No reading, no television, no physical exertion or mental strain, plus no work for at least a month, possibly more–this was my prescription after I suffered my eighth concussion in six years. My neurologist told me to check back in after taking time off work and asked me to investigate disability options in case I didn’t recover. He also sent me to be screened for Chronic Traumatic Encephalopathy (CTE), a neurological condition caused by multiple mild traumatic head injuries and closely associated with college and professional athletics.
Most of my concussions came on the lacrosse field as a college athlete. The recovery method for these early concussions was to rest more and sit out of physical activity for a few days until the headaches subsided and I was no longer photosensitive. This most recent concussion was from a small fender bender and slight whiplash; my neck wasn’t even sore the next day. To be told I may lose my entire career due to a bit of whiplash at the age of twenty-five was heart-wrenching.
I was working seventy hours a week as a bank branch manager and had few hobbies outside of the office. Books and Netflix, my typical refuges, were banned for recovery purposes, and I quickly slipped into a deep depression. Most days were spent laying around the house wallowing in self-pity and fear of losing my mind forever. I’d heard the news headlines from the National Football League (NFL) about suicides, homicides, and dementia and felt doomed to the same destiny. Luckily, it’s unlikely I’ve developed CTE yet, despite having many symptoms, but my history of concussions puts me at high risk of developing it over time, especially if I suffer more concussions. CTE is a “progressive degenerative disease of the brain found in people with a history of repetitive brain trauma (often athletes).” While the headlines typically focus on professional football players, any high impact activity can put you at risk. The length of time participating in these activities, number of concussions, age of concussions, and even genetics can affect your risk. As the brain suffers injury, a protein called tau builds up in the white matter of the brain, causing various neurological issues ranging from headaches to Parkinson’s Disease. The unfortunate side of CTE research is CTE can only be diagnosed using postmortem autopsies of the brain. Typically, sufferers of CTE progress through the stages of CTE without ever having a firm diagnosis for the cause, and many die before they have firm answers for what has caused their symptoms.
There’s no consensus on the exact progression of the disease, there tend to general patters as it progresses. Suffers may be completely asymptomatic after damage occurs but most suffer from headaches and mild memory issues. As symptoms progress, patients begin to see emotional instability and depression. Emotional instability can manifest as explosive behavior and substantial depressive episodes. These symptoms cause the high frequency of suicidality and drug overdose by patients. Eventually, cognitive functions decline into sever neurodegenerative issues including dementia, Parkinson’s Disease and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease).
While these symptoms may be scary, their consequences can be even more harrowing. Symptoms frequently manifest as life struggles marked by bankruptcy from poor money management, social anxiety, and interpersonal conflicts such as divorce as cognitive delays begin to affect people’s daily lives. These events can easily derail someone’s life in the best of circumstances, let alone while battling an unseen disease. In extreme cases, emotional disturbances can lead to suicide and murder as often seen in media headlines surrounding the NFL. This insidious manifestation of symptoms has led to significant calls for brain injury prevention, especially in football.
The key to the prevention of CTE is the avoidance of concussions, especially while recovering from a head injury of any type. Because there is little you can do to avoid head injuries in high impact sports, the real solution is a societal paradigm shift. Coaches need to teach the safest methods possible and start to dispel the stigma surrounding these invisible injuries. Medical staff must educate themselves about the signs, symptoms, and prevention of concussions. I felt constant pressure in college athletics to speed up my concussion recovery, with medical staff and coaches accusing me of faking my injuries despite displaying obvious concussion symptoms.
These patterns need to end if we expect players to be fully transparent when communicating with coaches and medical staff. One solution frequently cited is improving equipment, but studies have shown this can create a false sense of safety. Football players are more likely to take risky hits and hit harder when wearing a helmet than without a helmet. Increasing padding may lead to more dangerous moves rather than safer play. This false sense of safety and increased aggression is the main reason women’s lacrosse has not yet adopted helmets or padding. I will no longer play lacrosse or any other high impact sports to reduce my risk of developing CTE from further concussions, even if padding is introduced to the game.
A more extreme prevention strategy would be to denounce our modern gladiator industry. The NFL has continually ignored the impact of head injury in their league and shown lackluster effort in making changes to protect the players. This lack of response has led to multiple early retirements due to concerns about long-term health. Some players have retired after just a single season in the league. While it may not help me prevent concussions, I no longer watch NFL games, despite my joy of the sport. I can no longer be complicit in assisting the NFL to ignore the severe risks their players take simply for our viewing pleasure.
As we look at the various risk factors such as length of play, the number of concussions, genetics, and pre-existing conditions, I am at high risk of developing CTE. Playing lacrosse at a highly competitive level for almost ten years exposed me to countless small head injuries. I also played in an environment that didn’t take concussions very seriously, putting me at high risk for subsequent concussions and leading to three concussive injuries in one year. The main priority is avoiding subsequent head injuries as these cause the most damage while recovering from a brain injury. My family has a history of Alzheimer’s Disease, and if I carry the gene for Alzheimer’s disease, I’m at extremely high risk for developing the dementia symptoms seen in late-stage CTE. The mood instability that comes with concussions and CTE quickly exacerbates my history of mental illness.
Although I’ve suffered from depression my entire adult life, my struggle started in earnest once my concussions began. After suffering a half dozen concussions on the lacrosse field which weren’t adequately managed by our team’s medical staff, I dropped out of school to seek in-patient treatment for my depression as traditional methods were no longer working. In the years following, my diagnosis has shifted from major depressive disorder to bipolar disorder due to substantial mood shifts and emotional volatility. Due to my issues with executive functions, I was diagnosed with attention-deficit disorder at the age of twenty-eight. For the first time in my life prioritizing, planning and giving a hierarchy to things is increasingly difficult for me
In my personal life, I need to do as much as possible to avoid another concussion while managing the symptoms of neurodegeneration as they come. No longer playing or coaching lacrosse, because of the high risk of being hit, helps reduce the risk of concussions despite a deep love of the sport and coaching. I have also given up activities like riding roller coasters, go-cart racing, and rock climbing since there is risk my head could suffer a blow. While this means I sometimes sit out of group activities with friends, the sacrifice is worth being able to keep working and maintaining my mental fortitude. My mental health is a constant struggle, and working closely with my psychiatrist to ensure my prescription medication cocktail is helping me succeed.
I monitor my mental health like some people with diabetes monitor their sugar levels. Regularly checking in with myself and my doctors to ensure I’m not falling off the right track is key to my success. I focus on making sure my daily responsibilities, such as cleaning and cooking are taken care of and plan projects to aid personal growth. Due to the high risk of suicide and drug abuse with CTE, I speak with family and friends frequently about my mental health and avoid drinking or using drugs recreationally. The last time my mental health was neglected, my family was so concerned by my radical mood shifts they brought me to a psychiatric hospital which led to my new medications and diagnosis. My ability to work was at risk because I couldn’t control my emotional response to essential work stressors and customer interactions.
Without maintaining self-care, I risk losing my job, failing classes and harming my closest relationships. Some symptoms can’t be avoided, however. I frequently get migraines from flashes of light or glare and must wear reading glasses to decrease the number of headaches that occur while reading. I haven’t found a strategy to deal with these debilitating issues beyond taking the time to rest as they start to develop. Short-term memory loss is also a pervasive symptom. I have incredibly detailed memories of events before my string of concussions but fight to remember relevant details from just days ago. Using multiple notebooks to retain essential dates and information ensures I’m not constantly worried about forgetting something.
Making myself a priority can sometimes feel selfish, but it keeps my life stable and moving towards my goals. Stretching my brain is a new activity to my mental health checklist. Challenging my brain helps rebuild the neuropathways lost through concussions and hopefully staves off neurodegeneration. Going back to college has been instrumental in strengthening my mind since it challenges weaknesses around executive function. Planning and organizing a term paper or intently focusing while studying are all very difficult for me now. I’m slowly learning how to rewire those pathways. Every day I find cognitive delays that have never caused issues in the past and find methods to overcome these struggles. Recently homophones have become very difficult for my brain to spell despite never having problems with spelling in the past. I have developed little tricks to help me catch these errors, but it’s unsettling to relearn something I was competent with in the third grade.
Staying mindful about what markers indicate neurodegeneration help me curtail any symptoms that arise. Understanding the severity of head trauma has led me to rethink my priorities in life and have shifted my views of today’s modern gladiator sports. I no longer long for a fancy job title or tie my identity to my career in case I suffer another concussion. Instead, my focus is on maintaining homeostasis and strengthening my mind when weaknesses arise. Taking pleasure in personal growth and improvement has replaced my drive to climb a corporate ladder. Avoid risky activities and adding daily routines for mental stability will keep my mind sharp. While the long-term result of CTE is scary, I have a long way to go before my symptoms are severe enough to interfere with my day-to-day living. Each of these days will be filled with growth and person fulfillment.
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MacKenzie Campbell is a Colorado native currently pursuing a Business degree with plans to pursue data analytics as a career. When not working on school, she works as a financial coach and Enrolled Agent to help liaison between the IRS and those with tax issues. In her spare time she hikes with her dog, Scout, and reads voraciously.
