Our brains are the neural networks which not only feed information to our exterior limbs but house our personalities and the very essence of who we are. Now imagine having a significant part of those neural pathways excavated. How would your life be different if nearly ⅕ of your brain was missing? I have experienced those things and many others on my lifelong journey of brain rehab.
One day when I was around 9 months old, something started to happen to me. I was having strange spasms throughout my whole body and no one knew what it was. My parents took me to the doctor and he said it was just pain from an ear infection. However, after the ear infection got better, the spasms did not go away. I was having them multiple times a day. Only after I got older did I understand, I was having 50 - 60 seizures a day, on average one every 24 minutes, and they would usually come out of nowhere. My parents learned what to look for and always kept me close to them so they could watch me and be able to know if I was going to have another seizure. I was not able to tell them if one was going to happen so they needed to watch me closely and look for warning signs. I would be perfectly fine and then I would zone out and l would lose all color in my face, have a blank stare and not really know what was going on around me. It was not always easy to notice my seizures when I was younger because it looked like I was just zoning out. I started to see doctors , hoping they could find a treatment to help me.
My seizure diagnosis has changed throughout my life. As a baby I was diagnosed with Infantile Spasms, then through my toddler years my seizures changed and were considered Focal Seizures, and I have had 2 Grand Mal seizures: One was when I was 3 years old and one was when I was 10 years old.
I started going to see doctors regularly at a very young age to try to find out what was causing me to have seizures. The doctors told us that I would have to be on medication to try to help slow down the seizure activity. I would try different medicines hoping each time that this would be the one to help me be stable . I went through a journey of trying many medications until I finally found one that helped keep my seizures under control. We were growing very desperate for anything to help me. I was told by my parents that there was a long process to get to my surgery. There were many tests that had to be done to make sure everything was good to go for surgery. Doctors were talking about having to do surgery a year before surgery would even happen. I was very scared at this point of time because I was not certain what was going to happen to me afterwards. And I was scared I might even die!
I finally had the surgery on July 27th 2011, with the intention of not having seizures again. I would end up being in surgery for 8 hours. They removed about 20 percent of my brain, which was most of my right temporal lobe because that was the area of my brain where the seizures were coming from. I was surrounded by love, because I would have the support of my mom, dad and brother, my nana Kim, nana Terry, grandma Kiraly and grandpa Kiraly. Everyone including the surgeon wanted everything to run smoothly. My mom had only one wish, and that was for the surgeon to have a steady hand, clear head and be well rested. Everyone was very scared and was patiently waiting for the doctor to bring the news. The doctor finally came out to tell my parents and everyone there that the surgery was successful and I was officially recovering. Everyone was happy and relieved that everything went according to plan.
My parents were told by the doctor that if they would have decided not to do the surgery that throughout my life I would have what is called a misfire in my brain. The surgery was what we considered successful because the doctor had told my parents I would not be able to drive or live on my own. I was very surprised by this news. Now I am 16 years old and I have my license and can drive. Because of the surgery I have a large scar on the right side of my head. I used to be self conscious of my scar, but now I have accepted it because it is a part of me and it tells my story. A trade off for having the surgery is losing my peripheral vision in the upper left side of both eyes which I have learned to adapt to. When people come up on my left side while I am facing forward somewhere I can not see them. I still am not able to play full contact sports like hockey, lacrosse, and tackle football and that kind of frustrated me at first. Because of my size I would have been a great football player. But I accepted it because I understood that I couldn’t play. I was also told that I would have trouble with learning because my brain does not process as fast as other peoples do. I made a promise to myself to prove everyone wrong , and push harder and challenge myself. I make sure to give 200% at everything I do to make sure I can keep up. I first started school in self contained classes because I was different from my peers and I learned things differently. I felt different from everyone else. I would start going into normal classes by 2nd grade and not needing to be pulled out for core subjects. I have always had an IEP which is an Individual Education plan. When I got to middle school that changed to a 504 plan. Those plans were in place to make sure I got the extra help I needed. I still have a 504 plan but there are only a few accommodations in the plan just to help make sure I can still get the things I need at school. I felt like I was starting to finally get the academic help I needed because I have always struggled in school. I started growing my knowledge of life and how to adapt to change. It seemed to me that I could now learn for myself and be more independent. Now I am in an honors class, giving it my all and proving that I am no different than anyone else and showing I belong where I am. Through the subtraction of a small part of my brain, I have added the skills to make me who I am today. I am very happy to be able to do the things the doctors said I may not be able to do.
For years I have been working harder than most of my peers, because the things that come naturally to others are more difficult for me. The hard work I have put in has finally paid off because now I was able to skip my junior year of high school. My GPA is 3.8 which is higher than I ever thought it would be while in high school.
Never would I have thought that I would be graduating a year early. On top of that I never would have thought that I would be making music that people actually want to listen to. Epilepsy is just a roadblock in life but I have learned to never let that stop me from doing what I love and accomplishing my goals in life.