Justice Bartley | Faces of Epilepsy
My name is Justice Bartley and I am currently a graduate assistant on the men’s basketball team at the University of Miami.
Thank you to the members of the Epilepsy Alliance Florida for giving me this platform to share my story.
For those who do not know, epilepsy is a neurological disorder. So, it is a medical condition relating to the brain and central nervous system. A seizure occurs when the activity in the brain becomes abnormal. The cells discharge at once without purpose and depending on where it occurs in the brain can impact any part of your body. It can vary from losing control of your motor skills to losing sense of time or having lapses in memory.
No, you cannot swallow your tongue. No, they do not all look the same. Yes, it is treatable.
My journey began in 8th grade. I was walking to my next class and I remember my body not feeling right. Something was off. The last thing I remember is grabbing my friend’s shoulder before blacking out.
The nurse told my mother that I had an asthma attack and she was not convinced.
My next seizure was much worse. Black and purple spots came and went. I had tremors -when your hand begins to oscillate rapidly. My body was trembling uncontrollably. The first thing my mother wanted me to do was control my breathing, and I couldn’t verbally respond to her but she knew I was not up for listening. Being 13, it was a lot for me to try to listen when I didn’t know what was happening to me. My mother did her best to help control my breathing, as I was still somewhat out of it.
Life is interesting huh? The quicker my breathing, the less oxygen was getting to my brain. No, you see, the more fearful I was – the worse matters became.
I ended up spending a little over a week in the hospital. The doctors probably ran every test they could in all of neurology because I remember hearing of tests like the MRI, CT, EEG, and PET. I was later diagnosed with Focal Onset Impaired Seizures, also known as Complex Partial Seizures.
I was gifted with perspective at a young age because one event impacted how I lived my everyday life. What came along with my diagnosis, was great appreciation for the little things.
After my diagnosis, I had to forfeit playing basketball and even playing around in gym class. Football was out of the question. I had to learn how to be on my own and without friends for a little because the time I used to spend with them was now dedicated to catching up on school work. It felt like every adult wanted to be overly cautious, and every kid looked at me differently. I needed to quickly acclimate to this lifestyle and there wasn’t any clarity of what it entailed.
There were some tough times. I remember sitting in that hospital bed, and I would always see my father there. I felt so bad because he was coaching at Auburn University at the time and I knew he needed to get back out there. I have two great parents who have done more than what was required for me to enjoy this great life I have today. But at the time, I only wanted things to get back to normal and the medicine I was on did not help.
The first prescription made me act out of character, my family quickly noticed, and my mother asked the docs to find an alternative. There were times when I told myself that I didn’t have to be on my medicine anymore. One of my doctors told me that there was great possibility in me taking this medicine for the rest of my life! At that age, I was not looking forward to that and I mistakenly went against the doctor’s advice. I thought with a few months of me feeling good that there wasn’t a need to take it. I kept resisting. I didn’t want to own what my life looked like at the time, thinking it wouldn’t ever change. I was fearful it would look that way forever.
Once I accepted where I was and began to trust the process, I then, made improvement and growth.
It’s been a while since 2009, but it was a year packed full of experiences I could never forget. I’m thankful for those times of adversity because they shaped me into who I am today. I’ve learned the importance of not leaning on your own understanding, in this case that’s thinking I don’t need to take my medicine. I’ve learned the importance of living a healthy lifestyle and listening to my body in order to have the proper things that my body needs so I can be the best I can be.
Encountering challenges early in life can be perceived as not fair, but I’ve learned to better identify them as opportunities to grow. I have had to become more responsible, mature, and grew a knack for determination through this journey. There are still hurdles and challenges that I will face, but I accept them because of what I have been through.
A few months ago, I underwent a week long study in the hospital where they ran a series of intensive tests, I was only able to get 4 hours of sleep every day for 5 days for an example. The team working alongside my neurologist and myself told me after studying my EEG’s that medication was no longer needed! Up to that point, I had been taking medication for my seizures for almost 10 years. This journey has given me a great perspective on being so appreciative and positive.
Every day is an opportunity for me to be a light in someone’s life. I challenge you all to do the same. I do this because I can attest to the impact of support. To this day, my friends, my family and brotherhood from my time at UVa mean so much to me for all that they have helped me with.
You never know what the person next to you is going through. We are all figuring out life, but take five seconds to compliment, to positively gesture, or to simply smile because it might go the distance in that person’s life. To be in a dark space filled with the struggles of life in 2019 can be overwhelming for ANYONE, so be that light.
I am so honored to share my story with you all, and I hope I can continue doing so in the future to help strengthen the light that is already in you.
I don’t believe that there are special people that are hand-picked to be great. We are all chosen. You ever hear of an artist paint on a canvas using one brush? One color? One style? 9 times out of 10 the answer is no. It may take the artist some time to complete the painting but once they take a step back, change their perspective and acknowledge where they started to where they are at that moment, is when the artist begins to see all the polychromatic hues uniting together, in what is the making to a great masterpiece. Because that artist is YOU. Every brush, every color, and every style you apply are the tools of strife needed to create a beautiful painting on your canvas of life. If I believe I can do anything I put my mind to, then you surely can too.