Authors: Mark Fainaru-Wada
At no point during the one-hour show did Duerson address the issue behind the rule changes: the possibility that football was causing neurodegenerative disease in his fellow retired players.
Four months later, Duerson was alone in his Florida condo, carefully plotting his suicide. He laid out a Bible, set aside books for various family members, and smoked one last cigar. At 2:52
A.M.
—just before he shot himself, authorities concluded—he sent a text message to Alicia. The last line read: “I really do think there’s something going on in my brain in the back left side. Get it to the NFL. Please.”
Duerson sent a similar text to his fiancée and scribbled the same message at the end of his typed suicide note. Clearly, he wanted to leave nothing to chance.
The task fell to Tregg, but Duerson’s son had no idea how to go about
donating his father’s brain to science. Like every other football fan, Tregg knew that concussions were a hot topic, but he hadn’t heard about CTE or the initiative to create a brain bank for NFL players. Tregg had only questions, most of which he thought were bizarre: How does one donate a brain? What is the NFL’s brain bank? Does the coroner need to do something special to keep my dad’s brain? What does this do to our funeral plans?
In his search for answers, Tregg called the Players Association, figuring his dad had worked with the union and someone there would be able to help him. He reached one of his father’s former teammates.
“My dad committed suicide and I’m trying to donate his brain to the NFL,” Tregg said. “Can you help me?”
“Okay, I’ll get on this and call you back,” the man said. At the same time, Alicia Duerson sought help from Connie Payton, the wife of Bears great Walter Payton, another former teammate of Duerson’s. On the Duersons’ behalf, an employee from the Paytons’ foundation contacted the NFL’s offices and explained the family’s desire to donate the brain to science.
Despite Duerson’s last words—“Please, See That My Brain Is Given to the NFL’s Brain Bank”—no such place existed. But it was hard to imagine that any other research institution except Boston University—the league’s “preferred” brain bank—fit that description. Both the union and the league had pledged to encourage players to donate their brains to BU after death. The NFL’s $1 million gift was intended to underwrite the BU Group’s research. Shortly after the donation, the group presented Goodell with its “Impact Award” during a gala fund-raiser at the Boston Harbor Hotel. Guests were treated to a large cake adorned with a football-shaped “brain” that appeared to be made of fondant.
Tregg was directed to Nowinski, who explained the process and sent him the paperwork. Fighting through a haze of sadness and exhaustion, Tregg read the documents. He stopped at the language describing how even his father’s eyes would be part of the donation.
“You want to take his eyes?” Tregg asked Nowinski.
“Yes, we need to take the eyes; they are actually really important to our study,” Nowinski said. BU was exploring whether an examination of the optic nerve might help with the diagnosis of CTE.
“Okay,” Tregg recalled saying, “and then I just signed it. And then we faxed it off. And that was it.”
But the
NFL wasn’t nearly as unified behind BU as the league’s letter of support and million-dollar gift suggested. Top members of the reconstituted concussion committee were already expressing doubts about BU and, unknown to the BU researchers, were working to keep Duerson’s brain away from the group.
The new NFL doctors said they had four primary concerns about BU, which they voiced to fellow researchers, journalists, and the families of former players: (1) There wasn’t enough research for BU to state conclusively that football-related head trauma was causing CTE. (2) BU had oversold its findings, feeding a growing hysteria about the risks of playing football. (3) BU refused to share brain tissue with other scientists, making it impossible to validate its conclusions. (4) The group’s growing fame and funding were predicated on establishing the link between football and brain damage, creating an inherent bias.
By then, Ann McKee had emerged as
BU’s rock star, eclipsing even Nowinski. Her appeal as a spokeswoman seemed boundless. The
sudden attention had yanked her out of her “rabbit hole” of self-imposed scientific isolation and cast her into the spotlight, where she was sought out by everyone from
60 Minutes
to HBO to explain the new football disease. Laypersons, journalists, neuroscientists, athletes—all seemed fascinated by her dazzling looks and her ability to make CTE understandable. Much was made about how McKee studied the brains of dead players during the week, then put on her cheesehead and her Packers jersey to watch Sunday’s game. “She’s a brilliant scientist who happens to be a little blond bombshell,” said Eleanor Perfetto, the widow of a former player, Ralph Wenzel, whose brain was studied by McKee. Introducing McKee at a
conference in Las Vegas, a fellow researcher gushed: “In addition to having golden features, she has a gold standard. If it doesn’t meet her gold standard, it ain’t CTE.”
McKee and her colleagues had used their platform to become increasingly assertive about the dangers of football. One of
their most ominous assertions was that full-blown concussions weren’t what was triggering the disease. Rather, McKee and her group believed that CTE was essentially dementia pugilistica—boxer’s dementia—now being found in other contact sports, especially football and hockey. As in boxing, it was the accumulation of hundreds or thousands of “subconcussive” blows that caused the damage, not one big knockout punch or open-field collision. “We don’t think it’s because of direct blows,” McKee said. “This is a very internal part of the brain. I mean, it’s really deep inside.” Cantu called CTE “a dose-related phenomenon” involving “total brain trauma.”
These assertions had obvious implications for the NFL. The league could change the rules to cut down on helmet-to-helmet hits. It could monitor the number of concussions in an effort to reduce them. It could put independent neurologists on the sidelines to look for concussions and try to end the culture of pain that pressured players to play through it. But
if CTE was occurring at a deeper level, as the BU Group believed, that raised questions about the very essence of football.
One of BU’s main critics was Mitch Berger, the chairman of the neurological surgery department at the University of California San Francisco Medical Center. Berger, a strapping former Harvard defensive end with wavy salt-and-pepper hair, had been brought onto the new NFL committee to conduct a longitudinal study on football-related head
trauma—the long-term study that had been started and then abandoned by the original MTBI committee. Berger, who once had a tryout with the Bears, was so prominent and well regarded within the neurosurgery community, UCSF put his face on a billboard off Interstate 80 near the San Francisco side of the Bay Bridge.
Berger didn’t doubt that McKee had seen CTE in some former players, but he was troubled by what he perceived as the BU Group’s agenda. The group’s survival, he felt, depended on proving that CTE was a major health problem. “I mean, their whole existence, their funding, relies on this [idea] that they’re perpetuating that it’s a fact if you play football you’re going to have some form of cognitive impairment,” he said. “So it’s very, very difficult to accept it because it is so biased. I mean, anybody would say the same thing: You can’t help but believe there’s a bias. This is what they’re there to do—to show that there is a link.” He called BU’s reluctance to share brain tissue with other scientists “suspect.”
Berger likened the hysteria generated by BU to fears that cell phones caused brain tumors. For BU to suggest an absolute link between football and brain damage was “irresponsible,” he said.
Berger’s criticism was a common refrain: How could McKee be certain that head trauma was causing this disease? In fact, she couldn’t be sure. It was all too new, and there weren’t enough cases. The mechanism by which head banging turned into brain disease was unknown, though it was well established in the scientific literature that head trauma could lead to long-term cognitive problems.
Yet there
wasn’t a single recorded case of CTE in someone who had not sustained some form of brain trauma. To scientists such as Omalu, Bailes, McKee, Cantu, Hamilton, and DeKosky, along with numerous others, that alone was overwhelmingly persuasive. There was simply no other common factor. It was true, as critics like Berger noted, that there was a
self-selecting quality to the cases: McKee was getting the brains of people who had been profoundly impaired, and their families wanted answers. The BU Group was drawing from a sample size that was “skewed beyond belief,” Cantu acknowledged. But the sheer number and variety of cases was impossible to ignore, he felt.
“Mitch Berger,
with all due respect, is full of shit,” said Cantu, defending the BU Group when the criticism surfaced publicly.
“No,
not
with respect,” Cantu added testily. He suggested that Berger and others were jealous about the publicity the BU Group and McKee had received. “This is a neuropathological diagnosis that’s black-and-white, and one confirmed by anyone who has looked at the tissue,” Cantu said. “It’s not something with bias. It’s not like if this brain doesn’t have it, we’ll duck it or stick it in a bucket.”
Nowinski called Berger’s comments “bizarre. I mean,
the facts are the facts.” He noted that the criticism had come from “somebody connected with the group that profits from the sport.”
Berger and other members of the NFL committee wanted to
steer Duerson’s brain away from the BU publicity machine. The designation of BU as the NFL’s preferred brain bank and the $1 million donation had predated the new committee by several months. The doctors thought it was irrelevant. Almost
from the new committee’s inception, Ellenbogen and Batjer had advised Goodell to start funneling the NFL’s money to the National Institutes of Health. Their argument was that the NIH could play a neutral role—“like Switzerland”—and farm out the research to independent scientists who didn’t have a vested interest in proving that CTE was connected to football.
The conflict put Duerson’s family in the cross fire of a highly unusual situation. Duerson had asked to make sure that his brain was turned over to the NFL’s brain bank. The NFL had designated BU as its “preferred” brain bank, and league officials had even directed Duerson’s family to Nowinski. Yet the NFL’s doctors wanted to divert Duerson’s brain away from BU to the NIH.
“We had Dave Duerson’s brain,” Hunt Batjer, one of the committee cochairs, would later complain. “We talked to the family, the coroner, we had two outstanding neuropathologists waiting via NIH. But Nowinski flew into Chicago and told the family he represents the NFL, and they got it.”
It hadn’t gone exactly that way. But Batjer’s tone reflected the new NFL committee’s disdain for the BU Group. It was a fight that was far from over.
Two and a half months after Duerson’s suicide, BU held
a press conference to announce that he had CTE. Alicia, Tregg, and Duerson’s other three children attended.
McKee said the case was indisputable evidence that the disease was connected to football. She added: “I think in Dave Duerson’s case it
drove him to suicide.”
For McKee, Duerson’s death was simply more proof that the NFL—and, by extension, the entire football-mad country—was facing a huge problem. Including Duerson, McKee had examined the brains of 25 deceased NFL players; 24 had CTE. McKee understood the lingering doubts. She herself had once had them. With each new case of CTE, she thought: “
I just can’t even believe this.”
“There’s definitely this feeling like, ‘I must be making this up,’ ” McKee said. “You know, you’re pushing credibility so far. You’re thinking, ‘This can’t be true.’ But then I kept saying: ‘It is true. It is true. I’ve been doing this for too long. I’ve never seen this thing before, and it’s really there.’ ”
McKee found herself thinking: “I’m really wondering where this stops. I’m really wondering if every single football player doesn’t have this.”
The NFL’s concussion crisis continued to metastasize, spread by a growing army of former players, doctors, and lawyers. In Los Angeles, a prominent workers’ compensation lawyer named Ron Feenberg began meeting former players with cognitive problems and saw another way to go after the league. California has some of the most lenient workers’ compensation laws in the country. Any employee who works in the state for any length of time is eligible to file a claim regardless of where the company he or she works for is based. That meant any former NFL player who played even one game in California could file a claim against his team if he could show that he suffered debilitating injuries during his career.
Feenberg, a voluble man with a full head of gray hair, soon found himself drawn into the horrifying world of gridiron dementia. The lawyer recruited some
two dozen clients who claimed to have traumatic brain injuries or some combination of orthopedic injuries and neurological disorders that stemmed from their careers. On one level, Feenberg thought these were garden-variety workers’ compensation cases, not much different from “someone falling down a flight of stairs, getting your finger caught in a machine.” But what struck him was how devastating the injuries were to the men and their families. It was like a siege on their identities. “I have players who have been shown pictures of themselves in uniform, and they don’t even recognize the photograph and they can’t tell you who that picture is even though it’s themselves,” he said.
Feenberg thus began to file claims with the California Workers’ Compensation Appeals Board. The forms were straightforward, full of checked boxes and brief explanations. In the section where the former NFL player was asked to identify which body part had been injured, Feenberg would write in “brain.” The players sought compensation from individual teams, not from the NFL. “McDonald’s franchises answer to McDonald’s corporate, but if you slip and fall at a fast food store on water or grease and break your leg, you bring your action against your direct employer,” he explained. Within two years, hundreds of former players had lined up to file workers’ compensation claims in California for brain injuries, opening up
a new front against the league. In response, the NFL mounted
a fierce lobbying campaign to close the loophole while teams and insurers fought the individual claims. The league had exerted the same pressures in an attempt to change the laws in other states. The battle became so heated that Patriots quarterback
Tom Brady and Saints quarterback Drew Brees wrote a joint letter to the
San Francisco Chronicle
in opposition to the proposed change.