by Bennet Omalu
Chapter Eighteen
Marginalized, Minimalized, Ostracized
Once the Andre Waters case went public, I realized I had no other choice but to go deeper in my research of CTE. Up to this point, I had worked on purely a case-by-case basis. I’d found the disease in the brains of three former NFL players, but I knew they would not be the last. The disease needed to be studied with the goal of finding a cure.
Before I discovered football through Mike Webster in a city whose life and dynamic revolve around its professional football team, I never could have imagined that the idea of preventing a disease like CTE by avoiding contact sports could in any way be considered controversial. For me, it seems like common sense. If you do not want brain trauma, avoid head trauma. What could be simpler? However, common sense is not common in the face of conformational intelligence. When I say, “Avoid sports and activities that involve repeated blows to the head,” people hear me say, “Football is bad, and football is evil.” That is why I knew I needed to go deeper in my research of CTE.
My mind was filled with questions about this disease. I wanted to study retired players, especially the living members of the football Hall of Fame, to find out how many of them displayed symptoms associated with brain trauma. Since head trauma is not limited to football players, or even to athletes, I wanted to expand the study group to include those who played other contact sports, as well as members of the military. While CTE can be presumptively diagnosed in the living based on a constellation of symptoms and signs, CTE can only, like Alzheimer’s disease, be definitively diagnosed through an autopsy after death—at least at the time of this writing. Therefore, I wanted to try to develop a test that can definitively diagnose the disease in the living. Once we can identify and quantify CTE in the living, the next step is to develop a cure.
The size and scope of the research I wanted to undertake went well beyond what any one individual could achieve in a lifetime. Therefore, I began reaching out to others to be partners in research. I began with the place I knew best—the University of Pittsburgh Medical School and School of Public Health. I failed to mention earlier that I earned a master’s degree in public health, with a focus on epidemiology, at the university, in addition to my fellowships in forensic pathology and neuropathology. The university and I knew each other well. Some of the leading neurological researchers in the country were on the faculty. I was a part of the two schools as adjunct faculty as well. It only seemed natural to reach out to key department chairs and directors of research programs with the goal of establishing a program at the university to research CTE. I assumed the university would embrace me as one of their own and provide seed money for research, as well as laboratory space and personnel.
I identified four key men to approach with my idea. I met with each individually and explained what I wanted to do. The meetings could not have gone worse. One man never even made eye contact with me. Within five minutes, I was heading out the door. Two of the others looked me in the eye and made it clear they had absolutely no interest in what I proposed. The fourth, a neurosurgeon, was the nicest to me. He listened thoughtfully. At the end, he told me two things. First, he advised me to avoid the press. Then he told me he would get back in touch with me. He never did.
By this point, Dr. Wecht had left the Allegheny County medical examiner’s office. He resigned in January 2006. His replacement was, unfortunately, very familiar to me. He had been the county forensic pathologist in the Thomas Kimbell case. The fact that my testimony had called his work into question in that case did not exactly endear me to my new boss. The first three months my new boss was on the job, he barely acknowledged my presence in the office. Even worse, he took a stance on my work with CTE that was opposite Cyril’s. One day I went looking in the office for the files connected to the cases of CTE. The files and slides were missing. I asked around the office, but no one knew what had happened to them. Finally I learned that my new boss questioned my conclusions, so he sent them to other doctors across the country to review my work. While peer reviews are a good thing in medicine, this was not a normal peer review. One of my former neuropathology professors alerted me that my boss had come to him looking for faults in my work. My new boss had already made up his mind that I was not to be trusted as a doctor and a scientist. I could see the writing on the wall. It certainly looked like he was trying to find a way to get rid of me. Between work and the university, I felt like a persona non grata—a nonentity, a person of no consequence. As I read my Bible, I came across a story about persons with leprosy who were ostracized by everyone.1 I knew how they felt.
Never one to take a hint, I kept moving forward in my search to further research into CTE. Dr. DeKosky agreed to write a letter to the National Football League and to the NFL Players Association (NFLPA), proposing a joint research project. We included the players’ union because it should be most interested in protecting the health and well-being of its members. Dr. DeKosky proposed a longitudinal study whereby we would follow, monitor, and study four hundred NFL Hall of Famers, the cream of the crop. In addition to looking for and monitoring any symptoms they might have while living, their brains would be examined for evidence of CTE after their deaths. I asked Dr. DeKosky to write the letter, because he is a well-known and respected neurologist and one of the leading Alzheimer’s disease researchers in the country. The NFL had already closed their book on me, but they should have been open to this proposal from Dr. DeKosky. After several months went by without a response, we sent a follow-up letter. We’re still waiting for a response to this day.
• • • •
Even without any partners stepping forward to join me in my research, I continued my own efforts to learn as much about the disease as I could. To be honest, simply identifying the disease as a result of an autopsy left me sad, frustrated, and angry. The next phase of my research took me out of the lab and more deeply into the lives of the players who had suffered with the disease. My old depression returned, because the stories I heard broke my heart. My faith in America began to be shaken.
Andre Waters’ story especially touched me. His mother—a single mom with eleven children—told me the story of her son. Life was hard for the family when Andre was a boy. He used to go with her and work in the cornfields to help put food on the table. Football gave him the hope of a better life. A star high school football player, he received a scholarship to a small college in Philadelphia. He signed with the Philadelphia Eagles as an undrafted free agent and went on to play twelve years in the NFL. His all-out style of play earned him the nickname Dirty Waters because he hit so hard. For his mother, Andre’s making it to the NFL was an answer to prayer. A descendant of slaves, the entire family saw Andre’s achievement as an opportunity to rewrite their family’s history and grab hold of the American Dream. Andre bought his mother a new house and car and asked her to quit working. She didn’t.
Andre’s mother never knew the toll the game was taking on her son. After his fifteenth concussion, he stopped counting. His playing career ended in 1995. That was about the time family members noticed that Andre was becoming forgetful. At first they thought he was just absent-minded. Eventually, he had to call family members and ask for directions when he became lost on familiar roads on his way home. His personality also changed. Andre became very isolated, some days never even getting out of bed. Mood swings and exaggerated responses to minor events left people around him feeling like they were walking on eggshells. He went downhill from there until he took his own life.
When I returned home from meeting with Andre’s mother, I sat down and cried uncontrollably. The pain was too much to bear. Andre and his family saw his NFL career as a way out of the abject poverty they had known in the past. It seemed their family history had been transformed from its roots in slavery to laying hold of the American Dream. This is one of the greatest fallacies of professional football. Fans believe the players all become fabulously wealthy and leave the game set for life. In truth, the median NFL player�
��s salary is less than one million dollars a year.2 While that seems like a lot, keep in mind that out of their salary, they must pay their agents a percentage, while their union fees take another cut. Then they have to pay taxes. After deducting all the taxes and fees, the player is left with something closer to $300,000. The average NFL career is 3.5 years, and most players are out of the game by their thirtieth birthday. That means the average player earns about $1 million in take-home pay over his career in the NFL.
And what did they have to give up for that payday? Emerging studies are suggesting that more than 90 percent of the brains of football players show CTE changes when they die. In one such study of thirty-five professional football players, only one—a twenty-six-year-old man—did not show any CTE change.3
Personally, I have yet to examine a brain of a professional football player who did not have CTE. The only negative case I have found was that of a twenty-four-year-old football player, whose partial brain was sent to me in small sections. However, I believe if I had examined his whole brain, it would have been positive for CTE. The fact is, if you play football at every level, especially beginning as a child, you have a 100 percent exposure risk to permanent brain damage. I do not believe CTE will affect every football player or players of other high-impact, high-contact sports to the same degree. But the absence of incapacitating symptoms does not mean there is no CTE pathology or other evidence of brain damage, at least on the cellular level. Sometimes the degree of observable pathology in the brain does not correlate with the degree of symptoms one may suffer. We observe the same phenomenon in other types of dementias.
NFL players put themselves at risk, even though they are among the lowest-paid professional athletes in comparison to the other major sports. The average Major League Baseball salary is $4 million. The average National Basketball Association salary is just under $6 million. Even the average salary in the National Hockey League, the least popular of the four major American sports, tops the National Football League average.4 Of those four, only football and hockey are high-impact, high-contact sports with a high risk of brain trauma. Some will still argue that even though NFL players earn less than athletes in other major sports, they still make a lot more money than the average fan does. That is true, but that argument also overlooks what takes place after football. A 2009 Sports Illustrated study found that nearly 80 percent of NFL players were either bankrupt or under financial stress because of joblessness or divorce within two years of leaving the sport.5 If only their minds could heal as quickly as the money disappears.
• • • •
Andre Waters’ mother’s stories made me want to know more about him. I took time off from my job and took a red-eye flight to a Southern state to meet his niece, with whom he lived the last few years of his life. I rented a car at the airport and took off driving toward the town where she lived. In those days, I never thought anything about driving anywhere late at night. I often took late flights so I could leave after my workday was done. However, I had never driven in the South before.
It was well past midnight when I pulled into a rural gas station. When I walked in, the black man behind the counter gave me a look that made me want to laugh. In a deep Southern accent, he said to me, “Boy, where are you off to at this time of night? You gotta be outta your mind to be driving this late.”
“Why?” I asked.
When he heard my accent, he did a double take. “Where you from?” he asked.
“Pittsburgh,” I said.
“No, where you from? That ain’t no Pittsburgh Yankee accent.”
“Nigeria,” I said.
“Well, son,” he said, adding extra syllables to each word, “you may not understand what I’m fixing to tell you, but it is dangerous to be driving around these parts at this time of night all by yourself as a black man. Now you may not get what I’m saying, but you don’t need to be taking no unnecessary risks.”
“I’ll stay safe,” I said. I wasn’t making an empty statement. I felt safe because I felt the presence of the Spirit of Almighty God with me. Not only that, but I felt the spirits of Mike Webster, Terry Long, and Andre Waters riding along with me. This was their fight. They were going to protect me.
I made it to my meeting with Andre’s niece. Her stories also shook me and left me grieving over what the game of football took from him. When I left the next day for the long drive back to the airport, her stories kept running through my mind. At one point, I had to pull over because my tears were clouding my vision. The thought of Andre Waters—and who knows how many other players suffering in obscurity and in total silence—broke my heart. When they played and gave everything they had on the field, crowds cheered, and people treated them like royalty. Fans in the stands wore jerseys with the players’ names scrawled across the back. But once they were too broken-down to play, they were dropped like sacrificial lambs. The fans moved on to the latest set of players. When stories like Andre Waters’ suicide made the news, the fans stopped for a moment and uttered things like, “what a waste!” and “he had so much going for him”—and they went right back to cheering for their team, oblivious to what their favorite sport had done to their heroes. That’s what made me so angry and upset. Once the great heroes could no longer perform, they were forgotten.
Meanwhile, the NFL doctors began referring to me with all sorts of adjectives across all media. They made it sound like I was a dangerous human being who could not be trusted, an outsider, a foreigner who was attacking the American way of life. Then phone calls started coming to the house—threatening calls. I did my best to ignore them, but I could see the toll they were taking on Prema. This wasn’t the life she anticipated when she married me. We had started work on our dream house in a beautiful neighborhood in suburban Pittsburgh, a project Prema and I began before the storm over CTE came. Before we decided to build, we tried to buy a home in an exclusive neighborhood. The deal fell through, mysteriously. We later learned we would have been the first black family in the neighborhood. The realtor implied that it was the reason the seller had changed their minds about us.
The phone calls grew more threatening. People told me to go back to the jungle where I had come from. They threatened me and my family. I then started noticing cars following me. And I wasn’t just being paranoid.
The worst came one morning when I had to drive up to Buffalo to the Canadian consular office for a Canadian visa interview so I could go to the U.S. Embassy in Canada to renew my U.S. visa. I got into my car at 3:00 a.m. As I put on my seat belt, I noticed a brown Crown Victoria sedan parked across the street. When I started my car, the lights of the Crown Vic came on. We were living in a condo. As I pulled out of the condo parking lot, the car pulled right behind me. It stayed behind me as I drove down toward the freeway, and then it followed me onto the freeway ramp. I exited from one freeway to another. The brown car matched me turn for turn. I felt like this was a movie, and I was on the wrong side of a car chase.
A half hour went by. The brown Crown Victoria sedan stayed right behind me. It had dropped back a little to appear less conspicuous, but at this early hour, hardly any cars were on the road. The longer the car stayed behind me, the more scared I became. I didn’t dare pull over out of fear that they might walk up to me and shoot me. My ears became tuned to any strange sounds from my car. For all I knew, they might have done something to it to cause me to crash. I kept my speed slow, around 50 miles an hour, for fear that they might try to ram me and make me crash. Honestly, I had no idea who these people were and why they were behind me, which made my mind jump to every possible bad conclusion. After receiving so many threatening phone calls, I think anyone would have done the same.
The car stayed behind me. Well, if this is it, this is it, I thought. Jesus, I love You. All I have is Thine. Yours I am, and Yours I want to be. Do with me what Thou wilt. Over and over, I repeated this prayer. Finally, after about thirty minutes, the car exited off of the freeway. I took a deep breath and started singing a Nigerian spiritu
al song as loudly as I could. “We are saying thank You, Jesus, thank You, my Lord. We are saying thank You, Jesus, thank You, my Lord.” I kept singing until I exited.
My father called me a few days after this incident. “Bene, I have heard about what you are doing, but I want you to recognize that these are men and women who are invested in the affairs of this world, who are less likely to be afraid of God. Their God is the money they make, so you need to be careful. These are people who may not hesitate to harm anyone who threatens their revenue stream, and you should just be careful and trust God. Surrender all to Him, for He has led you thus far, and He will lead you on.” My father was not asking me to stop doing what I was doing. But he did remind me that the strongest man is not the one who throws the first punch. It is often the man who chooses to walk away. I thanked my father for his advice, but I knew I was not going to walk away from my brothers who were suffering in silence and obscurity.
I did, however, decide to do something just in case something happened to me. I packaged all of my research and wrote a book, which I self-published, titled Play Hard, Die Young: Football Dementia, Depression, and Death. The book included profiles of Mike Webster, Terry Long, and Andre Waters. Before the book went to press, I hired a professional editor to clean up the prose and a publicity expert to promote it. We approached publishers as well, but they all turned me down. One publisher actually called me and told me he liked my book. But he said he didn’t think any publisher would touch it because of an unspoken fear of the NFL. It reminds me of one of my favorite lines from the movie Concussion, when Cyril Wecht warns me against going up against a corporation that owns a day of the week. Eventually, I went ahead with self-publishing, a venture that cost me more than $50,000.
• • • •
While all of this was going on, another tragedy occurred. World Wrestling Entertainment professional wrestler Chris Benoit killed his wife and son in his suburban Atlanta home and then killed himself. Some had called Chris the greatest professional wrestler of all time. This tragedy shocked everyone who knew him and his family. The act seemed so out of character. No one saw it coming. Autopsies were conducted on the three bodies. The pathologist examined Chris’s brain and then placed it back in the truncal cavity of the body. Sometime later, Chris Nowinski contacted the family, who granted consent to examine Chris’s brain for evidence of CTE. I flew down to Atlanta to retrieve the brain and bring it back to Pittsburgh for examination. Because Chris had been dead for several days and his brain was mildly decomposed, I did not want to ship it via FedEx or UPS and risk causing further damage. Chris Nowinski met me in Atlanta. We picked up the brain, rented a car, and drove 700 miles back to Pittsburgh with the brain in a bucket of formalin in the back of the car.
