CTE on the Mind
Updated: Sep 11
Content Warning:
This post has brief descriptions of a medical emergency and panic attacks.
I know, for me, it can be hard to read about those things, so please take care of yourself. <3
On Tuesday August 25, 2026, I sat in a hospital bed reading about a medical study published earlier that day that had made it to the front page of the New York Times: Major Study Finds at Least 1 in 4 NFL Players Get Brain Disease. A brain disease that, in spite of not being an NFL player, I worried was the cause of the acute fainting episode that had landed me in the hospital over two days prior. (Good news/bad news, this episode probably wasn't related to my history of brain injury, but that's a topic for a follow up post.)
That morning I was waiting for the results of my CT scan, but after over a decade of managing brain injury, I knew better than to hope for anything helpful. Experience has taught me that I’m not a severe enough case to be prioritized and that my tests are almost always normal. Still, a tiny part of me hoped that this episode could be a catalyst for answers or clues that could maybe lead to getting help.
About an hour after I read that front page NYT article, I got the CT results in my patient portal.
Normal.
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The study by Mass General Brigham looked specifically at all NFL players who passed away during the 5 year period between 2016-2021.
815 players died during that time
Of those, 235 donated their brains to be studied posthumously.
Of those 235, 215 were found to have the brain disease known as CTE (chronic traumatic encephalopathy, or dementia pugilistica).
Over 90% of donated brains were found to have the neurodegenerative disease. That 90% is equal to a little over 25% of the total brains of deceased NFL players during that time period. Meaning that at the very least, likely higher, 1 in 4 NFL players developed CTE.
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I have had over 30 concussions since 2010, the most severe of which happened between 2013-2014. Many years as a lacrosse goalie who lived for the thrill of penalty shots and rapid fire practices came to an abrupt end as I was medically retired before my senior collegiate season in 2014. The damage was already done; the more concussions you get, the easier they are to obtain in future. Throw a natural clumsiness and a faulty spatial reckoning capability into the mix, and concussions became a fact of life rather quickly.
I’m unlikely to ever know for certain whether I actually have CTE; It’s a neurodegenerative condition caused by repeated head traumas that eventually leads to dementia-like symptoms (along with a smattering of other determinedly unfun issues) that is diagnosable only after death: to see the disease, you have to slice the brain like deli meat so as to see the hardened neural pathways inside.
Is it probable that I have it? I only have my experience of symptoms that have worsened over the last decade: inability to focus, memory issues, TMJ, severe executive dysfunction, depression, anxiety, light and noise sensitivity, issues with overstimulation, panic attacks, thought stoppage, aphasia, anomia, nystagmus, and on and on. I try to track and manage them all, but I’m inconsistent about it (see aforementioned memory issues).
What I do know is that often symptoms get worse or new ones appear around the ten year post injury mark. I also know that CTE often ends in one of three ways: stroke, seizure, or su*cide. I don’t have a history of the former two, but I’ve been afraid of the possibility of developing them for a very long time. As far as the latter, I’ve built a lot of fail safes to prevent it and am proud of the work I’ve put in on that front as well as grateful for a community of support.
So when, around 2:30am on Sunday morning, I had an acute fainting episode that included some ragged breathing and my lips turning blue, it wasn’t just my history of medical trauma that caused my panic attacks to start rolling as I was loaded into the ambulance; I was terrified that my worst fears, stroke or seizure, had finally arrived.
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I first heard of the Boston University brain bank associated with Tuesday's study during my initial 2013-2014 onslaught of concussions. At the time, the study was only taking NFL brains.
In 2019 BU launched its first all female study of former women’s soccer players, and cited that prior to that point, only 2 women had ever been formally diagnosed with the disease. It wasn’t until recently in 2023, with the death of Australian football player Heather Anderson, that the first professional female athlete was officially diagnosed with the disease.
I have only my experience, and experiences of female friends with TBI, but I feel pretty strongly that concussions affect women differently than men; our nervous and endocrine systems mess with each other in ways I don’t think anyone understands. Certainly there haven’t been any major studies on it.
And there’s kind of a shitty reason for that: the National Football League and it’s commissioner, R*ger Go*dell.
The first diagnosed case of CTE was found in Mike Webster, former Steelers legend, by Dr Bennet Omalu, who would name the disease and publish his findings in 2005. The NFL would spend the next 11 years denying the link between football and the disease, and actively seeking to discredit the findings of (and destroy the career of) Dr Omalu.
Over the next 11 years, as more current and former players died from seizure, stroke, or su*cide, the league maintained there was no link between the sport and the disease, even after a 765 million dollar settlement was reached in 2013 with thousands of retired players. (If you feel like getting angry today, or are unconvinced as to the BBEG (big bad evil guy) status of the NFL when it comes to brain injury, read about how they used eugenics based science to pay black players less than white players in this and other settlements, a practice only officially ended in 2021 with a 1 billion dollar settlement)
In 2016, the league finally admitted a clear connection between football and the disease, and since has begun to fund diagnostic and safety studies.
11 years between then and when Dr Omalu first published his findings. 11 years of lost time and research potential that effects not just NFL players, but everyone with head injuries.
Over the years, I’ve found communities of folks with brain injuries (my favorite is Love Your Brain) and while there are athletes among them, the number of car accidents, domestic violence, and other incidents far outweigh the number of football players. In saving it’s own ass and profits, the NFL screwed over so many people beyond its purview.
There are more and more studies happening every day, but every week there is a new story of someone dying with the disease. Sometimes it’s newsworthy like when a former athlete dies, but often it’s the quiet disappearance of a community member who lost their battle after years of distress.
So while I’m thrilled there are more studies, I’m aware they are unlikely to benefit me during this lifetime. So in the meantime, I write, I read, I document, and I try to take things day by day because there’s nothing else I can do. I’m lucky to have found an amazing community that I’ve leaned heavily on this past week, without whom I do not know where I would be.
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During my 64 hours in the hospital, I had more panic attacks than I’ve had in the last five years. It was also the longest time I’ve ever spent separated from Ellie, my service dog, since I got her (it was easier for friends and my parents to stay with her given that I’ve never been in a hospital overnight before and we had never trained for it).
It is strange to desperately wish for abnormal tests: Tell me you see that I’m not okay. Give me some evidence that isn’t only experiential, give me something visible, quantifiable, a sign or a scar that exists outside the confines of my brain. Some of the potassium and sodium were low in my blood, but my head was "fine", medically speaking. In reality, it had been kind of numb and tingly since the episode, and I just felt weird in a way that was definitely freaking me out.
I had to have one more test before I could be discharged on Tuesday, and I couldn’t stop crying or apologizing to the tech performing it. Fortunately, I’m well practiced at silent, albeit uncontrollable, sobs. I just wanted my chest to stay still so it didn’t mess with her readings. She was kind and gentle as she put her hand on my shoulder and told me it was okay. Feel what you need to feel, she'd said.
As soon as the final test came back (n*rmal), I changed into my street clothes and went to the nurses station to ask for a discharge, every inch of me itching to get out, to stave off the feeling of being trapped in a very familiar hopeless cycle. The very nice nurse who’d been helping me that day obliged and got the doctor; I was out within the hour.
My hospital roommate asked if I was leaving and I said that I was.
They won’t know what’s wrong with me until I’m gone.
Don’t you want to wait and see what they say?
Staying here is only going to make me worse.
We wished each other well and I left. It was only later I realized she thought I meant that they’d figure out what was wrong with me after I left the hospital. It was a much nicer thought than what I’d meant.
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For reading and references:
Brain Injury Association of America
Great resources, I've only found them recently, but they are the nations oldest and largest brain injury advocacy group
Founded by former professional snowboarder Adam Pierce and his brother Kevin Pierce, they use community, yoga, nutrition, and mindfulness to help bring together people managing TBI and their caregivers. I went to a retreat in the fall of 2024 and spending four days around people dealing with the same things as myself was so healing, I highly recomend. They also have online resources and meet ups.
League of Denial: the NFL's Concussion Crisis
Documentary published in 2013 by PBS.
NFL agrees to end race-based brain testing in $1 billion settlement
Chronic traumatic encephalopathy in a National Football League player
Omalu, Dekosky, Minster, Kamboh, Hamilton, Wecht, published 2005
Concussion & CTE Foundation (formerly Concussion Legacy Foundation)
Dearest Dewi, How very frightening. for all yu have been through, your writing is clear and your testimony so important for others. Wafting healing your way. Tons of love, josie