On the afternoon of June 7, 2012, Fred Pyka walked into the backyard of his home in Hixon, Wisconsin, to grab a tool from his shed. Inside, he found the body of his stepson, Joseph Chernach, who’d hanged himself the night before. Joseph, once a star athlete and well-known comedy buff, killed himself a month shy of his 26th birthday.
An hour later, his older brother, Tyler, answered a phone call from his mother, Debbie Pyka. She was screaming into the receiver. Tyler immediately told her, “Mom, I think you should have his brain tested.”
In September 2013, more than a year after Joseph’s death, Debbie Pyka received the news she’d steeled herself to hear. Joseph’s brain showed an advanced case of CTE, or chronic traumatic encephalopathy, a degenerative brain disease now commonly associated with former NFL players.
But Joseph Chernach never played in the NFL. He never played football at Central Michigan University, where he was studying to become a physical therapist. Joseph played football from the fifth grade to the time he graduated high school in Crystal Falls, Michigan. Of the 19 brains of people who played football in their youth and high school years — never at a collegiate or professional level — to be tested by the CTE unit at Boston University, Joseph Chernach is one of only four to test positive. Brains can only be tested for CTE post-mortem.
Joseph’s brain was tested by Dr. Ann McKee, one of four neurologists at Boston University who are leading the research about CTE. From Dr. McKee’s report:
“There were very severe changes in the brainstem, with numerous tau neurofibrillary tangles in the locus coeruleus, an area of the brain thought to play a role in mood regulation and depression. The changes in the frontal lobes and locus coeruleus were the most severe I’ve seen in a person this age. These findings indicate Stage II, possibly Stage III (with Stage IV being most severe) CTE and are particularly noteworthy, given the young age of the subject.”
In 1997, Debbie Pyka’s father got sick, prompting her to move her family from Arcadia, Wisconsin, to Hixon, Wisconsin, two hours northeast. Debbie still lives in Hixon, with Fred Pyka, her husband of 19 years.
Debbie’s two eldest sons, Tyler, who was 13, and Joseph, 11, decided to move to Michigan’s Upper Peninsula to live with their father, Jeffrey Chernach. A year later, their younger brother, Seth, followed his brothers the 250 miles to Michigan.
The Chernach boys, who grew up avid Green Bay Packers fans, began playing football with Pop Warner, the largest youth football organization in the United States. Joseph was in fifth grade, Tyler in seventh. As is common in youth football, the boys played both offensive and defensive positions. Debbie and Jeffrey never had a conversation about the boys playing football — it was just something that young, energetic boys do in towns small and large across America. Debbie said she expected the boys to suffer broken bones, but the risk of brain disease never crossed her mind.
At Forest Park High, the Chernach boys were coached by longtime coach Bill Santilli, a close family friend who retired from the school earlier this year. Jeffrey and Bill sat next to each other at their jobs at the Michigan Department of Transportation for 25 years, and his son was Joseph’s best friend. Forest Park High is a small school, and the boys graduated in classes of 40 to 50 students. Again, as is common in small schools, the Chernach boys played both offense and defense for the Trojans. In 48 minutes of game time, high school players are likely to be on the field for every snap, barring an injury. They jump around from position to position, but Joseph was favored as a running back on offense and a linebacker on defense.
In addition to being a gifted athlete, Joseph was known for his love of comedy films. It was the early 2000s, and he could spit out a bit from a Will Ferrell film on command. Outgoing and charismatic, he was beloved by teachers and other adults, and was looked up to by his two younger siblings.
The Forest Park Trojans enjoyed great success during the Chernach boys’ years at the school. All three made trips to the state playoffs. Seth still ranks high on Michigan High School Athletic Association’s all-time leader boards for points scored, and touchdowns scored, both in total and by rushing. Joseph was named team MVP once, and Athlete of the Year for his accumulated accomplishments in football, pole vaulting, and wrestling. With all the success her middle son earned during his time in high school, Debbie said she was “always impressed that he never grew conceited.”
After Joseph died, Debbie posted on his Facebook wall, asking his friends if they remembered him ever being diagnosed with a concussion. “No one could think of anything. Joseph never complained about head injuries,” she said.
According to Christopher Nowinski, the founder and director of Sports Legacy Institute, the brain bank that serves as a liaison between families and the CTE unit at Boston University, researchers know CTE comes as a result of total brain trauma exposure, though the disease has never been diagnosed in someone whose brain has not shown evidence of significant brain trauma. The inconsistency in how concussions are diagnosed makes it difficult to confirm, but there’s a suspected correlation between cumulative, non-concussive injuries and eventual neurological injuries and diseases.
Seth has a similar story about his own medical history: “I was never diagnosed with a concussion either, but now I know I had many of them.”
Public awareness of CTE has grown significantly following Alan Schwarz's reporting in The New York Times, the book League of Denial: The NFL, Concussions, and the Battle for Truth, and the adapted PBS Frontline documentary bearing the same name. The NFL is currently battling a series of lawsuits, in which former players are fighting for financial support from the league to help cover medical costs for potential and existing ailments that the plaintiffs say came as a result of years of concussions.
When Sports Legacy Institute was founded in 2007, most of their brain donations came as a result of their own outreach. Now Nowinski estimates “two-thirds” of families initiate contact. Once a donation is agreed upon, SLI coordinates with a local hospital or funeral home to perform the autopsy and send the brain samples to Boston. (Joseph’s autopsy was done in Eau Claire, Wisconsin.) After the samples are obtained, the family is contacted by Lisa McHale, the organization’s director of family relations. Lisa’s husband, Tom McHale, was the second former NFL player to be diagnosed with CTE. When SLI passes on the brain sample to Boston University’s CTE unit, the doctor is unaware of the patient’s medical history. It is SLI who handles the gathering of family, medical, and personal history, currently through an online questionnaire and a phone call.
At present, there is no method of diagnosing CTE in a person who is alive, but Nowinski told BuzzFeed News that he believes researchers are “close.” Though Alzheimer's is diagnosed by looking at changes in behavior, as are many cognitive diseases, there’s no way to diagnose CTE in a clinical way.
Lisa McHale said there is a need to provide counseling for those suspected to have CTE and to develop support systems for families.
“There are similar concerns for families of those with dementia, but the victims of dementia are often 70 to 90 years old, and they’re very frail and weak,” she said. “CTE often takes hold in a person’s thirties or forties, and many of these guys are big, strong, and intimidating people.”
Debbie first took notice of her son’s changing personality in 2009, when Joseph came home from Michigan for Christmas. Seth, then his roommate, had noticed he’d stopped going to his classes at Central Michigan University.
Seth watched his brother’s personality “do a 180” in the last three years of his life.
Joseph grew more depressed, more angry, but never violent, his family said. He began to adopt a more nocturnal schedule, which Debbie said she suspects was because he was too ashamed to see other people. After leaving school in Central Michigan, Joseph bounced around between Michigan and Wisconsin, living with both sets of parents, his brothers, grandparents, and a cousin. In the last months of his life, Joseph lived with Debbie, his half sister Nicole, and his stepfather Fred in Hixon, where he found work as a custodian for the local school district. Once a star student and athlete, Joseph told his mother he felt “worthless.”
As Joseph’s depression worsened, his family felt more and more helpless. Seth believes Joseph knew there was something wrong with him, but there was no way to determine what it might be.
“It was the most severe depression I’ve ever seen in anyone, and I’m a hospice nurse,” Debbie said. “That’s why I feel like I failed him. You’re his mother, you feel like you should be able to help and protect him. I tried to be patient with him. I never got angry with him — I never will be angry with him. I tried to be patient, but I felt like pulling my hair out. It was all in his thinking; this disease was eating away at his brain.”
Nicole, who is now 19, said that despite her brother’s changing personality, he never allowed himself to appear sad around her.
“I think just because I was his baby sister and he never wanted to show me he was sad,” she said. “As my big brother, he was very protective, and I remember once during my freshman year of high school, I told Joseph I had a boyfriend, and he said to bring him over so he could ‘put the fear in him.’”
Though Joseph tried to hide his worsening depression from his sister, his mother said she “lived in a panic” for the last two years of his life.
Nicole said that in the last years of his life, Joseph’s relationship with his stepfather, Fred, was “rocky.” The two would fight over Joseph’s inability to help himself, she said.
On June 6, 2012, Jeffrey Chernach called Seth and said, “Your brother got in another argument with your stepdad and your mom hasn’t heard from him.” Debbie and Nicole went out and drove around looking for him. Debbie said she called Joseph repeatedly, but he never answered.
Seth grew concerned. Joseph always called Seth when he was fighting with one of his parents, but this time he hadn’t heard from him.
“He’d leave the house and walk alone late at night, and he’d be the one to call, but he wouldn’t talk,” Seth said. Joseph just wanted somebody to be there for him, but he had nothing say. It was hard to have those calls come in.”
After the CTE diagnosis, Debbie was somewhat relieved to have an explanation for what was causing Joseph’s depression, although she said she was “devastated that he had to deal with this, and I can’t imagine what he was going through. It was heartbreaking, but I couldn’t do anything about it, and I probably will never understand what he was thinking because I’ve never been depressed.”
More than two years since Joseph’s death, his brothers Tyler and Seth said they are experiencing memory loss and seizures, which their mother fears could be indicative of CTE. Her growing concerns about the health of her sons have pushed her to begin researching the possibility of legal action.
At the end of November, a former high school quarterback brought a lawsuit against the Illinois High School Association. In it, he claims the IHSA did not have proper protocols to protect him from concussions, and that he's experiencing memory loss and migraines as a result. It's the first lawsuit of its kind.
Seth said that in 2013 he began experiencing seizures and his neurologist has yet to determine a solution. He says he’s experienced “250 mini seizures” and one major seizure, when he was training for a new job in July. He’s told his neurologist that he had what he believes to have been concussions in high school, and that he’s begun noticing some loss of memory.
Seth hasn’t had a seizure since the one in July, but still checks in with his neurologist periodically.
Tyler says he's also experiencing memory loss and has begun experiencing waves of depression. He admits he's more irritable and aggressive, but he says it's hard to tell if these changes are a result of playing football or if he's just "getting old and cranky."
Lisa McHale warns the families of those who have been found to have CTE not to be too quick to diagnose it in other loved ones who have played football. This is a major disadvantage of the lack of clinical diagnosis available for CTE.
A December report by Christopher Whitlow, an associate professor of radiology at Wake Forest University, shows that even one year of playing high school football without receiving a concussive injury can lead to “measurable brain changes.”
Debbie is frustrated that Pop Warner and high school athletic associations do not follow stricter safety measures, but her primary grievance is with the NFL. She finds it dangerous that the NFL has worked to suppress public understanding about concussions and football, especially while they have a partnership with Pop Warner.
From the moment Joseph’s brain samples were sent off to Boston University, Debbie began reading everything she could about the correlation between youth football and CTE. On her Facebook page, she posts news items about tragedies similar to her own — most recently, an MSN article about Kosta Karageorge, the Ohio State football player who was found dead of an apparent self-inflicted gunshot.
For the past two and a half years, Debbie has found it difficult to find anyone influential to hear her son’s story. She's written letters to politicians at local and national levels, but she said she not received any response.
Debbie hopes that eventually little kids will no longer play tackle football and that research on the effects of repetitive brain trauma can lead to better policies in youth, college, and professional football. She wishes she had known of these risks when her own children were young, and believes parents should at least be aware of stories like her son’s when making the decision to enroll their child in contact football.
Debbie worries about the parents of kids like her own and says, “This is what I’ve gotta do to get people to wake up. I have to do this for Joseph, my other kids, and for all the other kids and parents out there who don’t know what could happen to them.”
And she worries about the health of her other two sons.
“My kid is dead, and now I have reason to believe my other two kids are suffering. I cannot lose another kid. It will put me in the grave. It nearly did last time.”