League of Denial

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League of Denial Page 30

by Mark Fainaru-Wada


  Within a year, Nowinski had merged SLI with the Boston University School of Medicine to form the Center for the Study of Traumatic Encephalopathy. When that organization’s website was created, it featured a history titled “Our Story.” SLI was described as a “non-profit organization that was founded on June 14, 2007, by Christopher Nowinski and Dr. Robert Cantu in reaction to new medical research indicating that brain trauma in sports had become a public health crisis.”

  Omalu, Bailes, and Fitzsimmons found themselves erased from history, as if they’d fallen victim to a coup. There was no mention of Bailes’s labors or Omalu’s research or even Fitzsimmons’s $10,000 that had helped launch the organization that was now based in Boston.

  To the world at large, the power struggle would have been unremarkable except for the consequences: It would determine who owned the issue of football and brain damage, a subject that continued to pick up steam.

  The NFL was playing defense. Goodell’s Concussion Summit in Chicago had been a disaster. Behind closed doors, the conference had only widened the chasm between the league and the Dissenters; publicly, it offered choreographed platitudes and nothing more. Coaches and parents were beginning to express concerns about the implications for youth sports. The specter of a lawsuit had suddenly become very real. When Nowinski and Omalu banded together to form the Sports Legacy Institute, they created an organization that would serve as a national voice for an issue that touched millions of Americans. Now divided, the two men and their associates were left to compete over attention, money, and brains.

  In this respect, Omalu, Fitzsimmons, and Bailes had badly underestimated Nowinski. The savvy young activist had them outgunned. Through his relationship with Alan Schwarz, Nowinski had a direct pipeline to the New York Times, the most influential newspaper in the country. In Cantu, he had the support of the nation’s preeminent concussion expert, a doctor with vast reserves of historical knowledge and an intimate understanding of the NFL’s flawed research. Nowinski’s alliance with Boston University was a masterstroke. It gave him instant credibility and access to the university’s resources, including money and personnel.

  Nowinski had made the connection through Bob Stern, a professor of neurology and neurosurgery at BU who also served as codirector of the school’s Alzheimer’s Disease Clinical and Research Program. Nowinski asked Stern if he could come by his office one afternoon to explain his new endeavor: an organization focused on athletes, especially football players, who appeared to have a form of dementia. Listening to Nowinski talk, “I had this gigantic reaction: I said, ‘Oh, my God,’ ” Stern recalled. Stern found it “unbelievably fascinating from a public health standpoint, because if that’s the case, football as we know it is going to be in trouble. And number two—and I think what turned me on most—was this is a disease that hasn’t really been looked at. It immediately dawned on me that here’s something that was a lifetime of research.”

  As the project began to gel, one key ingredient was missing: Nowinski needed someone to examine brains. In other words, he needed another Omalu. Stern could help there, too.

  “Have I got a neuropathologist for you,” he told Nowinski.

  Her name was Ann McKee. Stern knew her from the Framingham Heart Study, a legendary project launched by BU and the National Heart Institute in 1948 to study heart disease in Framingham, Massachusetts. The study had continued through generations, branching out in different directions. McKee had studied the brains of Framingham patients after they died in an effort to map the origins of Alzheimer’s disease. She had spent the previous two decades studying the intricacies of the tau protein, trying to figure out how the tangles first begin to form in Alzheimer’s patients.

  If Hollywood talent scouts set out to create a reality series on the search for football-related brain damage, they would start with Ann McKee. She was in her fifties, with blond hair and blue eyes, a Green Bay Packers nut from Appleton, Wisconsin, with a girlish giggle and a knack for making the brain accessible and fun. Describing how she removed the brain for study, McKee would say: “The brain is very delicate. You can’t just pull it out or yank it out like sometimes you do with those other organs. You have to really deliver it. I mean, we deliver it like we deliver a baby.” Seeing a fresh brain for the first time is “always a little bit like Christmas or your birthday,” she said. “It’s like, ‘What do we have here?’ ” Watching the telegenic McKee slice into a formalin-fixed brain was a little like watching Rachael Ray carve up a cured ham.

  McKee hailed from the sporting heartland of America. In 1986, Sports Illustrated dedicated 33 pages to Appleton in a search for the “essence of sport in mid-sized American towns.” Appleton was “a town without a major league team or a major league garbage strike, a town that breathes clean air, sips fresh lemonade, does its shopping downtown and, with considerable relentlessness, pursues recreation when the workday is done.” McKee was not an athlete, but she was surrounded by them. Her father had played football at Grinnell College. Her older brother Chuck, whom she idolized, had been a three-sport athlete who turned down a scholarship at Wisconsin because he didn’t want Division I football to distract him from becoming a doctor. He played quarterback at nearby Lawrence University, leading the Division III school to consecutive conference titles and earning All-America honors. McKee had been a cheerleader at Appleton East High. A tomboy, she played backyard football with her siblings and served as their regular punching bag. “Oh, Annie has her tough clothes on,” the boys would announce, and then pounce on their baby sister.

  McKee attended Wisconsin at a time when the university was the Berkeley of the Midwest, the heart of the region’s counterculture movement. “I embraced it!” said McKee, laughing. A painter, she majored in art and married a musician. Neither her major nor her marriage lasted very long. She decided to follow her brother and become a doctor, enrolling in medical school at Case Western Reserve University in Cleveland. It was there that McKee developed her love of the brain. She found it endlessly fascinating, the source of all humanity. Everything else in the human body was “other stuff”; skin was facade. During autopsies, McKee liked to point out, “the face is actually inverted. That’s a shock because everyone thinks their face is really, really important. But our face is just a layer of skin that you can actually roll down. And then you see the bony skull exposed, and you cut the skull and you lift off the skullcap, like a bowl. And then there’s the brain: pink and gooey and gelatinous. It’s kind of soft. If you poke it, you know, it’s not rigid. And it’s hard to believe that thing is what’s controlling all this other stuff, that gooey, kind of pink thing. That’s a real shock, I think.”

  McKee gravitated to neuropathology. She saw a connection between her interest in art and the patterns of brain disease. When she looked at the spread of tau, the tangles that strangled brain cells in the protein’s destructive march, she couldn’t help but admire it. She used words like pretty and lovely to describe the infinite patterns that tau formed, its “beautiful involvement” with neurons, even while recognizing the stark contrast between the disease’s visual appeal and the havoc it wreaked on a person’s life. “I was a fanatic about tau,” McKee said.

  That made her perfect for Nowinski. McKee would have a unique understanding of CTE, a tau-based disease, but she was the anti-Omalu. Omalu couldn’t tell the Super Bowl from a cereal bowl, but McKee’s entire life was steeped in football. Appleton is about 30 miles southwest of Green Bay, and McKee, almost by osmosis, had become a lifelong Packers fan, parking herself in front of the set every Sunday wearing an Aaron Rodgers jersey and a cheesehead. McKee also worked for the Department of Veterans Affairs. Her cluttered office at the redbrick VA complex in Bedford, Massachusetts, outside Boston, was filled with Packers memorabilia; she kept a Brett Favre bobblehead doll on her desk.

  During her Alzheimer’s studies, McKee had stumbled across a case involving a former boxer with dementia pugilistica. “I’ve been looking at oranges for years, and all of a sudden it wa
s like, this is a banana,” she said. “It was just thrilling.” Later, she came across a fascinating presentation by Steve DeKosky, a fellow Alzheimer’s researcher. It was the Webster case: “Chronic Traumatic Encephalopathy in a National Football League Player.” McKee was jealous. She didn’t recognize the principal author, Omalu, but the case fit the same pattern she had seen in the boxer. “I was really wishing I had that case,” she said. She thought she could do better.

  “Sorry!” she said, smiling sheepishly. “That’s just my own … I thought I could do a much better job of lining up the pathology and really understanding it.”

  She looked for other cases, but they were hard to come by. Until now. Out of the blue, here was Chris Nowinski, telling McKee she could probably have as many Christmases as she wanted. Nowinski said he would go out and get the brains for her. McKee found him “handsome” and “impressive,” a man of action around the same age as her kids. She couldn’t believe her good fortune. She was fascinated by this area of research, and it involved football, a sport she loved. The players were her heroes. She might be able to help them, she thought.

  “Yes! I would love to do that,’ ” McKee told Nowinski. She thought it was “like the greatest collision on earth.”

  Nowinski got McKee her first brain in February 2008. It belonged to an ex-linebacker named John Grimsley who had played in the NFL from 1984 to 1993, mostly with the Houston Oilers. Grimsley had a reputation as a hard hitter with a mean streak, the prototypical linebacker. When he retired, he launched World Class Expeditions, a company that organized hunting and fishing trips to places such as Texas, Mexico, and Argentina. For a time, Grimsley’s business thrived, as did his relationship with his wife and his two sons. Then he began to lose his mind.

  About a decade after Grimsley left the game, his wife, Virginia, who had been with him nearly 25 years, started noticing changes in her husband. First came short-term memory problems—forgetting why he went to the store, renting the same movie over and over. Then came the mood swings—anger and irritability. Grimsley always had been easygoing, relaxed with his family; now he would lose his temper without any warning or provocation.

  The light bulb went off for Virginia Grimsley in May 2007. She and her sons happened to watch the HBO segment on football and brain damage that became famous for Ira Casson’s denials, turning him into the NFL’s Dr. No. But Virginia was less interested in what the NFL thought than in the description of the addled former players and their symptoms. “Mom, Dad is doing that already,” her sons told her, and they were right.

  Nine months later, Grimsley was dead at 45. He had shot himself in the chest. Police ruled it an accident. It appeared that Grimsley had been cleaning his pistol. Virginia told the Houston Chronicle that her husband, although he ran hunting trips for a living, had bought a new handgun with which he wasn’t familiar. “Anyone could tell you that John would not take his own life,” she said. “He was a happy guy. We had no financial problems, no marital problems, and the kids were doing well.”

  Two days later, Nowinski called.

  When McKee got hold of Grimsley’s brain, she was excited. Here finally was her chance to see for herself what was going on with these football players. Despite the previous studies on CTE, she needed to be convinced. “I trust my own work more than any other person’s,” she said. As she processed the brain, staining it for tau, she had no idea what it would look like. She thought the results might be inconclusive, reveal some other disease, or prove to be nothing at all.

  Still, McKee was unprepared for what she saw when she peered into the microscope. She was stunned. This was the brain of a 45-year-old man, far less mature than the brains she typically saw in the Framingham Study. There was tau everywhere, “like disease on steroids,” but unlike Alzheimer’s, there was no trace of beta-amyloid, one of the main components of that disease. McKee would never forget that moment. In that respect, she was like Omalu, Hamilton, DeKosky, and Davies when they got their first glimpse of CTE. All had the same reaction. “It was like a scientific discovery,” she said. “You feel like, ‘Oh, my God!’ ”

  Her first call was to her brother Chuck, the doctor. He had a family practice in Wisconsin and also was working as team physician at Lawrence University, his alma mater.

  “You won’t believe this,” she told him.

  She explained the disease she had found in John Grimsley’s brain—the brain of a nine-year NFL veteran. It looked just like dementia pugilistica, she told her brother. The brain was riddled with disease, and he was just 45! Chuck’s response would stick with McKee for years: “This is going to change football,” he told her.

  For his part, Chuck remembered not his own response but that of his sister, who seemed to grasp immediately how the news would be received. McKee didn’t know Omalu and hadn’t seen the NFL’s attack on him, yet she sensed that many people would not be happy with her. “I think she had this feeling of, ‘Oh, there are going to be a lot of people who really don’t want to hear this and are going to be upset,’ ” said Chuck.

  The case marked the coming out of Nowinski’s reconstituted Sports Legacy Institute. Schwarz broke the story in the Times, revealing not only that SLI would announce the Grimsley findings at a press conference the next day but that the organization had established its own brain bank with Boston University. A dozen athletes, including six former NFL players, had pledged to donate their brains to SLI/BU upon their deaths. Among them was Ted Johnson, the ex-Patriots linebacker who had alleged that Bill Belichick had “played God” with his health. Johnson told Schwarz: “I’m not trying to reach up from the grave and get the NFL. But any doctor who doesn’t connect concussions with long-term effects should be ashamed of themselves.”

  The NFL, meanwhile, announced that its own study of the long-term effects of pro football probably would come out in 2010—16 years after the Mild Traumatic Brain Injury Committee was formed.

  As Nowinski and his eager new neuropathologist were making news on the disease that Omalu had discovered in football players, Omalu was in Lodi, California, examining brains in his garage.

  Omalu had beat a hasty retreat from Pittsburgh, a city he loved, after a Shakespearean drama that found him testifying in court against his mentor and father figure, Cyril Wecht. The celebrity pathologist had been indicted on 84 counts of abusing his position as Allegheny County coroner. Omalu became a star witness for the prosecution because Wecht, among other things, was charged with using his office to conduct private medical consultations and autopsies for personal gain—the same autopsies Omalu had performed for $300 a case, while Wecht, Omalu alleged, earned $5,000–$10,000.

  Omalu was thrust into an impossible situation: He could testify for the government—and against the man he idolized—or he could refuse and face the possibility of being deported or even indicted.

  “I was scared shitless,” Omalu said.

  Wecht understood Omalu’s predicament—to a point. “His ass was going to be sent back to Africa; you know the way the feds work,” he said. Omalu understood that Wecht didn’t want him to testify. “He believed I should have sacrificed myself for him,” said Omalu. Feeling like the world was closing in, Omalu quit his job and went into hiding. When the case went to trial, he testified for three excruciating days. Wecht never spoke to Omalu again, even after the trial resulted in a hung jury and the charges were later dismissed.

  Omalu eventually landed a job as chief medical examiner in San Joaquin County, California, an agricultural hub about 80 miles east of San Francisco. While Nowinski gained power and recognition through his alliances with Boston University and the New York Times, Omalu and his colleagues were scattered around the country. The remnants of the Omalu Group re-formed as the Brain Injury Research Institute, a generic-sounding name they all vaguely disliked. The group was based in Morgantown, West Virginia, where Bailes continued to work as chairman of the neurosurgery department at West Virginia University. Fitzsimmons was still putting in 16-hour days in his Wheeling
firehouse-office. The Brain Injury Research Institute’s designated brain chaser became Garrett Webster, operating out of the two-bedroom apartment he once had shared with his dad in Pittsburgh’s Moon Township.

  There had always been a vampirish quality to the business of CTE. To survive and prosper, the researchers were on a constant search for fresh brains. But with concern about the disease growing, along with opportunities for money and prestige, the competition, now involving two research groups, grew more intense and macabre by the day. On May 25, 2008, another former NFL player died young: Tom McHale, 45, a 6-4, 290-pound offensive guard who had spent nine years in the league before retiring after the 1995 season. He died of a drug overdose. The story was too familiar: A successful restaurateur after his retirement, a Cornell graduate, at the time of his death the once thoughtful and friendly McHale “was very, very different from the guy I married,” his wife, Lisa, said. “It was like he was a shell of his former self.”

  The brilliant smile, the charisma, and the polished presentation all disappeared, replaced by the often vacant and disheveled look of a man who no longer cared. Even more than becoming a football player, McHale had aspired to run his own restaurant. It was his passion, and he loved everything about it, from the cooking to the customers. Then one night, lying in bed, McHale told Lisa, “I’m not enjoying the restaurant business anymore. I think I want to get out.” She couldn’t believe it. The restaurant was “his baby, his brainchild.” Gradually, McHale lost interest in everything. He stopped cooking and no longer went skeet shooting or bike riding. He began to distance himself from the people he loved.

  The Omalu Group got to McHale’s family first and made its pitch. Then BU stepped in and “convinced the wife to split the brain in two,” Bailes informed the group in an e-mail. About a week later, Nowinski called Omalu to suggest that the two groups work together on this case. McKee and Omalu would analyze the tissue and then jointly contact Lisa McHale with the findings before making the announcement together. In fact, that was the scenario many researchers thought most appropriate. Sharing tissue and conducting independent analyses would help ensure the accuracy of the findings and provide a deeper understanding, especially for a scientific phenomenon that was not well understood.

 

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