The College Years

Since 1950, Nebraska Football has honored one of its players each year with the Tom Novak Award for a player that “best exemplifies courage and determination beyond all odds in the manner of Nebraska All-American center, Tom “Train Wreck” Novak.” John Bell earned the Tom Novak award in 1973 for playing the game with intensity—reckless abandon as the coaches called it. Fighting through injuries and personal setbacks, John, #66, was tough and a critical part of Nebraska’s 1971 National Championship team, 1972 Orange Bowl championship team, and 1973 Cotton Bowl championship team. This was in addition to his mention on the All-Conference and All-American academic award roster and to John being a two-year letter winner on the Husker wrestling team. Middle guards don’t often get that level of notoriety. John was blessed with exceptional quickness and power as he leveraged his 202-pound body among interior linemen of a much larger stature.

Raising a Family and Building a Career

John was known to have a strong work ethic, working through his teen and college years. He obtained a teaching credential from Nebraska. Wanting to work with adolescents, he started as a youth counselor with the California Youth Authority detention system. Family priorities changed and a move closer to family took John to high school teaching and administration for the majority of his career. He loved working with kids and connected with them at all levels through a knack for good ideas and resourceful programs. His spontaneous nature for making things happen enriched many young peoples’ lives.

As children (Jared-son and Carrie-daughter), growing up with their father was always an adventure. He was always trying to introduce his children to new things and broaden their horizons. He challenged them every chance he got. He was at every game, every debate, every play, dance or choral recital, and every parent-teacher meeting. He was honest with his children and treated them with respect and listened whenever they had complaints and problems. Their communication was open and safe whether it be about sex, drugs or world events. John and his then-wife Paula divorced, and John insisted on joint and equal custody for his children in court.

He continued to include his children in his life even when he started dating his eventual second wife, Kathy. He always checked in with Jared and Carrie to make sure that they liked her. He even included the two kids on dates. John married Kathy in 1988 and they remained together until his death. Carrie and Jared were in the wedding and were also included on a family hiking trip/honeymoon—a “family-moon” long before it became trendy.

Carrie (Car-bear) and Jared (Jar-bear), as he called them, would attest to John’s level of enthusiasm via the many outdoor adventures and family trips as John’s reputation as papa-bear became legend. Until about 2007, Jared and Carrie would describe their dad was a bright shiny person. His Memorial Day parties were legendary. Their family and friends would gather. Everyone ate like kings, listened to music turned way up, and swam for hours. The kids were always going on road trips and encouraged to explore and try new things. He was firm and pushed the kids to their limits but was always kind and full of love and instruction. Carrie’s desire to see the world and live life fully were seeds planted by her dad. He also taught her how to be loyal and brave, to fight for the weak, and stand up to bullies. John was very proud of his kids.

As time went on, however, his lack of mobility and constant pain from arthritis restricted his need/desire to work out and remain physically active. The loss of this physicality in sports, which was so validating to John and so much a part of his youth, created issues. In his younger years, it was the physical contact inside and outside of wrestling and football that kept him focused.

John died on March 31, 2016, from a very aggressive onset of polyneuropathy, septic shock, coupled with complicating infections. The prognosis for recovery was not positive and after a week in ICU he was put on life support. Sadly, after two days of continued decline the family had to make the decision to take him off life support. Upon hearing of John’s passing many said that their lives would not be what they were today without John Bell. The family had just a small ceremony, but they received many cards, and Facebook posts in addition to the newspaper notice acknowledging John’s contributions.

Battling the Demons

John’s life was not easy, as his bi-polar II and ADHD diagnoses tormented him throughout adulthood. He just didn’t feel normal. Anger, irritability, binge drinking, hurtful comments, fault-finding, blaming, and rages triggered isolation. He often got very upset with friends and family and became disappointed with who they were. This led to negative comments as he would “just let them have it.” It was hard to recognize at times, and his kids internalized that this behavior was “not their father” and that he was not a “horrible person.” But it was painful to watch and also painful to be the brunt of the side effects. In an attempt to mask his demons, John’s risk-oriented personality lead him to more alcohol and recreational drugs. It was possible that the alcohol and drugs were a subliminal strategy to mask or suppress the undefined underlying medical issues. It was not a solution that worked and likely led to a psychotic break in his late 40s. Medication was prescribed but not always used.

His body wore down from the years of battle. With the loss of a physical outlet he turned to writing poetry and engaging in the arts more and more. But, as time passed the poetry became darker and darker and his trips to “outer space” went from once every six months to every couple of months. He would call his family several times a day at all hours of the day. He was always upset about things from the past, things that were unfinished or unresolved. Jared would sit and talk with him as much as he could. Sometimes John’s anger was directed at Jared for something he did or for not being there to answer his phone call. Most of the time he praised Jared for things he accomplished twenty years earlier or for the great father he was. He would end every call with, “love is love” and Jared responded with “not fade away.”

From their perspective, not being able to do as much physically made their dad grumpy and sad as he started cycling between being up and manic and down and depressed. He always had a fiery temper but it was easily provoked as he got older and deteriorated to where the littlest things would set him off. Maybe someone said the wrong thing or you slept in too late while visiting or weren’t ready to walk out the door the moment he was. Or, he would call within minutes of the last call and his messages would usually start nice and normal and then would get angrier. In the last few years he had left some pretty accusatory messages and would often call them names or swear at them. He started to act paranoid about how we were not being loyal enough or grateful enough.

John was not great at taking his bipolar medication because he didn’t like being “flattened out.” It wasn’t him, but then again neither was the person he was becoming. At a certain point we always wondered what dad we were going to get when the phone rang or when we went to visit. These rages within the family would lead Kathy to warn the kids that John was in “crazy land right now” and not to try to deal with him. Often, the events involved a very specific timeline that wasn’t honored and John would become unhinged. It was as if the unresolved details themselves would upset him. At times, John’s desire for closure would trigger an almost “stalking” response to get things settled. The many layers to the issues he was dealing with made productive employment unrealistic.

Kathy, John’s constant companion and soulmate, sought support in counseling, visits to AA and Kaiser with John, visits to Al Anon on her own and the loving support of friends and family to cope with the many challenges. Naturally, social contact with others disappeared with John’s difficult interpersonal issues.

Carrie and Jared struggled to reconcile the idea that they had grown up so loved and supported and with so much magic and fun only to see the last 20 years end with what seemed like a totally different person as a father. The family saw John’s great big smile less and less, heard that jolly uncontrollable laugh less and less.

In the last two years of his life John spent more time lost in his head than with the rest of his family. He and Kathy would come visit for a day to watch the grandkids play sports. But after a few hours, he would get antsy and was ready to go. He never seemed 100 percent at ease with his surroundings. It was like the man they grew up with was trapped inside. The changes happened slowly at first, but as time passed, the decline of the man his children had called dad sped up with every year. They would all agree that one day he was his normal self and then suddenly it seemed like a switch had been flipped and he had a different personality. With sadness, anger, and confusion as a forefront to his emotions—complications set in with continued self-medication with alcohol. His love for his family was never a question. It was always there, but sometimes residing too far down to be seen.

Donating John’s Brain

After seeing the movie, Concussion, it was Carrie that made the connection with John’s behavior issues and CTE. When we realized he wasn’t going to make it, Kathy contacted Boston University’s Chronic Traumatic Encephalopathy (CTE) Center, as well as Lisa McHale at the Concussion Legacy Foundation (CLF) to find out if they would take John’s brain after he died. Both Boston University and CLF were enormously helpful in their efforts and in time John was diagnosed with Stage III-IV CTE. With this diagnosis, the family achieved a sense of peace and forgiveness in having to take John off life support. There was a sense of reconciliation with the two dads whom they had come to experience. Part of what made it so hard for his family was that John had always been a pillar of strength and athleticism. He was rarely sick and he recovered quickly. He was always active, athletic and strong—in the end he was none of those things.

How has your attitude toward football changed?

Kathy remains steadfast in her support for football. She feels strongly that football provides an outlet or release for the aggression needs of many young men. The physical nature of the game, while not for everyone, is perfect for some. While her concussion awareness is much better today, she hangs onto the hope that the equipment will continue to become better and that testing of athletes will help improve the player safety aspect of the game. She is optimistic that we can become smarter and that the game will evolve.

Jared’s wife now worries about him with the eight concussions he experienced over his playing time.

Carrie feels that John’s story is important for people to read so they can understand that CTE can happen, even if the athlete did not play professional football in the NFL.

Love is Love…

Not Fade Away

Copyright © 2017, James Proebstle

Matthew Benedict’s One Last Goal

Looking back on Matthew’s life we often wonder: what went wrong? We believe the brain injuries he sustained in his youth played a significant role. His first concussion came at a very young age. It was a collision with a baseball and his eye socket. There were other hits to the head we did not know of – childhood games in the back yard, collisions in football, hockey, and lacrosse. Matthew never wanted to be a burden. Matthew was three years old when he started playing organized hockey. He started soccer soon after, then lacrosse and football all by the age of 12. Matthew was a fierce competitor who would sacrifice himself for a win.

He was rarely sick, and when he was, he would will himself better. We can count on one hand the number of times he went to the doctor because of illness. He was healthy physically and mentally until late in 2013, when he sustained a couple of hits to the head in a game while playing defensive back for the Division III Middlebury College football team. True to form, he tried to “will” himself better and hid his PCS out of embarrassment. Plus, he didn’t want anyone to worry about him. We never even knew he started experiencing symptoms of PCS after those hits until he fessed up two months later when he was home for winter break, and he couldn’t hide it from us any longer.

Matthew never complained, but in January of 2014, when we took him to the doctor for his lingering concussion symptoms, he revealed that from a very early age he had his “bell rung” more times than he can remember. He never considered his “bell rung” incidents as sub-concussive hits or concussions, and he never told us about them until it was too late, and the damage had already been done.

In May of 2015, one-and-a-half years after he suffered those debilitating hits, and the day after he graduated from Middlebury College, Matthew wrote a piece called “Start the Conversation Now…Life is Precious.” This was the first time we realized how badly Matthew was hurting. Before then, we were concerned, but not alarmed. This piece rocked our world and deep down we knew Matthew may be in serious trouble. Here are some of his words from that piece:

“Before I begin, I do not want to hear any words of how courageous I am because frankly it is the opposite. It is much easier now that I graduated to tell my story, so I apologize for not having more courage…I do not like to draw attention to myself and often get embarrassed in front of crowds or when other people talk about me. I have suffered two severe episodes of depression these past two years. These times have been the scariest times of my life and have lasted many months. Not scary because I was actually scared, but scary because I felt nothing at all. The emptiness was devastating and it was beyond frustrating not knowing what really caused it.

The first episode was right after the football season of 2013… the season ended and I was honored 2nd team all-NESCAC and then was voted team captain by my peers and teammates at our awards banquet a few weeks after the season ended. This was one of the worst things for me that made my depression even worse. My self-confidence and self-worth tanked so much that I figured I was not worthy of any award or leadership position and any thoughts of the future made it worse. How was I supposed to be a captain when I didn’t even have confidence in myself? Or what would my teammates think when they found out about it? I wanted to hide from everyone and everything. I could not carry on a conversation of any depth and most conversations were people congratulating me. Congratulating me on what? Not being able to get out of bed? For taking hours and hours to work in the library only writing a paragraph? I had no reason to be congratulated. I wasn’t working out and I was setting a terrible example for my team. I stopped calling home, going out with friends, or having any joy in life. I withdrew from everyone and everything and could not even look the wonderful beautiful girl in the face to say I could not carry on our relationship after a few months leaving her heartbroken and confused. Every time I hid I later on regretted it more and more which made me feel even worse. Self-harming thoughts began to creep in… I felt like everywhere I went people knew right away about me and were judging me ruthlessly. I refused to tell my friends and family the extent I was feeling because I was embarrassed. I was ashamed of myself… I was such a coward. I was a terrible person. My teammates thought I was this great guy and to be honest I was not being that at all. I thought I was going to flunk out and my future was over. I thought I had made it all this way only to fail the first semester of my senior year. I thought I would let my school, team, friends, and ultimately family down. Some captain I was…”

After Matthew wrote those words and published them online, he felt the stigma in revealing his weaknesses to the world. He later wrote: “it is the most frustrating thing to feel ostracized from others or feeling like they look down on you because you have been suicidal in the past. It is bad enough the guilt we carry around for considering suicide that we do not need to feel judged by others.”

Matthew often commented that after he went public with his mental health struggles, people looked at him and treated him differently. He tried to go on with his life, reluctantly agreeing to meet with different doctors, but he avoided them as much as possible because he didn’t feel there were any answers to his problems. He believed most people didn’t understand him. It’s not like he had a broken leg that could easily be diagnosed and fixed… he had a broken brain. We were in constant search for a proper diagnosis, treatment or a cure for Matthew, but we simply couldn’t find the answers he so desperately needed.

Matthew continued his life as best as he could. Enrolling in law school, earning an excellent GPA some semesters and having to medically withdraw from other semesters because of anxiety, depression, and feeling like he was the dumbest student in school. In January 2019, about five years after his initial diagnosis of Post-Concussion Syndrome, he wrote thoughts about ending his life, but like the other times, he did not share his thoughts with anyone. After he passed, we found these notes he wrote about six months before his death:

“The first time I thought about suicide was my junior year of college. My football team had won a share of the league championship. I was voted team captain. I was seeing my dream girl and she was a golden girl herself. I fell in love for the first time. I was killing it, no pun intended.

Despite all the success, I fell into a deep depression for the first time in my life. All of a sudden, my whole livelihood was ripped from my eyes. I had no idea how it happened. Towards the end of the football season I had the game of my life versus Trinity College our nemesis. In the 4th quarter the quarterback, who was a 200 pound 5’ 10” raw athlete, ran me over full speed. I do not remember getting up from the hit. But the coaches would have had to drag me off the field to remove me from the game. I kept silent and hid from it. It was for the Championship. I made 19 tackles and was named player of the week for my league. I knew I was concussed but I was too proud to admit it. The adrenaline was through the roof. All I had trained for and worked so hard for was on the line during that game. I was chasing the glory of being a Champion. We did it. We won the flashy rings. A game I will never ever forget. Besides the quick bit after that hit. After the game, I went out and got drunk to celebrate. My teammates knew my head was bothering me but I told them I was fine. I wasn’t.

Three weeks later I went home to see my family for Thanksgiving. They had no idea how bad things were. I played it off like I was still the golden boy. I had learned how to put on a good show for the outside world. When I returned I slept for most of the day. Stopped going to class. Lied to my friends about going out while I was by myself. Stopped responding to my friends. Ran away from the girl of my dreams. I felt worthless… My whole life was a lie. I was no Golden Boy. I was a coward. I was weak. That is what I told myself…I went on a drive one night to try to clear my mind…It was a life altering experience.”

Six months after Matthew wrote this, nearly six years after he was diagnosed with PCS, Matthew died by suicide. His PCS robbed him of his ability to see the value in his life and how much others loved and respected him. It robbed him of his ability to think clearly and love deeply. On the day Matthew died, we believe his soul had already been stolen from him.

According to the National Institute of Mental Health suicide is a complex public health concern, and there is no single cause. Suicide most often occurs when stressors and health issues converge to create an experience of hopelessness and despair.

At the time of Matthew’s death, he was a summer associate for a law firm. He cherished his inalienable rights of liberty and freedom. In life, he relentlessly tried to search for the truth. Unfortunately, we remain without answers about his death. We do know, though, when Matthew attempted to be transparent about his mental health, he felt judged. This led him to avoiding opening up to loved ones and discontinuing appropriate treatment. Even though he realized this was a problem, he was reluctant to properly address it because the stigma was so powerful. We feel Matthew would have wanted us to resume his battle by helping others realize that mental health is just as important as physical health, and “it’s OK not to be OK.” He would have hoped others could live and be free from the shame associated with mental illness. We believe he would have encouraged us to spread the message so others would not feel the guilt he felt. We know he would have wanted all of us to be kind and not abandon each other during our times of need. In one of the pieces Matthew wrote and published, he had some advice for all of us:

“…Start the conversation. No more hiding. No more silence. Speak up. Reach out. Tell people you love them. Make the community and the world a better place. Mental health is no fun but it is necessary to talk about. Don’t be like me. Don’t wait. Be brave…You see what others have and often compare yourself… I still regret my actions and will never fully be able to forgive myself but I challenge you to not be like me… If we want to make the world a better place we must act. We cannot be silent…Tell everyone you love them every single day and treat those you don’t know with the same love… start the conversation now… life is precious…keep the conversation going…and listen…don’t just hear, but listen to those you love and listen to everyone around you…make sure they know they matter.”

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 Suicide & Crisis 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. If you’re not comfortable talking on the phone, consider using the Lifeline Crisis Chat.

If you or someone you know is struggling with lingering concussion symptoms, ask for help through the CLF HelpLine. We provide 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.