Daren Gilbert

Daren Gilbert was born October 3, 1963 in San Diego, CA. The Gilbert family relocated to Compton, CA, where Daren attended Emerson Elementary School, Ambassador Christian School in Downey, CA, and graduated in 1981 from Dominguez High School in Compton. Daren obtained his Bachelors of Science in criminal justice from California State University Fullerton and later received his Master’s Degree in Education Administration from California State University of San Bernardino.

In high school, Daren played both basketball and football. Football became his passion and he earned a full ride scholarship to Cal State Fullerton. He started in every game for three seasons and was the team’s co-captain. The CSUF Titans won the PCAA Championship in 1983 and 1984, played in the Cal Bowl in 1983 and the undefeated 1984 Titan team was inducted into the CSUF Hall of Fame in 2019. Daren was an all-star selection to play in the East-West Shrine game in 1985. That same year, the New Orleans Saints drafted him 38th overall. Today, he holds the record for the highest NFL draft round pick from Cal State Fullerton. Daren was a member of the first winning team for the Saints. Daren’s older brother, Darren Comeux, also played 10 years in the NFL and in 2009 his son, Jarron Gilbert, was drafted in the 3rd round by the Chicago Bears. All three are proud members of the NFLPA. After the NFL, Daren devoted his life to teaching and coaching. He coached several sports and positively impacted the lives of many youth in Southern California.

What happened to my best friend? A Wife’s Story

Daren had various struggles throughout life after playing in the NFL. Married 36 years, we worked diligently to solve most problems. Daren developed many tools to function in life. We were working with The Cleveland Clinic, Boston University CTE Center, and the NFLPA – The Trust to develop strategies to live a functioning life with CTE. COVID caused new problems. Many of the tools we were using were greatly impacted by COVID and Daren began to change into a different person.

COVID had a drastic impact on our relationship. The restraints of being confined and not following his daily routine made him angry and difficult to live with. I became scared and concerned. Most of his acts of anger were directed towards me and he didn’t remember doing the act after it occurred. My best friend turned into a stranger. Soon the CTE behavior consumed him. This began a downward spiral into a dark world. Daren was a beautiful person murdered by CTE.

On Thursday, August 4, 2022, at home, Daren suddenly and unexpectedly transitioned from this life to eternity. Daren is survived by his wife of 36 years, Alayna McGee Gilbert, his children Jarron Gilbert (Cassandra) and Kourtney Gilbert, and grandchildren Londyn, Jayda and Amari Gilbert, and Laila Criscione. Daren was a great human and will be greatly missed by all.

 

Peter Grant

The Damage Done

Peter Grant ’83 played interhall football for Notre Dame’s Grace Hall. Dave Duerson, a classmate and casual acquaintance of Grant’s from the dorm, was an All-American defensive back and an 11-year NFL veteran who won two Super Bowl rings. Their athletic careers could not have been more different.

But Grant and Duerson were alike in competitive passion. They played hard. And in the end, the game did not distinguish between them. It turned their intensity into an insidious, mysterious disease. Years removed from their last athletic collisions, they suffered a toll far worse than aching knees or arthritic hips, a loss impossible to repair or replace. They lost themselves and, within days of each other last February, their lives.

 

Collisions

Spero Karas ’89, the Atlanta Falcons team physician, talks about the intricate, delicate calibration of the brain in a way that suggests he keeps his in fine working order: “Brain cells communicate through ion channels, a normal flux of sodium and potassium and calcium, and then less implicated, of course, magnesium. There’s a fine balance of these as cells communicate with each other in the brain.”

To explain how a high-speed collision can jostle that communication into incoherence, Karas reduces it to a layman’s image: think of the brain at impact, he says, as a racquetball bouncing around a court. “You can imagine those cellular processes going haywire during a blunt-force trauma.”

That’s how someone suffers a concussion. When a collision generates g-forces strong enough to interfere with brain-cell functioning, the immediate effects are familiar: wooziness, confusion, slurred speech. “There’s still no treatment for it, there’s still no medication, there’s still no really firm diagnostic tool,” Karas says. “There’s very much still that we don’t know.”

Doctors do know that a player should never return to competition until the symptoms have subsided and an objective level of neurological functioning has been restored. Computerized testing before an injury occurs, now common at all levels for athletes in high-impact sports, establishes their baseline level of cognitive ability. After a concussion, they must return to that level before receiving clearance to play. This method identifies subtle variations in memory, orientation and reaction time that observation alone might miss, which helps prevent debilitating injuries to vulnerable brains that can occur if players return too soon.

But there’s another hazard, more difficult to identify, and possibly more dangerous: the cumulative effect of hit after hit after hit that never causes a diagnosed concussion. “Linemen might take a thousand, fifteen-hundred hits to the brain every season. That’s the nature of the position,” says neuropsychologist Robert Stern, co-director of Boston University’s Center for the Study of Traumatic Encephalopathy — the “brain bank” that investigates trauma-induced disease. “They may not complain of any symptoms, or few symptoms, or irregular symptoms.”

Nothing, in other words, that keeps a player off the field. Yet each collision could be contributing to the development of a degenerative condition with far worse consequences. Chronic traumatic encephalopathy (CTE) is the contemporary term for the disease forensic pathologist Harrison Stanford Martland identified in 1928 as dementia pugilistica. Punch drunk.

Repeated blows to the head can lead to this mental state that causes symptoms similar to — and, Stern says, often diagnosed as — Alzheimer’s, Parkinson’s, Lou Gehrig’s disease or the more general term, dementia.

Neuropathologist Ann McKee examines brains donated to the research center, which now has more than 70 from deceased football and hockey players, boxers, and military veterans who experienced combat trauma. On thin slices of the brain stems, McKee identifies the pathology that distinguishes CTE from those comparable diseases. An accumulation of the protein tau inhibits brain-cell function. The condition progresses slowly, but nothing can detect CTE in a living patient. More and more cells die and, depending on the areas of the brain affected, memory loss, mood or behavioral changes offer the first indication of a downward spiral that no treatment can prevent.

A fog

Before she got to know him, Dave Duerson’s future wife, Alicia, feared him. He played with such ferocity that she couldn’t imagine him acting any other way. Their first meeting dispelled that notion, and they stayed together for more than 25 years. “He was so sweet and kind,” Alicia told The New York Times. “He could leave the game on the field and go back to being Dave.”

For more than a decade that included Super Bowl titles with the Chicago Bears and New York Giants, he left the field and went back to being a loving husband and doting father to the couple’s four children. But sometimes just getting home after games was a challenge. In interviews after his death, Alicia recalled driving him because he felt too foggy to be behind the wheel himself.

Tregg Duerson ’08 doesn’t remember much about his father’s “Double D” football persona but recalls him “sleeping like a whole day” to recover from the physical punishment of NFL games. To Dave Duerson, the symptoms — dizziness, nausea, headaches — were routine. With some rest, he was ready to go again.

One report estimated that Duerson suffered 10 concussions, a number that sounds low to Tregg, given his dad’s aggressive reputation and the era when he played. “I think it was a much different culture than today.” And that number doesn’t even account for the untold number of normal hits that he just slept off.

Questions

Repeated blows to the head — whether or not they are severe enough to produce concussions — are a known cause of CTE, but those collisions alone are not enough to trigger the disease. Otherwise every former athlete in a high-impact sport would be debilitated later in life.

A growing body of research, especially the identification of CTE in 14 of the 15 deceased professional football players who donated their brains to Boston University’s study, has stirred public concern. And it’s not just pros, the people who exposed themselves to the risk for decades dating back to youth football. At age 21, University of Pennsylvania defensive end and team captain Owen Thomas committed suicide. His parents donated his brain, which had the telltale buildup of the protein tau associated with CTE. An anonymous, deceased 18-year-old high school football player is the youngest person ever shown to have the disease.

Stern notes that the prevalence of CTE among his center’s subjects reflects, in part, a self-selected group whose mental problems gave them or their families an incentive to seek a posthumous explanation. Still, 14 out of 15 professional football players is a startling statistic, especially for a condition all but absent among the general population. Although the victims have a history of repeated head trauma in common, the underlying susceptibility — why them and not their teammates? — remains a mystery.

“Are some people genetically more prone to developing the disease? Is it things like the age at which someone starts getting their head hit, or the overall duration of the exposure to brain trauma? Or the repetitiveness without rest in between hits?” Stern says. “We just don’t know any of those answers.”

Multiple hits

Katie Grant ’11 can only imagine her father as a high school athlete. If Peter Grant played football and hockey anything like he competed against his son, Zachary, “I’m sure he was very intense,” Katie says with a laugh.

He must have been. By his own account, Grant suffered seven concussions, including two that put him in the hospital. Once he was carted off the field, unconscious.

The specifics of the injuries — the circumstances, the severity, the length of recovery — have been lost in the retelling and the vague recollections of family and friends. “We also don’t know,” Katie Grant says, “if he took the full amount of time to heal after them.”

That’s a crucial piece of information. Using an individual’s baseline results, doctors today determine when players can return based on computerized, objective measurements. In the late 1970s, when Grant played high-school sports, identifying how many fingers a trainer held up might have been enough. “Now what’s important is screening, avoiding a second injury to a compromised brain,” Karas says. “That’s where the catastrophic, irreparable damage occurs.”

It’s possible that Peter Grant suffered that kind of irreparable damage before he even graduated from high school.

Long-term fears

Tim Ridder ’99 remembers his concussion and its aftermath the way most people might recall their 4th birthday party. “Remembering,” he says, “is kind of a funny word to throw in there.” From a video of his sideline evaluation and recollections of family and friends — but not from memory — he has cobbled together an account that has become the story.

During a preseason practice as a ND freshman offensive lineman in August 1995, Ridder suffered a concussion on one play and, unaware, returned to the line of scrimmage for the next. After the snap, he never moved from his stance. Assistant coach Joe Moore barreled toward him, raging. But when Moore got there, he found Ridder dazed and in tears, and summoned the doctor.

Longtime Notre Dame sports-medicine specialist Dr. Jim Moriarity went to work, with a camera recording the examination for teaching purposes. In addition to answering Moriarity’s questions, Ridder follows the doctor’s finger with his eyes, touches his nose, and wobbles trying to put one foot in front of the other like a drunk driver failing a field-sobriety test. “I think at that point I told them I had won the Blue-Gold game on my own,” Ridder says, “and I had never even been a part of the Blue-Gold game.”

He hadn’t even officially enrolled as a student. Freshman orientation was the next day, but instead of attending the event, he somehow ended up on the other side of campus, where a friend found him. Over the next week, he called home four times to tell his parents he had suffered a concussion. Not only were they aware of the injury, but Ridder’s father was at the practice when it happened.

Now 34 and a middle-school principal in Leadville, Colorado, Ridder thinks about the potential long-term effects of his “one and only” diagnosed concussion that kept him out about six weeks. All the hits from a football career that included two years in the NFL already reveal their residual aches in his knees and shoulders. He can live with those things. “I don’t want my brain to be the thing that happens early,” Ridder says.

Even that threat — memory loss, dementia, mood or behavioral changes — comes with a sense of culpability. “I did this to my body,” he says. “I had a lot of fun doing it; I knew what I was getting myself into.” Then he reconsiders the thought. “Maybe not completely,” he says, but common sense suggested what science has begun to establish — the correlation between repeated hits and mental decline later in life. Ridder remembers a professor telling him that if men were meant to play football, they wouldn’t have to wear an exoskeleton.

He thought more about the physical consequences then, conscious that his body could absorb only so much punishment without retaliating. That awareness shaped the message he delivered to children about the importance of education: “I’d say, ‘Your body falls apart, but your brain doesn’t. Take care of your brain because that’s what you’ll have going for you long after your body breaks down.’”

Moving forward

After he retired from the NFL, a champion with a charitable heart who had received the league’s Man of the Year award for humanitarian work, Duerson’s professional success shifted to a new arena. His business aspirations were at least as grand as anything he pursued as an athlete — and he paid his dues like a rookie to achieve them. After retiring from football in 1993, he became a McDonald’s franchisee, which requires months of training that includes working in a restaurant. “A year before that, this guy was in the NFL,” Tregg Duerson says. “That’s saying something. He was very hard-working no matter what he did.”

After owning three McDonald’s franchises, he bought a majority stake in meat-supplier Fair Oaks Farms and later started Duerson Foods. He remained involved in NFL labor issues and became a Notre Dame trustee. In business, he was the same ambitious, charismatic success story he had been in football. Even then, whether he recognized it or not, the damage already had been done.

Crash test

Helmets don’t help. Not enough, anyway. Most current models are not designed to protect against concussions at all. They are meant to prevent skull fractures — and they do. “But the head still moves around inside the helmet,” neuropsychologist Stern says, “and the brain, more importantly, still moves around inside the skull. That’s what causes brain trauma.”

A Virginia Tech study — sort of a crash test for football helmets — released a star-rating system in May, the first comprehensive consumer safety information ever published on the industry. As if to illustrate how little had been previously known, the NFL’s most widely used helmet — the league does not mandate what players wear — finished next to last in the study.

There have been improvements. New helmet models absorb more g-forces before they reach the brain; this could reduce the number of concussions. But no current technology can prevent them. Says Stern, “Equipment is not the answer — or it’s not the sole answer.”

As Stern and others continue to pursue research breakthroughs, they know this much: Eventually, some of the people exposed to the thwack of helmet on helmet, over and over again, will get sick. “The key to how to help prevent CTE, or at least decrease the risk,” Stern says, “is to reduce the overall exposure.”

That means less hitting in practice, a precautionary tactic beginning to gain traction. The new NFL collective-bargaining agreement limits contact in offseason workouts and regular-season practices. At the college level, the Ivy League has imposed the most stringent hitting restrictions yet. The rule, implemented this season, allows tackling, or contact of any kind, only twice a week. Current NCAA regulations permit five full-contact practices.

Loving life

There is a history of depression in Peter Grant’s family. In his early 20s, he was diagnosed with bipolar disorder, which he managed for decades with medication. He was open about his condition with his wife and three children, but it was controlled so well that nobody else would have known. “He was always his usual self,” Katie Grant says.

Outgoing and active in his West Bridgewater, Massachusetts, community, Grant chaired the town finance committee, served on the Bridgewater Savings bank board and coached kids’ sports. An accountant with an undergraduate degree in business, he built a career in finance and operations for The Boston Globe and later worked as a media consultant. “He loved his job and the media business in general,” Katie Grant says.

She describes all her father’s interests that way. He loved to talk, he loved to read, he loved to travel. He especially loved Notre Dame. That influenced his daughters. Katie graduated in May and younger sister, Chrissy, is a senior. (Their brother, Zachary, is in high school.) The memory of her dad’s animated campus visits makes Katie laugh. “It was almost too much.”

A sporting chance

Tim Ridder’s torn. He believes safety should be a priority, equipment and medical treatment should be state-of-the-art, and athletes should have as much information as possible about the risks of participation. On the other hand, he loved playing football, and he would hate to see the sport suffer if reasonable precautions could be put in place. “We have to make sure we’re not creating another Rome,” Ridder says, “where there are gladiators dying on the field depending on whether Caesar gives a thumbs-up or thumbs-down.”

Some former players believe that’s how they were treated. Claiming the NFL mishandled concussion treatment and concealed evidence for decades about the long-term effects of head injuries, in July a group of 75 former players sued the league. The NFL vowed to fight the suit, but its approach to head-injury awareness has changed in recent years.

A league medical committee formed in 1994 produced reports downplaying the ramifications of multiple concussions. A 2007 pamphlet informed players that “current research with professional athletes has not shown that having more than one or two concussions leads to permanent problems if each injury is treated properly.”

The message shifted before the 2010 season with locker-room posters describing the threat of depression and dementia, new rules about concussion treatment, and a $1 million donation to the Center for the Study of Traumatic Encephalopathy. “It is the hot-button item in the NFL,” Karas says. “It’s probably what we spend the most time on in our disability meetings. What is the NFL but a large corporation that employs thousands of people? And being able to characterize the amount of injury and potential disability and getting these guys back safely is the number-one medical issue in the NFL.”

Duerson’s fall

Duerson understood football-related disability as well as anyone could without medical training. And he knew the horror stories all too well.

Part of a six-member panel that evaluated retired players’ disability claims, Duerson heard about the suicides and the substance abusers. He listened to stories about wild personality changes — violence, irritability, depression.

Duerson could sense himself unraveling in similar ways. At first, he made offhand comments about his brain, expressing concern over symptoms he already felt and fear of how they might progress. His children never knew about those worries. “He was a very prideful man,” says Tregg Duerson, who had never heard of CTE before his father died. “He would not have had that conversation with me.”

But unmistakable changes in personality and judgment altered the course of Duerson’s life. The patient man and prudent executive his family knew began to lash out in profane explosions and make bad business decisions that led Duerson Foods into financial peril. “He always had a very strong temper,” Tregg Duerson says, but in retrospect, he can see how the disease intensified that trait. “I think toward the end of his life, his temper was more quick — he was easily agitated.”

Duerson’s personal problems splashed into the newspapers in 2005, when he was arrested after pushing Alicia against a wall at the Morris Inn on the University campus. He pleaded no contest, resigned from the Notre Dame board, and soon he and his wife were divorced. Everything seemed to be falling apart because his personality had changed in cataclysmic ways that he feared with chilling prescience.

Mental collapse

In December 2009 something changed. Medication that had controlled Peter Grant’s mental illness for more than two decades stopped working. He became lethargic and withdrawn. Depressed.

Grant’s doctors adjusted the dosages, to no avail, and searched in vain to explain alarming mood changes. Home for Christmas that December, when her father’s new symptoms surfaced, Katie Grant thought he was preoccupied with work. When he visited Notre Dame two months later for Junior Parents Weekend, she recognized the depth of his depression.

His usual enthusiasm for a trip to South Bend vanished. “He just sat in the hotel room, didn’t want to do anything, didn’t even want to walk around campus,” Katie says. “It was a 180-degree transformation from anything I had ever seen.”

Through the summer and into the fall of 2010, it got worse, still without explanation. He had manic episodes — not sleeping, running around, talking incoherently. “Really sort of out of his mind,” Katie says. One episode in October left him hospitalized for two weeks. After his release, he remained unstable. Alternately manic and depressed, Grant would claim to be feeling all right on his better days, “but it was a lot worse than he was letting us know.”

There was no violence or anger, just withdrawal and forgetfulness. A dinner conversation would disappear in the fog of his mind, and when the subject came up again a day or two later, he would be upset that he hadn’t been told about it before.

That change was especially jarring for Grant’s family, who counted his intelligence and sharp attentiveness among his most notable characteristics. He was always on top of things. The difference could not have been lost on Grant himself, either, and they imagine that the frustration of his prolonged mental descent took an untold toll.

“I definitely think he felt hopeless,” Katie says, “that he just wasn’t going to get better.”

Duerson felt the same way. His financial problems reached their nadir in 2010, when he filed for bankruptcy and Alicia sued to collect unpaid child support, seeking assets that included his NFL Man of the Year award. By then he lived in Sunny Isles Beach, Florida, a family vacation destination where he moved full-time. In retrospect, he might have moved there to retreat from life as he felt his ebbing. Duerson’s friend Ray Ellis told the Miami New Times, “He didn’t want to crumble in front of an audience.”

Legacy

On February 8, Peter Grant committed suicide. Nine days later, Dave Duerson shot himself in the chest, a report that reverberated around the country because of the reason he did it that way: to preserve his brain for CTE research.

Both the Grant and Duerson families donated the brains. Grant’s showed a mild level of CTE, Duerson’s much more advanced. Announcing the findings in Duerson’s case, the neuropathologist McKee displayed slides showing extensive damage to areas that affect “judgment, inhibition, impulse control, mood and memory.”

There’s solace in the CTE diagnosis for both families, insight into the torment that led Grant and Duerson to take their own lives. Beyond the emotional comfort, Stern says, their donations establish a legacy of medical evidence that transcends their own tragedies. Uncertainty still surrounds the disease. Players are left to wonder whether they will suffer a similar fate, or if hints hidden in the brains of previous victims will reduce the impact.

Jason Kelly, a former sports columnist for the South Bend Tribune, is an associate editor of the University of Chicago Magazine. His most recent book is Shelby’s Folly: Jack Dempsey, Doc Kearns, and the Shakedown of a Montana Boomtown. Email him at [email protected].

Eric Grigsby

Eric Clifford Grigsby, age 49 of Lenoir City, TN, passed away on Sunday, May 23, 2021, at the Loudon County Hospital in Lenoir City, TN. He was born August 9, 1971 in Harriman, TN. He was a loving, caring, Christian husband and son. He tried to help everyone he came into contact with.

Eric played offensive guard throughout his football career at Harriman High School and continued through his college career at Carson Newman College and then at Tennessee Technological University. While attending college he started his own business for 19 years known as “Grigsby Militaria.” After graduating college and continuing his business he started to realize something wasn’t right with his health. He needed help but didn’t know what kind of help. As time went on the last two years of his life, a doctor told him he had symptoms of what is known as CTE and he also had PTSD. Eric was put on medications that helped but didn’t cure the problems. After his death he became one of the Legacy Donors at the UNITE Brain Bank. He wanted to still be able to continue to help people.

Justin Hall

With memories of dad in tow, Jesuit football player bids touching farewell to the sport

Jesuit High Schools Jacob Hall has had numerous injuries that have sidelined him at the end of his high school football career. His father, Jesuit teacher and coach Justin Hall, suffered from chronic traumatic encephalopathy, or CTE, caused by concussions during his football career which including college at Notre Dame. The neurodegenerative disease culminated in his suicide four years ago. Moments before their game against Vista del Lago on Saturday, April 17, 2021, Jake shows a table that honors his father on campus at Jesuit High School in Carmichael. Xavier Mascareñas [email protected]

 

Jake Hall stops by the table most every day, to reflect, to wonder what was and what might have been.

The Jesuit High School senior will also look to the heavens and speak in spirit to the driving force in his life. It’s the silence of no response that pains Hall the most. The nameplate fixed to the campus structure is a memorial marker for his father Justin Hall, a beloved teacher and football coach at the school for nearly 20 years. He died in 2017.

Hall is closing in fast on graduation and the start of the rest of his life. It will be a journey that will no longer include the highs and rigors of his favorite sport. That adjustment is difficult to accept. Hall was deemed as Jesuit’s best player by Marauders coach Marlon Blanton, and one of the school’s top scholars with a 4.3 grade-point average. He is also perhaps Jesuit’s most courageously strong individual.

“What an incredible person Jake Hall is, just wow,” said Jesuit’s longtime football public address announcer, Tim Fleming.

“This season,” Hall said in soft tones, “has been the hardest, the most painful, but also in some ways the most rewarding. I know I’ll never play football again, but I know I have teammates and coaches who care.”

The spring football campaign started with the 6-foot, 170-pound Hall bounding into the mix with visions of touchdown receptions, crushing tackles on defense and playing small-college ball in Southern California. The season was marked by searing agony, of surgically repaired shoulders getting torn apart in a game against chief rival Christian Brothers. His screams on that cool March 26 night in Oak Park reverberated in a Christian Brothers stadium half full due to the pandemic.

On April 17, Hall was back in uniform, incredibly, but he was a shell of his playing self. He caught the ball on the first play from scrimmage against Vista del Lago on the Marauders’ home turf and hustled out of bounds. He had to get out of harm’s way, his shoulders too battered to do much more. The play was by design. Coaches from both sides agreed to this move of sportsmanship and closure. Some two hours later, the contest ended with Hall taking a knee for the Marauders in victory formation to cap a 56-42 triumph. He was embraced by coaches and teammates, and later family, a memorable Senior Day if there ever was one.

Hall said this all comforted him, a good thing, because he cannot escape the hurt. His heart hurts. His surgically repaired shoulders hurt. His pride hurts. He visited that memorial table an hour before his football grand finale, wearing his familiar bright red No. 29 jersey, relieved that his body has waved the white flag, but saddened also that he cannot continue his father’s college legacy.

“I’m honored, touched, and proud that my dad had that sort of impact on people, and that people miss him, because I sure know that I do,” Hall said, sitting at that table. “I think about him every day, at every game, on every play. He’s the reason I love this game. He continues to give me strength. Dad went through his own injuries and pain, and it was something years later that he really struggled with. That’s the saddest part. We couldn’t help him or save him.”

Losing a coach/father/mentor

Coach Hall died by suicide on Nov. 27, 2017, shortly after coaching his oldest son in junior varsity football. Jake Hall believes his ailing father held on long enough to be able to coach him before he lost his will to live.

Coach Hall helped anchor two state championship teams in high school in football-mad Texas and grew into a mountain of a man at 6-foot-5 and nearly 300 pounds. He met Jen at Notre Dame and they married after relocating to Sacramento. She worked in the football office, handwriting letters to recruits.

Coach Hall told Jen before his death that he was worried about his own behavior, his irrational thinking. Their final six months together were not easy. He was emotional when he told her, “I don’t know what’s wrong with me.” He feared he was slowed by countless football practice and game collisions — concussions — as a Notre Dame lineman, a run that included the 1988 national championship under coach Lou Holtz.

Coach Hall told Jen he wanted to have his brain studied after he died at Boston University for Chronic Traumatic Encephalopathy, a degenerative brain disease found in athletes with repeated blows to the head. Coach Hall lived long enough to see his son earn team MVP honors on the junior varsity. He was found days later in the family garage, before Hall and his two younger siblings, Caleb and Abby, got home from school.

As traumatic as it was, Jen said it would have been a great deal worse had the kids found him first.

“We learned that Justin had Stage 3 CTE, really bad, and the fact that Justin was even functioning at all was amazing,” Jen Hall said. “I was in Seattle for a work trip when I got a call from Jesuit that Justin hadn’t come to school for work. I knew something was terribly wrong. At that moment, you know life is changing for our family, and you shift into survival mode: get to the kids, take care of them, hug them, love them — and do the best to explain it to them.”

She paused and added, “Jake as the oldest has been amazing. He’s handled it so well, as have his siblings. Proud of all of them. Jake has been outspoken about mental health, and we wonder and wish his dad had done things differently. But his brain was damaged. It’s frustrating and it hurts because we want things to be fixed.”

Jen Hall speaks openly about CTE. She doesn’t avoid the topic with family or friends because she understands the CTE toll families.

“We don’t know how to fix CTE without not playing sports at all, but we know what leads to it — blows to the head,” she said. “CTE hurts more than just the player. It hurts everyone who knows and loves that player.”

Letting him play

Jen was worried about Jake playing football. Concussions happen in this sport, certainly, and her son never played cautiously or in slow motion. He was a full-bore. player His father coached him to compete like that.

Imagine, then, Jen’s anguish when she watched her son writhe in pain against Christian Brothers. He landed awkwardly on his left shoulder, and the force tore through seven titanium anchors that held the shoulder together from previous injuries. As Jen stood stunned in the stands, hands on her face and her eyes welling with tears, she was most moved by teammates and coaches rushing to console and comfort her boy. She also didn’t want to be the sort of mom to scale the fence to rush to his aid.

“It was the most painful moment of my life, because it made me think of my dad, that loss, not having him when I needed him, and then knowing I was badly hurt,” Jake Hall said. “I was screaming because I knew football was over for me, that it was finally over. It all hit me at once. My shoulder had already been dislocated 15 times in high school. Just too much. It just can’t handle it any more of this game. My body was telling me to give it up, and that’s hard because you want to play forever.”

Hall caught his breath and added, “I was lying there on that field, my mind a blur. I’m thinking of what my dad might say to me, and then coach Blanton grabs my head, looks me in the eye and tells me, ‘It’s OK!’ That was a special moment. He was right. It was going to be OK. I needed to hear that. All things considered, I was OK.”

Jen views football differently now.

“I used to watch football for fun,” she said. “Now I watch to make sure everyone is standing up after plays. That’s the evolution of a football mom. When Jake went down against Christian Brothers, it became surreal. Oh, he’s not hurt. Then you realize it’s your son, and you hear him in horrible agony, and you know he’s there playing for his dad. It wasn’t just a game. His career was ending. It was surreal and sad.”

The return

With the blessing of his family doctor and his mother and coaches, Hall talked his way back into playing one final set of downs, to exit the sport on his terms. No tackling, no blocking allowed.

Jen watched from the bleachers, as she always has. This time, the tears were for the end of a playing era. She said she was at peace knowing her son was able to walk away from the sport before it dictated the terms. Blanton was emotional in talking about it.

“Jake’s a Marauder through and through,” he said. “He means a lot to the school of Jesuit. He’s more than a football player. We wanted to honor him any way that we could in this final game.”

Jen Hall said in her home, her three kids talk openly about their father. They don’t hide any sense of shame. Brain trauma happens, and suicides happen, sadly.

“I never wanted to pretend that their dad didn’t exist,” Jen said. “Sometimes, suicide is so painful to talk about, to deal with it. We let it out. We talk about it in our house.”

She added, “There was a lot of good about Justin. I was always so proud of him as a coach, for making such a difference for so many kids.”

After a moment, she added on any perception that her husband was selfish in taking his own life, “When someone has that sort of brain damage, they’re not in their right mind and their brain is simply not functioning properly. For anyone to judge a man like Justin for what he went through and did is highly inappropriate. I’m no mom of the year winner, but I do my best, and they’re thriving, happy kids. And we’ve learned a lot, that life really is a journey and it’s how you handle things.”

Making dad proud

Jen said she was touched members of Notre Dame’s 1988 title team attended Justin’s funeral services in 2017. Players hugged her and comforted her and the kids. Younger son Caleb is a 15-year-old freshman who wore his father’s old No. 73 this spring season. He is a large kid at 6-foot-4, following in his father’s size. Jen will not prevent Caleb from playing in the trenches, never mind the dangers. Older brother Hall is writing a research paper for school on CTE. He said the rewards of football still outweigh the pain of the sport.

“You have brothers and memories to last a lifetime,” Hall said. “Football is about life, and I’ve had a good one.”

He added, “We know that football is much safer than it’s ever been with concussions. My brother knows this. I tell him to be aggressive in football but to be smart and safe. It’s OK to leave the game if you feel like you’ve taken a shot to the head, or to avoid someone going for your head. That doesn’t make you a coward. It makes you safe and smart. I’m proud of him. Dad would be proud of him.”

Hall said the table bearing his father’s name was a surprise donation from his best friend, Ronan Brothers, through an Eagle Scout project. Hall recalled a moving conversation with his father, weeks before his death.

“He sat me down and told me that if anything were to ever happen to him, that I needed to take care of mom and the younger siblings, to be there for them, to be strong for them and for me,” Hall said. “I thought maybe he was talking about if he were in a car accident or something. I didn’t understand the depth and meaning of what he was saying, but I do now. I’m grateful for the time we had with dad, our special bond, and I will always be inspired to do the best, to be the best I can be, and I will. I’ll make him proud.”

 

Ken Haller

I’ll begin by saying that on October 13, 2008, I lost the first man I ever loved, my dad, William Haller. Less than three months prior on June 25, I also lost another man I loved with all my heart, my brother, Ken Haller. Needless to say, I wish I could go back in time, knowing all that I know now. My dad and brother were both diagnosed with ALS, but unlike my father and most ALS patients, my brother’s mind deteriorated quickly, as if he had some sort of dementia. We later discovered that Kenny also had chronic traumatic encephalopathy (CTE).

Let me start from the beginning…

Kenny was the third born in our family, after my two sisters and two years before me, and since he was my dad’s first and only son, their bond was very strong. One could never live here on earth without the other. I tell myself that is the reason why their lives ended within three months of each other. As a toddler, Kenny had so much energy and had no fear, so as soon as he was old enough, my dad signed him up to play football. I’m sure my mom was delighted, since he needed an outlet for all of the energy he had. He played football from eight years old through his college years as a tight end. By the time he was a senior in high school, Kenny was 6’4”, built, extremely attractive, and the life of the party. He always had a sparkle in his eyes and loved life. Kenny had friends of all kinds, but his best friend was my dad. They spent as much time together as possible and truly enjoyed each other’s company.

I can’t tell you how many concussions my brother must have had throughout his football years. At that time a player was expected to get right back in the game after they had their “bell rung.” It was always about the win and, in my brother’s senior year of high school, the team won the conference and we were all so proud. After college, Kenny had a career, got married and had two beautiful daughters. As time went on, his personality changed and when we look back now as a family, there were signs that something wasn’t quite right beginning in the year 2000, eight years before he died. He would act impulsively, make inappropriate remarks and poor choices. As time went by, these actions happened more often than not. Eventually, Kenny could not keep a job, his marriage deteriorated then fell apart, and he had to move into an apartment on his own. We thought this was best, since the only thing he focused on and wanted to do was see his daughters, and we all lived an hour away. It was about this time that my dad starting slurring his speech and exhibiting signs of what we later found out was ALS, most likely triggered by the stress of what was happening to Kenny, although we still didn’t know what was wrong with him.

A family member said that he was sure Kenny was doing drugs and at first I thought—well, maybe—but then I had that gut feeling again and it told me that it wasn’t drugs. My sister, Diane, took him to get drug tested and the results were negative. Diane was about a year and a half older than Kenny, and I have to say, she was his guardian angel. Since she was home raising four kids and did not work outside of her home, she had time while the kids were at school to take him to his doctor appointments, manage his prescriptions, do his grocery shopping, clean his apartment, etc. She was Kenny’s advocate and I really don’t know what our family would’ve ever done without her. Of course, my parents would also go with her as much as possible to help, because Kenny could be a handful. As time went on, my dad’s ALS got worse and Diane not only took care of every aspect of Kenny’s life, she also went to every one of my dad’s doctor appointments to take notes and advocate for him as well.

Over the next couple of months, the doctors tried to figure out what was wrong with Kenny. Was it Pick’s Disease, or some other kind of dementia? Nobody really knew, but after Kenny’s muscles in his arms started twitching uncontrollably, the doctor diagnosed him with ALS. I read everything I could about ALS and it never made sense that his mind was affected. Unfortunately, his memory got so bad that 10 minutes after visiting his daughters at their house on any given day, he would forget and drive right back again. He would also show up at their school just to see them.

I’ll never forget the day my sister received a call from the police who said that Kenny showed up at the school and if he shows up again, he will be arrested. My sister and parents immediately brought him to the psychiatric part of the hospital’s emergency department and by the time I showed up after work, he was sitting in a padded room. Unfortunately, the staff was left no choice but to put him there since he went to the nurse’s station, collected his bag of clothes and shoes, and tried to leave the hospital without permission. It was so heartbreaking to see him in this padded room, he seemed so alone, just looking around with no understanding of where he was and why he was there. They allowed me to go into the room with him for a short time and all I could do was put my arm around him and lean on my big brother’s shoulder, trying not to cry. It made no sense to ask him what happened, since I already knew his answer. He just wanted to see his girls—that was always his answer.

Kenny with his daughters Morgan and Cassidy.

It was at that moment that my sister, parents, and I made the decision that he needed to live in a nursing home in that area, so his daughters could visit him frequently. He no longer could live on his own. Thankfully, Diane, along with my mom, found Kenny a good nursing home. Of course, after moving into it, he was so determined to see his daughters that he got out through the window. They found him walking about a mile away. When asked why he left, it was the same answer, “I just want to see my girls.” After that, the nursing home staff removed the crank handles of not only the windows in his room, but practically every window on the floor. Even with his mind deteriorating and his muscles going to waste, he still won over the hearts of the nurses. I’m not surprised. He had a way about him.

On my visits, I would bring my little blow-up tub and try to fit his size 14 foot in it so I could give him a pedicure while Diane cut his hair. By the way, he didn’t like to wear shoes, even when he went outside in the locked courtyard, so just imagine what his feet looked like. I think I had to change the water a few times, but it’s ok, anything for my big brother. It was during those times that I’d notice some of his old personality showing up when he would put his foot in my face and smirk, something he rarely did anymore. By this time, Kenny didn’t talk much, never smiled, only wanted to eat candy, nothing nutritious, and watch Sponge Bob on TV. One of the saddest moments was when I realized looking at his eyes that the light had gone out, there was no more sparkle. It was just a blank stare. He was just a shell. The Kenny that I knew all my life was gone and it was so hard to believe. On June 25, 2008, my brother passed away at 44 years old and on October 13, 2008, my dad passed away at 72 years old.

We were told that Kenny died from complications of having ALS, but I always had a gut feeling that it was something more. It was such a mystery. As a family, we decided to donate my dad’s and Kenny’s organs for ALS research. Approximately four years later, I was flipping through the channels one weekend morning and came across Chris Nowinski, the co-founder and CEO of the Concussion Legacy Foundation, on ESPN discussing a disease that I’ve never heard of before called CTE. I swear I was channeling my brother because I pretty much never watched ESPN, nor would I stop at that channel for any reason. As Chris was talking about CTE symptoms and causes, my mouth dropped to the floor and I just kept saying loudly, “That’s it! He’s describing Kenny.” Immediately, I called Diane and told her to put on ESPN and after watching, she agreed that he was describing my brother’s symptoms. Fortunately, I was able to contact Chris Nowinski, who put me in touch with Dr. Ann McKee, the director of the UNITE Brain Bank, and Lisa McHale, Director of Legacy Family Relations at the Concussion Legacy Foundation.

It took about two years, but we were finally able to convince the ALS research group who had my dad’s and brother’s organs to send Dr. McKee what she needed in order to conduct the research and hopefully find some answers. Two months later, we had the last of many conference calls with the Boston University research group and Dr. McKee confirmed that although Kenny did have ALS, it was secondary to Chronic Traumatic Encephalopathy (CTE). Mystery solved! Although my dad played basketball and did receive one concussion during his childhood, he did not have any signs of CTE and Dr. McKee confirmed that complications from ALS caused his death.

In researching everything I can regarding CTE, I’m convinced that, had my brother not played football, especially at a such young age, he may still be alive today to see his daughters grow into beautiful adults and one day walk them down the aisle when they get married, something that I know he longed for. So, then I ask myself, do I think Kenny would have played football had he known the risks? If he had known that his future would be would be giving up seeing his daughters, parents, sisters, and friends again? The answer to this question is “NO!” How do I know that? I know that because that’s how well I knew my brother. He was only two years older and since he and I were the youngest, we spent much time together and were a lot alike. There are so many more stories I could tell about Kenny and how he went from this proud, tall, muscular, all-star with a personality so pragmatic and fun to someone who didn’t care about hygiene or conversation and had no more light in his eyes, but I will save these stories for the book I’m going to write someday. Kenny’s story is certainly one that could be made into a movie.

As I said in the beginning of my story, I wish I could go back in time, knowing what I know now, because things would’ve made more sense. I will spend the rest of my life raising awareness about CTE and telling my brother’s story in hopes that it may save even one life and one family’s heartache. My advice to parents is to please reconsider if you’ve decided to enroll your child in collision sports like tackle football. Take it from me and my family, you never, ever want to watch your child’s mind deteriorate like we did. If you choose to ignore all of the evidence out there regarding CTE, please wait until they’re older and allow them to play collision sports only if it is their decision.

Not a day goes by that my family and I don’t think of my dad and Kenny, or that Mom doesn’t cry and we wish they were still here with us, but knowing they are together again on the other side gives us peace.

Our family is grateful for Dr. Ann McKee and the staff at the UNITE Brain Bank for all of their hard work and help in finding the true cause of my brother’s death.

Evan Hansen

Evan Hansen was an all-conference linebacker and captain for Wabash College football. He worked hard to get good grades. He had a girlfriend. He was well-connected on campus. He was fluent in Spanish and after Wabash planned to work in healthcare in Latinx communities. It would be easy to forgive someone for believing Evan Hansen’s life was perfect.

But Hansen’s father Chuck has a different word to describe the final months of his son’s life.

“It was like an imperfect storm,” Chuck said.

Chuck and Mary Hansen first noticed their son’s athletic prowess when Evan confidently and stably walked across their living room. He soon became a crib escape artist, foreshadowing a life full of adventure.

Evan’s athletic exploits easily translated from the nursery to the field. In youth soccer, Evan’s advanced coordination and speed often led him to enter halftime with more than 10 goals to his name.

He started playing tackle football when he was in the third grade. His natural gifts and fearlessness immediately earned him a role as a do-everything running back and linebacker.

Mary says Evan was “all in” with whatever he did. Tackling was no exception. The family rarely saw a ballcarrier push Evan back for extra yards after first contact. Evan suffered one diagnosed concussion at Guerin Catholic High School when he took a knee to the helmet that left him unconscious on the field for upwards of ten minutes. Outside of the missed time from the concussion, Evan rarely missed a snap.

Many mornings after games, Evan clocked in to work the counter for Joe’s Butcher Shop in Carmel. With an enormous grin on his face, he greeted customers by first name as they entered the store.

“He was humble and unassuming,” Chuck said. “You would have no idea the night before he had 15 tackles and ran for 100 yards.”

Evan’s generosity and kindness weren’t reserved for customers. The book of Evan Hansen is full of stories of service to others.

Evan once finished football practice and rather than going home to rest, stayed at school to encourage a friend who was competing in their first cross country race. The friend finished last by several minutes but crossed the finish line to see Evan as animated as if they had won the Boston Marathon.

After graduating from Guerin in 2015, Evan received a scholarship to play football for Wabash College, a Division III powerhouse. Hansen arrived on campus intending to study Biology and Spanish and, as he told his parents, “light it up” in fall camp so he could earn playing time immediately.

His star shone bright almost immediately. He quickly catapulted up the Wabash depth chart and became the starting middle linebacker as a freshman in 2015. He recorded 67 tackles for the Little Giants on their run to the Division III quarterfinals.

“His tackling was how he got noticed right away,” Chuck said. “When he saw a hole, he knew someone has to fill it.”

Evan recorded 209 tackles in his first three seasons for Wabash. He was never diagnosed with a concussion in college. In hindsight, the Hansens believe Evan had regretfully mastered the art of “shaking it off.”

“He had mashed fingers, knee injuries, back injuries and all kinds of scratches and bruises,” Chuck said. “For him to make a tackle and to feel a little dizzy or disoriented, I think he just figured that that was part of football.”

Evan was never at the top of his class by sheer knowledge alone; he had always been able to put in the work to achieve the grades he wanted. But after the fall term in 2017, Evan told Mary he was struggling emotionally and with his schoolwork.

“’I’m depressed and I have no idea why I’m feeling this way,’” Mary remembers Evan saying.

Evan’s admission shocked his family and those close to him. The Hansens responded by taking Evan to doctors who prescribed different therapies and medications to manage Evan’s depression.

Temporary relief came when Evan went abroad to Spain for his spring term in 2018. He thrived in Wabash’s pass/fail grading system for students abroad. His days were spent traveling and honing his Spanish. Mary joined Evan at one point in Europe and saw her son rejuvenated.

“I think our concerns kind of disappeared,” Mary said. “We thought he just needed a change of scenery and a little bit of pep in his step to finish his senior year.”

Evan returned to the U.S. and completed an internship as a translator for Mansfield-Kaseman Health Clinic near Washington D.C. before returning to Wabash. He was regularly seeing a therapist. He was on medication. From the outside, his mental health seemed managed.

“But anytime you asked him about his treatments, the answer was, ‘I don’t think it’s helping,’” Mary said.

With Evan as a captain, Wabash opened their 2018 season with a win at Hiram College on September 1. They came home for Senior Day on September 8, winning 16-13 over University of Wisconsin – Stevens Point. Evan’s grandparents were in attendance. The family went out to a celebratory dinner afterwards. Evan went to a fraternity party that night.

The next morning, Evan attended Wabash coaches meetings and seemed like his normal self. It was the calm before the imperfect storm.

On Monday, September 10, 2018, Evan Hansen died by suicide. He was 21 years old.

Chuck and Mary Hansen sat at the cemetery in the days following Evan’s death when Chuck received a Facebook message from CLF’s co-founder and CEO Chris Nowinski, Ph.D. Nowinski asked the Hansens if they would donate Evan’s brain for CTE research at the UNITE Brain Bank. They obliged.

While the family awaited the diagnosis from the Brain Bank, the Hansens poured themselves into research about CTE. They learned the symptoms of the degenerative brain disease could affect a patient’s mood, behavior, and cognition. They learned repetitive, nonconcussive impacts, not concussions, are the driving force behind CTE. And they learned how CLF’s Flag Football Under 14 campaign aims to prevent CTE by avoiding the nonconcussive impacts from youth tackle football before the brain is fully developed.

In fall 2019, Brain Bank researchers told the Hansens their son was diagnosed with Stage 1 (of 4) CTE.

The news confirmed the Hansens’ suspicions. Evan had played 14 years of tackle football prior to his death, 10 of which he played on both sides of the ball. His mood and mental health had declined over the last year of his life, as had his ability to focus and excel academically.

Chuck’s storm analogy describes the confluence of factors surrounding Evan’s suicide. Evan had CTE, which could have contributed to his depression and impulsivity. But he was also on medications that may have affected his cognition. Before his death, Evan was scheduled to have bloodwork done as a first step towards finding depression medications that were more tailored for his genetic profile.

Chuck and Mary have been told by many how Evan had world-changing potential before his death. They can also close their eyes and imagine Evan as a loving husband, an amazing father, a championship coach, or a community leader someday. But they choose to focus on the future.

“We’re trying to help other people learn the dangers of potential brain injuries,” Chuck said. “We want to shed light on all the things we didn’t know about.”

Since Evan’s death, Chuck and Mary have been fundraising and raising awareness for mental health, concussion, and CTE. Among many ventures in Evan’s name, they started an internship at the Merciful H.E.L.P. Center in Carmel where Evan managed the Tools for School program as a summer intern. And in honor of Evan’s #32 at Wabash, they will be donating $3,200 each year to CLF. Their gifts will go towards CTE research and some of our programs that could have made a difference in Evan’s life: the CLF HelpLine, Flag Football Under 14, and Team Up Against Concussions.

Losing someone who was as outwardly strong as Evan sparked a conversation about mental health at Wabash, in Carmel, and elsewhere. For football players and other youth athletes at risk for concussion and CTE, the Hansens think the conversation needs to be more a nuanced one.

“I try to tell people that if they are finding out their child is depressed,” Mary said. “Just make sure that whenever they talk with professionals, they tell them that they played tackle football and for how many years. That needs to be part of the discussion.”

Through his story, Evan continues to help others. A friend of the Hansens wrote to them saying how because of Evan’s tragedy, their grandson was going to stick with baseball for now.