League of Denial (37 page)

The primary goal outlined by Nowinski was to acquire more brains. He laid out a list of “Current Problems,” including no formal process for gathering specimens. In the first two cases, the brains had essentially fallen into Omalu’s lap, he noted. The third was acquired “solely on the efforts of one curious researcher”—himself. Nowinski also identified the potential for competition: “This is cutting-edge, groundbreaking, and controversial with real financial consequences for many parties. With the recent media attention surrounding the issue (NY Times, Wash Post), there will likely be new entrants to the field without pure research intentions.”

Aligning with a university would give them credibility, Nowinski wrote, which would help as they cold-called families and medical examiners who wondered if they were “credible or crackpots.”

Nowinski’s two potential candidates to house the institute, both based in Boston, were the Massachusetts Alzheimer’s Disease Research Center at Massachusetts General Hospital, which already had a brain bank with 1,000 specimens, and the Harvard Brain Tissue Resource Center at McLean Hospital, which held 6,000 brains. Nowinski noted that separate funding would be needed to pay for a “primary investigator” to find brains and develop an “automated program.”

Nowinski and Omalu
tossed around names for the organization before settling on the nonthreatening Sports Legacy Institute. They also wanted to come up with a catchier name for the disease itself. CTE was fine as an acronym, but Nowinski and Omalu wanted a name the media and players would embrace. Nowinski e-mailed Omalu some suggestions, trying to work the initials NFL into the disease: necrotic football
linked dementia, neurofibrillar football linked dementia. But Omalu responded: “These names seem too long and do not have that sting to them.” Nowinski tried again: (1) Football-induced CTE (FI-CTE), (2) Neurofibrillary Football Linked Dementia, (3) Footballer’s Dementia (FD), and (4) Mike Webster’s Disease. Later, Omalu sometimes referred to the disease as gridiron dementia.

To give their team additional firepower, Nowinski brought in Cantu, the man who had inspired his activism. “Remember, of anyone that you speak with in this entire business,
he can be trusted most of all not to share confidential information or take ideas. He’s already The Man,” Nowinski wrote Omalu. For his part,
Omalu brought in his own champion, Bailes. For legal advice, they added Bob Fitzsimmons, the head coach of Team Webster, who had taken the NFL disability board for $1.8 million. Barbara Jones, an attorney who had been Nowinski’s agent on his book
Head Games
, also briefly came on board.

After the Waters story, Nowinski and Omalu had become sought after, in demand for media interviews and conferences. In late April, two months before the NFL meeting in Chicago, Leigh Steinberg, the agent, had
resurrected his own concussion summits from the mid-1990s, aware that his earlier efforts had generated a lot of discussion but little change. The concussion crisis had come full circle. Nowinski and Omalu were invited to make a presentation, as were Cantu, Bailes, and Guskiewicz. Lovell was the only member of the NFL committee to attend. Invitations were sent to the commissioner’s office, the NFL Players Association, and owners and trainers from every team. None accepted.

Steinberg excavated some of his material from a decade earlier, describing concussions as “a health epidemic, the consequences of which are a
ticking time bomb that may not be seen in their totality for 10, 15 or 20 years.” He continued: “What are the stakes? It’s one thing to go out and play football and understand that when you turn 40, you can bend over to pick up your child and have aches and pains. It’s another thing to bend down and not be able to identify that child.”

But it was Omalu who had a far
more disturbing story to tell. He put together a PowerPoint slide show for the scientists, players, and media to complement his presentation, “The Neuropathology and Delayed Sequelae of Concussion in NFL Players.” If people thought
they were in for a jargon-filled description of neurofibrillary tangles and beta-amyloid plaques, they were mistaken. Omalu opened with a series of autopsy photos. First came Webster, naked from the waist up, right eye open, left eye closed, and Frankenstein-like sutures along each of his arms. Next was Terry Long, also naked from the waist up, eyes slightly open, his tongue drooping out of his mouth. Omalu didn’t show Waters only because Waters had blasted a hole in his head.

The pictures shocked many people in the audience, even the scientists who had examined their share of dead bodies. Many felt Omalu had crossed the line. “Some of us knew it was in poor taste,” Nowinski said. But Omalu felt this was the nature of his business and an effective way to convey his message. It would not be the last time he showed pictures of dead players in a public setting.

When Nowinski gave his presentation, he used the name for football-induced brain damage that he and Omalu had settled on for the time being: neurofibrillary football linked dementia—NFL dementia.

By then, the newly formed Sports Legacy Institute had its
sights on the brain of another player: Justin Strzelczyk (pronounced STREL-zik), yet another former
Steelers offensive lineman. Strzelczyk had died two and a half years earlier at age 36 after leading police on a 37-mile chase on Interstate 90 through central New York. The chase concluded with Strzelczyk driving his pickup truck across a median at 100 miles per hour and colliding head-on with an oil tanker. He was killed instantly in the explosion. Strzelczyk had experienced a Webster-like transformation. He had played 133 games over nine seasons in Pittsburgh, retiring in 1998, but by the time of his death had become nothing like the free-spirited, goofy, intelligent man who had been beloved by family, friends, and teammates. Instead, he was paranoid and delusional, devastated by financial troubles and a failed marriage.

Bailes had been with the Steelers when Strzelczyk played; his death, like Webster’s, had stunned him.
He remembered Strzelczyk as a “fun-loving guy” who would tool around on a Harley, play the banjo, and carry around a bag of candy to distribute to kids “like some modern Santa Claus.”

“His death really troubled me,” Bailes said.

Now, as the Sports Legacy Institute sought brains, Bailes had a
hunch. He wondered if any of Strzelczyk’s brain tissue had been preserved during his autopsy. That led to a call to the medical examiner, who confirmed that he had kept some of the tissue.

Two months later,
Schwarz had another story, this one on the front page of the
Times’
sports section announcing that Strzelczyk had signs of “brain damage that experts said was most likely caused by the persistent head trauma of life in football’s trenches.” Among the experts quoted were Omalu, Bailes, and Ron Hamilton, Omalu’s mentor, who had played such a critical role in the validation of Omalu’s original work. Hamilton, the story said, had confirmed Omalu’s findings on Strzelczyk. He told the newspaper: “This is extremely abnormal in a 36-year-old. If I didn’t know anything about this case and I looked at the slides, I would have asked, ‘Was this patient a boxer?’ ”

That story also became the forum for Nowinski, Bailes, and Omalu to formally announce the creation of the Sports Legacy Institute. They couldn’t have done it better with a press release. Nowinski described his plan for a nonprofit organization based at a still-unidentified university.

“We want to get an idea of risks of concussions and how widespread chronic traumatic encephalopathy is in former football players,” Nowinski told the
Times
. “We are confident there are more cases out there in more sports.”

To date, the NFL’s efforts to shoot down the theory that football caused brain damage had not gone well. Those efforts included—but were not limited to—demanding a retraction from leading experts in neurodegenerative disease, making public statements in an attempt to discredit independent researchers, and convening a Concussion Summit in which the cochair of the NFL’s concussion committee mocked one of the nation’s top neurosurgeons in front of the new NFL commissioner as he showed slides of diseased former players.

The NFL needed a new strategy. Ira Casson and his colleagues on the league’s concussion committee decided to bring in their own independent expert to examine Omalu’s work—if, of course, he was willing to subject it to further scrutiny. The cases already had been validated by numerous researchers, including Bailes, who had been dispatched by the American Association of Neurological Surgeons.
Bailes continued to be
shaken by what he had seen. These weren’t just case studies that Omalu was presenting; they were human beings Bailes had known personally during his days with the Steelers, people who had spent time with him and his family.

The night of the memorable meeting with Maroon—“Bennet, do you really understand what this means?”—Bailes’s wife, Colleen, found him in his basement office, still staring at the slides of Webster’s brain.

“This is a sad day for the NFL,” Bailes told her.

Bailes had met Colleen in Pittsburgh when he was working for Maroon and she was working as a cardiothoracic nurse in the intensive care unit at Allegheny General Hospital. He knew she would understand. As they sat in the basement, Bailes first showed his wife a slide of a normal brain, then one of Webster’s, splotched with the tau protein that had caused him so much pain.

“Here’s Mike, our dear friend. Here’s his brain,” Bailes told Colleen.

She, too, was crestfallen. “For me, it was just really sad to have it come down to a slide of somebody who I knew,” she said. “There it was: on a slide. It was just sad. And then he was the first. Little did we know others would follow.”

But the NFL still wanted its own opinion.
Casson set out to find an independent expert. He didn’t have to look far. Casson had an affiliation with Long Island Jewish Medical Center, part of the North Shore–Long Island Jewish Health System. He was aware that North Shore–LIJ recently had opened an Alzheimer’s Center. Its director was Peter Davies,
a leader in Alzheimer’s research. Davies was also recognized as an expert in tau, the protein at the heart of the CTE debate.

Casson contacted Davies and asked if he would assess Omalu’s research and report back to the NFL committee. Davies agreed and soon afterward
met with the committee at the NFL’s headquarters on Park Avenue. Davies told the doctors he couldn’t tell much from Omalu’s papers in
Neurosurgery
; they showed just one picture from one slide that revealed one neurofibrillary tangle. Davies was baffled and annoyed; he never would have published a paper with so little evidence. He needed to see multiple regions with multiple stains of brain. Davies was skeptical of the finding, and it was clear to him that he wasn’t alone.

“I think there was a really high level of skepticism” on the committee,
Davies said. “And in fact, you know, the thought of real exaggeration that [Omalu] was making a mountain out of one picture of a tangle.”

“I need to see the tissue that Omalu took the pictures from,” Davies told the committee.

Maroon, who had been added to the committee amid the turmoil, volunteered to serve as a liaison. That made sense: He lived in Pittsburgh, knew all the players, and had seen the slides.

Casson offered to pay Davies, but Davies declined. He wanted to avoid even the appearance of a conflict. “If you want my opinion, you’ll get what I think, not what you pay for,” he told Casson.

A few weeks later, Davies found himself seated in a large conference room at
West Virginia University with Maroon, Bailes, and Omalu. By that point, Omalu had obtained brain tissue from six NFL players and two professional wrestlers. Omalu was wary. He saw Davies as a researcher, not a real-world forensic pathologist. He was a scholar, not a doctor. At that point, Omalu wouldn’t have trusted anyone sent by the NFL. For his part, Davies saw Omalu as an overzealous coroner slightly out of his depth. The role of a medical examiner was to determine cause of death, not identify new diseases. He thought Omalu’s research and staining were crude, not up to his standards. Later, he noted that Omalu, of course, wasn’t a neuropathologist. When informed that in fact Omalu was, Davies exclaimed: “Wow, that’s surprising! I didn’t know that.” It wasn’t necessarily a recipe for agreement.

Yet the more Davies analyzed the slides, the more astonished he became. It was clear that Omalu was on to something big. Davies confirmed that what Omalu had found was definitely not Alzheimer’s or any other disorder he had seen. The pattern of tau was unique, the tangles everywhere.

“It was obvious there was something there,” he said. “I knew there was something going on.”

Davies wanted to take the tissue back to his lab. He told Omalu that his lab could provide a more exacting level of staining. Omalu panicked. Should he really give up tissue to someone who had been hired by the NFL? But he agreed, telling Davies he would get him whatever he needed.

“I knew if they destroyed my slides, that was a good opportunity for me to sue them and become a multimillionaire,” Omalu said.

A few days after the meeting, Maroon, now seemingly a convert, sent Omalu an e-mail of thanks: “The personal effort you made to meet with us is deeply appreciated. Like Socrates, you have been a major ‘gadfly’ (in a complementary sense) in stimulating and provoking a more detailed examination in the underlying pathophysiology of TBI in sports.” One day later, Davies wrote to Omalu: “I remain convinced that you have discovered something, a new phenomenon.… This discovery could prove of great importance to the field of neurodegenerative disease research.”

Davies kept the NFL committee informed of his progress, forwarding his correspondence with Omalu to Casson and Maroon. At one point, Omalu suggested that he and Davies pursue research together, a suggestion that Davies encouraged. Casson tried to warn him off: “I would suggest great caution regarding Dr. Omalu’s proposed paper.”

Once back in New York, Davies received the tissue from Omalu. His lab began to process it. The NFL and Casson were eager to hear the conclusions of Davies’s study. “Do you have any information regarding your staining of Dr. Omalu’s material yet?” Casson wrote. “We are all very anxious to hear about your findings.” A few weeks later Casson checked in again: “How is your analysis of the slides going? I am very interested in hearing about your findings.” And then, a few days after that: “Dear Peter, I am really looking forward to your report.” Omalu, too, was on pins and needles. The early signs had been positive, but he wasn’t sure what would come back now that Davies had the material to himself. “Should we expect the results soon?” he wrote.