BOCA RATON, Fla. – Todd Ewen spent the last years of his life with a shadow over him.
The former NHL enforcer read the news about other hockey players who had been diagnosed with the degenerative brain disease known as CTE after they died, and he told his wife Kelli, "If they have CTE, I know I have CTE." He had memory loss and depression, and wondered if hockey had caused it.
He died last September at age 49, reportedly from a self-inflicted gunshot wound. Ewen’s family decided to donate his brain to science, in the hopes of increasing awareness of how concussions might lead to CTE and later-life problems.
Lili-Naz Hazrati, a Toronto-based neuropathologist at the Krembil Neuroscience Centre, studied Ewen’s brain.
"We didn't find anything," Hazrati said in an interview with Yahoo Sports.
Ewen, despite playing a brutal sport with untold collisions and blows to the head, did not have CTE. He had depression, and fear.
"He thought he had CTE," Hazrati said. "He was convinced. He was very afraid. That might have pushed him to do what he did."
The fear is understandable. Boston University neuropathologist Ann McKee has diagnosed CTE in 90 of 94 deceased NFL players she has studied, and she told a congressional roundtable on March 14, "I unequivocally think there is a link between football and CTE." The steady stream of headlines about CTE and contact sports will likely continue here this week when NFL commissioner Roger Goodell holds his press conference at the league's owners' meetings and faces questions about the safety of his sport.
Yet the success of the movie "Concussion" and the surrounding coverage of head trauma, has some neurology experts worried about fear outpacing facts. The admission at the March 14 congressional roundtable by NFL executive Jeff Miller of a link between football and CTE was a vindication for many who feel the league has been denying the obvious, but more than a few experts believe the connection between football and CTE isn't direct at all.
"It's not a given, it's not a certainty, that an individual playing contact sports will get brain damage,” said sports neurologist Jeffrey Kutcher. “The link is more complex than simple cause-and-effect.”
His own science backs him up. A study Kutcher co-authored in the British Journal of Sports Medicine in 2013 concluded "the speculation that repeated concussion or subconcussive impacts cause CTE remains unproven. The extent to which age-related changes, psychiatric or mental health illness, alcohol/drug use or coexisting dementing illnesses contribute to this process is largely unaccounted for in the published literature."
Three years later, the science hasn’t yet proven the link, and it likely won't until CTE can be diagnosed in the living.
This seems to go against what is considered clear in the media and in public discourse. Last week, a headline on the cover of the New York Daily News blared, "NFL finally admits what rest of world already knew: Football causes brain damage."
Football is a dangerous sport, and repeated hits to the head can certainly lead to CTE, but "football causes brain damage" is too linear, at least for now. And experts are concerned the wrong message is getting through.
"CTE is proven. We know it exists. We know it's caused by brain damage," says Mark Herceg, chair of the concussion task force in Westchester County, N.Y. "What we don't know is who's gonna get it and who's not going to get it."
Herceg and Hazrati both offer the possibility that some genetic factor is at play, and certain people are more vulnerable to concussions (and perhaps CTE) than others. Those who donate their brain to science are more likely to have clinical symptoms, and so the ominous rate of CTE found in deceased athletes might be misleading. McKee herself has admitted her findings result from "a very biased study." (McKee was not available for an interview.)
"Most of the cases we see, the ones with CTE had issues during life." said Hazrati. "They were struggling with something."
So while brain damage is the result at autopsy, it’s hard to say football led directly to that result.
"High blood pressure can produce brain changes," said Allen Sills, professor of neurological surgery at Vanderbilt. "Drug abuse, alcohol abuse. You have to go back and sort out how much of that damage is coming from sports participation and how much is from other aspects of someone's life. There are so many things that affect the brain; it's very hard to isolate sports participation."
It's the fear of some experts that athletes will worry excessively about past concussions, and that will lead to the kinds of symptoms that everyone is afraid of. Put simply: fear could create a downward spiral as much or more than the actual concussions do.
"There's no doubt that repetitive trauma over time can have a detrimental effect on somebody's brain," Kutcher said. "[But] there is also real danger in oversimplifying that relationship to the point you're saying people should not play sports because of that risk, which can then affect people's lives for the negative. You're creating depression. You are making people have worse problems with sleep, worse problems with alcohol. You are propagating the symptoms you're talking about wanting to prevent in the first place."
This feeling was reflected at the Congressional roundtable in which Boston University’s McKee and the NFL's Miller made their comments. In that discussion, David Cifu, a Virginia Commonwealth professor who has led a major study of brain injuries in the military, insisted, "The sky is not falling."
"There isn't science that supports that people shouldn't play sports after a concussion," he said. "It's bad for our youth, it's bad for our professional athletes, it's bad for everyone involved to spread that belief."
He punctuated his argument with this: "People have been getting concussions for 3.2 million years; we're not all demented."
Goodell has not helped himself with some of his comments on this issue, most recently saying at the Super Bowl that there are dangers to sitting on the couch. But giving up contact sports, or deciding not to play, has its own risks – both physiologically and psychologically. The transition out of sports can be taxing emotionally for even the healthiest athletes, and symptoms can follow.
"I get very worried when patients come to me and they're having an emotional problem and rather than thinking it's treatable, they think it's the beginning of CTE," said Chris Giza, a professor of pediatric neurology at UCLA. "That doesn't mean CTE doesn't exist, but when people think every football player has it, that certainly is not the case. Just because 95 percent of the brain bank has it doesn't mean 95 percent of all brains have it.
"The way the story is being presented to the public can cause additional fear."
This is another issue: most of the media coverage is on one side of the boat. The NFL's prior intransigence on brain trauma has made it an easy target for indignant columnists and social media commentators. But because the nuance of science doesn't resonate as well in headlines, caution on conclusions doesn't always make it to the public.
In a study last year, Harvard professor Grant Iverson stated that "CTE has been poorly understood for more than 80 years" and went on to wonder if the media is making things worse as much as better.
"[G]iven the thousands of media stories relating to contact sports and CTE," Iverson wrote, "it would be interesting to examine whether media coverage has had an adverse psychological effect on retired athletes, and whether repeated exposure to news stories elicits or reinforces suicidal ideation in some athletes."
Still, when caution is expressed, it is often derided as tantamount to defending cigarettes in the 1950s. And while the Boston University team has led the way in awareness, some in the neuroscience community have concerns over what they are saying and how they are regarded.
"When it seems as if people who are not from the B.U. organization say things like the science is not as advanced as reported, it seems they're referred to as a CTE denier," said Herceg.
Sills says there’s a false perception of a "big, silent conspiracy" steering the public away from the truth on CTE.
"It's extremely important to balance facts with speculation of theory," he said. "The burden of proof is quite high."
Although CTE is one possible outcome from a football career, it's being cast as an inevitable outcome. And even if a former football player has CTE and doesn't know it, the symptoms he faces could be vastly different from the feared effects. Just like concussions aren't known to ensure CTE, CTE isn't ensured to create debilitating mental illness.
"While it's great media, those cases can't take us to where we need to go next," Giza said. "They can publish 200 cases of CTE but it won't tell me the rate of cognitive impairment for my son if he wants to play football."
Kutcher is more blunt: "The paradigm is overly simplistic. It seems that either they [Boston University experts] don't fully respect the complexities involved or if they do, the message is oversimplified for the purpose of furthering a non-science driven agenda or telling a story."
Neither McKee nor Robert Stern, director of BU's CTE research center, were available for comment, but Stern has offered some of the same caution. "There has been a lot of hype about CTE that has gone beyond the science," he told USA Today late last year. "We need to have the science move forward so we can answer those important questions like, 'What are the symptoms of CTE exactly? When someone has symptoms, what can we do to have a better understanding of whether it's due to CTE or not? Just because someone has depression doesn't mean it's CTE."
There is a constant concern that the nefarious legacy of a contact sport is hidden in an athlete's brain, announcing itself with a lost set of keys, or a flash of anger, or a bout of sleeplessness. Stories of the long and lonely road to dementia are terrifying. But those early signs may not mean something is irreversible; they may not mean anything at all. Sometimes new activities and counseling can slow or reverse ominous problems.
"Here's the real danger of this," Kutcher said. "When people do have problems with memory or impulse control, or depression, and they've played a contact sport, it is too quickly assumed they have CTE. Everybody involved stops thinking, they stop using critical thought. When these problems do occur in former athletes, it's still much more likely they are present for the usual reasons, the same things that cause them in every body else."
It's possible something similar happened to Todd Ewen.
"We hope that anyone suffering from the effects of concussion takes heart that their symptoms are not an automatic diagnosis of CTE," Kelli Ewen said in her statement. "Depression coupled with other disorders can have many of the same symptoms as CTE."
The crucial difference is: depression can be treated.