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

I am honored CLF asked me to share a little about myself and provide some of my sports background along with mental health, addiction, suicidality, and recovery. My biggest hope is that my story can help someone else in their journey.

I was born and raised in Portland, Oregon. I was the youngest of eight kids and grew up in a very athletic family. My older brothers excelled in just about every sport. My brothers played football and my siblings were involved in bull riding, horseback riding, track & field, and everything in-between. I was constantly learning from and competing with them.

In seventh grade, I started playing tackle football. My success in football took me to the University of Oregon, where I played linebacker from 1982 to 1986.

Football took me to great heights. I had the game-winning fourth down stop against UCLA. My senior year after we beat rival Oregon State 49-28, coach Rich Brooks presented me with the game ball.

 

I loved putting the uniform and helmet on. It was quiet inside the helmet. No one could see me in there. I was Clark Kent before I put the uniform on and Superman when I came out.

Over the course of my decade-plus in football, I was involved in countless collisions and hundreds of what were then known as “bell-ringers.” I was an undersized linebacker and I compensated for my lack of size by weaponizing my head. There were many instances where my teammates had to help me line up in the right place after I had made a big hit.

Back then, those hits were simply part of the game. But now I know those hits add up and I believe have affected my mental health. My head trauma is part of what I like to call the “perfect storm” of issues I face.

Addiction is another part of the storm. I became lost when there was no more uniform to wear and no helmet to hide in. The 30-plus years of my life after the University of Oregon are colored by alcoholism, poor decision-making, and denial. I was fired from a sales role for drinking on the job but still wasn’t ready to admit I had a problem.

I worked survival jobs for years to keep myself and my addiction alive. I spiraled for years before my life moved in a positive direction.

The last part of my perfect storm was the trauma I endured in my life. I lost both parents before I was 23 years old. I’ve been abused. I uncovered these traumas through eye movement desensitization and reprocessing (EMDR) therapy. Working backwards through trauma allowed me to move forward and get closer to sobriety.

By 2020, life was great. I was sober. I was working as a drug and alcohol counselor. But then the COVID-19 pandemic hit and turned everything upside down. Within six weeks of the pandemic, I had lost multiple friends to suicide and overdose. The pandemic halted all my personal and professional momentum.

I became deeply depressed. I relapsed. At my lowest point, I decided I didn’t want to live with the mental and physical pain I was experiencing. I had no idea how to find my way out. There was only one way. I attempted suicide on May 15, 2020. Luckily, a friend happened to call me to check in shortly after the attempt. She sent an ambulance to my apartment and saved my life.

Fortunately for me, I made it past that lowest point. It wasn’t overnight, and no one thing got me out of that dark hole – rather a combination of a lot of different factors that I’ll gladly share here in the hope it helps others.

I embraced a higher power. I chose God, but your higher power can be anything that grounds you and is greater than yourself.

I continued EMDR and other therapies. Dealing with past traumas, guilt, and shame allowed me to move forward. The past is a place of reference, not a place of residence for me.

I try to go to an AA meeting every day. It was in a meeting where I finally said aloud what I had been grappling with for years: “I don’t know what’s wrong with my brain.” The culture of meetings is good for me. Even if I don’t want to go, I always leave meetings feeling like I took the medicine I needed. I always say meetings are the cheapest form of therapy you could ever have.

I got more comfortable opening up, and specifically got comfortable opening up to other men. My dad had died when I was young and my brothers had already moved out of the house and lived with their families. From early on, I took on the role of protector for my mom and sisters. My years in football only strengthened my expectation that men should be tough and not come to each other with their problems. Eventually, I learned to embrace the guys in AA meetings and in football circles who had been where I had been and would support me.

Lastly, I fully embraced the power of connection. I’ve developed a “No Matter What” club full of people who know any of the members will pick up the phone, no matter what. It took me a very long time to get to the point where I could support others but being here feels great. I keep my side of the street clean and can be of service to others.

That’s how I manage my mental health and my addiction but remember – I am in the perfect storm. I know CTE may be part of my reality. I suffer from short-term memory loss. Looking back, I can see my decision-making has been poor. I can be impulsive. I know so many of my football brothers face the same question I do about whether we are living with CTE. It’s a difficult place to be but there are things we can do to help ourselves.

First and foremost, we have to take care of our bodies. For me, that means no drinking and no drugs. It means getting good sleep and eating well.

I also find success being consistent with my lifestyle and keeping things simple. I often ask myself, “What’s good for Dan?” The answer might mean I have to disappoint others, but I know what I need to do to protect my physical and mental health.

Connection is also a key part of living in the face of CTE. Sure, so many of us wonder if we are living with the disease. But to flip that around, so many of us can connect and bond over the fact that we share the same worry. We are not alone, and we can’t do this alone. Believe me, I have tried more than once to do it my way and failed miserably.

My final way to manage my perfect storm is by stepping outside my comfort zone and doing things that fill my heart. I’ve got a big novel experience, albeit in a familiar place, coming up soon. On Saturday, October 1, I will be honored by the University of Oregon in the Ducks’ home game against Stanford. I was extremely flattered by the honor but also knew the experience will also bring up several intense emotions. I’ll think of ex-teammates I’ve lost. I’ll have to go to an airport – an extremely triggering environment for many addicts. A younger me may have run from the moment, but some friends urged me to go. To help things, I’ll be going with a member of the No Matter What Club.

Connection has turned my life around. I’m happy to do what I can to connect with anyone else out there struggling. If you want to connect with me, please don’t hesitate to reach out. I’m always available at [email protected].

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Suicide is preventable and help is available. If you are concerned that someone in your life may be suicidal, the five #BeThe1To steps are simple actions anyone can take to help someone in crisis. If you are struggling to cope and would like some emotional support, call the National Suicide Prevention Lifeline at 988 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call.

Are you or someone you know struggling with lingering concussion symptoms? We support patients and families through the CLF HelpLine, providing personalized help to those struggling with the outcomes of brain injury. Submit your request today and a dedicated member of the Concussion Legacy Foundation team will be happy to assist you.

I’ll begin my story with a bold statement: I’ve sustained so much sports-related head trauma over my lifetime that the amount of damage my brain has endured has to be among the upper tier of all former athletes who have suffered concussions. Is this me sensationalizing, is this me trying to convince you of how tough I was, or is it me attempting to embellish my story? The answer to those is a loud and resounding, none of the above! It makes me nauseous to think about it, let alone put it in writing. I have mixed emotions stemming from frustration, regret, and fear of the dreaded question: do I have CTE? I blame nobody but myself and the overall lack of education during the era in which I played contact sports. Rather than pointing fingers or placing blame, I’m sharing my story not only to highlight the risks of repeated head impacts but also to ensure people know they’re not alone and there are resources available.

 

My journey started and ended like many others who began playing contact sports in the mid 80’s up until retirement as an adult. I knew there were inherent risks in playing contact sports. I knew the chances of being injured were greatly increased the more I played, and the longer I played them. I’ve sustained broken bones, stitches, sprains, and all kinds of ailments related to sports. I do not regret for a second the path I took to get where I am. What I do wish, however, is that the information available today on concussions (the signs/symptoms, reporting, etc.) and potential long term health effects were available to me when I was growing up. Again, I want to be clear: it’s nobody’s fault as to why things played out the way they did. But I want to implore everyone to get a holistic view on concussions through education and research, speaking with experts in this field and to other former athletes who have suffered sports-related brain injuries. Below, I’ll lay out a few scary truths and long-term effects, all of which have stemmed from my personal history of suffering multiple concussions and repetitive head impacts.

I was a Division I lacrosse player for The Ohio State University. I was also a three-time All-Conference and an All-American my senior year, after which I was drafted into the National Lacrosse League and played one year with the Colorado Mammoth. Sadly, I had to retire at 25 because of countless concussions. Leading up to the final “break the camel’s back” (or put another way “almost obliterate Curt’s brain stem”) hit I suffered, which led to five months of Post-Concussion Syndrome (PCS), came a colossal list of concussions that began at a very young age.

I was always athletic from as far back as I can remember. I was on hockey skates when I was two years old, picked for numerous rep teams in multiple sports, always picked first in PE class, etc. However, I gravitated mostly towards contact sports. During my era, I’d hear things like,” shake it off, sit out a shift then get back out there!” or, “oh you just got your bell rung, toughen up!” and of course, “you don’t want to let your team down do you?!” These were ideologies I lived and breathed for the multiple teams I was on. Yet later I came to find out all the while I was doing irreparable damage to my brain and changing my personality along with it.

I grew up playing lacrosse, hockey, and rugby, all three of which were relentless when it came to blows to the head. I was introduced to box lacrosse (indoor version) by my second-grade teacher, who suggested it to my parents. She noticed I was faster than most kids and loved to roughhouse with friends during recess. My parents signed me up and I fell in love with the sport immediately. This was back in 1987 when we were allowed to cross-check, slash and body check each other. It wasn’t just legal, it was encouraged! I can vividly remember laying kids out and being praised for it. I also remember multiple times, being on the team bus coming back from tournaments with what felt like migraine headaches. The team trainer would be rotating ice cold cloths on my head to try and alleviate the pain.

When I reflect on those years, I realize it wasn’t until around 12 years old the cascade effects of concussions began to manifest. 1992 was when the intense, social anxiety began to creep in, and my obsessive-compulsive disorder (OCD) began to reveal itself. The anxiety would rear its head at different times, such as in school when I met new people, and even just attempting to buy a pack of gum from 7-Eleven, to name a few triggers. I was a quiet kid; others called me shy, and I started getting a reputation as an a**hole. This was a major misconception at the time as the behavior I exhibited back then stemmed from the anxiety and overwhelming fear of being in the spotlight (outside of sports). I had certain people I trusted and a close-knit clique, but otherwise, it was difficult to get to know me or get more than a sentence out of my mouth.

And so began a long road of wash, rinse, repeat: I’d receive yet another brain injury, dump some gasoline onto the social anxiety fire and then await the next hit. What’s the definition of insanity again? Oh right, doing the same thing over and over but expecting a different result. As crazy as it sounds, the only thing about this vicious cycle that changed once I got to college was narrowing it down to one sport instead of three.

My time at The Ohio State University was remarkable. I was fortunate enough to play with incredible teammates and under a great coaching staff, while matching up against some of the best players in the NCAA. It would be an understatement to say I was in my element. But as great as it was to play college lacrosse at the highest level, I also suffered seven concussions during my time there. After my third concussion at OSU, another long-term side effect decided to join my symptom “party,” one I wouldn’t wish on my worst enemy.

Trouble with sleep is common after concussion. Sleeping more than usual, or struggling to fall asleep and battling insomnia can happen for a short period of time or can develop into a prolonged issue for those with post-concussion syndrome. But another type of condition that I’m convinced was brought on by my history of head injuries is “Old Hag” syndrome. The actual medical term is sleep paralysis (a type of parasomnia which has been reported following brain injury) and it’s a condition where one is put into a “state,” when either falling asleep or waking up, where they are lucid and aware of their surroundings but paralyzed. The kicker here, and the worst part of sleep paralysis, is the person can hallucinate. My first episode and all others since, have had hallucinations associated with them… and they are terrifying!

When I say hallucinate, I don’t mean friendly cartoons or rainbows in the room. Its alternative name of “Old Hag” syndrome was coined for a reason. It’s associated with occult-like entities such as demons, witches, and paranormal black masses. The medical community attributes this condition to people who claim they have been abducted by aliens, just to offer perspective as to how real it feels when experiencing it. I could speak on this for hours as I still suffer from it to this day, but I encourage all to do their own research on this condition if interested.

As noted above, concussions have led to many adverse long-term effects throughout my life. Over the years, I’ve developed ways to cope with and even overcome them. Just as concussion and PCS symptoms can vary from person to person, so too can their treatment methods. What’s worked for me isn’t a cure-all for others. The key is to find the path that works for you, which is why I think it’s invaluable for all of us to share our stories and struggles, as well as certain methods of dealing with them. For me, it’s been a combination of speaking with healthcare professionals, medication, exercise, meditation, and nutrition, just to name the most impactful. The Concussion Legacy Foundation has been instrumental in my path with finding resources, hearing other personal stories, educating me on specific studies and possible treatments, and ultimately knowing at the end of the day there are MANY people out there who struggle daily with similar issues. If you have never seen the documentary Head Games, it’s incredible and a must watch. It was also the catalyst for me to start reflecting on my concussion history and to start researching the long-term effects of sustaining repeated blows to the head.

My decision to pledge to donate my brain to the Concussion Legacy Foundation was an easy one and was based on a few factors. Former football players dominate the discussion when it comes to CTE, and for good reason. There isn’t a higher profile sport, or organization than the NFL in the United States. Highlighting former NFL players who struggle is well documented and highly publicized. Part of the reason I wanted to donate my brain to the Foundation was to show lesser profile sports such as lacrosse can still yield the same results. The second reason was to contribute to ongoing research and the goal of finding a cure.

I’m as certain as I can be I have CTE (seeing how the only way to confirm is post-mortem). I look at my history of concussions, nonconcussive impacts, and the countless times seeing stars after all those hard hits (which I now know is a concussion). Combine those with my present-day issues of forgetfulness, poor impulse control and moments of intense irritability and you’ll understand why I self-diagnosed. It’s a sobering thought and I really hope I’m wrong but I’m not one to live with regrets or worry about things that I have no control over. In regard to my concussion history and probable CTE, all I can do now is share my story and educate others on the risks of playing contact sports, reasons to never hide concussions from your coaches, and to NEVER attempt to “tough through” a concussion and continue playing.

Trust me when I tell you from experience, it won’t end well.

My whole life, all I wanted to do was to work with kids and help change their lives for the better. I played college football so I could get my degree and work in education to help kids. I wasn’t the best student, but I knew football could put me in a position where I could control my circumstances after college.

I played hard to earn and keep my scholarship. During my career I suffered multiple concussions that I wasn’t aware of. I was negligently put back into games, which only made things worse. I was playing through concussions that I didn’t remember or understand. At one point, my dad had to leave the stands and step in to tell trainers to keep me out of the game.

I’ve been through it all after my football career ended. I have experienced the lingering effects of multiple concussions. I’ve developed epilepsy, which induces grand mal seizures. These seizures are unpredictable, scary, and immensely painful. My shoulder would dislocate so often during these seizures that I had doctors drill a titanium screw in my shoulder to keep it in place. I’ve also had laser ablation surgery to get my seizures under control. Doctors have told me I’ll never be epilepsy-free, but my seizures are less severe and less frequent than they used to be.

I’m ecstatic with where I am now in my life and the control I’ve gained over my mental health, but it wasn’t always this way.

Football was supposed to be my gateway to the life and career I wanted. I always had the energy and passion to work with kids and help others. But suddenly, I didn’t want to be around anybody. All that passion was gone.

I had no sense of control. I couldn’t control my seizures, my memory, my anger, my depression, or any aspect of my mental health. As a result, I couldn’t accomplish any of the goals that used to be important to me. I couldn’t work. I couldn’t be the father I dreamed of being. I had lost control – and there is no scarier feeling.

Think about driving a car. If suddenly you lost control of where the car is going or how fast it’s going, something tragic would happen to you or to others. But if someone sees you driving a car towards them, they would be very scared. That’s exactly how I felt. I couldn’t control who I was, and the outside world couldn’t understand my reality.

My spiral out of control led me to the brink of homelessness. I had lost the people who could support and take care of me. I decided to take control of my life, my narrative, and the man I wanted to be.

The first thing I could control was getting medical care. I met doctors who believed they could help me. The surgery helped get my seizures in check, but there wasn’t a surgery to help my declining memory or my lack of emotional stability. To help navigate my new world, I learned the power of communicating what I was going through.

I couldn’t control my symptoms, but I could control how much people knew about them. It’s very hard to admit you have an invisible injury and open yourself up to the judgment that might come from that. But I learned that explaining my brain injury history allowed people to accept me in a different way. By explaining how I might have the occasional seizure or outburst or how I might struggle to remember things, people could meet me where I was.

Once I could communicate my situation, I found gracious employers who accepted me and the problems I face. My current employer, Rivian Electric Adventure Vehicles, allowed me to work. They respected my reality, valued me for who I am, and developed protocols for how to respond if I had a seizure so I could become a productive individual in society.

 

Having financial control of my life again is amazing. I don’t have to rely on others to provide for myself or for my daughters. I am reminding myself of what I am capable of. I can work. I can buy things. I can go on runs and work out again.

Rivian’s company slogan is “keep life adventurous forever.” Returning to normal life after what I’ve been through has been an adventure. I’ve had to brave the unknown and adjust to a new reality. But I am so grateful for the opportunity to do so. I hear other people complain about going to work every day and I will never be one of those people. I am humbled to get up and go to work every day and to be in control of how I feel at work every day.

I’ve lost a lot and know the journey ahead won’t be easy, but at least I’m in control again. I want the next generation of football players to be in better control of their mental health than I was.

Don’t get me wrong – I love football. I still watch the game. I played defensive back and I understand how difficult it is to keep your head out of tackles, so I get upset when I see players get ejected or penalized for targeting. We should try to limit the amount of head-to-head contact as much as possible, but I worry we are focusing too much on penalizing the big hits. We also need to focus on making sure players with concussions are comfortable speaking up about their symptoms. We need training staffs to give thorough concussion evaluations to players after big hits. And perhaps most importantly, we need to be looking after athletes’ mental health after they suffer concussions. Kids playing football, chasing their dreams, shouldn’t have their lives and their futures destroyed from playing the game. Our brain is the most important tool we have, and we shouldn’t sacrifice that for football.

That starts with us as players. People on the outside can’t tell if you’re struggling unless you let them know. I want players to be able to say, “I’m scared. I’m hurt. I’m in pain. I’m out of control.” We look like these big, strong people who are invincible. But we need to get away from being silent about what we’re feeling.

But we also need allies. So many people are in invisible battles with brain injury, mental health, and mental illness. If you see someone struggling and you don’t understand why, consider the root cause of their problems. They might not be in control of their situation.

I give CLF a pat on the back on behalf of people like me. Knowledge and understanding are essential. CLF and other organizations in the space are key to education the public and supporting the brain injury community to move forward. Thank you for the platform and allowing me to be an advocate for others.

October 2022 Update to Adrian’s Story

I was motivated to write another update on my story because the idea of control continues to be a constant in my life.

First, the death of former Denver Broncos receiver Demaryius Thomas in December and his CTE diagnosis this summer was very alarming to me. Demaryius Thomas died of a seizure. I have had hundreds of seizures due to my epilepsy. People in the epilepsy community live with a fear of sudden unexpected death. Demaryius’ death and diagnosis were reminders of the realities of what I’m up against and the lack of control I have.

Second, I’ve lost my job and my marriage in the past year. These losses have been painful and made me reflect on certain things.

I lost my job because I was having seizures at work. As I wrote in my last story, I underwent a surgery that helps to limit the severity and frequency of my seizures. That has been extremely helpful for my day-to-day life, but my job had me working around lithium batteries. Lithium exposure can trigger seizures, so my job became unsafe for me. There’s another example of control – my disabilities limit the amount of work I’m able to do and therefore hurt my ability to support myself and my family.

I came into a relationship sick and lost. While I was figuring out my health situation, my health put stress on those around me and made it difficult to being a man living in a no-excuses society. Ultimately, I don’t want others to be miserable trying to be there for me.

I know there are plenty of other people with brain injuries who have been separated from their families. My message to them is to continue doing the best with what you have.

Our brains control everything. And injuries to our brains can therefore change everything, too. It’s extremely hard for people like me who live with brain injuries. We are constantly fighting to be the people we once were. We are fighting against society to tell them we have these disabilities. We fight through physical and emotional pain we can’t control.

We can apologize for the pain our brain injuries have caused others. But we can’t apologize for getting up and trying our best to survive in a world that’s not equipped for our disabilities.

Jeffry’s love for bikes came early, getting his first motorcycle at just 5 years old. Oh, did he love the freedom of putting on a helmet and going fast. He was always drawn to jumping his motorcycle; his family coined the phrase “Jumpin’ Jeffry” at a young age. Jeffry was always a daredevil in some aspect – from climbing trees or rock climbing to jumping his BMX bike.

Jeffry’s first substantial crash happened when he was six. He was riding in the desert with his family and had his 50 at full speed, somewhere around 25 mph or more. He tucked his head and twisted the throttle to the max. Jeffry then saw a washout in front of him from a rainstorm. He did not have enough time to hit the brakes, so he decided to try and lift the front of his bike to clear the gap. That didn’t work and he buried his front tire in the ditch, bringing the bike to a dead stop. Jeffry was flung over the handlebars and traveled over 20 feet. The visor on his helmet broke, and he was left completely dazed. His motorcycle’s front forks bent the tire into the engine due to the harsh impact. He later remembers his dad using a sledgehammer to get the forks unbent. This was the first of many concussions throughout his early riding life.

He did not know the effects of falling while riding motocross would start to add up.

Jeffry grew up in sunny California so there was plenty to do. He started playing football when he was 12 and even won a CIF Championship with Newport Harbor High School in the process. There were many undiagnosed concussions to the head Jeffry can remember from his football days in the mid 90’s. Over and over, collision after collision. He was having a hard time focusing in school and was challenged with forgetfulness. Jeffry’s family at the time associated it with just being lazy or not following through on something.

“Back then there was no concussion protocol,” said Jeffry. “If you could play you were back in the game.”

Toward the end of high school, motorcycle riding really started to take off. Jeffry’s skills were improving, and he started collecting sponsors. He went on to compete in 125cc motocross races. After racing and jumping in the hills of Beaumont, California, he knew he had a skill and subsequently turned pro.

But going big comes with a price, including numerous hard falls and many broken bones. The love for flying on a motorcycle though, kept Jeffry committed to the sport. He then went from racing to Freestyle Motocross, turning pro shortly after the transition. He started jumping ramps and performing more challenging stunts. This resulted in numerous concussions. Things got harder for Jeffry; he was more snappy and not as nice as he once was. He only cared about riding and himself. He was changing and no one knew why.

Jeffry qualified for the X Games three times, competing with the likes of Travis Pastrana and Brian Deegan to name a few. Then a big fall happened in Northern California that would forever change Jeffry’s life. He was hard at work preparing for Games’ qualifiers, learning a new trick to bring to the big show. His riding friends (other pros) helped him pull the ramp back to a much bigger gap. This gap was nearly impossible to clear in second gear, so third gear it was. But jumping a ramp is a lot different than jumping on dirt – while not as much speed is needed, an extra push is important at that distance.

As Jeffry was practicing, he turned the corner and started running up to the ramp. He hit it at the right speed and twisted the throttle. But near the top of the ramp, the bike’s engine stopped. He had slowed down enough that he was not going to make the landing. Jeffry pushed off his bike and jumped for it, flying in the air about 30 feet high traveling roughly 35 mph. He landed on his back. Everything at the time went numb. He then slid down due to the momentum before losing consciousness. Jeffry was out for some time. No one recalls exactly how long. But he woke up to a serious concussion, a broken C7 and C3, a torn groin, and many ligament tears all through his neck and back. It took more than six months of rehab to get back to mostly normal, though he still does not have full mobility in his neck. This was by far the worst of his TBIs.

After that accident, Jeffry decided to hang up his boots. Through all the broken bones and many concussions, it just didn’t make sense for him to continue. He walked away from the sport he loved and began a semi normal life. He battled depression, anger, anxiety, heavy drinking, and the list goes on. For years he had a chip on his shoulder. He lost many motocross friends to suicide or overdose. He then later sought help to better learn about chronic traumatic encephalopathy (CTE) and the effects of repetitive head trauma.

“Understanding CTE was extremely important to me,” said Jeffry.

After learning more about CTE, Jeffry decided to pledge his brain to the Concussion Legacy Foundation for research. He saw the effects of brain injury to his close friends and other extreme sport athletes and knew a few who were diagnosed with CTE after death. Nobody knew that their livelihoods as motocross professionals would turn out this way. If they would have known, Jeffry doesn’t think they would have jumped dirt bikes for a living.

“Most of us who were professional freestyle motocross riders just assumed we were like this,” said Jeffry. “We didn’t know about TBI and CTE. But I have been working on speaking with my fellow riders on social media about this so they can be aware and seek the help they need.”

For Jeffry, there is light at the end of this wild tunnel. He has tried different treatments and found meditation especially helpful. He works hard to learn new things and challenge his brain. He surrounds himself with a strong support system who can keep him positive on the tougher days. And Jeffry is motivated to maintain his brain health for his daughter.

Jeffry eventually became an entrepreneur, starting his first company, a sales consulting firm, when he was 30. He has been a private equity CEO and most recently founded Ecommerce Management and Ecommerce EDU in 2019. He has also written many ecommerce courses for top universities in the country. Living with a TBI is not easy, but Jeffry’s commitment to learn what triggers his symptoms has saved his life.

“You don’t have to quit life because your head is a little banged up,” said Jeffry. “You can have a full and great life. I am so grateful for all of the support my family has given me. Moral and emotional support. I am thankful for the doctors I work with to maintain my health. I hope my story shows you that you too can beat this thing. We are all in this together! We have each other!”

If you or someone you know is struggling with concussion or suspected CTE symptoms, reach out to us through the CLF HelpLine. We support patients and families by providing personalized help to those struggling with the outcomes of brain injury. Submit your request today and a dedicated member of the Concussion Legacy Foundation team will be happy to assist you.

Retired Lieutenant Colonel Robert Gowan experienced a substantial share of head trauma during his athletic and military careers. He grew up playing football in Houston, Texas before walking on to the football and rugby teams at the Virginia Military Institute. This was in the 1980’s, well before concussions were widely regarded as a serious injury.

His sports teams were “old school” and prioritized toughness. For Gowan and his teammates, that meant playing through pain and leading into tackles with their helmets.

One of the earliest concussions Gowan can remember came during a high school playoff game in the Houston Astrodome.

“It was a toss sweep to their running back on my side. When I made contact the lights went out,” said Gowan. “I don’t remember the hit or much after it besides looking up at the scoreboard and seeing sparks and stars flying toward me, but I finished the game. Back then if you weren’t knocked out cold and put on a stretcher you got on your feet and kept going.”

Gowan has several similar stories, as do some of his former teammates. The common factor: if they could hide their symptoms enough to continue playing, they did. Gowan’s military experience was no different.

Decades of Service

Inspired by his father and grandfather’s service, Gowan knew he was interested in joining the Army after college. In May 1988, he was commissioned as a second lieutenant in the U.S. Army.

Gowan’s 25-year military career took him all over the world. His first major assignment was in Germany at the tail end of the Cold War. Serving as a nuclear weapon technical operations officer, Gowan witnessed the toppling of the Berlin Wall, the reunification of East and West Germany, and the dissolution of the Soviet Union. Gowan took on various roles at bases throughout the United States, Korea, and Kuwait, earning jumpmaster status and commanding an artillery battery for the 82nd Airborne Division along the way.

By the time of the 9/11 attacks, Gowan was a seasoned officer. The historic events that followed, including the U.S. invasions of Afghanistan and Iraq, marked a momentous shift in his career. By 2003, Gowan was serving his first tour in Iraq.

“My military career was bisected by the events of 9/11. Everything became focused on supporting combat operations in Iraq and Afghanistan” said Gowan. “The second half of my career was very serious and intense. I saw a lot of casualties and fatalities in the men and woman I was providing support to.”

It was a new chapter in Gowan’s service and a life-changing experience. He remained committed to the Army and redeployed to Iraq in 2007 as part of a surge in U.S. Military presence before taking a post in Afghanistan in 2009. Gowan witnessed and personally experienced significant brain trauma throughout his career until retiring in 2014.

Common Brain Trauma in Military Service

Gowan knew about concussions from sports, so he was able to recognize their hallmark characteristics during military training and deployments.

At U.S. Army Airborne School at Fort Benning in 1989, for instance, Gowan landed hard during the final training jump before graduation.

“When I stood up, I was seeing double,” said Gowan. “I knew something was wrong, but I didn’t seek medical attention because it was my final jump of Airborne School. I recovered quickly enough to just move on, put it behind me, and head to Germany for my first duty assignment.”

Shaking off rough impacts was the norm. In fact, hard landings were common enough in the Airborne community that they have a saying about it: “feet, butt, head.” When a landing went wrong, usually your feet hit first, then your butt, then your head. The saying is a common reference among paratroopers to help brush off rough landings, which were often unpredictable, uncontrolled, and forceful.

Some jumps go off without a hitch, like the time Gowan completed a midnight jump onto an airfield in the mountains of northern Iraq with the 173rd Airborne Brigade, and some don’t. Even less technically challenging jumps can go wrong. Gowan’s daytime jump with the 82nd Airborne Division at Fort Brag in 1997, for example, was a comparably routine jump. At the time, Gowan was a battery commander leading a training mission. When he landed – feet, butt, head – he recognized another hallmark concussion symptom in himself.

“I remember thinking oh, boy, that was bad,” said Gowan. “As I regained awareness, I tried to speak, but I couldn’t because my speech was temporarily slurred. My first thought was that I knocked out all my teeth or broke my jaw, but when I felt they were intact, I realized it must be the hit to my head.”

Gowan felt like he didn’t have the luxury to pursue medical aid because he was in charge, so he proceeded with the mission. Gowan recovered quickly, completed the mission, and moved on. In hindsight, Gowan wishes he’d told the medical team.

Now that Gowan is retired, he wonders about the cumulative effect of these and several more traumatic incidents and how they impact his life today.

“I have concerns about the long-term effects. I have some memory issues and I have been diagnosed with PTSD,” said Gowan. “When you’re in a combat zone, you see and experience things that you can’t shake even if you want to. It’s hard to draw a direct line from a concussion or traumatic experience to later changes in functioning but the uncertainty, or the possibility, is hard to wrestle with.”

Gowan is familiar with Chronic Traumatic Encephalopathy (CTE) and knows that sub-concussive impacts, impacts to the head or body that don’t cause obvious concussion symptoms, can bring substantial long-term complications.

“I was on the delivering-end of mortar rounds in trainings, but I was on the receiving-end of mortar fire in Iraq. It’s hard not to worry about those blasts now,” said Gowan. “I was in Basra for just a few days in 2007 as part of a JSOC [Joint Special Operations Command] leadership recon and we got hammered by repeated mortar shelling. One blast in particular was so great if felt like my teeth were going to blow out of my head.”

Today, we understand better the risks soldiers who operate artillery, mortars, and anti-armor weapons are exposed to from concussive blasts and know TBIs are happening often. According to the Defense and Veteran Brain Injury Center (DVBIC), 414,00 TBIs were reported among U.S. service members between 2001 and late 2019.

“We know it’s a problem. The military has been studying this and working to minimize risks, but it is a big concern,” said Gowan.

Military training also comes with significant risk for injury. Servicemembers are asked to prepare for realistic situations.

“Military training is inherently dangerous,” said Gowan. “Whether you are training in vehicles, parachute jumps, combat simulation, or land navigation you tend to get banged around. You suffer trauma to various parts of your body.”

Retirement has given Gowan time to reflect on his own injury history, the servicemembers he worked alongside, and what the military community can do to prevent the worst outcomes of cumulative brain trauma.

Observations in a Combat Theatre

Beyond his own injuries, Gowan witnessed large scale combat and casualty trends in Iraq and Afghanistan after the introduction of improvised explosive devices (IEDs).

Gowan finished his first deployment in Iraq right as IED attacks were becoming more common. Initially dubbed “roadside bombs,” IEDs were a bigger problem when Gowan went back in 2007.

“That was how the enemy seemed to be most effective fighting against U.S. and coalition forces,” said Gowan. “When I was there in 2003, we didn’t have ‘up armored’ Humvees. As IED casualties became more common, the Army adapted.”

Beyond his own time in combat theaters, Gowan learned that a close friend from early in his military career at Fort Bragg was injured in an IED attack, losing both of his legs. Another servicemember close to Gowan, one of the ROTC cadets he mentored as an instructor at the Virginia Military Institute, suffered a severe TBI from an IED in Afghanistan.

“I know of a lot of exceptional men and women that were wounded and suffer from the effects of TBI. The issue hits very close to home,” said Gowan.

A 2017 study on post-9/11 veterans showed explosive blasts were the leading cause of reported traumatic brain injuries in Iraq and Afghanistan. Regardless of injury source, it is a staggering fact that 414,000 of the 2.7 million total troops deployed to Iraq and Afghanistan have been injured by TBI. Considering not all TBIs are reported, the proportion is likely even higher.

“I came into contact with a lot of people who were real heroes,” said Gowan. “I’m no combat hero and would never represent myself as such, but I was in close proximity to those men and women in support operations. I’ve seen and still feel the weight of their sacrifices.”

A New Mission After Retiring

Gowan is grateful for his military career. Now, on the other side of service, Gowan is passionate about finding ways to improve the lives of service members impacted by brain trauma. That passion led him to Project Enlist. The goal of Project Enlist is to accelerate critical research on TBI, CTE, and PTSD in military veterans.

Gowan is giving back by pledging to donate his brain to the U.S. Department of Veterans Affairs, Boston University, Concussion Legacy Foundation (VA-BU-CLF) Brain Bank. This gesture helps to raise awareness about the need for research and directly contributes to scientific breakthroughs in our understanding of military brain trauma.

“I’m an organ donor. I believe it’s a good thing to help other people after you’re gone,” said Gowan. “So, when I heard about being a brain donor for CLF, it was a natural thing for me. There’s still so much we need to learn about the effects of trauma and sub-concussive blasts.”

Gowan is recruiting other veterans to support Project Enlist because he feels the urgent need for this research. Many veterans, like Gowan, are also former athletes with previous brain trauma.

“I think about how so many military service members are also former athletes.” Gowan said. “I have an interest in the TBI, CTE, PCS, and PTSD interplay because this issue is a huge piece of the quality-of-life puzzle for me and for them. I know a lot of folks who are still struggling. It feels good to do something about it and know that we can do more than just endure.”

Veterans, even former military service members with asymptomatic exposure to brain trauma or no history of brain trauma at all, can support Project Enlist by pledging to donate their brain like Gowan has. CLF also offers personalized support to veterans fighting the effects of concussions or suspected CTE through the CLF HelpLine.

“Everything we do in the military is about improvement. How do we perform our mission better? How do we make a process more efficient, or safer?” said Gowan. “This mission is an extension of the same mentality. It’s a great opportunity to support veterans when they’re out of uniform and, hopefully, improve life for the generations that come after us.”

Lt. Col. Gowan is a brain pledge and peer mentor for the CLF HelpLine. Gowan spread the word about CLF and Project Enlist with the Institute for Veterans and Military Families (IVMF) in June 2021. Watch the interview here.

Posted: August 30, 2021

Retired U.S. Army Captain William Reynolds III has many titles: veteran, 2016 Invictus Games Captain, father and husband. He’s a survivor, who was gravely injured by a detonation device while in the line of duty. He’s also a Project Enlist brain pledge devoted to improving outcomes for his fellow veterans.

Reynolds’ military career began when he was a young cadet at the U.S. Military Academy in West Point. He was a Division I gymnast for four years before being commissioned in 2002 into the U.S. Army infantry. Eventually, he was deployed overseas and commanded small platoon units in Iraq and Korea.

His passion for service started when he was a young child.

“As a first-generation American, I was quick to recognize the opportunities I was afforded in this country,” said Reynolds. “I had so much gratitude and wanted to find a way to give back, so I became involved in a lot of civic and community engagements, either through scouting or church involvement. And that fueled the desire to go into service.”

Reynolds served in the U.S. Army for seven years. He can’t recall exactly how many blast explosions he’s been exposed to but estimates the number to be around two dozen. The most significant one occurred when his troop was ambushed in Baghdad and he stepped on a remote detonated IED. One of his legs was nearly blown off as he fought not to lose consciousness.

As it happened, Reynolds says he didn’t have time to consider the physical nature of his injuries or the possibility of brain trauma.

“The sensation from a blast is much different in a combat scenario, because your first feeling is the rush of adrenaline,” he said. “Making sure you’re all together, checking on your unit, doing the initial battle damage assessment. There’s really no time to think about, are my ears ringing? How does my head feel?”

Through the flurry of activity, the first two thoughts running through Reynolds’ mind were: I’ve failed my unit, and I don’t think I’m going to survive.

A team of combat medics who were tending to other casualties nearby happened on Reynolds and were able to give him proper care before medically evacuating him to a nearby treatment facility. There, he required intensive surgery and blood transfusions due to multiple severed arteries and musculoskeletal injuries. But that was only the beginning – over the next six months, Reynolds would go under the knife 12 additional times as doctors tried to salvage his limbs and get his leg back to a functioning state. In the end, they decided to amputate it to give him the best quality of life going forward. Altogether, his full course of treatment required an astounding 26 surgeries.

Although Reynolds was eager to get back to his responsibilities and his platoon, he quickly realized the physical and mental recovery would take much longer than he may have hoped.

“At first, I had lofty goals of returning to duty, but reality set in and I knew that would not be happening any time soon, and definitely not in the same capacity,” said Reynolds. “So I really set my sights at what was possible, such as being able to take more steps daily and seeing if I could stand for the whole day. Then it became trying to walk around the mall or not having to use a cane or assisted device – basically inching forward little by little.”

In the military, a convalescent leave is a free period of time after a major trauma an active member of duty can use to focus solely on treatment. For Reynolds, this was a godsend and something he is grateful for. He used the time to work with a physical therapist on basic movement and stay in touch with his troop.

From there, Reynolds continued his rehab through recreation, even picking up skiing. The liberation of picking up new, fun activities was thrilling – he started in a seated ski before eventually skiing upright with one leg and then finally with the use of a prosthetic. He credits his athletic background from college as key, as it instilled in him a training mindset and the desire to keep getting better.

While the visible injuries were healing, Reynolds also had to deal with the invisible ones – the persistent brain injury symptoms he noticed with activity. Reynolds has found any rapid or strenuous movements immediately lead to headaches. He realized how easy it can be to hide brain injury symptoms and suffer in silence.

“With any brain injuries, if you’re talking well and answering questions adequately, and it doesn’t seem like there’s any mental deficit – you pass the ‘screening test’, if you will,” he said. “People won’t necessarily know an event can cause headaches or there are scenarios where you can lose your balance at any time.”

Also essential to Reynolds’ recovery was the patience and support of his family. They stayed by his side during his treatments and made important medical decisions on his behalf. When he was out of the hospital, they made sure he had time to take care of himself and gave him the inspiration to realize his full potential both as a person and as a professional. His advice to caregivers? Find a way to give your loved one space and support throughout recovery.

 

“I really appreciated how my wife ensured that I had the right time to take care of myself,” said Reynolds. “Whether it was emotionally, through recreational things that I pursued personally, through athletic endeavors that I did with my friends, making sure I had that time to kind of have the emotional wellbeing side of the house. Then also pushing me to do the more mundane kind of treatment medical checkups that you need to do that we all tend to put by the wayside.”

Reynolds continues to embody the value emblematic of all Veterans: to serve others. One of the commitments he made is pledging to donate his brain to the Concussion Legacy Foundation and joining the organization’s Veteran Advisory Board as a way of giving back and ensuring future generations have research to help them. Reynolds became the first military veteran to pledge his brain to CLF 12 years ago, and he was honored at CLF’s annual gala in 2009. He says he’s impressed with the research progress made since his groundbreaking pledge.

Reynolds sees his involvement in Project Enlist as another level of service in retirement. He calls it a simple yet meaningful way to support research and improve care for those who need it most. He encourages fellow veterans to get involved.

“I would absolutely encourage all veterans to pledge their brain to Project Enlist,” said Reynolds. “This is just another way to honor that longitudinal research that can be done on any effects that we’ve suffered throughout our service so that we can not only improve VA care, but improve all care, for any veteran.”

 

Reynolds knows there are still many service members and veterans who are unaware of the research being done in this area. Some have experienced countless blast injuries and don’t realize the far reaching and lasting effects that can appear later in life. He sees the effects of PTSD and TBI in fellow veterans. But he is hopeful we are moving in the right direction to provide better diagnoses and care.

And to those veterans suffering from continued effects of a brain injury, Reynolds emphasizes the importance of hope.

“The body is great at adapting,” said Reynolds. “And at some point you’ll learn how to cope with those effects and overcome them.”

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Servicemembers and veterans interested in pledging to donate their brain to Project Enlist can click here to get started.

If a veteran you know has passed way and the family is interested in brain donation, please instruct them to call the 24-hour UNITE Brain Bank emergency brain donation pager at 617.992.0165.

Posted: November 25, 2020

As a kicker on the University of Washington football team, Phil Green was 6-foot-3 and 225 pounds. He was bench pressing 360 pounds, squatting 500, and could jump with the guys on the basketball team.

In his late 40s, Phil Green suddenly could no longer clip his own fingernails. The strength in his hands was nearly gone.

“That was the first thing that told me something is definitely not right here,” Green said.

With his dad in the Air Force, Phil Green moved around a lot as a kid. At each new stop, Green’s athleticism made him new friends and carried him through unfamiliar circumstances. It didn’t matter if the field was in Washington, California, Alaska, or elsewhere, Phil Green turned heads wherever – and in whatever – sport he played.

Green chose to attend the University of Washington. In his first term at UW, Green played intramural sports and dominated flag football and soccer games.

When he arrived on campus, Green says he was around 165 pounds. But he hit the gym. And he ate. A lot. Green’s parents reloaded his meal card three times in his first three months in Seattle. He beat the usual freshman 15 by 25 pounds.

Green met fellow UW student Jarrett Mentink through his fraternity. The two played intramural sports together and Mentink saw potential for Green to do more than just embarrass the recreational competition. He encouraged Green to try out for the UW football team as a kicker ahead of his sophomore year. Green worked some connections and landed a tryout. Before he knew it, he was standing on the sideline as a walk-on for the Huskies as they won the 1992 Rose Bowl and shared the National Championship.

Green continued eating and lifting to the point where his size and athleticism were wasted at kicker. He moved positions and became the backup safety on UW’s 1993 Rose Bowl team.

Green was firmly entrenched behind star players and rarely saw live game action. But there was still enough practice time to take plenty of wallops.

“Every day in practice you’d try and knock each other silly,” Green said. “Today, you’d sit out. Back then, you’d rub dirt on it and get back in there.”

 

Green graduated from UW in 1993, but his late bloom made him dream of the possibility of playing professional sports. He moved to Massachusetts and tried out for the upstart New England Revolution MLS team. Despite not having played a game of college soccer, Green made the final round of cuts before being sent home.

After a few years playing in a Portuguese American soccer league on the south coast of Massachusetts, Green decided to enter the ranks in the business sector. He joined a small startup company in Arizona before a former boss recruited Green to work with her at Sony. Just as Green ascended from intramural leagues to the Pac-10, he went from a tiny company to interacting with Sony’s top executives in a sales role.

“I took a fearless approach,” Green said. “If you don’t know something, just fake it till you make it.”

Green made it. He thrived with Sony and moved back to the Seattle area around 2005 so he and his first wife could take their kids to Husky games.

In early 2018, Green’s second wife Jennifer noticed Green’s triceps were twitching. Green was totally unaware anything was wrong. The twitching soon spread to other parts of his body, causing concern.

Cutting out coffee didn’t help Green’s twitching. Neither did cutting alcohol.

The twitching intensified and spread further. When Green lost the pinch strength to clip his fingernails, he began to resign himself to the direst cause left on the table.

On August 29, 2018, Green’s suspicions were confirmed. He was diagnosed with ALS, a relentless neurodegenerative disease that attacks nerve cells in the brain and spinal cord.

Facing ALS with anything but fearlessness would betray who Green had been his whole life. Once he was diagnosed, he couldn’t feel sorry for himself. It was time to get to work.

“The official diagnosis gives you the ability to move on,” Green said. “It enabled me to make a difference and see what I could do while I still could.”

Green’s first step was to connect with someone else with ALS. His old friend Jarrett Mentink had a younger brother who played for the Washington State University baseball team alongside Steve Gleason. Gleason, the famed former New Orleans Saints safety, was diagnosed with ALS in 2011 and has since founded Team Gleason, an organization that improves the lives of people with ALS. Green messaged Gleason and was soon catapulted into the world of ALS advocacy.

In addition to Gleason, Green was connected to Brian Wallach, founder of I AM ALS. He became close friends with Nancy and John Frates, parents of the late Pete Frates. Frates played college baseball and was diagnosed with ALS in 2011 and died in 2019 at age 34. He created the Ice Bucket Challenge to raise money for ALS research. In a twist of fate, Green participated in the Ice Bucket Challenge in 2014, four years before his own diagnosis with ALS.

“I don’t know how I would have been able to get through this without having those connections,” Green said.

Among his extensive list of ALS advocacy efforts, Green is the co-chair for the clinical trials committee for I AM ALS and works tirelessly to reform clinical ALS trials to be more patient-friendly and increase funding so those with ALS can access them. Green says that 30,000 people live with ALS and less than 1,000 qualify for clinical trials each year. He was in a trial last year that seems to have slowed the progression of his ALS.

“The experimental therapies that are in clinical trials are really our only shot at hope,” Green said.

ALS strikes fast and hard. He and Jennifer enjoyed their belated honeymoon in Jamaica in April 2019. At that time, Green could still walk on his own, snorkel, and get in a boat. Now, 18 months later, Green is in a wheelchair most of the day, save for maybe five feet of walking in a walker.

But Phil Green is restricted only in mobility. The same fearlessness that got him onto the UW football team, on the brink of an MLS roster, and into board rooms with global executives stays with him now.

“I have no problem asking for things,” Green said.

Green’s days are filled with phone calls. He recently had a call with Apple’s director of accessibility to encourage the company to create products that work for the ALS community so those with ALS can choose between Windows and Mac. He learned early on that the top ALS doctors in the world were receptive to what he had to say as an ALS patient.

In his hunt for information from the medical community, he connected with Dr. Ann McKee, Director of the VA-BU-CLF Brain Bank. After former NFL fullback Kevin Turner died in 2016 at age 46 with symptoms of ALS, Dr. McKee found Turner’s brain had Chronic Traumatic Encephalopathy (CTE). She became the first researcher to report on the association between ALS and CTE.

“This is the best circumstantial evidence we will ever get that (Turner’s) ALS type of motor neuron disease is caused by CTE,” Dr. McKee said after Turner’s diagnosis.

Green never had a diagnosed concussion but remembers having his “bell rung” many times playing at UW and throughout his soccer career. In 2010, Green stopped heading the ball in pickup soccer games because he’d get blurred vision, headaches, and nausea after games.

Dr. McKee connected Green with her collaborator Dr. Gil Rabinovici, the Edward Fein and Pearl Landrith Endowed Professor in Memory & Aging at UCSF. Dr. Rabinovici has studied Green since his diagnosis. Green will be donating his brain to Dr. Rabinovici and UCSF after death to close the loop on the research process.

“I’m committed to helping answer those questions,” Green said. “Anything that I can do to help the science and understanding of both ALS and TBI from soccer and football.”

Green’s ALS is known as “sporadic ALS,” meaning he has no family history of the disease. This sporadic ALS could be caused by CTE, but there are many other potential sources. Green’s history of intense physical activity is also a risk factor. So is a lack of sleep.

Green’s family won’t know if he has CTE until after his death, but he has clarity now that the sports he played need to reform to protect the next generation.

He is a proponent of Flag Football Under 14 and knows many of his former UW teammates share the same opinion. He held his oldest son out of youth tackle football.

“It was important for my kid to understand the game and not how hard to hit people,” Green said. “Tackling is just one small piece of the game.”

As a kid, Green would toss a soccer ball onto his roof practice heading the ball as it fell over and over again. Now he’s glad heading is banned for his youngest daughter’s soccer league.

“It’s like sending your ten-year-old into a boxing ring,” Green said. “That’s probably not the best thing for the developing brain.”

Green knows what he’s up against in his fight with ALS. He has lost many friends to the disease and knows the odds that he beats ALS are extremely slim. But Green, who has never cared about odds, has two sets of goals. One for the rest of his lifetime and another for the future of ALS medicine.

In the short-term, he continues fighting for expanded access trials and patient-centered reforms to ALS care. Both, he thinks, are imminent.

Down the road, Green and the rest of the ALS community hope researchers discover the mechanisms and gene mutations that cause sporadic ALS. With a better understanding of why someone has ALS, researchers can develop more targeted therapies to slow the progression of the disease.

Green will continue fighting with as much as he can give for as long as he can give. Telling his story is another way to fight.

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If you’d like to support Phil Green and his family’s fight against ALS, you can support him at PhilYourHeart.org. Green also partnered with Wilson Creek Winery in Temecula, California to release three special Philanthropic wines. Proceeds from the sale of either his cabernet sauvignon, sparkling brut, or the cab/brut bundle go directly to the Phil Your Heart trust.

Posted: May 11, 2020

Alan Blyweiss started boxing in 1976 as a seven-year-old in the Baltimore/D.C. area. He was 88-12 as an amateur. His amateur career included a fight against former heavyweight champ Tommy Morrison to a four-round loss that turned into a blood bath. Growing up where he did, he was able to spar up-and-comers like Hasim Rahman, Riddick Bowe, and Mike Tyson. At 20-years-old, he was told he shouldn’t box anymore due to a spinal disc fusion. His professional career was over after just two fights. Nicknamed “The Rock,” Blyweiss became a sparring partner for some of the biggest names in boxing like Vincent Bolware, Lennox Lewis, Terry Ray, and Larry Holmes. Without much of an education, Blyweiss felt his only means were to be the punching bags for some of the most powerful punchers in the world.

A life in boxing left a toll on Blyweiss’ body and brain. He has had his spine caged, complete elbow reconstruction on his left arm, Tommy John on his right elbow, numerous hand surgeries, broken noses, and procedures to remove cartilage. He also sustained numerous concussions and blackouts in sparring sessions.

Blyweiss felt for a long time that something was wrong with his brain. He exhibited behaviors and personality changes that alarmed his wife and children. He lost control of his inhibitions, suffered from confusion, had bouts of rage, and severely lowered executive functioning abilities. Doctor after doctor couldn’t give him an answer for his issues until a 2017 visit to Johns Hopkins University. There, doctors told Alan they suspect he lives with what was used to be called “punch drunk” syndrome, and what we now know as Chronic Traumatic Encephalopathy (CTE).

Living with suspected CTE has placed a tremendous burden on Blyweiss’ family. His wife had previous experience as a caregiver for dementia patients and now supports Blyweiss in his daily bout against the symptoms of the degenerative brain disease. Despite everything, Blyweiss’ fighting instinct still persists. To combat his suspected CTE, Blyweiss turned to poetry.

He writes whenever inspiration strikes with the purpose of compiling a set of poems to share with other patients and families affected by CTE.

“There is no schedule with my disease,” Blyweiss said. “Every day is a new adventure. But I’ll keep on trying and never give up.”

See below for a collection of Alan Blyweiss’ many poems. You can connect with him at [email protected].

CTE Warriors

Man hands hurt so bad from all the years of fighting, have to get through it so I can keep writing.

This disease that has no clock, not knowing when to tick or to tock.

We can not express our pain or feelings through a normal voice, our bad language comes out it was not our choice.

Our paranoia and depression can get very insane, to be sitting around hearing people calling our name.

I will be using my time to continue to rhyme, because this disease will rob us of time.

But if you don’t like something you hear, just remember your not in the shoes that we wear and we really don’t care.

These words our for my brothers and sisters fighting this disease, because if you’re the patient or the caregivers this will drop us to our knees.

But for the time I can still create a voice for us, then it will be me to steer this bus.

So if you read these poems and it helps in some small way than I did something to help CTE warriors today.

The Rock

I once was The Rock, our family power. That was before my brain began to turn sour.

I was a husband and dad, that made it all great. Now every day I have to start with a clean slate.

The things I say and the things I do, often to get a reaction from you….

I go for the jugular, knock you out at the knees, the words that I say only come from CTE.

Now I can’t make decisions or take care of the money, the things happening so quick it’s not even funny.

I put my words down, while I can understand, these words come from my brain, right into my hand.

My hands now express the thoughts and feelings we all go through, where this will lead us, we haven’t a clue.

This disease has no cure, but one thing I can say for sure, with the things that we go through in a day, and still can’t find our way.

To be caught between the stage truth or fiction, causes my brain causes so much friction. So for my warriors without a voice- keep battling the demon like you have no choice.

We may not win this fight, but I’m fighting for the future CTE-ers that just might.

Don’t Give Up On Us

Please don’t give up on us for we know not what we say, please don’t give up, we will forget by the end of the day.

Please don’t give up on us, we know not what we do, please don’t give up , we are just as scared too.

Please don’t give up on us, are care is so tough, please don’t give up, no matter how rough.

Please don’t give up on us, CTE is a disease, please don’t give up, till the beast is on its knees.

My CTE Day

I have a few ideas what I’d like to get done for the day, give it 20 minutes and I forget it anyway.

Pressure in the eyeballs feeling like they want to pop, nothing can help nothing can make it stop.

Then the ocean sounds I have in one ear, the buzz in the other sounds so clear.

I get mean in my mind when I’m in noisy places, wanted to make the noise stop by smashing people’s faces.

Then the paranoias that I go through in a night, hearing the voices then throwing punches like I’m in a fight.

My wife has to wake me because I’m punching my face, I see her fear and I’m not in the right place. I can’t say words nothing coming out the fear so deep but I cannot shout.

Caring for us

Caring for us is challenging, stressful and comes with no reward. It’s our actions and words that strike at your chord.

We behave and believe things that we never have before, our feelings are slipping, our tears are no more, being depressed feeling like we’re under the floor

Our caregivers need a break, but nobody wants to help, can’t find caregivers who understand CTE on Yelp. Not a friend nor a family member, nobody in sight. To get anybody to help is always a fight

We are so mean and hurtful like a devil towards you, but if other people were around, they would think it’s crazy, has to be you! But what they don’t know behind a closed door, we treat you worse because we love you more

It’s our caretakers that take such a strained assault , but to live like we do is nobody’s fault , so don’t be mad at we say or don’t do, because it’s the disease that’s stopped loving you.

If

If I am trying to do something you don’t understand, don’t try to stop me lend me a hand.

If I’m speaking and have some troubles, please don’t correct me it just bursts my bubbles.

Please don’t tell me how great I look. If you only knew the pain I’m in, I could write a book.

If I just blast out with a very inappropriate comment, just shake it off and live in the moment.

If I’m looking confused, there’s nothing you can do. But when I am amused, there is no worry of a fuse.

So being stuck between understanding my fate at one minute of the day, then in the next seconds I can’t remember what to say.

Now as I really am seeing the reactions from my wife and see her fear, it’s only making one thing clear, that if I don’t fight harder my ending is near.