Part 1 of Our Interview with Jay Fraga, Founder of The Knockout Project

Interview

January 8, 2015

We first connected with Jason (Jay) Fraga, founder of The Knockout Project on Twitter. Impressed by his thoughtful approach to the concussion crisis (he believes ignorance is the problem, not sports and focuses on the youth levels), and inspired by his efforts, we reached out to Jay to see if he would share his story on our #HeadOn blog. Below, Jay answers our questions in his own words.

Tell us a little about yourself and your background. What has been your
experience with concussions?

"I’m a lifelong athlete and competitor. I hate to lose at anything and that might be understating things a little bit. I started racing BMX bikes when I was 10. I played lots of different sports, but that was my main focus and my first love. Officially, I’ve had 10 concussions, but those were only the ones where I was knocked out cold or close to it. I can’t even count how many times I’ve been hit hard enough to see stars. We’ve learned that those types of hits are of significant magnitude and likely signify concussive injury. Based on that, it’s a little scary to think about how many I’ve really had over the years. The number is probably in the high double digits.

"

How was your first concussion diagnosed? Did you immediately know something was wrong?


"A month before my 20th birthday I was with some friends and we were t-boned by another car in the middle of an intersection. The other car was traveling at high speed and pretty much folded our car in half and rolled us five times. I woke up trapped inside the car about a half hour later. That was my first one. I had a lot of other injuries in that wreck and the last thing the docs really worried about was the concussion. 22 years later, it strikes me as odd that a lot of ER docs still don’t sweat patients who present with signs of a concussion even when it’s the patient’s primary injury. That’s the nature of emergency medicine, I suppose. If you’re shorthanded and you have a guy with a gunshot wound on one side of the room and a kid who took an elbow to the head in a soccer game on the other, guess who gets priority?"



How were you treated for each concussion? How long did each recovery last?

"It’s interesting: Most of the time, treatment was non-existent. There was no talk about return to play (or race) protocol or any kind of follow up screening at a medical level afterwards. I suffered most of those injuries from 2003 to 2010 when you’d think that medical knowledge and treatment would have caught up. By and large, it still hasn’t, and we have a long way to go before reliable, consistent information is given by all doctors. Until my 9th concussion, I never really got any kind of decent advice. Generally, they’d say to go home and take it easy for a while, to follow up with my primary care doc, and that I’d be all right in a few days.

My 8th concussion was the one that retired me from racing and it was absolutely brutal in terms of symptoms- I didn’t know where I was, I repeated things all night and was slurring my words, etc. I had a CT scan at the time that came up clear for bleeds but showed a band of swelling running across the occiput. Even then, the ER let me out in short order and sent me home with vague instructions. And this was a good ER! I had no idea that concussion-specific doctors even existed.

The symptoms from most of the concussions typically lasted about a week (two at the longest) and then abated. The symptoms from my 8th concussion, however, lasted months and months.

As bad as I thought that one was, my 9th concussion occurred less than one year later from a simple bump to the back of my head from my 3 year old. Symptom-wise, it buried me and I’m still trying to recover from it. That was in 2011 and when I was branded with the official diagnosis of Post-Concussion Syndrome. I got hooked up with very good concussion-specific doctors after that one. Since then, I’ve done it all: Neuropsychology evaluations, vision therapy, vestibular therapy, sleep therapy, drug trials, atlas chiropractors, acupuncture, and psychiatrists... They’ve all played a part. My life might be a different story right now had I been involved with those doctors earlier in my life. I guess everything happens for a reason, though."





That has led you to your current work at The Knockout Project. What is your organization’s mission?

"Our primary mission is awareness, but The Project is much more than that for me. When I started it, my symptoms were so bad and the suffering was so intense that I was sure that I was going to die. There were several mornings spent kneeling in front of the toilet wishing that everything was over. In that regard, I’m lucky that I have my wife and kids as a motivating factor. I couldn’t do that to them. I’m also lucky to have had the benefit of experience in life and knowing that situations can improve. Lots of kids don’t have that life experience to understand that things get better. With acute PCS, they’re just thrust into the middle of a horrendous and overwhelming experience.

I regretted so much that I had put my family and myself in this position from a lifetime of being unaware of and ignoring my head injuries. I was mad at myself and I was mad at the lack of information out there. I was smarter than that, but somehow, I wasn’t. Concussion wasn’t a buzzword when I was suffering the bulk of my injuries. I was resolute that I was going to do whatever I could to ensure that others didn’t end up like I did by providing as much information as possible about what to do right away when you get injured in terms of rest, recovery, and return to play. If people did wind up getting hurt, I wanted The Knockout Project also to serve as a sort of compass to help support them and give them the tools to find the right docs to succeed in healing."


In your Founder’s Message, you talk about the difficulty of stepping away from the sport you love. What ultimately helped you decide to quit? What advice do you have for others in a similar situation?

"Symptoms forced my hand. When I woke up on the ground from the last concussion that I had on the bike, it was terrifying. Everything was slow and lethargic. I didn’t know where I was. My left eye was burning as if it were on fire. I went down on a track that I had raced on for 30 years, and I didn’t know what part of it I was on or how to get off of it. I heard the words coming out of my mouth to the first responders and they were slurred, garbled, and slow. I remember the difficulty in having a thought in my head that I just couldn’t get to come out of my mouth in words. It was really scary stuff. It was irrefragable evidence that I was in big trouble, that it was the end, and there was no way I’d ever race again.

After some time, plenty of suffering, and a full neuropsych exam, a letter from my neuropsychologist was the final realization that it was over. He said, "His decision to fully retire from BMX racing is fully supported, and I do not think Mr. Fraga should ever return to any contact or collision-type sporting activity." I cried when I read that. I knew it was over, but it was still hard to read in print.

In terms of others, I see stories in the media where “college football player steps away from game after X number of concussions.” I don’t think people reading those headlines realize that a lot of these players aren’t stepping away because of the number of concussions. They’re stepping away because they feel physically awful and are symptomatic. It’s hard enough to get through a normal day when you’re symptomatic, but it’s impossible to perform athletically at any level when you feel like that. Obviously, it’s dangerous, too. At some point, we all cross a line that’s tough to get back across. The result is a retirement that is thrust upon you. Those are the hardest to take because they’re not on your terms.

I’d like to see a point where there is a vast support structure in place for athletes to make a good decision before they reach the point where every day suffering makes the decision for them. On a small scale, I hope that some of the stories written by athletes on The Knockout Project help people to understand their own situations and to weigh the consequences.

I think it’s also important to point out that life goes on. One constant in a lot of our shared stories is the idea that “when one door closes, another one opens.” When a competitor loses his/her sport, that focus and energy finds another outlet. That’s the kind of people that we are. I was just a guy that liked to race bikes. I never thought that I’d be hearing from Super Bowl Champions, World Champions, Olympic Medalists, MMA fighters- you name it. Not in a million years. If you asked me ten years ago how people would have heard my name, I’d have been sure that it would either be through my bike business or because of the success of my team racers that I coached. But, life works in mysterious ways and now I’m doing something that has not only helped me get through the darkest time of my life with a devastating injury, but it’s helping others to do the same. That’s mind-boggling to me.

So, life goes on. When a sport goes away, that’s not the end of your life. Lift your eyes up and look for the opportunities. They’re out there."

Stay tuned for Part Two next week!