How it all began ...
I have loved sports my entire life…playing them, talking about them and watching them. The first thing I did in elementary and middle school when I got up in the morning was turn on ESPN to see what I’d missed overnight. I participated in basketball, soccer, golf, tennis, swimming and softball. Entering high school, I decided to focus on basketball, my favorite sport, and play year round.
On November 14, 2011, I suffered a concussion the first night of basketball tryouts my sophomore year. My symptoms weren’t going away after a month, but I felt I was letting my team down, so I told my athletic trainer, doctor, coaches and parents that I was back to normal. I didn’t have any baseline testing, so it was impossible for them to know I still had symptoms. The timing worked out really well because we were out of school for winter break so my symptoms were decreased due to the lack of mental exertion. When I went back to school, it was so early in the semester that not many grades were posted so it wasn’t obvious that I wasn’t able to function in class. I am the type of person who doesn’t like to complain when I don’t feel well, so it was relatively easy for me to cover up my symptoms at home too. When my parents would ask me if I felt OK, I would say yes and then make extra effort to do something to make it seem like I felt good.
I started basketball practice and within a week suited up for my first game of the season. Unfortunately, I sustained a second concussion in my third game back which turned out to be a career-ending one. After that, I had to drop five of my seven classes at school because of the extreme symptoms I was experiencing including headache, dizziness, neck pain, sensitivity to light and noise, nausea, inability to focus, read, write and remember. I was diagnosed with post-concussion syndrome (PCS) that spring. It was extremely difficult to go from being an honors student who never needed help to being enrolled in special education with an IEP. It was all I could do just to try to keep up with my school work and I had to take summer classes so that I would even have a chance of graduating with my class.
My personality also changed after the injuries. When I was in school, I heard every annoying thing that my classmates would do and I wanted to yell at them, and sometimes I did. The lights in the classrooms hurt my head even more and the chaos in the halls in between classes was completely overwhelming. I wanted so badly to at least support my teammates, but after going to sit behind the bench later in the season when I thought maybe I could handle it, the stimulation, noise and pain my body shut down and I ended up in the emergency room. Even months later, going into a store or anywhere there was going to be a lot of movement or noise created anxiety for me. I couldn’t do things with my friends because I didn’t feel well enough, and after a while they got tired of me not being able to, so they stopped asking. I felt isolated, alone, depressed and in pain.
One of the most difficult things about having a brain injury for me was the lack of understanding from my peers. Because they couldn’t see the actual injury and it wasn’t something they were familiar with, oftentimes it was either overlooked or they only saw what they would consider the “benefits” of having an IEP, like being exempted or not having to complete the entire assignment. They saw these things as benefits when in reality it took me about three times as long to do less than what they were doing. No one understood that I would have given anything to do the same things they were academically (and what I had always been able to do before the injuries) and to be able to play sports again. Contrary to the belief of my peers, there is nothing easy about having PCS.
Fortunately, things started to take a turn for the better in the summer of 2013 while I was at vestibular therapy. My therapist was talking to me about the trail running she liked to do and at that moment, I decided I was going to create a foundation and host a trail run as my fundraiser. I chose a trail race for my event because it is a challenge beyond that of a paved surface. My hope was that with every tree, root or rock that participants had to step over or around they would understand the challenges I have faced everyday with tasks I used to complete with ease. Creating the foundation gave me the opportunity to help other athletes learn not to make the same mistakes I did. I wanted them to know that when the doctor says you need complete brain rest, that means absolutely no TV, no texting, no email, etc. I wanted them to know that you have to be honest about your symptoms and not go back to practice until your symptoms are truly and completely gone. I wanted them to know that as much as we love sports, there is no sport that is worth sacrificing your brain function and future. I wanted to help doctors who are trying to figure out why some people like me end up with post-concussion syndrome and why others can have even more concussions and not be affected. Most of all, I wanted to do everything I could to keep other athletes from going through what I have.
I began my senior year in August of 2013 taking a full day of classes for the first time since the brain injuries and also had to enroll in an additional online class both semesters to be able to have enough credits to graduate with my class. Basically my life revolved around going to school, coming home and doing homework or working with a tutor, eating dinner, doing more homework before my headache makes it impossible and then trying to get some sleep which is another thing that has been a challenge since the injuries. As difficult as it was to accept I would never play basketball again, I have learned not to take the things you love for granted and it gave me the opportunity to turn my negative situation into a positive for others. I never would have believed it would be possible, but I think I am as passionate today about sharing my story to help protect other athletes as I was about participating myself.
When I founded the HeadsUp for PCS foundation more than four years ago, my mission was to share my story to help prevent post-concussion syndrome and provide support to others who are suffering. I continue to be passionate about doing just that! While my struggles continue, I’ve been busy focusing on school and pursuing my dream of a career in health care. I encourage anyone looking for information, a resource, a speaker or just moral support to visit this website or contact me!
Meanwhile, here’s an update on my journey.
Q: Bring us up to speed on what you’ve been doing since high school graduation.
A: I attended the University of Kansas for two and a half years to work on pre-requisites for nursing school. While waiting to start nursing school I worked at Midwest Aortic & Vascular Institute as a CNA in their endovascular suite. I prepped patients for their procedures and assisted in procedures as well as helped monitor their recovery. I gained so much valuable experience in those eight months that has helped immensely during my first semester of nursing school at Saint Luke’s College of Health Sciences. I am now enrolled in their two-year RN, BSN program and will graduate May of 2019.
Q: Describe some of the challenges you’ve faced while in college and nursing school, and how you’re coping.
A: I am still experiencing daily headaches but the severity has improved. Dizziness, memory and light/sound sensitivity are still an issue but have improved, as well as my pain tolerance after dealing with it for so long. Just the new normal. In college the biggest challenge was adjusting from the level of accommodations that were provided in high school that are unavailable at the college level. In college it was so much more important to be able to advocate for myself as no one does that for you like they did in high school. Also, the volume and intensity of material in college was much greater than high school. Vision therapy was key to being able to adjust well and succeed after my freshman year. Due to my previous CNA training and work experience at Midwest Aortic & Vascular Institute, nursing school has been more a review at this point. I know more challenging times are ahead as I encounter more material that is new to me.
Q: How did vision therapy help you?
A: Vision therapy was by far the hardest therapy I went through, but also the most valuable. It was very intense and required a great deal of time and effort. I spent basically the whole summer between my freshman and sophomore years of college with vision therapy/resting from therapy. I went 5 days a week for 60-90 minutes and had exercises to complete at home. Due to the level of strain, I wasn’t able to do anything else other than sleep. After those 3 hard months of therapy I saw a huge difference. I was able to see 3D again, gaining back some depth perception, and could actually read and comprehend. I was better able to retain the information I was reading, as I no longer had to work so hard on being able to see. Dr. Bazin (see Resources page for info) was great and encouraged me to keep working when I felt like quitting, knowing the potential success I could have. The fact that she had personal experience working with concussions made her a great fit. I would highly recommend anyone struggling to reach out to her or another qualified professional with experience, as vision therapy can be life changing. Had I not done that work I probably wouldn’t have been able to succeed in college. (Fox 4 news report here Vision Therapy Helps PCS Patient)
Q: Is there any new concussion/PCS research that you’re particularly encouraged by?
A: Overall, the fact that there is research is the most encouraging aspect at this time. It is a big change from when I was first diagnosed and virtually no information was available. Although there is still a lot of work to be done, I am hopeful more change will be made as people are now willing to have the conversation. The fact that a concussion is an invisible injury and one that almost always relies on patient self-report research and progress are challenging. Before research can be done, successfully proper education must be given.
Q: Are there any policy changes you’re concerned about or encouraged by?
A: Limiting heading in soccer and tackle football before a certain age are efforts to keep children safe. Additionally, targeting penalties and fines in football to keep players safe is encouraging. Continued efforts to keep people honest and in concussion protocol are positive changes.
Q: What words of advice do you have for anyone suffering long-term effects of PCS?
A: The best advice I can give would be to develop a strong support system with people who understand the struggles you are going through and will stand by you as you work through them. It is a long and hard process but one that is made more bearable with support. Also you have to accept the new normal and not compare yourself to who you were before. Acknowledge there will be good and bad days and it is a process. Seek help through whatever means possible, medication, therapy, etc. Find out what helps you and gives you the best chance of success and happiness. It’s your journey and while no one can take it for you, they can certainly support you along the way.
2010 Freshman Season: Point Guard & Team Captain
2011 Sophomore Season: Photo taken just before she sustained second concussion in two months, which turned out to be a career-ending injury.
2013: NFL Commissioner Roger Goodell invited Kylee to attend youth football safety clinic for moms at Kansas City Chiefs practice facility.
Click on the following link and scroll down the page to watch a video that was shown at the WIN for KC Women's Sports Award Celebration in January 2014 where Kylee was honored with the HCA Midwest Health Systems Youth Sports Girl Award.
HCA Midwest's Jackie DeSouza presents Kylee with her award.
Kylee stands with keynote speaker Tamika Catchings who has won an NCAA Championship, a Gold Medal in the Olympics and a WNBA Championship.