My father’s CTE diagnosis came as a shock. In retrospect, it shouldn’t have, but my understanding of the disease in 2011 was based on news media portrayals of a small number of athletes.
At the time, it was obvious that my father was having a difficult retirement after his 40-year career in professional football, but there was always a logical reason to explain his more challenging behaviors. But the oddities from my childhood were tougher to name, more elusive to describe, and had a more lasting impact on me and my sense of self than his later, more dementia-like behaviors.
This drove me to learn more about CTE and find out if his troubling behaviors were the result of a brain injury.
As I dove deep into the CTE world to understand my relationship with my father, I began to see two things clearly: CTE starts with a brain injury – a blow to the head - and over time, evolves into a degenerative disease that affects cognition and memory.
I started to realize that many of the troubling behaviors I observed as a child were likely caused by early-stage CTE. As with many other brain injuries, CTE can also result in declining Behavioral Health, impacting the entire family.
Football players aren’t unique in the ways a head injury can impact their lives. CTE-like symptoms had been discovered in boxers, epileptics, battered women, and circus performers – all had experienced repeated blunt force trauma to their heads.
In fact, I learned that degenerative behavioral symptoms were not uncommon in patients who had experienced multiple head injuries from car accidents or even industrial falls. The only part that was new was that it had been identified in football players, and seemed to come from accumulated hits rather than one or two concussive blows.
Until people like my dad were diagnosed post-mortem with CTE at Boston University, nobody in the general public had put the two and two together.
Widening the net about CTE into the realm of traumatic brain injury got me wondering about who else might be living with a degenerative brain disease or long-term symptoms of traumatic brain injury.
I was surprised and humbled to learn that outside of the football community, an estimated 1.7 million people sustain a traumatic brain injury annually.
“Brain injury is not an event or an outcome," the Brain Injury Association of America's website states. "It is the start of a misdiagnosed, misunderstood, under-funded neurological disease."
"People who sustain brain injuries must have timely access to expert trauma care, specialized rehabilitation, lifelong disease management, individualized services and support in order to live healthy lives.”
As I shifted my thinking from football players being unique in having this degenerative disease, I found myself becoming more settled in the idea that I was now part of a community who had been affected by traumatic brain injury, rather than part of a small cadre of highly specialized athletes struggling to redefine life after a brain injury.
Football families are a lot like other families living with long-term, progressive behavioral challenges of brain injury. Living with a brain injury and CTE can overwhelm victims, their families, and their caregivers. By bringing CTE into the mainstream of head injury conversations, I hope millions of lives will be impacted.
Ignorance about the true impact of a head injury will continue to devastate children and families until we stop thinking about the football population as being unique, and start to think about CTE as a product of traumatic brain injury.