. I want to help kids like Drew. I want to make a difference. I want to carry out Drew’s legacy.

 

Since his passing, our family and friends have been committed to spreading the word of CTE and brain injuries. Each year we host an annual golf outing in his honor. All proceeds are donated to Boston University and the Brain Bank to further research and hopefully help other families.

Although Drew’s earthly journey has ended (far too soon), his passing continues to teach me things every day. I now realize that brain injuries are not something to mess with. Although the consequences can be life-altering, if you realize the severity and the potential dangers, avoidance is possible. So, if you or anybody you know suffers from similar conditions, please, please, please seek proper medical attention for the sake of you and your family. Had Drew known then what I know now, things could be different. Regardless of circumstances, Drew has always been and will always be my big brother–partner in crime–bodyguard (at least he’d like to think so)–role model, but most importantly–my very best friend. I know he walks beside me each and every day and I feel blessed to even have had the opportunity to have him in my life for the time that I did. We’ll always be together in mind & in spirit, jamming to our favorite song… “Like an ocean you can’t see, but you can smell…but I do know one thing, where you are, is where I belong.”

However, I do not want his death to be the only thing his legacy stands for. I want my brother to be remembered for the happy, loving, wiseass he was. I want memories of Drew to bring smiles to people’s faces. I want Drew to be remembered as the real Drew, who he really was before CTE. With this being said, I want his absence to serve as a constant reminder to all…

Posted: April 3, 2017

The crash

Former professional cyclist Kathryn Bertine speaks cogently and confidently as she discusses her decision to pledge her brain to the Concussion Legacy Foundation. “When my time is up, I certainly don’t need my brain, but if somebody else can benefit from understanding it, then that makes me so happy.” Kathryn’s voice has an unmistakable liveliness and optimism to it, as though she’s sitting across from a young cyclist that might someday benefit from the research she is supporting with her pledge.

That liveliness and optimism might be the byproduct of surviving the crash that left her lying on a road in Mexico, her skull broken in two places, seizures overtaking her body, her family hundreds of miles away. That crash was one year ago today.

 

On April 3, 2016, Kathryn was competing in a professional UCI race in La Paz, Mexico, a city 920 miles south of the California border. As a pro cyclist for five years and an amateur racer for five years prior to that, Kathryn had raced in events like this for a decade, never so much as seeing a major crash, and certainly never being in one. But this day was different.  As the cluster of racers made its final push a mile from the finish line, the woman just ahead of Kathryn crashed. Kathryn was the first rider to hit her from behind, and was launched into the air. Her head hit with a smack. Dozens of women crashed behind her. Bodies flew, knees skidded, and bikes and bones crunched together and piled on top of Kathryn.

 

When the wreckage began to clear, some of the affected racers gingerly got back on their bicycles and finished that last mile. Others cleared to the side of the road to tend to more serious injuries. Kathryn was sent into seizures. She had broken her clavicle, suffered two skull fractures (right temporal and sphenoid bones), and endured a severe concussion from the coup-contrecoup brain injury, as she would later be told. Kathryn could only lay helpless while the chaos of the scene spun around her.

 

A doctor whose job was to follow the race rushed to Kathryn’s aid and for an excruciating eight minutes, he carefully gauged the level and frequency of Kathryn’s seizures, hoping they would slow. They didn’t. Calculating that an ambulance would take too long to deliver his unexpected patient to life-saving care—“She’s leaving us,” he said in Spanish—the doctor decided he had to act immediately. He rushed back to his van and returned in time to inject her with a serum similar to Ativan, the drug commonly used to treat epilepsy. It slowed down the seizures, and saved her life.

 

 

The next 72 hours were touch and go. Doctors at the Mexican hospital where Kathryn was delivered were monitoring the massive swelling in her brain to determine whether or not she would need surgery. Her seizures became more minor until they finally dissipated enough for the doctors to decide they wouldn’t need to drill into her skull. Kathryn spent five days in the ICU of that Mexican hospital before she was airlifted back to the trauma unit of the University Medical Center in Tucson, Arizona. Her memory of these days consist only of a snippet here and a snippet there. Green Jell-O that she was fed by the nurses. A soft, brightly-colored fleece blanket. A companion who had flown in to be by her side. But mostly, that tense time when Kathryn’s family waited to hear whether she would regain normal brain functioning was, to Kathryn, just a fog.

Recovery

“Whether through social media, real friends who I see on a daily basis, or strangers, everybody was truly kind and supportive of me. That moved me. That genuinely moved me, to see that people cared that much.”

Kathryn looks through some of the many well-wishing cards she received during her recovery.

Kathryn’s next stop after the near-two weeks in the trauma unit was yet another hospital in Tucson—St. Joseph’s—where she was monitored and evaluated for brain function. After a week there, she spent a month in bedrest at her father’s home to regain the strength to transition back to living her life. She had to overcome her own stubbornness at times; understanding the challenges that lay ahead was the most important part of setting her recovery on the right path.

“I remember sleeping a lot. I took that very seriously during recovery – that rest was best. That was hard for me to juggle as a professional athlete; being there laid out on the couch was something that I clearly struggled with.  I was thinking, is it going to be this way forever? Am I going to be able to return to the life I loved as an athlete? Am I going to be able to use my brain again to full functionality? I just had to be patient during that part of the journey.”

Kathryn’s network of caregivers provided comfort and inspiration. “I felt surrounded by people who were supportive. My dad, my friends, my business partner, my former boyfriend, even cycling fans and complete strangers… everyone was so incredible, kind and helpful. Finding a support network of close loved ones where I could be honest about how I was feeling helped me progress tremendously, because I could be my authentic self. That’s something I would suggest to anyone who is going through any type of brain injury, to have those people, whether family or friends or doctors, who work with them to get over those emotional and physical hurdles. That did such an amazing thing for me, to be able to have people to talk to.

In July, Kathryn joined her team in Bend, Oregon to race for the first time after her accident.

The need for patience continually revealed itself, reminding Kathryn to listen to her body and be deliberate with her recovery. There was no shortcut to this finish line. As time passed, her strength increased.

Kathryn’s year of recovery inevitably led her to reflect on the issue of brain trauma within her sport. She didn’t emerge with a fear of riding or a regret for the sport she chose. After being carefully monitored by her doctors and neurosurgeons, she even got back on the bike late last summer for one final event in pro cycling.  “I wanted to race once more,” she says, “but not to win. I won when I woke up in the hospital. This time, I raced for personal closure.” She wanted to mark the end her professional career with something other than a traumatic brain injury, and she did so successfully, finishing the race safe and sound.

But Kathryn did emerge with a more crystalized perspective on safety in sports. People who learn about the severity of her accident always ask whether she was wearing a helmet, Kathryn says. “Of course I was! But even if you’re wearing a helmet, really bad things can happen. We don’t address that enough in any sport.”

The pledge

“When my time is up, I certainly don’t need my brain. But if somebody else can benefit from understanding it, that makes me so happy.”

After retiring from professional cycling in 2017, Kathryn Bertine now works as CEO of the Homestretch Foundation, which combats salary inequity for women in professional sports.

The VA-BU-CLF Brain Bank has now accepted more than 400 brain donations, and has received over 1,500 pledges. Most of those donations and pledges have come from men. By pledging her brain, Kathryn becomes the first official pledge from professional cycling and joins a growing list of prominent female athletes to pledge and raise awareness of the importance of concussion and CTE research. The list includes soccer legend Brandi Chastain, Olympic gold medalist Nancy Hogshead-Makar, and most recently Olympic hockey icon AJ Griswold, a friend of Kathryn whose story inspired her to pledge. These high profile pledges are making a difference; female brain pledges in 2017 are on track to triple the amount received in 2016.

“This pledge gives me emotional closure. If I am lucky enough to live through this traumatic brain injury, it makes me so happy to pledge my brain to research so that others can learn from what happened to me. I hope my story can help encourage other cyclists and athletes to pledge too.”

Exactly one year after her horrific crash, Kathryn Bertine is in high spirits with an eye toward the future. She tells her story as a way to rally the cycling community to contribute to brain trauma research. She is planning a trip to La Paz, Mexico in May to thank the doctor who saved her life. When asked her impressions of the doctor, Kathryn says: “He’s incredibly humble.  I had tears in my eyes as I wrote a note thanking him for saving me in the middle of the road, and he humbly replied, ‘I was just doing what needed to be done.’” Altruism, it seems, is contagious.

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.

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.

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.

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/