by Vicki Mayk
Macknet and other teammates, who were eventually able to move past it, said it was more difficult for Justin, who had found Owen’s body. He remained deeply shaken when the Penn football team returned for fall practice.
“He definitely carried a burden with him that none of us can know the severity of,” Dave said. “I wish we could carry that burden. Justin, like Owen, is such a great guy. That memory that he carries—that he had to cut Owen down and perform CPR. I wish we could take that burden from him.”
Jake Peterson recalled that Justin switched numbers so he would no longer be in the same part of the locker room that he once shared with Owen. “I tried to talk to him some about life after death and this somehow being part of a plan, but Justin doesn’t have those beliefs. It was a very difficult time for him,” Jake said.
For Jake, an aggressive player, Owen’s CTE diagnosis was a wake-up call. “When Owen passed, that changed the conversation. It made people a little more aware. Here’s a young, healthy, great guy and he was never diagnosed with a concussion. And he could develop this,” Jake said. “I used my head as a weapon for seventeen years. They gave me a helmet, so I was protected and I would try to inflict as much damage as I could. I couldn’t do that anymore. If I hadn’t already started to develop [CTE], I was on a one-way track. It was only a matter of time.”
During his senior season at Penn, the fall after Owen died, Jake was occasionally troubled by suicidal thoughts that, in retrospect, he attributes to head trauma. “I was close to that ledge. I see what happened from Owen doing it,” Jake said. “Those thoughts weren’t me. I had no reason for that. I had an awesome life. Things were great. In hindsight, I’m able to identify emotions, the thoughts I was experiencing, as symptoms of brain trauma.”
That same season, the Quakers won their second consecutive All-Ivy title. The loss of Owen had heightened their resolve, and their intensity was reminiscent of their earliest days on the gridiron, when they played for the love of the game and their teammates.
“That was the closest team I’ve ever been on,” Jake said. “It was the most unified, the most close-knit. I think that was the biggest contributing factor. From seniors to freshmen, all of us were close. You don’t get that in a college program, with that many kids. That was saying a lot. I loved the team. The head coach and myself did not get along very well. Bagnoli and I had a volatile relationship. But I stayed because of the guys. Because we were close.”
Some friends rejected the idea that CTE caused or contributed to Owen’s death. Mike Fay insisted that the suicide was the reaction of someone who had never faced failure before. His friend—always top of the class and the star on the playing field—was struggling at school, Mike said. Noting that his older brother, Anthony, had labored for six years to make it through Wharton while playing football, he blamed academic pressure, not the sport, for Owen’s death.
“The best people in the world go to Wharton,” Mike said. “Going there, he met his match and his match was kicking his ass.”
He emphasized Owen never had a diagnosed concussion. “Can you get it without concussions?” he said, a note of challenge in his voice. “He never had concussions.”
CTE researchers, over time, would answer the question that Mike posed. In 2018, researchers led by Dr. Lee Goldstein, associate professor at Boston University School of Medicine and College of Engineering, published a study that showed that it was jarring impacts to the head known as subconcussive hits—not merely concussions—that were the precursors to CTE. The study, which took seven years, involved researchers from Boston University, Cleveland Clinic, Harvard Medical School, Lawrence Livermore National Laboratory, Ben-Gurion University of the Negev, and Oxford University.
The research first looked at the brains of deceased teens and young adults who recently had sustained mild head trauma, but who had died of other causes. Researchers found early evidence of brain damage consistent with CTE. It included the buildup of tau protein synonymous with the condition. In the second phase of their study, the researchers used laboratory mice in experiments that exposed them to head impacts like those in sports or military blast exposure. What they saw in the animals was early evidence of the damage associated with CTE. Even a small amount of trauma produced it.3
The research confirmed what Ann McKee and those at the Concussion Legacy Foundation believed: Owen’s was a landmark case, one that suggested that you didn’t need a concussion to cause the disease. Enduring more than a decade of jarring hits that started in childhood, his brain had moved in his skull like an amusement park bumper car. The game had left the muddy fingerprints of the disease indelibly on his brain.
CHAPTER 12
CHANGING THEIR MINDS
ANN MCKEE HAD SIGNED ON to do research at Boston University’s CTE Center, but as its director she was increasingly the public face of the issue of head trauma in football. A meticulous researcher who was used to presenting results to medical colleagues who recognized her acumen, McKee was at first unprepared for criticism that was based not on dispassionate science but on emotional or financial ties to a sport that was a central part of American culture. It was an especially difficult position for someone brought up as a football fan but trained as a scientist.
“I talk to people who respect me, who I consider very close friends, and then they finish the conversation, say what great work I’m doing, and then they’re promoting football,” McKee says. “It’s almost like we have a disconnect. . . . I mean, I notice it even in my family. My family gets it, but they don’t really get it. You know, that football could be very dangerous to your health.”
With each new case coming under her microscope, McKee knew that playing football was causing irreversible brain damage. As her research progressed, she was in constant demand with the news media, juggling interviews between clinical and research responsibilities. Some days would find her wondering aloud, as yet another journalist was ushered into her office, whether this was the reporter from Sports Illustrated or the person writing a book.
“I don’t think a lot about the public attention. I enjoy the interviews because I enjoy talking about the patients and their families and I enjoy talking about the work. . . . The work is fascinating to me so I enjoy talking about it,” she said. “I’m a teacher at heart, so I feel like instead of teaching medical students, I teach the public.”
McKee turned down few interviews or speaking requests, leading to a round-the-clock work schedule that left little time for sleep. Painting, still a passion in her off hours, is relegated to a few hours on the weekends. She packs her paints to take on business trips, but seldom gets to use them. Colleagues, receiving emails with a 4 a.m. time stamp, express concern about a schedule that leads to long days and longer nights.
Dr. Michael Alosco is an assistant professor of neurology at Boston University School of Medicine and a member of McKee’s team at the CTE Center, where he conducts clinical interviews with family members and other caregivers of deceased athletes whose brains have been donated to the center. McKee has mentored him since he first joined the university as a postdoctoral fellow. Although he praises her for being generous with her time, he also has urged her to slow down. “She’ll travel across the country and even the world to do these smaller scale events and conferences. She doesn’t say no to anything. She says yes to everything. Even a fifteen- or twenty-person conference. I’ll say, ‘Ann, you don’t have to do that,’” Alosco says.
But the speaking and interview requests are still secondary compared to another aspect of her job: speaking with the families of deceased athletes whose brains were analyzed in her lab. McKee is as committed to the calls with the families as she is to her research. Without the brains, there is no research.
After she and her research team at the Boston University CTE Center finish analyzing a brain, they review their findings in a phone call with the family of the deceased athlete. In 2010, one of the phone calls was with Kathy Brearley and Tom Thomas, telling them that Owen had C
TE.
The families always remember the phone call.
It can provide the answer to the question of why family members saw personality changes, memory loss, angry outbursts, problems with impulse control, and more in their loved one. It explains why the person they lost seemed to disappear, even before he died.
The number of confirmed CTE cases was in the twenties at the time of Owen’s death. As the years went by and the number of brains donated to research moved from double to triple digits, some of McKee’s colleagues questioned the hours she spends on the phone with families. It takes time away from her research.
“I think it’s very important. I feel very honored that they’ve donated the brain,” McKee says. “I feel very privileged that I’m allowed this insight into their life that others may not have. . . . I consider it very private information, very—I don’t have any other words for it. It’s private. It’s personal.”
She likes being able to answer the family’s questions—except for the inevitable question that she can’t answer.
“Why did he commit suicide?”
“You know, that’s the number one [question] that I don’t have an answer for,” she says, with a touch of sadness in her voice. Although she can confirm that brain trauma can cause depression and impulsivity, the exact sequence of events leading to the act of suicide is complex, unique to each individual’s circumstances.
The phone calls are exhausting. They can go on for an hour or more. McKee stays on the line as long as the family needs to talk, answering questions and listening. “It almost turns into a mini therapy session,” Michael Alosco says.
The families remember the way that McKee made them feel. Lisa McHale, the wife of Tom McHale, whose groundbreaking case was announced at the 2009 Super Bowl, put it simply: “She gave me back my Prince Charming.” McKee had offered the explanation for her late husband’s changed behavior.1
“Maybe what’s unexpected with families is her level of empathy,” says Chris Nowinski. “She cares, and you can tell. And she feels the pain of families, and you can tell.”
Years into the research, after dozens of brains have been analyzed, Nowinski says McKee has exceeded any expectations he had when he hired her to direct the CTE Center. “She sympathizes and empathizes with her donors. And that always comes out in her interviews, and it comes out in private conversations we have with families. And they can tell she’s committed.”
Families’ appreciation for McKee was apparent when Nowinski’s Concussion Legacy Foundation honored her in 2011 with its Impact Award for research showing a link between CTE and amyotrophic lateral sclerosis—also known as ALS, or Lou Gehrig’s disease. As McKee made her way to the podium to receive the award, people lined up to hug her.2
The 2011 recognition, while gratifying, did not reflect the opinions of some in the larger research community. When the paper linking the two conditions was first published in 2010 in the Journal of Neuropathology and Experimental Neurology, McKee says, “We got a lot of pushback on that.”
It’s the kind of reaction to her work that McKee would see time and again during the decade after Owen Thomas’s death. Sometimes the words she chooses to describe the negative reactions from the scientific and sports communities are more colorful than “pushback.”
“People really think I’m off my rocker,” she says in a moment of frustration, straightforward in characterizing the many criticisms of her work. A moment later, she tempers it. “But they’re changing their minds.”
Changing their minds would come with the slow unfolding of more and more CTE research from McKee and her colleagues. Their first challenge was getting the medical and research communities to agree that CTE was a disease, distinct from other neurodegenerative conditions like Alzheimer’s disease. McKee never wavered in her confidence about her findings.
“At the time of Owen Thomas, I knew this was a disease. I knew this was a problem, and then we just kept getting more and more cases. . . . And there was a time period where I was certainly saying to myself, ‘Just wait. Just wait. OK, you don’t believe me now, but you will. It’s just a matter of time,’” she remembers. “I’m hearing all this opposition, I’m hearing all the criticisms, but you’re not sitting where I’m sitting. I’m sitting in a strange spot with a different perspective and this disease isn’t going away and this disease is not rare.”
There would be milestones in the research that answered criticisms from those who could not accept that football caused a distinct traumatic brain injury.
A 2013 paper spelled out criteria for diagnosing CTE and established definitions for four stages of the disease. One of the most important aspects of the paper, McKee says, is that it assessed, for the first time, the number of years a person had played football. “We found that there was a direct correlation between the number of years you played football and the grade or the severity of the CTE. So that was our first inkling of a dose response,” McKee says. Playing for a longer period of time, sustaining more hits, was common among those diagnosed with a higher stage of the disease.
Continued resistance to the idea of CTE as a distinct disease with its own diagnostic criteria was addressed again when the researchers used a National Institutes of Health grant in 2015 to convene what they called “a consensus conference of experts.” They brought together expert neuropathologists and gave them seven hundred slides representing twenty-five cases. Some had CTE and others had different conditions—including an extremely rare type of dementia that exists only on the island of Guam. Using the criteria for diagnosing CTE established in the 2013 paper, the experts were charged with evaluating the cases. “We gave them the slides, and over 90 percent of the time, they could tell CTE from all these other diseases,” McKee says.
Despite such evidence, resistance did not go away. In addition to questioning whether CTE was a disease, critics from the research community, the NFL, and even fans of the sport continued to resist linking it to playing football. Little wonder, since football’s popularity remained high. Super Bowls from 2009 through 2019 have ranked as the ten most-watched games since the contest started, and the past eight were the most-watched programs in US television history. The 2020 game continued the trend. Any decrease in television viewership was offset by those watching it via online streaming.3
For Ann McKee, passionately committed to her research, this meant listening to people, sometimes even other researchers, accuse her of “bad science.” Over and over again, her research would be criticized for “selection bias,” a term that refers to the fact that the brains were donated by players or family members who suspected that symptoms and behavior might indicate the presence of CTE. McKee always openly acknowledged this bias.
The importance of the research helped her to keep the criticism in perspective. “You have to develop a sort of callousness,” she says. “You have to think, ‘I can’t control, I have no control of what you think about me, but I know what I think is important so I’m just going to keep going.’”
Although playing football and watching football was not going away, the expanding body of CTE research began to make an impact, reflected in more rule changes in all levels of the sport.
New concussion protocols designed by the NFL’s Head, Neck and Spine Committee were released in 2013. The protocols included a symptom checklist, a limited neurological examination that included a cognitive evaluation, and a balance assessment.4 That same year, a new rule imposed a fifteen-yard penalty on players making a crown-of-the-helmet hit outside the tackle box. The rule, the league said, was meant to protect both the player receiving the hit and the player delivering it.5 The concussion protocols would be updated in 2017 and included rules requiring follow-up evaluations for players on the day after a game. The updated protocols also required examination of players who fell to the ground or were unable to stand for nonorthopedic injuries.6
Perhaps the most significant milestone would be the $765-million concussion settlement with former players, announced j
ust before the start of the 2013 NFL season. It outlined maximum benefits for various neurological conditions: $3 million for dementia, $4 million for CTE, and $5 million for ALS. With a lengthy required application and review process, it would be years before the first players would receive money from the settlement.7 In reporting on the settlement, The Guardian newspaper pointed out that the NFL admitted no wrongdoing, saying the settlement “states clearly that, despite making these payments, they are not accepting liability or admitting that the plaintiffs’ injuries were caused by football.”8 The first two awards totaling $9 million would not be announced until 2017.9
In 2011, news on the college level began to reflect the impact of Owen’s death. The Ivy League announced it would limit full-contact practices to twice weekly with the start of the season. The change exceeded NCAA guidelines, which at the time set the limit at five. The new rules also limited Ivy League teams to two full-pads practices a day during summer “two-a-days,” and reduced the number of full-contact practices during spring training.10 Al Bagnoli, the head coach at Penn under whom Owen had played, was part of the committee making the recommendation. Interviewed by WHYY, Philadelphia’s National Public Radio affiliate, he acknowledged Owen’s death played a role in the league’s decision.11 In 2016, Ivy League teams would completely eliminate full-contact hitting during practice.12
However, the NCAA would lag behind in setting limits on full-contact practices in which players tackle. Following a 2016 Safety in College Football Summit, the organization would end the tradition of two-a-day full contact practices in preseason, citing evidence that a high number of concussions occur in practices.13
By January 2016, college athletes would have a concussion settlement of their own. The ruling followed a 2011 lawsuit brought by a former Eastern Illinois University football player, Adrian Arrington. The initial settlement was amended in 2019. The NCAA set up a fifty-year medical monitoring program to screen and track concussions paid for by a $70 million medical monitoring fund. According to the law firm Hagens Berman Sobol Shapiro, which represented student athletes in a class-action lawsuit, the amended settlement also included significant changes to the NCAA’s concussion management policies and return-to-play guidelines. It established that all players receive a seasonal, baseline test to better assess concussions sustained during the season. Those sustaining a concussion would need to be cleared before returning to play. The settlement also stipulated that a medical professional trained in diagnosing concussions will be present at all contact-sport games and it established reporting mandates for concussions and treatment. The NCAA also agreed to supply $5 million for concussion research. The settlement did not cover medical costs, however; it paid only for testing and diagnosis.