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On My Way

Growing Up Separated - Life with epilepsy

By Zachery LeePublished 7 years ago 12 min read
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Another fun, little, hopefully captivating story line of a series of events that I've run into on my life line. Growing up with epilepsy wasn't exactly the funnest task in my life, but I dealt with it, again, in my own way.

At 8 years old, I developed Epilepsy. Years later I would discover it was on my own doing, but in the meantime, nobody knew where it came from, or how to really handle it. I was the first child in my city to have to go through the school system in the condition I was in. Little fun fact here, I was enrolled in the gifted program in school, but that was short lived. Third grade came along and while I loved bouncing my head off the walls in the gymnasium, climbing to outrageous heights and dropping onto my head for the laughs and smiles of other students and peers, it really didn't do much outside of hurt myself and well being. It first started in third grade, I was in class just like any other day, I told my mom I didn't want to go to school, that my head felt funny in a way that I couldn't quite explain. I told her that "my eyes got stuck" and she immediately shrugged it off, because I did have a tendency to lie a lot. She had me go anyway, and with as much complaining as I did, I still went on to school like it were any other day. Roughly a few hours into the day, I got that "funny feeling" in my head again while I was sitting in my seat. I couldn't explain it, but I knew what was about to happen. I called to my teacher and before anyone could react, I was having a seizure. It didn't last too long, but it was strong, and somewhat violent. My head thrashed from side to side, eventually getting stuck toward the left side as my eyes were glued in that direction. I had no control and fro what I'd imagine was a terrified look no my face. The teacher had called my mom and told her the same thing that I told her that morning before school. Mom came and got me, I was kind of smug about it but on the phone call that we had while I was in class, I blurted out "I TOLD YOU" and she immediately came and got me.

I had more in hers AND Dad's presence, it was a scary thing to deal with I'm sure. I sure as hell didn't know what to make of it. Following those events, were a ton of doctor appointments to try and figure out what was going on with my brain to create such thing to happen. I don't remember the name of my first neurologist, but I remember her calling them "Spells." This of course was after a series of Cat Scans, MRI's and EEG's that I had to go through in order for them to come to this conclusion. So, in the following year to come, they had administered multiple different medications in hopes that it would slow and even stop the seizures from happening. It didn't, but I would bet a big part of that was in the case that I hated taking all the pills I had to take. It got so bad that I was up to 35 pills a day as a child. It was more than ridiculous. So while I was doing whatever I could to try and be a normal kid, there was always this thing hanging over my head that ultimately separated me from the group. My meds fluctuation held me up in school. I went every day, but I was always tired, and because nobody had any kind of protocol for epilepsy, well, I basically got straight A's through all of elementary school whilst not learning anything.

Part of me trying to be a regular child was getting involved in sports. My dad LOVED hockey, each of my brothers played roller hockey for a good minute, and did BMX to follow. I wanted to be just like them in many ways, so I begged my dad to let me get into BMX. LOVED IT! The whole family drove out to this little piece of farm land every weekend and me and my brothers raced our bikes on an indoor track. There was an outdoor course too, but it was more for the experienced riders. I remember one day, before the race we were going to, I got all dressed up in my new racing stuff and was standing in the corner by the front door on a little piece of hard wood flooring. The doctors wanted us to keep a video record of my seizures so as soon as I started to have one, Mom yelled to Dad to go get the camera. When Dad got back with the camera it kicked into high gear and later I got to watch myself, spinning around in circles on this hard wood flooring like some kind of submitted ballerina. HUGE smile on my face through the whole process, it was uncontrollable but scary nonetheless. I got to race a few times, and I was pretty damn good at it too, but that's beyond the point here. All I wanted was to be normal, but that just wasn't an option here.

Hockey is where I had the most impact with my seizures, I played every position on the ice, but it got real risky when I hit the league that allowed checking. It was of course, body checks, but still extremely dangerous considering my condition. SO, I decided that I wanted to play goalie. It was a much more expensive place to be equipment wise, and we all knew the risks at hand. The coaches were informed and knew how to handle it given that i had a seizure at any point in time. Which only happened once, but it happened in the worst time possible. I was exhausted and we were in the last period of the game, time was running down and coach decided to pull the goalie so we could have an extra man on the ice. They waved for me to get to the bench, so I started that way, about halfway there, that feeling kicked in and I began to seize up. The coaches were still screaming at me to get off the ice then, shortly realized what was going on as I was shaking and wasn't really going anywhere fast. In the end I got off the ice, sat down in the penalty box, stretched out my legs and rested till I came too.

Now, as I said before there were a TON of doctor appointments, loads of medication and medication changes, and because of these things school became almost obsolete. I would either have to miss for appointments, or given that I had a seizure in class, the only protocol that was in place was to put me in the office and call my mom to come pick me up. It got comfortable that way so I mean, being a kid who's not too fond of going to school to begin with, I did kind of play the card from time to time, I would sleep through class and the teachers would blame it on the meds... I never faked a seizure, but I had slept through a lot of school, and got slid by because NOBODY knew what to do about my condition. I played the system like a beautiful violin... one that got my straight A's with basically no effort. Of course, it only lasted so long. By 5th grade things kicked in a different direction and while I was still in the gifted classes, I was also not getting cut much of a break. I went through the motions though and got through it. School wasn't that bad after a while, and I enjoyed going and knew that if I put my mind to it, I could get through whatever I needed. My family was very supportive through it all, well, when I saw them.. as far as I can remember. I guess on a siblings level I kind of felt shunned because I couldn't really do anything WITH THEM, it was always just me WANTING to be like them, but having to keep it short because I wasn't... normal. Mom babied me like it wasn't her business, Dad worked all the time, brothers never wanted to hangout, and my sisters had moved on with their lives for themselves.

Regardless, through the torment in time frames and scheduling complications, medical bills and so on... I'm actually pretty positive at this point I'd be dead, or in prison if I hadn't had my father for the few times that I did physically see him step into the picture and pay out. I've always felt a sense of self-inflicted guilt for the situation, cause for a long time, I really did hate his guts. I had no idea how ignorant I had been until YEARS later, but I swore to myself, one day, I'm going to do something spectacular to change what ultimately is the fate of this families name. Because of this I kind of dabble in and out of a lot of things... but I want to get back to what it was to have this condition here so lets get back to it shall we?

I mean, ultimately I suppose outside of constantly being either at the doctors, hooked up to machines with wires coming out of my head..or being so doped up inside of myself... There really wasn't too much else to deal with. I couldn't be a normal kid, no matter how hard I tried... Eventually, it all came back to me and I had to accept that this was my fate.

At 16 years old, I was given a choice. I could either stay on meds, and hope that one day my seizures would fade out OR, I could take the risk of a 60% chance of me dying on the operating table so that the surgeons could cut me open and try and take out whatever it was that was causing me to have seizures. At first, I didn't want anything to do with the idea. 40% chance at living just doesn't seem like enough. I recall this one faint memory in the hospital though, the moment that made me go for it. I saw my mom, and my dad, huddled up in the corner of the room, my mom was crying immensely, and my dad was holding her. I knew, at that moment, I had to try. Even if it cost me my life, I knew I had to go through with it. For them. I soon ended up with 3 weeks in the hospital, undergoing a surgery each week. The process of a craniotomy is astounding, to say the least. First, they cut my head open and placed wires inside of my brain to monitor all of my brain activity. The second surgery was to take the wires out and collect all of the data needed to further decide what they could do, given that they found the probable cause of my seizures, they moved onto the third and final surgery, where they removed a very much DEAD piece of brain matter that was causing a misfire in the synapses in my brain. I can explain it like this. Think of your brain as a mail room, you have your sorting station and all of the mailboxes. This is your synapses. Well, as it seemed that one of the sorting persons had become very angry with the way his job was going and, whenever told to put an assortment of mail into a specific area of mail slots, he would throw it as wildly as he could and that would mess up the whole system. The mail room would Spaatz out, and shut down entirely, right before rebooting after a sometimes very lengthy period of time being passed.

It wasn't always as crazy as that sounded, the seizures kind of fluxed between what would be considered casual or mild, into more serious outbursts. There were times where I would kind of just uncontrollably laugh and spin in circles until I lost my equilibrium and fell to the ground. Still laughing it off every step of the way. In fact, those were a favorite if I had to name one. Then there were times where I would fall, HARD. Once, I remember working on a bunch of bikes out behind my mom's boyfriend's trailer. It was late, like midnight or later, and there was 5 of us out back putting together bmx bikes using an industrial spotlight. We were all gathered around the hauling trailer that my grandpa made when I was a baby, and then it hit. Everything just became... surreal. I got really light headed and before I could tell anyone what was happening, I dropped to the ground, smashing my head on a trailer hitch on the way down. I woke up on the couch inside with my pants down around my ankles. IMMEDIATELY in a panic yelling at everyone surrounding me like some weird shit just went down. I was told after I dropped, I started shaking uncontrollably, and took my pants down myself. Rolling around on the ground until my mom's boyfriend's son Brian swooped me up and put me on the couch inside. I didn't know what to make of the situation, I just knew I was half naked in front of a bunch of people that had no business seeing me this way. That was the day that mom decided to bring me to the doctors to find out what our options were.

I can proudly say that I haven't had seizures since the operation took place, and I owe it to the doctors and my family to take the time to tell this story as a part of a sequential line that could change the face of this family. Cause, lets be honest here, I may be the last one in it, and as far as I have seen, nobody is going to get anywhere fast. Not even slow... So I'll keep pursuing what I believe is going to make the difference, and I would hope that in reading these articles, and seeing just how far I'm willing to take this, that I might inspire any of who reads this to NEVER give up on yourself, no matter your surroundings. Do more, fight for it. Not literally... sometimes literally... But build your mental game, push yourself, don't kill yourself in the process, but never let the things you want out of life slip away from you. NEVER GIVE UP! Also, please keep reading, I still got a ton of lines to spew out. I hope you're entertained here, cause of course, that, and a hopeful inspiration was the whole point of this. Thank you.

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About the Creator

Zachery Lee

Just a loner kid who's been through some things in his life. I have mountains of stories to tell, not all of them clean... I hope that my stories inspire, and maybe even teach you a bit of something about life.

Proceed with caution.

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