Why I Stopped Playing Football at Age 17

My name is Matthew Solomon. I have loved football for as long as I can remember. No other sport has captured my heart and soul the same way.

Football is a very intricate sport, one that I think many people don’t fully appreciate. Small nuances can make the difference between a hard-fought win or loss. Every game is an exciting adventure to watch, and with only a few games each season, every week counts. Whether you are a player or a fan, when your team is winning, there is no greater feeling of pride.

And the people behind the sport? Football players are a different breed. They may be strong or fast, or both, but always tough, even fearless. Yet in football, no individual alone can carry a team. The whole is always greater than the parts and being part of a team is like a second family. You work together, celebrate together, and share disappointment together. That camaraderie is very powerful, and sometimes even the underdog can achieve incredible victories.

Over the years I played flag football then progressed into tackle. Outwitting, outmuscling, or outrunning an opponent is thrilling. Scoring a touchdown is the greatest feeling in the world.

My brain injuries didn’t start until my freshman year of high school when I blocked a punt with my head. I don’t even really remember it. It was near the end of the game and my adrenaline was running so high, I didn’t start to feel the concussion symptoms until that evening.

After dinner, I saw my school doctor and was placed in a dark room to recover. The doctor alerted my parents, coaches, and teachers, and the return-to-play protocol was slow and thorough. I was told to stay off my phone and my computer. My head hurt and I had a heightened sensitivity to light. I was lethargic and slept a lot, and I wasn’t very hungry. After about 36 hours at the health center, I was sent home for the weekend to rest and was instructed not to read or watch TV. I missed the last football game of the season against our biggest rival. I was sad to miss such a fun tradition at my school.

The next week I went back to class to listen. My teachers were told not to expect that I participate, do homework, or take any tests. The following week catching up on schoolwork was a bit stressful, but I got to go back to the trainer under our return-to-play policy. I was tested for headaches while increasing my workout activity each day before I was allowed to go back to football practice.

The following season, upon falling to the ground after a tackle, I had an awful feeling that I had injured my brain again. I recovered quickly from that hit, but later the same season, I was stiff-armed by a much larger player in a practice and once again suffered a diagnosed concussion.

I knew in my heart that this could impact my long-term health. The concussions seemed to come easily. The risks were becoming great. I was missing school, friends, and time just being a teenager. I see NFL players, some of the best in the world, suffer concussions right before my eyes. I read about CTE and the things that it causes some people do, how they suffer, and maybe hurt others. I see the struggle my grandparents go through with my grandfather’s dementia. Brain health is so fragile, yet so critical to leading a healthy and happy life.

I was angry and sad. After letting it sink in for a bit, and talking to my coach, we decided I would finish the season as a student assistant coach. Aside from helping the coaches at practice and games, I watched film and logged team stats. I was on the sidelines with the squad through all the ups and downs. I love this game whether in pads or not.

I stay active and have fun in many other ways. Health and fitness are very important to me. I enjoy weightlifting and I run track in the spring. At school, my friend and I started a “rec games” club where we’ve played kickball, capture the flag and other non-contact sports.

I took an online scouting class during the Covid-19 lockdown, track football stats in my free time, participate in a number of football chat rooms, and have fantasy drafts with my friends. I hope to study sports management and work in the professional sports industry someday. I love this game. I always have and I always will.

Every student-athlete has different goals and experiences. I find competing very exciting, and I love the camaraderie of a team. The important thing is to be true to yourself. For me, that means prioritizing my brain health for my future.

If you think you have sustained a concussion, tell a coach, see a doctor, and take the necessary time to heal. If you think you see someone else suffer a concussion, speak up.

Controlling Your Mental Health is Key

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.

How Concussions in Motocross Changed My Life

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.

Life After Brain Trauma in the U.S. Army

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.

Shane Bannon: My Concussion Tribute™

Why am I making Concussion TributeTM donations?

I struggle when it comes to my relationship with football. I love it so much because of what it instills, and what it gave me – it provided me the pathway to meet my wife and provided professional opportunities I wouldn’t have had otherwise. At the same time, there are systemic problems around the sport in terms of head injuries and long-term impact to players’ brains.

That’s not to say I want football to disappear. The game is ingrained into American culture. I want to love the sport – I love the violence. I was the violence. I learned to stick my head down and not use my hands. I had to switch helmets out halfway into a season because the paint was peeling off. One training camp I had to replace my face mask several times.

But I want a way to make the sport safer, to spread awareness and education, and to find treatments for those struggling with injuries and their effects. I want young athletes to know what they are getting into. I certainly didn’t at the high school or even college level. I didn’t pay attention to head trauma until I was done playing and looking back on it, I definitely had teammates who had issues.

By taking part in Concussion Tribute™ donations, I want to offset some of the burden of guilt and enjoy football in a way that ensures I’m doing good for it in the long run. Ultimately, I hope scientific research helps advance football and I can still see a safe, responsible version of the sport I love 50 years from now.

Amount: $250

Frequency: Weekly

Duration: Through the Super Bowl

What are Concussion TributeTM donations?

Concussion Tribute™ donations are made to the Concussion Legacy Foundation to support the welfare of football players. Concussion Tribute™ donations are intended to show gratitude, respect, or admiration for the players who risk their brain health every game for our entertainment. Many donors are serious football fans who take immense pride in giving weekly or monthly Concussion Tribute™ donations during the football season. The funds raised from Concussion Tribute™ donations will go to research and programs designed to prevent and treat concussions and CTE.

Throughout the football season, CLF donors will be sharing why they have signed up for a Concussion Tribute™ donations. Learn more and make your Concussion Tribute™ donation this season at ConcussionTributedonations.com.

Tom Gardner: My Concussion Tribute™

Why am I making Concussion TributeTM donations?

I am making Concussion Tribute™ donations to ensure we continue the race to understand the risks of, and cure, CTE.

I grew up playing and loving the sports that we now know create a prevailing risk of permanent, progressive brain damage. This includes contact sports like football, hockey, and rugby. It extends to sports like soccer and baseball with headers, collisions and foul balls.

Because of how these sports were designed, subconcussive and concussive hits to the brain are unavoidable. My Concussion Tribute™ donations are to speed the research, protect our athletes, and help families be fully informed about the risks to their child athletes.

Amount: $1,000

Frequency: Weekly

Duration: Through the Super Bowl

What are Concussion TributeTM donations?

Concussion Tribute™ donations are made to the Concussion Legacy Foundation to support the welfare of football players. Concussion Tribute™ donations are intended to show gratitude, respect, or admiration for the players who risk their brain health every game for our entertainment. Many donors are serious football fans who take immense pride in giving weekly or monthly Concussion Tribute™ donations during the football season. The funds raised from Concussion Tribute™ donations will go to research and programs designed to prevent and treat concussions and CTE.

Throughout the football season, CLF donors will be sharing why they have signed up for Concussion Tribute™ donations. Learn more and make your  Concussion Tribute™ donations this season at ConcussionTributedonations.com.

Army Captain Pledges Brain to CTE Research

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.”

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.

With Brain Pledge, Navy Veteran Rewrites Her Story

Posted: June 28, 2021 

Navy veteran Christine Conley has quite a story, but to her, being a part of the Concussion Legacy Foundation’s Project Enlist is the “and’ to it.

For 10 years she had a successful music career in concert and event production as a lighting technician and designer. For a long time, her travels throughout North America satisfied her inquisitive nature and desire to learn more, and she was happy. But then the 9/11 attack on the World Trade Center and the Pentagon happened. It was at that moment she decided she wanted to do something more, to find a way to give back.

So, at age 27, Conley joined the Navy and was assigned to be part of the military’s law enforcement arm. She spent most of her military career as a criminal investigator and as an instructor in weapons, security, and anti-terrorism.

While deployed to Iraq and Afghanistan she experienced significant injuries, including two events that were later identified as causes of major brain trauma. In one instance, she was inside a building that was hit by explosives and large pieces of rubble hit her on the back of her neck. Another time she was too close to an RPG blast and was thrown up against a door jamb, causing her head to snap back and hit hard. Both times, she did not give the collisions much thought and continued in the action.

Conley was involved in other firefights, too, and her injuries required numerous surgeries.

“I was a hot mess,” she said.

Conley was put on limited duty several times. After those assignments, she was told, “You’re not getting any younger,” and she decided to take a medical retirement; serving 12 years had taken enough of a toll on her body and brain.

It was while she was having some imaging done on her spine in preparation for her retirement that a physician asked if she had had experienced any traumatic brain injuries (TBIs). It was the first time she had ever considered that her earlier head injuries might be the cause of the cognitive and emotional difficulties she was experiencing. And she discovered she was not alone; the Defense and Veterans Brain Injury Center reports more than 410,000 service members have been diagnosed with TBI since 2000.

For a long time, Conley had been finding it was especially hard finishing sentences and coming up with the right words.

“It was like my brain was on pause. It was a great day if I could make it through getting the words out of my head to my mouth,” said Conley.

She was challenged in completing tasks and started feeling totally undone by bright lights and loud noises. Conley remembers a time when she was grocery shopping and she suddenly felt so completely overwhelmed by the people, the sounds, and the glare of the neon lights that she had to escape the store.

“I didn’t understand what was going on with me, so I had a tendency to push people away or hold them at arm’s length,” said Conley. “I wasn’t getting much sleep and was constantly on edge.  My hypervigilance and anxiety were exhausting. I was also grappling with some survivor’s guilt, which- coupled with the guilt I felt seeing my daughter struggle with the impacts of being shuffled around to different friends and family members during my deployments, led to deep depression.”

What Conley was coming up against was what some have called a “perfect storm.” She had been diagnosed with post-traumatic stress disorder (PTSD) and her symptoms certainly were indicative of that, but she later found out she was also experiencing similar symptoms from her traumatic brain injuries. While PTSD and TBI are separate conditions, this “perfect storm” of both PTSD and TBI can be overpowering and destructive.

“There’s an incredible overlap in terms of symptoms between TBI and PTSD,” said Dr. Rebecca Van Horn, a psychiatrist and U.S. Army Reservist. “The overlap makes it really challenging to determine whether it’s TBI or PTSD causing a particular symptom or maybe it’s both. An individual not only has developed PTSD which is a reaction that occurs after an individual has experienced a trauma, but they also have a physical injury to their brain that has affected the intrinsic functioning of the brain. You have this sort of layering effect of potential structural abnormality in the brain as a result of the direct trauma and you have a behavioral reaction to that trauma in terms of someone’s emotional state and how they interact and function in the world.”

For Conley, life’s simplest responsibilities were more taxing. Her then 10-year-old daughter, Keegan, had to take on many of the adult chores her mother could no longer handle.  The toll her problems were having on her daughter were enormous. Reflecting back, Conley says, “Keegan told me, ‘My mom didn’t come back’ [from her deployment]. Keegan had to grow up fast, too fast, out of necessity because I depended on her to step in and help.”

According to the National Center for PSTD and the American Psychological Association, both PTSD and TBI can make a person more difficult to live with, and the recovery can be long and hard on a child or partner. Dr. Van Horn advises any veteran who believes they may have a history of brain trauma to seek medical care. The CLF HelpLine is also available to caregivers and patients suffering with brain injury symptoms, offering personalized recommendations for support and care.

“An important place to start would be seeing a doctor, having an evaluation of an individual’s history, doing imaging, doing studies to try to understand the nature of the TBI, and then also seeking care for the PTSD,” said Dr. Van Horn. “Several of the treatments for PTSD are also effective at addressing symptoms of depression and anxiety that may be related to TBI.”

Conley tried to seek help but had a very difficult time for many years because, despite medications and treatments, she was not finding the relief she had hoped for. She found some success with other, complementary medicine treatments and today says she feels better than she has in a long time.

“I’ll never be back to who I was, but I’ve finally been able to learn ways to help compensate for the effects from TBI and new ways to function,” said Conley.

The knowledge she gained about the major trauma to her brain which caused her cognitive and emotional difficulties, and the challenges of her search for help, have led her to work with other veterans. Conley says her path has deepened her passion for helping the military community. The same desire to make a difference that led her to enlist in the Navy is now fueling her work for the Boulder Crest Foundation, an organization working to ensure that combat veterans, first responders, and their families can live great lives in the midst of trauma.

She sees the toll PTSD and TBI take on the lives of active military and veterans through her work, and through her friendships. In 2013 she met Ron Condrey and soon after, his wife, Nicole, and they became fast friends. Like Christine, they were committed to giving back to the military community, though in a different manner; both were master skydivers and volunteered at events all over the country. Ron and Nicole’s story, and later Ron’s death by suicide, had a tremendous impact on Conley.

Ron joined the Navy at 17 and was an EOD (explosive ordinances disposal) Tech, as well as a highly trained paratrooper and well-respected leader. He suffered repeated brain injuries from his time around explosives and in combat.  By 2015 Ron showed numerous symptoms of TBI, though because his condition was not well understood, he was only diagnosed with PTSD. Nicole told The American Legion Magazine Ron’s condition was plummeting.

“It was like a roller coaster,” said Nicole Condrey. “One day he could be really great and the next day in the dumps. One hour doing great, the next hour not.”

At the time, common knowledge about TBI was just growing. Very often treatments such as the ones Ron received were geared to PTSD, not a dual diagnosis of PTSD and TBI. Ron went down numerous avenues, but none were highly effective. Ron’s condition continued to worsen after retirement, leading him to isolate himself, and even stop skydiving which he loved so much. In September 2018, Ron took his own life at the age of 45.

Conley had numerous discussions with Ron and Nicole before Ron’s death about what he was dealing with. Because she was having her own struggles with TBI, she could relate.  Once when she asked him how he was doing, he replied, “I’m not doing good.” His honesty got her attention, and though she knew something was not right, she did not fully realize the depth of his pain.  His death woke her up to how brain trauma was affecting so many of the people she had deployed with, and she became interested in the research being done to help solve the invisible wounds of war.

“Ron’s death hit so close to home,” said Conley. “It was a sobering reminder that it could happen to anyone of us because of our head injuries.”

She was aware of Nicole’s decision to donate Ron’s brain to the VA-BU-CLF Brain Bank, and she began thinking about it for herself. She read up on Project Enlist, CLF’s program which aims to serve as a catalyst for critical research on TBI, CTE, and PTSD in military veterans by encouraging brain donation. She learned that studying donated brains will help researchers better understand how military brain trauma uniquely leads to brain disease and how to diagnose and treat it.

Nearly 8,000 people have pledged to donate their brain to the VA-BU-CLF Brain Bank, including more than 1,600 military servicemembers and veterans. Project Enlist is actively recruiting military veterans who are willing to pledge to donate their brain, whether or not they have a history of brain trauma, to support the ongoing research. By signing up, participants can also learn about clinical studies they may be eligible for during life.

“There is exploration and discovery in neuropathology that is not possible with neuroimaging,” Dr. Ann McKee, Director of the VA-BU-CLF Brain Bank, told The American Legion Magazine. Dr. McKee is also the director of the National PTSD Brain Bank and published the first ever case series on CTE in the military.

Once Conley understood the impact of TBI and CTE on her beloved military community, and how she and other veterans could accelerate research, she stepped up and pledged to donate her brain to Project Enlist.

“If this is the only way to get answers, I’ll do it,” said Conley. “The truth is you can’t take [your brain] with you. I figure no matter what else you’ve done in your life – whatever selfish deed – this is an opportunity to do what’s good at the end.  This is my living legacy because I know it’s going to make a difference and help others as they live.  I have a story as we all do, but this is my AND.  This is what comes after my story and it’s a good and.”

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.

Lost Inside Myself: My Battle with PCS

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

Posted: May 24, 2021

Lost Inside Myself

My current symptoms are a result of not just one concussion, but a cluster of three head hits sustained over a three-day period. These most recent concussions occurred in early September 2018 – the first when I was hit in the back of my head with a car door. A day later I had gotten water in my eye in the shower and whipped my head back. Then later that night I ran into a metal bedpost in our bedroom. Clearly, I’m a walking disaster so there is no telling which hit specifically caused the concussion(s).

My first diagnosed concussion happened in 2016 after a volleyball accident at work when I was an athletic trainer. After that diagnosis, I slowly returned to normal activities as my symptoms subsided. I attempted to manage this last cluster of concussions the same way. I continued to have vision and noise sensitivity issues but assumed they would improve with time if I was careful. By November 2018, I was still struggling with daily living, so I went to see my primary care physician. She diagnosed me with Post-Concussion Syndrome (PCS) and referred me to their concussion management team. I received therapy for visual processing issues, vertigo, headaches, anxiety, depression, and post-traumatic stress disorder (PTSD).

My vision issues, vertigo, and headaches were incredibly intense and forced me to isolate in our home for multiple months. My husband and I sat in almost complete darkness and silence, with only side lamps for light and speaking in hushed tones. Unable to watch television, I sat alone in the dark for most of this time, only listening to podcasts and reruns of shows I’d seen enough times to replay the images in my head.
I couldn’t tolerate any part of the outside world for a very long time. I went six months without going to the grocery store. When I was forced to go out, I looked like Carmen Sandiego with a wide-brimmed hat, sunglasses, and earplugs or noise-canceling headphones. I looked like I didn’t belong. I felt like I didn’t belong. When I stepped outside of the house, my skin crawled from sensory overload.

I looked like I didn’t belong. I felt like I didn’t belong. When I stepped outside of the house, my skin crawled from sensory overload.

As time dragged on, my physical symptoms slowly improved. I was able to manage my mental health well in the beginning with the help of my neuropsychologist and counselor. I felt like I had a good-sized toolbox of resources to manage my anxiety and depression, which I had experienced and taken medication for when I was a teenager. I soon realized that the changes that were occurring in my brain were unlike anything I had experienced before and they were going to turn my life and sense of self upside down.

To me, it wasn’t a rollercoaster of highs and lows, or two steps forward one step back, until after I hit the one-year mark. Up until that point if I wasn’t battling one symptom, I was battling another, and the causes seemed unpredictable. My vision and headaches finally started to improve around February and March of 2019 after stabilizing on all the medications. As those physical symptoms got better, my mental health took a drastic turn for the worst. The mental health challenges I endured over the next few months were excruciating and the physical symptoms I still paled in comparison to the soul-torturing nightmare that was going on inside of my head.

I felt lost inside myself – like someone I didn’t know was behind the wheel. She was a person who did not feel at home in my life, who did not feel like she connected to and loved the people whom I loved, who was easily triggered, and who felt impulsive and dangerous. It felt as though she was going to hijack my life and burn everything I loved and worked so hard for to the ground. For a few weeks I talked to my therapist and neuropsychologist about whether I could be dealing with something in addition to anxiety, depression, and PTSD. I was concerned I was manic depressive or developing a personality disorder.

After my breakdown in the summer of 2017, nine months after my volleyball concussion, I stopped drinking alcohol and drastically limited my caffeine intake. Had I not quit those things that could eventually develop into an addiction or that I could self-medicate with, I think my story could have ended very differently.

I also struggle with perfectionism, so the confusion around what I was experiencing was especially brutal. I was a people-pleasing perfectionist who tried to always think of others, do nice things, be a good person, and analyze my words and actions for how they might affect others. It ate me alive to feel like I was someone who represents all the worst things I ever feared I could be. My anxiety was in overdrive and my depression about the horrible human being I was becoming was causing me to completely withdraw from every relationship in my life. I was dissociating and self-isolating in order to protect myself and the people that I loved. I believed I had to turn off my heart and my spirit to keep them from infecting this beautiful, tender, vulnerable, precious life of mine.

My anxiety was in overdrive and my depression about the horrible human being I was becoming was causing me to completely withdraw from every relationship in my life.

One day, I hit a breaking point. I had gone to an appointment with my primary care physician and I lied to her about how I was doing mentally. I had suicidal thoughts a few times in the weeks before the appointment and was starting to feel like the people in my life would be better off without me. I shared none of that information with her. I drove to work after my appointment and broke down sobbing in my car in the parking lot. I called my husband and told him I no longer trusted myself to keep myself alive any longer. It was a giant red flag to know I was dangerously close to the point of no return, yet I still felt like withholding information from my physician. I needed a safety net because I wasn’t able to keep myself afloat anymore. Despite wanting to be off medication so my husband and I could start a family, I made the difficult decision to go back on medications. That day in the car, I realized I needed to stay alive before thinking about the future.

I met with my neuropsychologist the next day and she said I had a survivor’s instinct. That was something I didn’t expect – wasn’t I thinking about suicide? She explained how even at what felt like rock bottom, there was a part of me, the fighter in me, that understood how withholding information from a medical professional was deceptive. The fighter in me overrode whatever else I was feeling. We also talked about whether I thought I needed to go inpatient for suicide watch. It was scary to have to self-assess your ability to keep yourself alive. Until now, I don’t think I really appreciated the amount of integrity and grit it takes to evaluate your own mental stability and know you are the only person who knows if you are being truthful. I decided that I did feel “stable,” for lack of a better word, enough to start meds and not go into inpatient care. I bumped up my therapy to twice a week and was barely making it from day to day. I was practicing mindfulness like it was my religion to keep me afloat until the meds kicked in. I was in a kind of vast and unending darkness that I feared would swallow me whole. But I began to see a light in the corner. I had to keep it in my vision for fear that if I blinked it would go out, like a candle in the wind. Each day, the light grew slightly bigger, stronger, and warmer. I was starting to find some space and some room to breathe.

I was in a kind of vast and unending darkness that I feared would swallow me whole. But I began to see a light in the corner.

As the meds kicked in and the depression slowly started to lift, I was now regularly filled with grief. I cried. A lot. I was so overcome with grief for the life and future I felt like I had lost. My heart was filled with such brokenness, this is not how it was meant to be. I slowly realized that this grief was my heart unfreezing and although I was still very disconnected from the people and the things in my life that I loved, my heart missed them. That was important. That was a cause for hope.

 

Finding My Way Home

By the end of April 2019 and after two months of medication, I decided to transition back to work full-time as a P.E. and Health teacher. I was constantly exhausted, falling asleep by 6:30 p.m. and sleeping 11-12 hours on workdays. At this time I had also finally conquered the feat of everyday necessities like going to the grocery store. I could slowly start to do small things to lift my spirits like going for a walk or seeing family, but I could only do it on days I didn’t work.  I felt like I was running my life on a cost-benefit Excel sheet. Before doing any activity or leaving the house, I’d have to ask myself “what is this going to cost me?” and “what am I going to gain?” Life was not enjoyable, but I wasn’t constantly suffering anymore.

During the summer I got to really work on self-care. I walked on the greenbelt, swam in the pool 4-5 days a week, and spent time journaling. I was also able to focus on my relationships by taking love from just a feeling and making it into an action. I had come to realize I wasn’t feeling the same emotions I used to feel when I thought of someone or was with someone I cared about. I needed to work on flexing my love muscle and I diligently tried to cultivate this feeling in myself for the people in my life. This helped for a while but slowly morphed into me analyzing encounters I was having with those close to me. I started to question my decisions and picked apart my interactions with others. My dissociation only compounded as I continued to assess the damage PCS took on my life. Getting out of my head was so important and through mindfulness, I slowly got there. It took a ton of work. It still takes a ton of work. But each day, week, and month, the work slowly gets easier.

My PCS eventually crossed from the months and into the years category. The idea of having PCS for years seemed unbearable and I really started to wrestle with how long I thought I could go through life like this. Could I care for others or children? Did I think I could be a worthy wife for my partner? Was it fair to my husband to ask him to stay married to me if I am like this forever? I tried to spend some time, but not too much time, mulling over these questions and their possible answers. A wise friend of mine named Ellen, who also had PCS (if you don’t already have a friend who has it, go find one) once said, “Sometimes it’s hard to know if there is an answer. You can drive yourself crazy looking for answers. Eventually, you just have to be OK with not having answers to some of your questions.” She could not have been more right. The conversations I had with her and another friend, Tessie, who serendipitously also had PCS at the same time as me, changed my perspective and my life. I don’t think I would be here today if it wasn’t for them. Find a PCS partner in crime, it will be one of the most important things you do on your journey.

Find a PCS partner in crime, it will be one of the most important things you do on your journey.

I had to come to terms with some hard truths and the quicker I did that, the quicker my heart softened, and I started to see a road home – a road back to myself. Unfortunately, or fortunately, depending on how you look at it, that road started with trust. Trust is about the hardest thing to lean into when you have PCS. For me, I didn’t feel I could trust anyone, and I didn’t feel like I or anyone could trust my brain. After suffering from PCS for so long, I felt my brain and body were always in danger. But I had to learn to trust. I had to trust that it would be OK. I had to trust this was happening for a reason. I slowly realized that home isn’t a place you find – it is a place you make. By making a home within myself, I created a place I’d always feel safe. I transitioned from feeling like a broken monster who could never belong anywhere to a healing person.

 

I have done immense amounts of work to help destigmatize mental health challenges at my job and in my community because I never want anyone else to feel as alienated as I did. I remember in the darkest hours of the darkest days believing there isn’t a place for people like me in this world. I thought I’d never again fit in and never again be made whole. Every time I write or read these two sentences, a weight fills my heart and tears fill my eyes. I feel those words perfectly encapsulate my PCS experience. It makes me so grateful I made it out alive and it fills me with so much empathy for those that did not.

I work very hard to focus on being present and what is in front of me instead of what happened or what the future will look like. It took a lot of deconditioning and reconditioning for me to learn that self-care isn’t selfish – it’s self-preserving and self-sustaining. I need self-care to function to the best of my abilities with these new parameters in this time that I prefer to see as “the weirds” instead of my “new normal.” “The weirds” is a phrase I’ve adopted from my favorite podcast, Staying In with Emily & Kumail. They use it to describe the time of COVID, but I think it also eloquently describes PCS recovery. “The weirds” seemed more palatable than a “new normal” and a much better description as this experience is weird and nothing about it is normal!

In November 2019, at the end of a long break from work and a year after being diagnosed with PCS, I had two days where I was symptom-free enough to forget I had PCS. Feeling that well for just two days changed everything. It gave me hope and changed what I believed was possible for me. Then I returned to work and all my symptoms came back. It was the same routine and my mind and body just felt like they had had enough. My symptoms continued to increase over the winter. Having the stark contrast of feeling healed against a flood of symptoms upon returning to work really proved how significantly and negatively my job was impacting my recovery. If being symptom-free was possible even for moments in time, that needed to be the goal. I wanted quality of life. I was sick of surviving. I had been surviving for too long. I decided to leave my job.

 

A Place to Belong

In the most unfortunate of circumstances, God and Mother Earth brought the world to meet me where I was at. The cost the coronavirus took and continues to take on the world is astronomical. I see the hardship, sacrifice, anxiety, and turmoil not only on the news but in my own home. It feels unfair and selfish to revel in the peace I have found during this time. The world has come to a grinding halt. It is slower, quieter, and everything my brain yearns for my environment to be. I am outside for hours most days gardening, hiking, walking, or riding my bike around the neighborhood. I can do activities all day long with a small break or two, instead of only tolerating a few hours of activity. It is amazing what my brain could do when I am not with middle school students for 40 hours a week. My headaches are almost gone and I am completely off of my nausea meds. Most importantly, I feel more and more like myself. My sense of humor and wit, my kindness in acts and words, my thoughtfulness in the way I deeply think about others and their situations, my compassion and empathy for people, and my personality are returning. I can look around and feel like this is my life, these are my people, I belong here.

 

It has been over five years since my very first diagnosed concussion and I have been experiencing symptoms off and on from multiple concussions ever since. I deserve better and so do the people I care about. Things are definitely improving, but there are still hard moments. I have started to taper off my antidepressants and that feels scary. I think I am ready but the little doubters in my head make me question if I can do it or if I’ll fall apart. But I’ve found things that help me focus on the positives and I am sticking to them. I am doing my best to give myself the grace I deserve and proud of what I survived. I am proud to have survived. I am so grateful for the people who kept showing up for me every day even when I couldn’t show up for them or myself. I say to myself, “How lucky am I that I get to fall in love with my life all over again?” I feel even luckier that through this journey I’ve also fallen even more in love with my husband. I feel so blessed for my life and the growth I’ve had- the closure and resolution I’ve found where there was brokenness, the relationships that grew boundaries and connections in ways I never thought possible, and the light that found its way to me through what felt like impenetrable darkness. For all PCS took away from me, I have gained so much through it all.

For all PCS took away from me, I have gained so much through it all.

I hope part of my reason for having PCS is helping you. You are not alone. You will make it out the other side. As much as I disdain the term, you will find your “new normal.” You will create a worthwhile place where you can feel at home in “the weirds,” in your “weirds.” It may take endless therapy sessions talking about how afraid you are that things won’t feel or be the same but you will slowly start to evolve. You will see a shift towards a wholehearted you. Self-compassion, boundaries, strength, intuition, giving grace and leaning into the unknown will slowly and surely start to come easier. And it’s in part because over time, you changed your mindset. You have to believe you can rediscover the good in you.

I’ll leave you with one last story, a Cherokee parable titled “A Tale of Two Wolves”:

An old Cherokee told his grandson,
“My son, there is a battle between two wolves inside us all.
One is Evil. It is anger, jealousy, greed, resentment, inferiority, lies and ego.
The other is Good. It is joy, peace, love, hope, humility, kindness, empathy and truth.”
The boy thought about it, and asked, “Grandfather, which wolf wins?”
The old man quietly replied,
“The one you feed.”

May feeding your “Good Wolf” get easier. May you find the presence necessary to experience the beauty that is around you. May your head be full of peace and your soul be full of hope. May you find companionship in your journey and grace in your heart. May you practice self-compassion and learn to love the parts you once believed to be unlovable. May you never ever feel alone.

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.

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 emotional support, call the 988 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.

How I Got Support for Possible CTE

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

Posted: May 10, 2021

How I Got Here

My symptoms started in June 2012. At first the changes were subtle and hard to notice. It began with occasional suicidal ideation then progressed to a deep depression. Those were my first signs that something was wrong.

I saw a psychologist and psychiatrist and started taking medication in 2013 to manage anxiety and depression. I suspected, based on research that I had done on other former football players and fighters, that I might be dealing with the long-term complications of brain trauma.

Looking back on my athletic career I remember at least 12 concussions, plus tens of thousands of sub-concussive hits to the head. I played football growing up in Illinois and went on to play semi-professionally for the Lake County Knights from 1992-1996. I was also an amateur boxer. I had 10 amateur bouts and landed four professional fights. In hindsight I wish I stuck to body building and Brazilian Jiu Jitsu to avoid head trauma, but I didn’t know any better back then.

When I started getting treatment in 2013, I tried numerous antidepressants and anxiety medications. Unfortunately, one of the side effects of one of the medications I tried was suicidal ideation, which I was already battling.

 

It’s difficult to share this now but in 2014 I tried to take my own life. It really changed how I looked at what was happening to me. I knew I seriously needed help and kept trying to find the right care. I went to more doctors, psychologists, neuropsychologists, and neurologists trying to understand what was going on. With support from family and friends, and regular medical care, I made some strides and maintained focus on my career.

Then, in 2017, I started noticing cognitive issues and short-term memory loss. I took several memory tests with doctors showing a significant decline in my short-term memory and cognitive function. Eventually, after years of tests and treatments, I was diagnosed with early onset dementia and possible CTE.

 

For a time, I was somewhat stable. I had a name for what was happening to me. It wasn’t good news, but at least I could make sense of it. Then I hit a wall that led to a six-day stay in the geriatric mental ward at Alexian Brother’s Hospital Hoffman Estates. I went there because I felt like I was dying. I couldn’t explain it then, but I know now I will never forget that day. October 5, 2020. I wasn’t sure if I would ever leave the hospital. But looking back now, I am so glad I went.

 

The doctors listened when I told them how I felt, and they adjusted my medications and treatments. For the last five months or so I have felt constant improvement. I do as much research as possible trying to slow the progress of the illness. If it is CTE, I’m going to fight it and I’m going to help as many people as I can along the way by sharing my story.

Living with Possible CTE

The biggest challenge is just dealing with things on a daily basis. Whether it’s going to the doctor, or having a tele-med appointment, or suffering from physical or mental symptoms; it’s a constant reminder that you’re sick. I’ve found though, that it is possible to take control of your symptoms, and mindset is key. You have to accept that you must keep managing symptoms and moving forward, because if you stop, the symptoms can take over.

It’s hard to manage everything that is going on in life knowing you’re battling something that hasn’t been beaten before. And I say it’s a challenge because I do want to beat it. There could be thousands of guys that are in a similar situation that are battling this without knowing what is going on. I feel for them. They may not know why what’s happening to them is happening.

Whether it’s Veterans, ex-football players, domestic abuse survivors, people with a TBI or PTSD, they all have similar situations with their own individual challenges. They handle them differently and cope differently. Unfortunately, there’s no single blueprint or game plan for how to get treatment or gain resources. It took me 10 years and going to the hospital to put together a game plan, execute the game plan, and take control of my health.

Coping with Symptoms and Staying Hopeful

I am grateful for my wife Dawn and the support of my family. One of the best tips I can share for someone who thinks they might be in a similar situation is to learn how to utilize your smartphone. It is a really useful way to cope with my decline in memory and cognitive function. My phone is essentially my super-computer. It’s my notebook, my journal, my appointment setter, my way to connect with doctors and people trying to help me. It helps others help me.

 

My phone lets me help others as well. I can’t help somebody every single day, but I can help others when I’m in a good place. My phone allows me to communicate with other people as quickly as possible when I’m feeling OK.

I’m holding onto hope that in the next few years there will be better diagnosis and treatment options for people with early onset dementia, and especially probable CTE. I’m doing everything I can to slow the progression of dementia, and the rapid pace of research coming out keeps me hopeful. The options for people like myself are improving, and strategies to improve quality of life by addressing CTE symptoms do help.

If somebody reading this thinks they could be dealing with CTE symptoms, please reach out to get help immediately. Nobody is going to do it for you. Unfortunately, some people are inherently afraid of the stigma surrounding mental health. It’s different when somebody breaks their leg – people jump up to help immediately. When someone is dealing with a head injury, a TBI, PTSD, depression, anxiety, or any other mental illness, there is not as much proactive help.

Anybody who suspects they have CTE, whether you are struggling with depression, thoughts of suicide, mood issues, compulsivity, anything you’ve seen as far as a change negatively in your cognitive or behavior and you have a history of head trauma, you need to reach out to somebody right away. A great place to start is with the Concussion Legacy Foundation Helpline. I encourage anyone to reach out to the CLF HelpLine where they will get you personalized support and connect you with doctors and clinics in your area to develop a treatment plan.

 

As far as being able to get help, whether it’s physical, mental, or cognitive, there are doctors who can treat your symptoms. If sharing my story means just one more person gets the help they need I’ll know I’m making a difference.

If you are struggling to cope and would like emotional support, call the 988 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. 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.

Are you or someone you know struggling with lingering concussion symptoms or suspected CTE? 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.