CHAPTER NINE

Dr. Karen Johnston realized early in her neurosurgical studies that, as she puts it, “you begin to understand better how the brain works by knowing how it doesn’t work when it’s broken.” She began her career at the Montreal Neurological Institute (part of McGill University) around the time Steve suffered his second documented concussion, in 2000. Her focus was the “traumatized brain.”

Brain trauma wasn’t about concussion at the time. Concussion was a small, peripheral field dominated by observation and anecdote, not by science; it was driven by team doctors in all sports, most of whom were orthopedists because most sports injuries involved joints or bones. The doctors were beginning to see more clearly the effects that concussions had on their players, but because brain X-rays didn’t disclose anything broken or torn, these athletes kept on playing—partly because, as players, why wouldn’t they, and partly because, if there was no visible damage, their coaches assumed they would.

Johnston arrived in the field just as the “brain people,” as she describes them, were becoming interested in concussion itself: in the pathology of it, and what it really means to the brain. Functional MRIs had been developed and were becoming more widely available—and these scans were able to show what had never been seen before. Neuropsychologists were getting more involved, too. Concussion had never been an invisible injury to them. They saw it every day in the symptoms and behaviours of their patients. They knew that if someone was doing weird and destructive things, something wasn’t right.

Johnston treated some of the players from the CFL’s Montreal Alouettes. She was not the team’s doctor, but she watched their games from the sidelines and saw up close the effects of concussion and how the players’ injuries occurred. She could also see the challenge of being a team doctor—on the one hand, there were the single-minded needs of the players and coaches, the passion of the crowd, and the urgency of the game as it ticked away; on the other, the doctors’ profound obligation to do what is best for the patient, and their absolute inability in almost every case to know what was best, because of the mountain of things they did not and could not know. A player’s dizziness, disorientation, headache—what did they signify? Were they of the sort we all have, ones that quickly go? Or something more? And what was especially difficult was that these team doctors had to decide instantly, as if they really did know.

Doctors who treated patients with concussions were looking for some certainty and guidance. If they weren’t able to know all they needed to know, they wanted at least to be able to apply the best of what they did know according to some accepted standard. “Everybody was trying to hang on to something,” Johnston recalls. The most obvious indicator—a player having been knocked out—wasn’t good enough (it would eventually be dismissed as an indicator entirely). Doctors were seeing too many other symptoms that seemed to matter just as much. Therefore, a grading system was needed. One of the early leaders in this effort was Dr. Robert Cantu, a neurosurgeon in Boston, later well known for his work at Boston University.

Cantu’s initial focus had been boxers. It was in boxing, many years earlier, that blows to the head in sports had first gained attention. In an article in the Journal of the American Medical Association in 1928 entitled “Punch Drunk,” Dr. Harrison Martland expressed in scientific form what boxing observers had long noticed and what fans could see with their own eyes—fighters with slurred speech, tremors, and unsteadiness in their gait and balance. These boxers, who suffered repeated blows to the head, were described at the time as being “cuckoo,” “goofy,” “cutting paper dolls,” or “slug nutty.” Their condition came to be called “dementia pugilistica.”

Around this time and for many years after, punch-drunk characters were often depicted in movies. They dressed in a funny way; they talked funny and said funny things. They were usually a sidekick to the star, like Sach in the Bowery Boys movies; they were the comedy relief. There was nothing sad about them. Their role was to chime in with the kind of wisdom that made everyone else, who looked and sounded smart, seem stupid—the way kids in sitcoms do. Red Skelton, a popular TV comedian of the late 1950s, played a recurring character called Cauliflower McPugg, who—with his cap on sideways, his head twitches, and his nasal, slurred speech—was hysterical. McPugg was a boxer.

In real life, most boxers were immigrants or African Americans, who were doing what immigrants and African Americans at the time had to do to get by. To many white Americans back then, they were seen as lowlifes who were just going to fight anyway—so why not in the ring to make a few bucks and maybe become a “somebody.” And because they weren’t like everyone else, when they walked around punch-drunk people would laugh at them and not feel sad.

Then along came Muhammad Ali. He was beautiful and smart, he did float like a butterfly, and he was definitely not a lowlife. It wasn’t funny to see Ali in the years before his death. It’s not funny to see football or hockey players now—local heroes who can’t remember, and whose thoughts won’t string together. It’s hard to recall the last punch-drunk character in the movies or on TV. Punch-drunk isn’t funny anymore.

But until recently, boxers seemed of another world to scientists as well. Boxers get knocked out. Football and hockey players rarely do. On an MRI, boxers’ brains often look different; football and hockey players’ brains look normal. In boxing, hits to the head are purposeful; in football and hockey, they are mostly incidental or accidental, less frequent, and are delivered with less force—except in hockey fights. That made the sports seem different, and led them to be thought of in different ways even by scientists. It took a long time for scientists to see that the issue was hits to the head, not about how they happened; and that boxing, football, and hockey were not disconnected worlds, but on the same hits-to-the-head continuum. For Johnston and medical colleagues engaged in other sports, it was this recognition that came to link their research and their work.

“We learned to connect the extreme end, which was boxing,” Johnston says, “to people who were getting hit and experiencing symptoms but who were not being knocked out, and were not having abnormal imaging. We think of concussion now not as a structural injury to the brain—because when we do these scans, they are normal—but as a functional injury, as the brain not working in certain ways.” If there is something functionally wrong, there must be something wrong whether they can see it or not. And once the scientists and doctors thought to make the connection between the sports, they began to think: Why would a fist in hockey be different than a fist in boxing? Why would an elbow or a shoulder be different than a fist?

This had been so obvious. But they couldn’t see what they couldn’t imagine, just as they couldn’t understand what they weren’t looking for. Neurosurgeons and MRIs couldn’t see much of the damage present in a structural brain, but neuropsychologists could see that damage by looking at the functional, or dysfunctional, brain—by looking at people’s symptoms and behaviours. It was seeing the structural through the functional.

In the early 2000s, more time and resources were being dedicated to the field of concussion. Studies were being carried out and articles were being written—published not just in scientific journals but in newspapers and magazines. Sports medicine conferences included sessions on concussions. With all this attention and interest, scientists and sports medicine people began to collaborate. Concussion was still a field on the margins of both sports and science—and sports medicine was still on the margins of medicine—but whereas earlier, when each specialty had been too small to fight big fights, they had fought smaller ones among themselves. Now, with bigger ones to win, they began to fight together over the profound impact of concussion itself.

One more thing proved immensely important. Work on concussions had been carried out by pockets of single-minded people involved in different sports on different continents. Though they had all decided that concussions mattered, most didn’t know each other or know each other’s work. But the more advanced science and higher public priority gave them greater reason to connect, and with the Internet they now had the means of doing so. The importance of instant communication cannot be underestimated, Johnston says. It allowed them to begin thinking about a global conference, the effect of which would be profound.

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In 2001, the first International Conference on Concussion in Sport was held in Vienna, organized by the International Ice Hockey Federation (IIHF), the International Olympic Committee (IOC), and the Fédération Internationale de Football Association (FIFA). Johnston was chair of the Concussion in Sport Group that wrote the conference’s final statement. Despite the fact the conference was held less than two months after 9/11, about 150 people from 15 sports organizations attended.

Grading systems were the conference’s focus. “The Vienna meeting was the turning point,” Johnston says, “because people declared their will to start working together, to start driving the science forward, not just the anecdotal stuff. That was a really big deal. At that meeting, we first started to hear about some of the great neuropsychological approaches. There were imaging studies. There was some good science that was just starting to take off. The other conferences that followed had the same goal in mind, but the first one changed the concussion world.”

Two years later, in 2003, Johnston and other Canadian scientists decided it was time to take this new information on the road. They called it the “Concussion Roadshow.” It was organized by ThinkFirst, the group headed by Dr. Charles Tator that had Paul Montador as a member of its board.

“We felt a necessity to take the message out to the public and to the teams,” Johnston says, “because we were starting to learn what symptoms were important, but also because doctors still thought that loss of consciousness was the big thing, [and because] teams had no clue what to do, and players were going back out and playing when they were injured. And we were starting to know that there were way more concussions than we thought.”

They travelled around Canada, gave talks, held conferences. “The presentations were built around athletes telling their story,” Johnston says. “We had talks about the background science designed to be digestible to a wide audience. We talked about protection, about rehabilitation, about some of the signs—what we know and what we don’t know. A team doctor talked about some of the issues that a team doctor faces. In the audience, we had athletes who had been concussed. There were medical doctors, physiotherapists, athletic therapists, coaches, and parents. And media.” Many more people were becoming aware of the problem of concussions in sports. Johnston and the others were achieving what they had set out to do.

As scientists, their job was to study, learn, and apply what they’d learned. But with the roadshow, they had gone a step further. They had shared. Now the public knew that concussions were not just about “feeling woozy,” “seeing stars,” or “having your bell rung.” They are brain injuries, and like injuries to a shoulder or a knee, they almost always go away—they heal—but sometimes they don’t, or they don’t heal completely. With a knee or a shoulder, sometimes function is affected, strength and mobility are lost or diminished, pain is increased; a shoulder that could once throw a ball ninety-five miles an hour can now throw it only eighty-eight. And injuries that do go away sometimes come back twenty or thirty years later, before regular advanced aging brings them back.

It’s the same with the brain. Concussion is an injury to the brain. It can lead to the brain’s diminished function, whether temporarily or for good. Losing seven miles an hour on a fastball is one thing; losing your equivalent capacity to solve problems or make decisions is quite another. Johnston and her colleagues had a message for the public: reducing the number of concussions is important.

In 2004, the second International Conference on Concussion in Sport was held in Prague. Two more followed in Zurich, in 2008 and in 2012. Another was held in Berlin in November 2016. The Mayo Clinic also held summits on concussions in hockey in 2010 and 2013. The scientists and sports medicine practitioners in the field were moving ahead. They were conducting more studies; they were using what they learned to better diagnose and treat their patients. The public were becoming more aware of the problem and of the best solutions. The decision-makers—coaches, on-ice or on-field officials, team owners, league and player executives—could then take this knowledge and apply it to their sports because now they knew, too. Because whatever uncertainties remained over the origins of CTE and other neurological disorders, over who gets them and how—through actions incidental or accidental, contrary to the rules or not—there was now no doubt, none, about the connection between blows to the head and brain injuries, between brain injuries and the resulting lousy things that happen to a person’s life.

Johnston and the others had built the awareness; they knew the decision-makers would come.

But the decision-makers didn’t come. At first, perhaps, they didn’t know about the life-affecting impact of concussions, but then they did—and they ignored, then denied, then considered the possibility, then acknowledged the possibility but with caveats. Then they took some action, then emphasized how difficult it is to take action, then emphasized the actions they had taken, especially as compared to other sports, other leagues, other anything, especially considering all the scientific doubts that still remained. In doing so, they avoided the only real question: Is the dimension of the actions they have taken consistent with the dimension of the problem they face?

When the decision-makers were slow to respond, Johnston and others grew frustrated. They tried patience. They tried perspective—we’re a lot further ahead than we were ten years ago. They tried understanding—change takes time. They tried generosity—I think Gary Bettman really gets it.

Busy with her patients and her research, Johnston occasionally still steps back, seeking perspective, and sees how slowly actions—true, meaningful actions—are being taken. She has decided it is her fault. She hasn’t gotten the message across well enough, she thinks. “It has led me into the field of KT or ‘knowledge translation,’” she says. “How do we take this information and make it digestible and accessible to various groups of people?” She offers an example: “The way an athlete learns information is not necessarily the same way a neuroscientist or a family doctor does. So what models of education do we need to develop, and deliver, so that we are not just handing some pamphlet to everybody and they’re just trashing it? Shall we make another video? Shall we do this online? Does it need to be interactive? Shall we make an app for that?”

Johnston says she doesn’t have an answer. “It feels like a desperate measure, trying to find ways to convince people to buy in. Ultimately, maybe we need marketing people doing this. I don’t know. I’m a brain surgeon. What the heck am I doing trying to figure out ways to educate physiotherapists or hockey coaches about concussion? I was never trained in those skills. So, once again, you start collaborating with other people. All of this stuff is so outside the box from whatever I thought I would be doing.”

Johnston tries to be optimistic. “It’s why I like looking after my patients,” she laughs. They do what she tells them to do—mostly. But she knows that’s not good enough. She doesn’t want to have to see the people she is treating. She can help many of them be better than they were when she first saw them, but she knows that they would be so much better off if they had never been injured, if the games they love to play and can’t stop themselves playing were safer. But these decisions, she knows, are not hers to make.

Yet she sees hope. “Some schools have taken this on. Some teams have. Some of the stuff that’s come out of the NFL studies, the problems with dementia and mood disorders and suicide. They create a forum and a voice to talk about this. The athletes coming forward; they are the best spokespeople.” This is all about better “knowledge translation,” in Johnston’s words. But KT isn’t always the problem. Others have to decide that they want to listen in the first place.

Decision-makers know who decision-makers are. They know the difference between influence and authority. They know that influence may reside in someone else’s voice—someone like Johnston—but that authority resides with them. They know that they can say to Johnston or to everyone else—the scientists, researchers, media commentators, parents—“You and thousands and millions of others like you might be completely right. But you are not sitting in this chair; this is my decision not yours, and I have the right to do what I want to do.” Parents know that coaches make decisions that they, as parents, cannot make themselves; coaches know the same about minor hockey officials, and minor hockey officials know that about leagues, and leagues about provincial or state associations, and provincial or state associations about Hockey Canada or USA Hockey. And Hockey Canada and USA Hockey know, and the IIHF knows, that the NHL makes decisions that they cannot make. The NHL is the big decision-maker in hockey. It sets the tone, it determines the direction, because it creates the dream.