“An African American called me to say that effort is pretty much code,” Omalu said. “Like calling me the 'N' word.”
He believes the controversy regarding the naming of the disease is a matter of semantics that has been used to hurt his reputation. While the characteristics of CTE were mentioned in medical literature years prior to his discovery, he said no one had named it as a disorder until he discovered it in the brains of deceased football players. The degenerative condition is caused by repetitive hits to the head and is seen over time through changes in mood and behavior and deterioration in cognition.
Omalu, who now is chief medical examiner of San Joaquin County, Calif., said he endured similar attacks during the many years he spent fighting to be heard while NFL officials denied any issue existed. He received emails with racist undertones. "It was ugly and un-American,” he said.
Omalu's story, as told in the movie through actor Will Smith, begins when he was a protégé of renowned pathologist Cyril Wecht. It was 2002, and Omalu knew little about the game of football and had no idea who Mike Webster was until Iron Mike, as he was known from his days of Pittsburgh Steelers fame, appeared on his autopsy table.
Webster, who'd died of a heart attack, had exhibited crazy behavior at the end of his life. Once wealthy and married, he had become homeless and paranoid. His hands were deformed, and he would self-medicate to get pain relief and would taser himself so he could sleep. He was confused, once urinating in his oven. He would super-glue his teeth back in when they fell out.
Omalu was shocked to find no evidence of trauma in Webster's brain. In what Omalu recalls as his most important move, he decided to "fix the brain" in order to study it.
And so began his discovery of CTE. First in Webster's brain, and later in the brains of Steelers Terry Long and Justin Strzelczy, Andre Waters of the Philadelphia Eagles and many more. Most recently, CTE also was found in the brain of former Hall of Famer Frank Gifford.
“I did not want to believe it. Not in America--with the highest concentration of brilliant minds, and for crying out loud you are talking about the most popular sport in America and yet no one figures it out,” Omalu said. “It took a foreigner like me who knew nothing about football or NFL to figure it out.”
It turned out the science was simpler than the politics. The NFL dismissed Omalu's findings. He lost his job. He heard racial epithets. Not until Julian Bailes, played in the movie by Alec Baldwin, got involved did people began to take the research seriously.
Bailes, who chairs the Department of Neurosurgery and co-directs the NorthShore Neurological Institute in Illinois, had shared evidence of cognitive problems and early dementia in former football players to the American Academy of Neurology in 2000. He reached out to Omalu, recognizing that he had proof of his findings, and presented the pathologist's evidence at an NFL concussion meeting from which Omalu was excluded.
Omalu said Bailes came to him and said, “I believe you.”
“I was all alone and he stood like a friend and supported me. Took hits for me,” Omalu said.
"It was a long, difficult journey to bring the science forward, but at the end I think and I hope it showed the process of science has been vetted," Bailes, a former team doctor for the Steelers, said in a separate interview. "It shows the science was accepted and the process works. Changes have been made and hopefully the sport is safer."
But the process took an emotional toll. Omalu spent his own money researching CTE and meeting with the families of many of the deceased players whose autopsied he had performed. He recalls leaving the living room of Andre Water’s mother and weeping as he wrote notes about their discussion. It was a culmination of all the players he knew who suffered from the effects of CTE.
“There was a moment I was immersed in their suffering," Omalu said. "If my faith had not been strong, I believe I would have committed suicide. I was so alone. I lost my job. But it is that great American spirit that the truth is prevailing.”
When asked if the movie was redemption, he said no without hesitation.
“I was already redeemed by my love of God," he said. "It was more a validation of players who suffered from this disease. A validation for the player’s families. Many said we wish we had known sooner. Wives said they thought their husbands were bad men. They just did not know how sick they were.”
Every week he receives emails and calls from former football players. His hope is that the NFL and federal government will establish surveillance centers across the country and that the disease can be studied further.
The National Institute of Neurological Disorders and Stroke recently launched a $16 million effort to study CTE in people who are still alive. It involves 50 investigators at 17 institutions. Omalu said he believes racism also played a role in his not being included in that group.
“They did not have the courtesy to send me an email or phone me and ask what I have to say,” he said, adding that he feels "the NIH is treating me like the NFL treated me.”
NIH officials said that as a matter of policy they cannot discuss applicants for a grant other than those who received it, but that the grant-making system is entirely transparent. NIH publicly posts notices of projects it intends to fund, they said, and "we then rely on groups of investigators to form and develop research plans which are then reviewed by scientific peers."
Omalu said he's not deterred and hopes to raise his own $10 million to fund a clinical trial on the issue. “It is about becoming an instrument of peace. Doing what you can to make a difference in the lives of others. If you enhance one another, you enhance yourself,” he said.
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