After his sixth concussion, Chris Nowinski was home in bed, climbing the walls in the middle of the night. Not out of boredom or captive angst; he was actually asleep but standing bolt-upright, trying to scale the wall above his pillow. "I dreamt that someone was falling, and I needed to reach them," he says. Nowinski, six-five and 260 at the time, a Harvard lineman-turned-wrestler on the brink of big stardom on the World Wrestling Entertainment tour, proved a hard man to reason with that night. "My girlfriend tried to wake me up but couldn't do it," he says. "I jumped head-first off the bed over a nightstand. And even after I landed, I was still asleep. That was what it took to scare me straight."
Nowinski was 24 and a cash-cow prospect, the first Ivy grad to grace the mat of a Vince McMahon production. Just two years out of wrestling school, he'd vaulted the ranks of maulers to become a pay-per-view sensation named Chris Harvard. There were millions to be made before he turned 30, then the inevitable pivot to action movies or some other self-branding pot of gold. But Nowinski up and quit then, in 2003, afraid for his life and in constant pain. He'd had headaches before from prior concussions – two of them suffered as an All-Ivy tackle, four in his short time wrestling – but nothing like the ones that set in now and lasted five years without letup. "Excruciating migraines in the back of my head that would work their way forward," he says. "Some days I could handle them, some days not. That was when the beer handled them."
Medications proved useless or made things worse, wreaking havoc on his sleep cycle. "I'd act out dreams that I was choking to death, or put my girlfriend in a headlock and wake up to her screaming." He saw a half-dozen doctors over the next couple of years before he found his way to Cantu's office. "Till then, I'd thought this was my first concussion because none of the others knocked me out," says Nowinski, mortified by his then-naiveté. "He said, 'Yeah, but you've been hit and seen stars or heard ringing?' and I said, 'Of course, man, that's all the time.' He goes, 'Well, those are concussions,' and that was the 'aha' moment. Every guy I ever played with had those."
Though slowed by his migraines and sleepwalking follies (chasing rabbits in his bedsheets, accosting imaginary intruders at his front door), Nowinski resolved to warn other athletes of the catastrophic risks they were courting. He read every study he could get his hands on, interviewed clinicians and ex-players by the dozens, then sat down to write a book, with Cantu's support, that he hoped would change the state of play in sports. Published to wide acclaim in 2006, Head Games: Football's Concussion Crisis made him the leading – and for a while, at least, the only – activist on an issue he was about to break wide. Over the next year, he talked the family of Andre Waters into donating for study the brain of the ex-Eagles safety after he shot himself to death at 44; talked the mother of Justin Strzelczyk into doing likewise after her son died in a wrong-way, high-speed chase at the age of 36; talked Teddy Johnson, the Patriots linebacker, into going public about his post-concussion syndrome; and persuaded the family of Chris Benoit to donate the brain of the superstar wrestler after he killed his wife, young son and himself. Each of the dead athletes tested positive for CTE, the most floridly afflicted being Benoit; all of 40 at his death, he presented the brain of an 80-year-old, punch-drunk boxer.
Having emphatically made his point, in a series of page-one bombshells, about the price being paid in collision sports, Nowinski could have honorably quit the scene for a lucrative job in biotech. (He was working part-time as a management consultant.) Instead, he went all in on head trauma, co-founding, with his friend and mentor Cantu, the Boston-based Sports Legacy Institute (SLI), a high-profile firm committed to ending the concussion epidemic and finding a cure for the related illnesses. Beginning in 2007, he single-handedly built a brain bank, cold-calling the families of hundreds of dead athletes and persuading many of them to donate tissue. Cantu, for his part, recruited McKee to perform the neuropathological studies, forging an alliance with Boston University to create the Center for the Study of Traumatic Encephalopathy, which received a $1 million gift from the NFL in 2010. That gift, among others, grew the scope of their inquiry: What the researchers have learned from their investigations these last couple of years has stunned everyone, including themselves.
"We started out thinking concussion was just a metabolic injury," meaning a short-term shift of neural compounds, says Cantu. But looking at distinct groups of teenage athletes who'd suffered sports concussions (kids who'd died by suicide, as well as those from second-impact syndrome), they saw structural changes in the brains of both cohorts: early, focal pockets of CTE, in some teens, and long-term swelling of the axons. That dovetailed with the data from brand-new studies on boys during football season; it showed permanent damage in seemingly healthy teens who had never had a recognized concussion. This meant that every hit mattered, from peewees on, and counted toward an unknown threshold number past which brain cells began their die-off. "I've seen serious cognitive injuries in a nine-year-old boy," says Cantu of a Pop Warner player he treated. "He lost the ability to remember names, as well as math and vocabulary, for the better part of a year. I never felt comfortable letting him play collision sports again."
Though Cantu has also tended to dozens of pro athletes, some of whom have had "over 50 concussions in the course of their careers," the thrust of his concern is school-age kids, whose risk for harm is grave and growing more so. Part of this owes to the professionalizing of hobbies: Kids now play and practice one or more sports eight to 10 months a year, so there's much more exposure to blunt-force trauma – and much less downtime to heal. The other factor is basic physiognomy: Kids have gotten bigger and faster in the past decade but lack mature muscle in and around their necks to brace for the hits they see coming, so the whiplash damage is more severe than in men who've built bull necks. "Kids' heads are almost full size by the age of four, but their musculature obviously isn't, so you get the bobblehead effect on the brain," says McKee. This is especially true for girls in contact sports: They're twice as apt as boys to sustain a concussion playing soccer, lacrosse or ice hockey. And those games pale beside the mother of head trauma: competitive cheerleading meets. In 2011, 37,000 cheerleaders were taken to ERs, many from being dropped on, or kicked in, the skull during aerial maneuvers. Only football results in more catastrophic injuries – and those boys have the benefit of helmets.
Clearly, things must change, and better equipment isn't the answer. "The best helmets in the world don't stop rotational forces, where the brain whips around and snaps back," says Cantu. Nor, despite the efforts of SLI and its counterparts around the country – the Brain Injury Research Institute, headed by Omalu, Dr. Julian Bailes of Chicago and Fitzsimmons, the West Virginia lawyer; the Brain Injury Research Center at UCLA, directed by the neuroscientist Dr. Dave Hovda, whose work on setting protocols for blast-injured soldiers has saved countless troops from permanent brain woes – are scientists much closer to a drug or hormone that will mitigate the fallout from concussions. Trials are under way for anti-tau compounds that may or may not break up toxic bundles, but earlier versions have been rousing busts in the grail for a dementia drug. There's more cause for hope on the detection front: New scanners being tested have been able to spot tau in the deep-brain folds, with the help of a radioactive compound. When and if they're approved by the FDA, the devices could alert young athletes and their families long before the onset of CTE. "If we identify it early, we can maybe arrest it just by stopping the activity that caused it," says Cantu.
Still, the best prognosis is to avoid it altogether, and there's slow but steady progress along those lines. A search is well along, at SLI and elsewhere, for the bio-markers of mild brain trauma, proteins found in blood or spinal fluid that tell doctors of an unhealed concussion. "Again, given time, most brains heal themselves and don't start the pathogenic process – even after multiple concussions," says Cantu. But that, of course, opens a great conundrum: Why do oft-concussed quarterbacks like Steve Young and Joe Montana appear perfectly lucid in their fifties, while men with fewer recognized knockouts develop dementia at that age? "Clearly, there's genetic variability here, just as it's harder to knock certain men out than others," says Cantu. "We're trying to identify those genetic factors, so that if a kid tests positive for the markers, his parents can hold him out of contact sports."
However, all this is probably years, and many millions of dollars, away, and meanwhile, the carnage goes on. When eight-year-olds are hitting each other – in tackle practice – with roughly the same G-forces as college players, what's badly needed is a paradigm shift, a universal up-draft in thinking. Happily, there are signs. Forty states have passed legislation modeled on the Zachary Lystedt Law, so named for a 13-year-old boy in Washington state who nearly died from second-impact syndrome. It requires that everyone connected with school athletics (parents, coaches and the players themselves) be educated in the symptoms and perils of concussions; that any child suspected of having a concussion be pulled from the game or practice field, and that he or she be barred from returning to play until cleared by a physician. The NFL has thrown its weight behind the law; Commissioner Roger Goodell has urged the governors of holdout states to enact Lystedt or similar legislation. And heavy grassroots work by Nowinski and others has helped spread the gospel about concussions; they go town by town and school by school. Finally, SLI developed a hit-count program for kids, aimed at reducing the number of full-pad practices at every level of youth football. "We've put in pitch-count limits to protect kids' elbows," says Nowinski. "Why wouldn't we do likewise to protect their brains? Isn't that the obvious place to start?"
Well, obvious to kids and a growing number of coaches, who've been open to the idea of limited hitting. The door slams shut, though, when talking to parents, many of whom insist on toughening their sons for NFL careers they'll never have. "Whether it's starting kids later or doing fewer drills, we hear the same thing over and over," says Cantu. "It's 'I'm not signing him up for flag football. My kid needs to learn how to tackle.'"
For the first two years after Eric died, Joan sat on her couch in a nimbus of grief, surrounded by pictures of her son. There were many months of counseling in a group for bereaved families, and a deep bench of friends dropping by with food to fill the empty hours. It took all her strength, though, to get Jenna off to school and drive her to her dance lessons; everywhere else, people asked how she was doing, attempts at consolation that pricked her heart. A private woman and a devout churchgoer with no taste for media attention, Joan declined to go public about his CTE, though as the then-youngest person to contract the disease, Eric's case was important medical news. (Nathan Stiles, 17, has since supplanted him.) Meanwhile, his tissue sat in fixative at the CSTE brain lab. On the SLI website, he was identified only as John Doe, High School Football Player.
When her sadness began, at length, to lift enough to return to some version of her life, Joan decided to tour Bedford and come to terms with Eric's remains. But as she browsed the SLI website, she was pained by the thought that he was anonymous. She saw less and less sense in keeping silent about CTE; there was a duty to other mothers to speak out. Last spring, she phoned Cantu and asked to change the case heading: "I needed Eric's name on the record." Around the same time, she got a call. Katie Couric wanted to fly her to New York and tell the story of her son.
In the greenroom during the taping, Joan and Cantu met the family of a 16-year-old girl with PCS. A New Jersey hockey player who'd suffered three concussions, the girl, like her mother, was deeply concerned about playing the game again. Not so her gung-ho father, who insisted she return when doctors cleared her. "He was being a real jerk about toughing it out and getting a scholarship to college," says Joan. "I could feel my blood boil as we waited there. Luckily, Dr. Cantu did the talking."
After she and the doctor filmed their segment, they went back to the greenroom. Watching on the monitor, the girl and her mother had been deeply impacted by Eric's story. They asked Cantu for advice; he answered with a question: What were the girl's dreams in life? "She said, 'I want to be a doctor.'" Cantu looked at the girl's father and said, "She'll need every healthy brain cell that she has." The man glared back and said, "You haven't convinced me. I'll need more evidence than that."
Joan, a mild woman stirring cream into her coffee, turned purple recalling the exchange. "I wanted to say to him, 'What more evidence do you need? Isn't my son's death enough?'"
This story is from the January 31st issue of Rolling Stone.
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