CTE: What Price Fame?

I recall the evening of May 2, 2012… not because it was particularly different than any other. For me, it was a routine night. I’d gotten in later than normal from my office, and sat down at my laptop to browse through the MSN news.

I recall that evening because of a headline that caught my attention. While I do not recall the exact news outlet that published it, I do recall the headline referencing a former NFL Linebacker who was dead at 43… dead of a suspected suicide.

The headline fascinated me… not because I am a football enthusiast… not because I was a fan of the Chargers from where Junior Seau once hailed… but because the idea that a fellow human being can reach this depth of despondency is terrifying to me. It is terrifying and so overwhelmingly sad. And I believe that it is possible for any of us to reach this depth… that we can each arrive at a place where our emotional resources are in short supply and despondency is in plentiful abundance. For my own soul, I wanted to know more about what Junior went through.

I read that article, and then several more, wondering why, if Junior did commit suicide, he would have. He appeared to have interests and passions that he pursued, a thriving business, a wonderful NFL legacy and a family and loved ones who adored him. So, why? What happened?

Over the next several days, I followed the Seau story. Among news images of Junior on the field and off, there were photos of his home, pictures of his restaurant, his collection of surfboards, his children.

What stands out most to me, however, were the images and footage of his mother. Her pain and her grief were so palpable. I recall her at a press conference, addressing the cameras, but speaking to Junior, and with an imploring wail, crying, “Why, Junior? Why?”

And I didn’t know him, but I asked that, as well.

As the days rolled by, Junior’s death was ruled a suicide. There was a great deal of buzz in the media about him having wanted to donate his brain to the study of Chronic Traumatic Encephalopathy; or what has come to be known as CTE.

CTE is a neurodegenerative brain disease, which is characterized by rapidly worsening dementia, aggression, impulsivity and depression. Confirming the presence of tau protein, and its neurofibrillary tangles, is the only way in which the diagnosis can be made. Unfortunately, this can only be discovered during a postmortem study of the brain. This makes pre-death diagnosis impossible, and means that the afflicted individual is left with little to no support for their disease.

Because Junior left no letters or final instructions, it is merely speculation that he would have wanted his brain to be studied for CTE.

There is compelling evidence, however, that this was exactly what he wanted. It seemed curious that he chose to shoot himself in the chest, as opposed to the head. It is believed that he did this so that his brain might be preserved and later be studied for the hallmark signs of CTE.

Typically, when a firearm is used in a suicide, the head is the target. It is much easier to aim towards and to achieve an effective trajectory. Depending upon the weapon used, shooting oneself in the chest can be awkward and cumbersome. It makes sense that Junior may have been deliberate in planning the details of his death, and that he spared his brain for a reason.

And the issue, of whether or not Seau’s brain should be studied, became a very controversial one. You see, this was in stark opposition to the tenets of the religion and Samoan culture in which he had been raised. Those customs mandated that there be no invasion of the body after death. And Junior’s family wanted those mores to be observed. Early on, they conferred with their (tribal) elders, and spent some time deciding upon whether or not to consent to the studies. Eventually, they agreed that Seau’s brain should be studied. They consented to the postmortem analysis by NIH, and eventually, the diagnosis of CTE was confirmed.

By this time, I’d started to look into CTE, because prior to Seau’s death, I’d never heard of it.

I discovered that it was a relatively new medical entity, and that it was discovered by a colleague and friend who’d completed his residency at Harlem Hospital at the same time that I did, Dr. Bennett Omalu.

I remembered meeting Bennett during the 2nd year of my Ob-Gyn residency. The chairman of our department had asked that I accompany him to our hospital’s pathology lab in order to review the slides of a patient from our clinic who’d been diagnosed with a particularly rare form of uterine cancer.

When we arrived at the lab, Bennett was introduced by the attending pathologist with whom he was working. I recall that he was asked to discuss the pathologic details of the slides in his possession. And he methodically reviewed each one, explaining the nuances and subtleties of the specimens. He pointed out and described the aberrant cells before him and invited us to look at what was under his microscope. He, too, was a 2nd year resident, yet was quietly self-assured, and very knowledgeable about all that he discussed. His level of detail and precision were impeccable. It was clear that he was committed to the most thorough assessment of any specimens sent his way.

It just so happened that this patient’s slides would later be sent to Harvard, where the reviewing pathologist would concur with Bennett’s conclusions and diagnosis. Such was the acumen of Dr. Omalu!
It was this young and talented resident, who would later discover a neurological disease that would indelibly impact one of America’s favorite pastimes, and threaten to upend the multi-billion dollar industry that had grown up around it.
In Dr. Omalu, God had picked the right warrior.

Bennet’s compassion would drive him to find answers for and grant dignity to his patients, even in death. His laser sharp focus and dogged resolve would help him to solve the neurological quandaries that he encountered and that no one else had endeavored to explain. And, finally, his courage and faith in God would help him to persevere and stay the course, as he would be forced to take on the political and financial behemoth that is the NFL.

After much time and many trials and tribulations, his research has now taken a foothold, not to be challenged and questioned any further. More and more pathologists and neurobiologists are studying CTE and identifying the myriad of insults that might provoke such a malady.

The findings of their research should be cause for great alarm. Their studies have shown that 99% of those whose brains have been studied, have been found to have CTE.

Certainly, it can be argued that those who donated their bodies to the science of CTE were already self-selected and known to be at risk. If this is so, then how do we interpret this data within the context of the general population?

What about athletes who do not have symptoms?

We need to study their brains as well. And when possible, we need to study adolescents who have already played football for many years. We must study this all fervently, so that we know the risk and can inform parents.

An article published earlier this week in the Journal of the American Medical Association, details a study performed at the Boston University Alzheimer’s Disease and CTE Center. Their study found that there are “alarming rates of CTE among semi-pro, college and even high school players…”

Now, with mounting evidence that CTE can and does start as early as pre-adolescence, what will parents who have had dreams of their sons playing Pee Wee Football do? Will they start down the potentially treacherous path towards high school, and maybe even college ball?

Coupled with information from the CDC, that “…In 2011, a CDC study indicated that young athletes, playing at the elementary and high school levels, face a 60% increased risk of suffering traumatic brain injuries, putting them at risk for more serious cognitive side effects…”, we need to ask some very targeted questions about how we will protect our youth against brain trauma that would put them at risk for this devastating disease.

Texas is the place that I have called home for 11 years, and, here, football transcends being simply a tradition. Football is ubiquitous here. It is ever-present and is an integral thread in the cultural fabric of the Lonestar State. During high school football season, the world all but grinds to a halt on many Thursday and Friday nights. Socialization, history, community and school pride and dreams of “hall of fame” greatness all converge in local football stadiums, as rival teams come together and fight to become champions.

I wonder how my fellow Texans will study the statistics and research about CTE that have been made public? And what solutions will abound?

Will someone patent a new and better football helmet? One that is “guaranteed” to minimize the counter-coup shocks to the brain?
And who among us will volunteer their child for such a research group?

Will rules regarding how the game is played among children become more strict or be revised altogether?

Or will we bury our heads in the sand and act as if this threat is non-existent? Will we ignore what has been happening so that boys can continue to play, with the hope that they will one day be NFL starters?

Because, after all, what’s a little dementia if one can make millions?

So, what price fame?

Would the fame and wealth that accompany a professional NFL career be worth the loss of one’s mind? The loss of inhibition control? The erosion of relationships, as aggressive and impulsive behaviors become more commonplace? The loss of so many of the memories that were made possible by the money and the fame? The bottomless despair that so often leads to a wholly self-destructive end?

I wonder what Junior Seau would say about that? And Dave Duerson. What would he tell us today? Would it have been worth it? Terry Long. Mike Webster. Ray Easterling. The list goes on.

And how about Jim McMahon? Diagnosed with dementia at the relatively young age of 49, and suffering bouts of depression and impulsivity, but unable to know whether or not he has CTE, a diagnosis made only after death. Would McMahon have endured it all over again, or would he have chosen differently if he knew what awaited him?

And would any settlement amount set this right for the loved ones who are left behind?

So, I ask again: “What price fame?”

Ignorance is not bliss. And at this point, we can no longer profess to be ignorant to the issues which are front and center in the debate about CTE. Now, we know.
And now that we know, America, what will we do?