Never Giving in to Brain Injury: Interview with Kaitlyn Benhke
Quote: Even if you don’t know anyone who has completely healed from a brain injury like yours, I still know it is possible if you persevere; I don't believe in ‘can’t.’
Tina: Please introduce yourself, anything you would like to share: your passion, age, occupation, etc.
Kaitlyn: Hello, I’m Kaitlyn Benhke. I live in Austin, Texas (born and raised). I was a cheerleader for 15 years. I was the Co Captain at The University of Texas at Austin Cheerleading when I had to quit because of issues related to concussions. I guess that is where my true journey with concussion starts. I did get 4 in high school, though at the time I thought there were only 3. Looking back, there were definitely some deficits during those head injuries, but nothing major. Then in 2015 I sustained three concussions within seven months.
Kaitlyn: I’m passionate about the intersection of athletics and concussion because I don’t think it's taken seriously enough in any sport. Even where it is taken seriously, it is still a very flawed understanding and treatment. That is where my focus lies and I’ve done quite a lot of advocacy. I’m on the government funded national advisory board for the US. We are a group of survivors who guide the TBI TARC (Traumatic Brain Injury Technical Assistance and Resource Center).eOur Board helps direct the national and the state funded programs. I was on Good Morning America and Nightline, and I was in the New York Post, along with other smaller outlets. I go back and forth between concussions in cheerleading and concussions in general. A lot of times I’m trying to raise awareness because people don’t usually think of cheerleading when they think of any type of injuries, especially brain injuries. I also run an instagram page called The Concussion Network to help spread awareness, ideas, and knowledge. I’ve hit pretty much every part of my head, so I can relate to most peoples’ injuries. Looking back I sustained between 9-13 concussions in total. The past 5 years have largely been dedicated to my Post Concussion Syndrome and trying to navigate that healing alongside other health issues that came up (many as a result of my head injuries). I have a primary immunodeficiency, which I was diagnosed with right at the beginning of Covid.
Tina: Oooo, that is not great news!
Kaitlyn: [laughs] Yeah, I also have a connective tissue disorder, Ehlers-Danlos Syndrome, so 80% of my body is made up of a faulty protein. [cracks her hand] All of my joints are way too flexible.
Kaitlyn: Yes most of the time is genetics, but it isn’t well understood yet. My loose connective tissue is probably why I got concussions so easily in the beginning (because my brain wasn’t held in place as nicely as other peoples’ are).
Tina: When it comes to your tendons and joints, did you realize that you had those issues throughout your cheerleading career? That something was off?
Kaitlyn: We knew something was off, we just didn’t know what. I was always strong enough, always had a six pack. [laughs]
Kaitlyn: Cheerleaders are very athletic, so I was always strong enough to keep all of my joints in place and didn’t have many daily/regular issues back then. However, I was always getting injuries that would not heal. For example, I sprained my ankle and a year and half later it still hurts to walk. I had to have exploratory surgery and it turned out that some cartilage had built up in the joint (soft tissue issue). It wasn’t until my Junior or senior year of highschool that a regenerative doctor, who has Ehlers-Danlos Syndrome, mentioned that he believed I had it as well. I didn't get an official diagnosis until last year.
Tina: And how old are you now?
Kaitlyn: I just turned 27.
Tina: Oh happy belated birthday! And so you were a senior in highschool but you didn’t get an official diagnosis until now!
Kaitlyn: Yes, which is unfortunately common for this syndrome. I’ve been to support groups for EDS and they delayed diagnosis happens for most everyone because doctors are not taught much about it and it has such a myriad of symptoms!
Tina: That is why advocacy is so important to raise awareness on these topics! You’d be surprised by how many people don't know about these things… It's pretty shocking. Can you tell me more about your injuries?
Kaitlyn: The topic I like to cover the most is my recovery journey. A lot of the time I skip over my concussions themselves because doctors didn’t know much back then and I’ve had so many it would take all day to go through them. My first concussion was back in 2009 (as a highschool freshman). Cheerleaders didn’t have access to the athletic trainer, so my mom took me to the ER after practice. We had to ask the ER doctor if I had a concussion; he said yes and just told me to go home and take it easy for the weekend. I went to a varsity football game that night and a music festival that weekend... then got another concussion five weeks later. The doctors just didn’t know the complexities of brain injury at that time. I don’t fault anyone for where I’ve ended up and how my concussions have affected me. Everyone was doing their best along the way - we just didn’t have the right information. What I am really passionate about is my recovery journey and how western medicine is really not educated. My main symptom was chronic daily headaches for about three and half years. I had a headache at least 70% of the day. I ended up going to The Mayo Clinic, where I got about 10 minutes with the doctor who clearly hasn’t looked over my case. She told me to up my medication until I could barely stay awake during the day, then wait another year and the headaches might get better. That was all I got from one of the top clinics! I had already seen a plethora of doctors in Austin before that too.One wanted to put me on constant opioids… I didn’t think that was going to treat my issue!
Tina: Yeah that is simply putting a bandaid over it instead of treating the cause. It is also infuriating how the doctor dismissed you.
Kaitlyn: Eventually I had to quit UT Cheer (University of Texas). My last few concussions were with them and they took really good care of me after my injury. I had access to the athletic doctors and trainers who used a good protocol: baseline testing, accommodations, and a slow return to cheer. They did as much as they knew, and connected me with clinics and doctors. Finally, my parents and I thought, “you know what, this is not working. Thank you for trying, but we are going to take it from here.” That is when I started going to non traditional treatments. That’s also when I first started getting media attention - in the UT newspaper, The Daily Texan.That led to the Austin American Statesman picking up the article. Then our local news station picked up my story and then Nightline and Good Morning America became interested and ran my story as well. It was all a really fast experience. I wish I had been more prepared for it, but I am so grateful I had those initial advocacy opportunities.
Tina: Yeah opportunities come rushing in.
Kaitlyn: After that is when I met the Executive Director of the non profit that I still work with (contract work), Team Luke - Hope for Minds. It helps with kids under 18 and more severe brain injuries. I ran a support group for a while and did concussion-specific work until the organization decided to focus on more severe TBI’s. As I mentioned, I’ve tried about every treatment - many found through Team Luke. I’m very thankful to have parents who were able to support me through it all: cognitive therapy, vision therapy, physical therapy, an oxygen machine for use at my house, an EMF reducing biomat, Alpha-Stim, craniosacral therapy, upper cervical chiropractic, ozone and other IV therapies, detoxification strategies, lots of mental health work with therapists and psychiatrists - and that is just off the top of my head! My parents and I had to try every avenue and learned that concussions are like onions (especially when you’ve had multiple) ; you peel back a layer and find more. You solve one symptom and another one will pop up.
Tina: Did anything help at all?
Kaitlyn: A lot of non-traditional treatments helped a lot. My first time going to the upper cervical chiropractor, my top vertebrae was actually rotated 12 degrees. That cuts off blood supply, causes nerve impingements and other symptoms. Physical therapy also helped immensely, including the power of posture and using the right muscles. I also did regenerative medicine, where they centrifuge your own blood, getting your plasma and injecting it into ligaments/tendons. This sparks micro injury and causes your body to heal those ligaments and tendons on its own. Regenerative treatments have been so helpful for me due to my connective tissue disorder.. After 9-13 concussions (suffering whiplash each time) my neck was incredibly weak.Recovery was a puzzle, and I wish someone had known what to do. That's essentially what I try to do now; to provide and guide people through their recovery. I help others to cope everyday, address mental aspects, and offer ideas for treatments to try. I wish someone had known how comprehensive brain injury is. It is not just a bump on the head. It is affecting your hormones, neurotransmitters... your whole body. I once read a really interesting study about symptom resolution versus brain power usage. It followed people whose symptoms resolved within a week of the concussion; three months later their brains still use exponentially more energy to answer the same questions as someone without an injury. Even though they haven’t had any symptoms for months, their brain is still feeling it (even though they are unaware of it). I got enough injuries that my brain just couldn’t compensate anymore. People don’t understand brain injury well and can’t treat it comprehensively. That’s why I talk about my recovery - because this industry needs people who can guide the recovery process.
Tina: Wow. You really answered all my questions that I had planned. Oh, one thing I am really curious about is how has the involvement in media changed the way people perceive you or how did the media treat/perceive you as a person with brain injury?
Kaitlyn: That is a really great perspective to look at. I would say a lot of times the media is looking for a scapegoat, and that is one thing I always have to be really really careful of. That is why I always mention that UT did take really good care of me. They did their best along the way (as did all of my doctors), but the knowledge wasn’t there. B I don’t think there is someone to blame because it is systemic - theyhardly even teach concussion treatment in medical school.
Tina: That is shocking!
Kaitlyn: Yeah, but they do teach severe TBI, and that is what’s so frustrating with the non profit that I’m working with. They have guidance and a full recovery protocol for severe brain injury cases whereas concussion just isn’t even seen as a brain injury(at least in athletics, for sure). Relating back to the media; when I was first on GMA, one of my mentors did actually end up calling UT Athletics because they might have gotten some backlash. It’s a tough subject overall.
Kaitlyn: People ask me a lot, “How can you just go on and share your personal story? That’s so brave” I’ve never thought about it that way at all. I don’t know if it’s just because I know my story will help someone, or that I’m passionate, or just not scared of talking to people. I attribute that to being a cheerleader because you have to be able to do everything with a smile- you have to be composed and compete on your worst day. Which is true for most sports but cheer you have to look like you're ecstatic at all times.UT Cheer was about 30-40 hours a week. A lot of that is spent doing appearances at events where we had to talk to anybody and everybody like ambassadors. There was no question - GMA called and I said yes immediately to raise awareness about this issue!
Tina: That is so brave of you.
Kaitlyn: See, you just said it. [laughs] But yeah, I see it like this - I’m not going to do it, who is? Wrapping up my story and what’s been going on since then... I graduated one semester late, and my program was incredibly helpful. I was on an academic scholarship and they still honored that. All of my professors were so understanding, accommodating, and they cared. They are a big reason I could graduate with two majors and a minor. I tried to go work in San Diego full time after graduating, but that just crashed and burned. My brain was not ready for that. I’ve been living with my parents since 2018 now. I’m tackling all of these health issues and not rushing the healing process. Because it just takes time. So much time.
Tina: And sometimes it never goes away…But knowing that there are people like you…
Kaitlyn: That's one message that I always want to share; even if you don’t know anyone who has completely healed from a brain injury or certain symptom, I still think it is possible.I don't believe in ‘can’t.’ You can heal and be athletic again if you want to be an athlete! You can get back to a healthier, happier version of yourself.
Tina: You are making me tear up! I feel so grateful that the world has someone like you who is actively promoting this message, it is so special!
Kaitlyn: Thank you!
Here are links to the articles and interviews Kaitlyn has been involved in supporting concussion advocacy. Please go check them out!
The Concussion Network
TBI Resource Center (Kaitlyn is on the advisory board for nationwide)
Interviewer: Tina Yang