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Knowledge Is Life: The CTE Breakthrough and the Burden of Understanding

Boston University’s groundbreaking research could soon make it possible to diagnose the disease in living patients—and make it impossible for football participants and fans alike to claim ignorance as an excuse

An illustration of a fan watching football Getty Images/Ringer illustration

What did you know, and when did you know it?

Offensive lineman D'Brickashaw Ferguson, a 10-year Jets veteran, said he didn’t fully grasp the risks until he saw Concussion. Linebacker Chris Borland, then with the 49ers, didn’t know that minor hits cause damage, too. Offensive lineman John Urschel left the NFL this summer after three seasons in Baltimore, reportedly in part because of what he learned from a study of chronic traumatic encephalopathy in former NFL players published two days earlier; wide receiver Andrew Hawkins, who had signed with the Patriots, retired the same day that the study came out and then announced that he would donate his brain to the Concussion Legacy Foundation.

What about you? When did you know what you were watching happen on the field, what the click of helmet-on-helmet meant? When did you first feel a pang of queasiness while watching the head of one young person collide into another’s? When was it that NFL fandom started feeling a little tricky, a little in need of defending, a little less like just another sporting event? When did you realize what you were drinking to on Sundays?

Soon, some questions will have answers, while others may soon enough require them. Researchers at Boston University announced Tuesday that they have developed a preliminary method of diagnosing CTE in living patients. It is not yet known what such a test would look like, how it would be administered to high-risk demographics like NFL players, or when it would be available, but the future seems clear enough: A football player, current or former, may for the first time be able to peer inside their own head and see everything short of a sign with the words “football was here.”

Football is so frequently a game of incremental probabilities, and CTE lends itself easily enough to rounding errors. What is there to do, it often seems, about a problem with neither solutions nor a visible arrival except agree that it is unfortunate and move on? The human brain is built for neither years of subconcussive hits nor the prospect of unquantifiable doom. Without a definitive link to the living, CTE too frequently felt abstract, a disease that more often than not waited for the spotlight to fade before sinking its teeth into a victim.

On the days I hate football the most, I wonder about a number: How many NFL players don’t know the full risks of CTE? How many whose job it is to rattle their brains for our entertainment know that even minor bumps can—do—add up to something terrible? Studies of the general public have found that awareness of the link between football and concussions correlates with income and education, as does parental willingness to let children play in the first place. There is no standardized head-safety education program at any stage of the sport, much less any standardized thought on how to keep heads safe in the first place. Who sits down athletes to tell them what they’re risking and what they might already have suffered? By the time players reach the NFL, they might be a dozen or more years into their football careers. Is it their new team that lays the ugly truth out, an employer with every incentive to keep the player on the field? Or is it the league, which spent years denying any link between the sport and CTE? How many players saw that Bennet Omalu, the researcher who inspired the film Concussion, estimated that more than 90 percent of professional football players suffer from some level of CTE? What percentage of the NFL’s active rosters saw this summer’s American Medical Association study of the brains of 111 former NFL players that found CTE in 110 of them?

Perhaps you make the case that it’s incumbent on players to research the risks of football on their own. Fine. Then the question becomes: How many do you think have? If that number is less than 100 percent of the league—and it most certainly is—what then? Consider how many players talk even now about the disease as a vague and distant storm cloud. After the BU study published in the Journal of the American Medical Association came out in July, a number of beat writers cased their respective locker rooms, asking player after player what they thought of the CTE risk. “I let [my wife] do the worrying about that and I just try to focus on playing football, understanding that there are inherent risks with playing this game,” New England wide receiver Matthew Slater said. “As grim as it is to say, I’ve played long enough that either it’s going to happen, or it’s not,” Eagles guard Brandon Brooks said. “I’m not going to change my career path. I’m playing the game I love.” And in San Francisco, then–49ers tight end Vance McDonald spoke of the power of a CTE link, even as the hypothetical study he was dreaming of was the subject of the conversation: “I think honestly that the day that something is released that can connect football to [CTE], it’s going to change the game dramatically.” There is a difference between having a sense that football carries brain-injury risks and having a full accounting—percentages, specifics, diagnoses, stages of disease progression—of what those risks are and what the personal outcome is.

There are players now who know the risks of football and who choose to play regardless. There will doubtless be many more who do the same, even as CTE becomes a disease with an aspect of clinical certainty. And yet it’s hard to imagine that a world in which CTE is knowable, a thing that is either there or is not, will fail to shock a great many who believed they were safe, or those of us at home who were content to cross our fingers and hope that everyone was a knowing participant in this game. People who didn’t know that they needed to fear more than outright concussions; people who trusted coaches who told them to get back on the field; people who thought their helmets or training were enough; people who thought that surely a disease this terrible and this widespread would have been something they were warned about. How many athletes will jog out of a stadium tunnel this week feeling that their strength or skill or youthful certainty in their own invincibility will protect them, not realizing how indiscriminately CTE seems to claim victims? How many of those, given the power to know that they were devastatingly wrong, will begin for the first time to reckon with what so many of us who knew better chose to ignore?

“After learning all of this,” the retiring Ferguson wrote of the clarity he gained when he began researching CTE, “I feel a bit betrayed by the people or committees put in place by the league who did not have my best interests at heart.” He should feel betrayed, as should many of his fellow players. As will, certainly, so very many, once they have the ability to see what has happened to them. They may wonder, rightfully, about the people who trained them and paid them, sometimes even as they attempted to shut down research into CTE. They may look at the league’s structure, at the lopsided contracts that rob many players of their leverage, forcing them to choose between getting back on the field or losing a paycheck (and possibly getting cut), and at how the league cycles through players like they’re nothing more than easily broken pieces on a board. And they may think about those of us who watched football, who grimaced as massive bodies took down other massive bodies and still tuned in the next week—those of us who painted our faces and bought jerseys and begged for autographs and knew about all of the studies and cheered anyway as heads slammed into one another. And what then? Complicity, like the disease itself, has for the most part been vague and unknowable. It appears, at long last, that it won’t be for much longer.

And then, finally, the question will be asked: What did you know, and when?