My 100 Concussions: Notes From A Terrified CTE Study Participant

Former football player and pro wrestler Chris Nowinski recently set up a massive research project with Boston University to examine the long-term effects of concussion damage on the human brain. Anyone can volunteer to have his or her brain posthumously donated to the study, and one anonymous Deadspin reader has signed on to do just that. The piece below has been stitched together from a series of emails he sent us.

As a person who suffers from concussion aftereffects, I'm terrified of what life has waiting for me. How messed up is my brain already that there are days I can't remember that the thing I'm using to write on paper that ink comes out of and fits in my hand is called a PEN?

There are days when I feel sideways and can't function the same way I'm supposed to. There are spots on my skull that hurt to touch. I have episodes where my motor control goes to hell and I can't talk without stuttering so bad that my girlfriend has to almost treat it like pantomime.

Here's the thing though: I was never in organized sports. I was a band geek in high school and college. But growing up, when everyone else broke their leg or arm, I hit my head. Slipped in the cafeteria and went ass over tea kettle, landing forehead first on school tile. Bobsled went off the track at a fun park, and I went face first into rocks. The front wheel locked on my bike, and guess what? I learned firsthand what it feels like to have your skull dribbled on concrete.

I also had spinal meningitis as a kid. Like the "most people die from that" spinal meningitis. One aftereffect, as far as anyone can figure, is that I see double. All the time. Out of both eyes. It isn't like there is two full images, but more like if you go into a modern 3D movie and just don't wear the glasses. That's what the world looks like to me most of the time. One layer slightly off, on top of the other layer. This makes for shit depth perception. I can't putt in golf. I can't throw a dart and expect to hit anything meaningful. Oh, and it means I run into things CONSTANTLY. I'm not clumsy so much as I don't see it coming.

I have symptoms all the time of post-concussion syndrome. I have episodes where I start stuttering and can't speak clearly. I'll lose track of a word mid-sentence. I'll wake up some days and feel like my whole body is sideways and nothing really runs right the whole day. I'm playing catch up, having to work REALLY hard to pay attention, to do things right, etc. Those are getting slowly worse as I get older (I'm 36). But I never played a down of organized football.

I'm a HUGE University of Texas fan. Was in Longhorn Band. Saw James Brown beat Nebraska in the 1st Big XII title game. I haven't missed a home game since starting at Texas in 1994. So when I tell you that I have no recollection of last year's Oklahoma game, it isn't because we lost and I'm emo about it. It is because that Friday night with friends over, my roommate made me crack up to the point where I couldn't stop laughing and it eventually gave me a headache from all the blood rush. The kind of laughing where you might actually die because you can't breathe. Within about an hour I had a massive headache. Within another hour I couldn't talk. At all. Words didn't come out coherently. And I had basically no ability to control my arms. I couldn't take my shirt off to go to bed. My girlfriend (who used to teach special ed) was there and helped me. She said the closest description was someone with autism having a fit that bordered on a seizure. That lasted for 3 days.

I've been to a neurologist. There isn't anything structurally wrong with my brain that they can see on an MRI/Catscan. But the symptoms persist, and like I said, they aren't getting better. There isn't a fix that is easy, but it is helpful knowing about it and doing the things to control an episode when it comes on (anti-anxiety medicine does wonders).

I got into the CTE study because I've been a wrestling fan since forever, and knew who Chris Nowinski was and why he retired so young. Followed him a bit thru the news as the voice of the concussion movement (or whatever they want to call it). His foundation, the Sports Legacy Institute and Boston University teamed up to do THE major study when it comes to concussions in athletes and CTE. Then I heard him on the BS Report with Simmons. Chris said anyone who has had repeated head trauma should sign up for the study. Their main focus is on people who were athletes, but anyone with repeated head trauma is a good candidate. So I took down the info and emailed them. Within a few days I was called and given some basic info, and they sent me a package with legal releases and such. I also had to get two people who are close to me to sign a release saying that they would vouch for my desire to donate my brain to Boston University should I die. My girlfriend and my dad both have a card. I have one too... it basically says if I die, don't mess with my brain cause BU has dibs.

You take the entrance interview where you describe all of what you consider "major" concussions. For me I could point to ten that really stood out. The interviewer went thru a detailed questionnaire about each incident and had me describe the events and the aftermath. He asked probing questions that shed a lot of light for me. Simple stuff like, "Do you remember the impact?" I couldn't. For any of the ten. I remember what led up to it and the eventual aftermath, but not the actual act of hitting my head.

Then you talk about what your symptoms were after each hit. Did it last for hours/days/weeks? Was it just a headache or did you have other symptoms? Were you nauseous? Did you throw up? Were you sensitive to light? In my case, a couple have resulted in weird motor control issues... I couldn't stop shaking my hands once. I looked someone waving on a parade float but on meth.

Then they drop the hammer. What you and I and most people call a concussion they call a "major event". We define concussions in a way that makes them seem all big and impactful. But they aren't. The interviewer explained that the study (and BU/SLI as a result) defines a concussion as any time you hit your head and had any side effects of any kind beyond pain. Disorientation, dizziness, blurred vision, nausea, that feeling of "having your bell rung". Even if for only a few seconds. That's a concussion. That time you got into the car to fast and hit your head on the door frame and felt a bit woozy? Concussion. That time you walked into the low hanging lamp and had to get your balance? Concussion. That time you were fixing something under your desk and bonked your head getting back up and then felt a bit of ick? Concussion.

Based on that, the interviewer asked me how many concussions I've had in my life. I said probably at least 100, and while that feels like a big number, it is probably relatively low. I have this running reel in my head, like something out of a clip show, with me hitting things head first over and over whenever I tell this story. Basically my own personal episode of the Three Stooges.

From there, the study is pretty straightforward: they call you once a year and give you a series of memory and cognition tests and then ask you about the last year. Have you hit your head more? Do you have any of the standard symptoms? Are they getting worse? Have you been formally diagnosed with anything related to brain trauma? (MS, Parkinsons, etc)? It's pretty painless.

They can't diagnose you with CTE without opening up your brain and looking at it. That's why a few of the NFL stars who killed themselves did so by a wound that would leave their head intact, so it could be studied. No one knows they had CTE until the autopsy, and thus it can't really be treated as a normal disease. That said, part of the study is to capture data about people who have had a lot of major events and track behavior to hopefully find ways to diagnose the disease without, you know, cutting open your brain.

Again tho, I was never in football. I didn't participate in an organized sport that required me to hit my head against someone else's about 1000 times each fall, progressively harder as I got older. I know how rough some of my things can be, but I never lost cognitive ability. As bad as some of the crap I put up with can be, I can't fathom how awful it must be to have that kind of trauma. They play at the speed and power of the NFL and it amplifies any hit a hundred fold. I have an inkling of how bad it can be, and I know NOTHING. I read articles about football players and how they cope for tips and things to look for as I get older. And it wasn't just one hit, or 10... it is the steady accumulation of them over time... like layers on a lasagna made of pain. I have a taste of that, and it is a lousy one. I don't want to contemplate what it would be like to have that as a full meal.

Image by Jim Cooke