Matt Cappotelli

 

Matt grew up in the small town of Caledonia, New York, which was a huge football town. His dad owned a gym and had him start lifting weights at a young age, something he loved and continued for the rest of his life. He started playing football in 8th grade and quickly became a star player. Matt had a great work ethic and was an amazing athlete, but he was also smart, witty, funny, outgoing, humble, and kind. He was known in his town and high school not only as a terrific football player, but for his humility and caring personality. Matt was a Jesus follower, and you could see that in the way he loved and interacted with people.

Matt continued playing football throughout his first couple of years of college at Western Michigan University, until he had to stop playing due to knee issues. This was when he decided to audition for Tough Enough, a reality show on MTV where contestants competed to win a contract with the WWE as a professional wrestler. Matt had been a wrestling fan since he was a little kid, growing up watching wrestling on TV with his dad. He ended up winning the show and was then sent to Louisville, Kentucky, to train at Ohio Valley Wrestling before being put on TV. That’s when I entered the picture.

Ohio Valley Wrestling (OVW) held a live weekly show on Wednesday nights that I would occasionally go to with friends, and we ended up meeting there after one of the shows. I knew who he was from watching Tough Enough a few times, and I was instantly drawn to him because of his strong faith. After our first date, I knew he was “the one” and that I would marry him some day.

We dated for two years, during which he continued to train at OVW, as well as occasionally travel to shows with the WWE. Matt’s dream was to become a WWE Superstar, not only because he loved to entertain and perform, but also to be a positive example for Christ in that industry. He was on the verge of his dream becoming reality when he discovered he had a brain tumor. It was one week before he was set to debut on Monday Night Raw.

Incredibly, Matt had no symptoms and only discovered the tumor after being knocked unconscious in the ring during an OVW match. He was sent to the hospital to get checked out, which was when they discovered the tumor. After a biopsy, Matt was diagnosed with stage 2 brain cancer. We got married on the beach in Hawaii two months later.

Unfortunately, with the cancer diagnosis, Matt had to put his dream of becoming a WWE Superstar on hold. In 2007, he had surgery to remove the tumor, and then did six weeks of proton radiation, followed by oral chemotherapy for the following two years. From that point on, he had MRIs regularly and the scans were clear for the next 10 years.

We had an amazing 12-year marriage, and I’m so thankful for those cancer free years I got to have with him, living life to the fullest. From our beach trips, to cruising in the Jeep on summer nights, our pizza and putt-putt dates, and even just our boring nights chilling on the couch at home, every day with him was fun. His smile and laugh were the joy of my days. I thanked God every single day for sending him to me. I never imagined the tumor would come back and naively thought his fight with cancer was over. Little did I know; the worst was yet to come.

Exactly 10 years after his first brain surgery, an MRI showed the tumor had grown back. I’ll never forget the day I got that call and heard those words come from his mouth – my worst nightmare had come true. Two days later, Matt had surgery to remove as much of the tumor as they could from his brain. About a week later we got the official diagnoses: Grade IV glioblastoma multiforme (GBM), the worst and deadliest form of brain cancer. The prognosis for GBM is not good, and we were told that even with treatment, the average life expectancy is around six months.

Matt underwent chemotherapy and also used a device called Optune, a fairly new form of treatment for brain cancer. Unfortunately, the treatments couldn’t keep the tumor from growing, and he continued to decline as the months went by. Watching my strong, outgoing, energetic husband slowly deteriorate was the worst thing I’ve ever been through in my life. He passed away exactly a year after his brain surgery on June 29th, 2018.

I knew Matt wanted to donate his organs, but because of the cancer he was unable to do so. He couldn’t speak towards the end, but I just knew he would have wanted to do something to help others in some way. Then I remembered his interest in CTE. During Matt’s time with the WWE, he became friends with Chris Nowinski and learned of the work he was doing to advance concussion and CTE research.

Matt was committed to CTE research as someone who had suffered multiple concussions in the past through football and wrestling, and someone who always wanted to help out a friend in any way he could. When he had his tumor removed in 2007, he reached out to Chris and coordinated sending the brain sample to Boston and the UNITE Brain Bank, just in case they could learn something from some of the healthy tissue that was removed. He did the same thing after his surgery in 2017. When we lost Matt, I knew he would have wanted his brain donated to help further CTE research. So that is what we did. He is the first person to have his brain tissue studied for CTE while he was alive and after he passed away.

While Matt had no obvious symptoms of CTE I saw during his life, it’s hard to really know because of the enormous changes his cancer caused. He did suffer from mild seizures or partial seizures, as they’re called, for the last two years of his life. Around the same time, he was also diagnosed with Parkinsonism, which is a neurological disorder that has many similar symptoms of Parkinson’s disease, such as slow movement, speech and writing changes, and muscle stiffness, among others. I noticed some of these changes a few years before he died, as well as some slight personality changes over the last few years.

When we got the results back from the donation, we learned he had been diagnosed with CTE, as well as Parkinson’s Disease. I found myself a bit emotional after hearing the diagnosis, and it explained a few things for me. Now I know that along with everything he dealt with from his brain cancer, he may also have been experiencing the early stages of CTE’s effect on his mood, memory, and thinking. Despite all of this adversity, he handled it like a champ, always stayed positive, and never complained.

The most common thing people say about Matt is that he was one of, if not the BEST, person they knew. He impacted countless lives. There was something about him – his smile, his laugh, just his presence, that drew people to him. More than that though, I think it’s because of the way he genuinely cared about others and how he made everyone he met feel important, no matter who they were. He made everybody feel like a somebody. He loved helping others and making people laugh. I think he was happiest when he was putting a smile on someone else’s face.

Throughout all of his injuries and health conditions, and even after two brain surgeries, chemo, and radiation, he never complained or felt sorry for himself. He never let it get him down. He was still always looking out for others and always laughing and joking around, even at the very end of his life. That was just Matt. I know he was disappointed that his dreams of becoming a WWE superstar didn’t become a reality, but he didn’t let it get him down. He continued to trust God’s plan and made the best of where He put him. He continued to help and inspire others, even if it wasn’t in the wrestling ring. All he wanted to do from his initial diagnosis of brain cancer in 2006 was to help and inspire others with his story and to point them to Jesus, and my hope is that his story will continue to do so. I’m thankful for the Concussion Legacy Foundation and that Matt was able to play a role in advancing the research and awareness of CTE, which I know is what he would have wanted.

 

Carey Jr. Herbert W.

My father was one of the greatest men to ever live. He was thoughtful, kind, caring, hilarious and above all, loved his family more than life itself. Dad was my hero.

My father, Herb Carey Jr., was born on February 12, 1951, in Salem, MA and was raised in Marblehead, MA. My dad was born into a football family. My grandfather, Herb Carey, Sr. was captain of the 1950 Dartmouth College football team and was drafted by the Philadelphia Eagles, though he decided not to play professionally. Ironically, my grandfather died of a brain tumor in 1983, but I often wonder what story his brain would’ve told.

From the time my father was a young boy he played football and absolutely loved the game. Dad played throughout middle school and high school, and also played all four years of his college career at the University of Maine, Orono. Throughout most of those years, my mother, Linda Hardwick Carey, was on the sidelines cheering him on.

My parents met when they were in middle school. They were married in June of 1972, the year before my father received his master’s degree. They would go on to spend 48 years of marriage together, raising two daughters and five granddaughters. But their marriage wasn’t always easy.

From the time I can remember, my father abused alcohol. Dad wasn’t aggressive, or mean, but he drank every day, and sometimes, all day. He received a few DUIs and lost his license for a period of time. I recall begging him not to drink before he came to any of my field hockey games, track meets, or before any major event, such as my prom, or family weddings. My dad finally got sober in July of 2004, three months prior to my wedding.

In addition to his battle with alcoholism, my father made some poor choices throughout the years. Dad had a temper, ironically, when he wasn’t drinking. Every once in a while he’d display erratic behavior, which became more frequent towards the end of his life.

One day, in the spring of 2012, my father was outside with my two daughters and he couldn’t recall their names. One of them is Carey, my maiden name, and the other is Hagan, his mother’s maiden name. It scared him, and it scared us, so we sought help.

In July of the same year, when my father was 60 years old, we received the punch in the gut of a lifetime: an Alzheimer’s Disease diagnosis (after his death, we learned my father had stage 4 CTE). I vividly remember that day. After the appointment, I recall getting in my car, trying to process what I had just learned and wanting to throw up. The news hit me like a ton of bricks, and I had so many questions. How long would my dad live? What would his quality of life be? How would my mother handle this? How would I handle this? After all, he was my best friend. I also wondered how this happened since we don’t have a family history of Alzheimer’s. So, I couldn’t help but immediately think of the years he’d played football.

When you’re diagnosed with Alzheimer’s, you’re diagnosed with a death sentence. There has never been an Alzheimer’s survivor, and the journey for both the patient and their loved ones is the most grueling, heart-wrenching, painful experience. We know this now, because we’ve lived it. Alzheimer’s isn’t just about “forgetting” things; Alzheimer’s for us, was having to tell my dad he couldn’t work any longer and needed to retire. Then came the time we had to tell him he could no longer drive, or when we had to convince him to downsize and move out of their house because we knew it would help my mom. There was also the gut-wrenching decision of having to remove him from my parents’ home, because it wasn’t safe for my mother to be with him any longer. This wasn’t my dad; it was Alzheimer’s. I don’t wish this on anyone, and my father didn’t either. In fact, he offered to sign up for as many trials and studies at Massachusetts General Hospital (MGH) as humanly possible. He always said, “I know it won’t help me, but if I can be a part of something bigger, or a part of a cure so that another family doesn’t have to go through what we’re going through, then I’ll do it.”

My sister and I took turns driving my dad to and from MGH for years for him to participate in trials. I grew to love those trips to and from Boston because I was able to spend more time with him. I’ll never forget the last day of the last trial he was eligible for; the trial was over, and my father’s Alzheimer’s had progressed to a point where he was no longer eligible for trials. I remember telling him we were leaving the hospital and he asked me where his medication was (it was always handed to us in a brown paper bag). I said, “Dad, the trial is over, we don’t have any more to participate in.” He collapsed into a chair and started crying. He said, “I need the trial medication, I need to do this for your mother, I need to be here for her.” I sat next to him, we had a good cry, and I told him things would be OK.

In 2016, he told us he had made the decision to donate his brain to the UNITE Brain Bank at Boston University upon his death. My dad wanted to do whatever he could to help others, but that was Herb Carey. Dad had a heart of gold. My father showed up for everyone, especially for his wife, two daughters, and five granddaughters.

In March of 2020, just as the world was shutting down, so was my father. We had to remove him from my parents’ home (for my mother’s safety) and find a place for him to live. Little did we know at the time it would be months before we’d be able to see him or hug him again. When we were finally able to reunite, we could see the decline.

On March 21, 2021, my dad lost his battle with Alzheimer’s. We donated his brain to the UNITE Brain Bank at Boston University upon his death and in January of 2022, our suspicions became reality. Dr. Ann McKee diagnosed my father with stage 4 (of 4) CTE.

In the end, the sport that my father loved, didn’t love him back. Instead, it cost him his life. Our hope is that with his brain donation to the Concussion Legacy Foundation, they will continue their tremendous efforts, so that one day, the world will be free of CTE.

Kelly Catlin

Kelly Catlin 11/03/1995 – 03/08/2019

 

Kelly was born a triplet on November 3, 1995 in Arden Hills, Minnesota. She, her sister Christine, and her brother Colin were a superpowered trio from the very beginning.

All three children were tremendous athletes and students, but Kelly’s intensity and competitiveness always stood out. Colin introduced her to cycling when she was a teenager and she never looked back. Cycling was a vehicle for her competitiveness and perfectionism and she loved it. She could always do more and do better on the bike.

Kelly started dominating competitions against her peers in high school, and before long she was beating members of the University of Minnesota men’s cycling team while she was still in high school. The cycling community took notice. In 2014, she attended a camp organized by the US Olympic Committee and was chosen to train for the 2016 Olympics in Rio de Janeiro.

She trained with USA Cycling in places like Colombia and Manchester while she balanced dual degrees in Biomedical Engineering and Chinese at the University of Minnesota. In Rio, she and the U.S. team won silver while we watched her race on a track for the very first time. In addition to the Olympic medal, Kelly won a remarkable five USA U23 National Championships. At home, Kelly became a local legend, speaking at assemblies and cycling clubs in Minnesota, and encouraging young riders.

After finishing her undergraduate degree, Kelly tried to balance three enormous commitments. She still competed internationally, started racing for Rally UHC Cycling in Minnesota, and enrolled at Stanford in Fall 2018. Her list of commitments was piling up.

“The truth is that most of the time, I don’t make everything work. It’s like juggling with knives, but I really am dropping a lot of them. It’s just that most of them hit the floor and not me,” she wrote in a VeloNews journal.

But on she went, unable to say no and motivated to do all she could.

“Kelly wanted to achieve perfection in everything she did, never wanted to show weakness, always wanted to make everyone proud, and first and foremost, never wanted to let anyone down,” said her coach Andy Sparks.

 

On January 5, 2019, Kelly suffered a concussion in a training event in California. The crash left cracks in the front and back of her helmet. The next day, she left the California event to train with the U.S. national team in Colorado. Kelly complained to us of severe headaches, dizziness, nausea, and sensitivity to light. Depression and an altogether different Kelly soon followed.

Our perpetually determined daughter began embracing nihilism. Training usually invigorated her, but workouts now left her feeling apathetic. In our phone calls, Kelly spoke like an entirely different, more detached person. Like a robot.

With Kelly now back at Stanford, she emailed us a suicide note. She said her thoughts were constantly racing and her mind was spinning. We immediately called the school, and campus police halted her suicide attempt. After 72 hours in a psychiatric unit and a week in a hospital, we stayed with Kelly in California for a week.

She seemed chipper. She just needed some time alone to rest. Everything was fine, she said. We flew back to Minnesota.

In our now daily calls, Kelly updated us on her return to school and her group therapy sessions, which she deemed worthless and a waste of time. She resumed training at an absurd level, completing three high-intensity workouts per day and going 11 days without rest at one point. But new health issues arose.

 

Kelly’s first suicide attempt caused hypoxic damage and elevated her cardiac enzymes, resulting in shortness of breath. Her concussion symptoms also returned. She had to close her eyes in an Uber ride to beat a headache and reduce nausea. Now unable to train, she was ruled out of participating in the UCI track world championships in Poland in late February. Kelly was devastated and told us she contemplated ending her cycling career.

We called and texted Kelly during the first week of March to try and encourage her to embrace some much-needed rest. After Wednesday we received no response. On Friday morning, March 9, my wife Carolyn called Stanford police. They found Kelly had died by suicide in her apartment the night before.

 

The news gutted our family and the cycling community at large. How could someone with such limitless potential choose to end her life? As we grieve, we must also learn from Kelly’s life to prevent more of these horror stories from happening in the future.

We believe a combination of her personality, overtraining, and her concussion caused her mental health to deteriorate. Kelly’s relentless determination, which allowed her to fly to such great heights, led her to deny she was in trouble or accept help at the first signs of struggle. When she needed to slow down, she did the opposite, training harder than ever on top of a challenging workload. Her persistence had paid off previously, but it wasn’t helpful when she was all the while suffering from a concussion.

Her muscles may have gotten brief rest, but her brain never did. We want to share the story of Kelly’s death because it would have been so easily preventable and other people can be saved. I believe a single person recognizing Kelly’s Post-Concussion Syndrome could have made all the difference.

If one medical person had shown her this article, or explained that her confusion, apathy, despair, trouble concentrating, trouble sleeping and heart problems were due to Post-Concussion Autonomic Dysregulation, she would have rested like she needed to. This wonderful, gifted person would be alive today. All of her symptoms probably would have improved with two weeks of good rest. Many athletic programs have set protocols for return to activity after concussions. She was seen and evaluated for her head injury at both the Olympic Training Center and at Stanford Medical Center, but to our knowledge they neither put her on a concussion protocol and return to activity protocol, nor advised her coaches to institute and enforce such a protocol.

After her death, we donated Kelly’s brain to the UNITE Brain Bank in Boston to investigate any possible damage caused by her concussion and to seek explanations for her neurologic symptoms in the last few months of life. We hope the results of her brain study and her story can save future athletes from a far too common fate.

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 here.

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.