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Wednesday, November 15, 2017

My Story - Growing Up

Growing up can be tough. Growing up with epilepsy can be more tough. Sometimes it can be really tough. Luckily, there were some things that helped me along the way.

Early on, Dr. Wang told my parents not to treat me any differently than any other child. He told them to let me do whatever the other children do, and not stop me. This was great, because I was still allowed to climb trees, and swim, and ride my bike, and do all the things that "normal" kids get to do. But that doesn't mean that nothing was different for me.

Anyone who has ever asked me to tumble ("do back flips") knows that my parents always taught me to protect my head. This is something that has become habit. I can't do a back tuck because it is beyond unnatural for me to go backwards. I don't know where I'm going, and therefore I can't guarantee that my head is going to be safe. Even attempting the backwards motion is almost impossible for me.

My parents also told me, from an early age, that all of my teachers, coaches and close friends should know about my seizures. That didn't mean that I had to tell everyone, but there were a list of people who should always know. That was to keep me safe. If I had a seizure in class, or at a sports practice, and my teacher or coach didn't know, then they would have no idea how to handle it, and would likely freak out (like many people do when they see a seizure.) If they were informed ahead of time, they could prepare themselves for that scenario. My friends knowing did come in handy a couple times. Those stories will be saved for later.

These days, I pretty much do tell everyone (as evidenced by this blog.) OK, not quite everyone, but there is nobody that I would hide it from. If it comes up in conversation, then it comes up and I don't worry about it. I tell my story like it's an open book, and I answer any questions that people may have.

Many people who I know who have epilepsy went through this phase of being diagnosed. That diagnosis generally cones with a phase of being upset, depressed, embarrassed, and/or other deep feelings. I never went through that because it was always a part of me. It was just a part of life for me, so I can't always fully understand those feelings when people talk about it.

All of my close friends have always known about my seizures, and a few have seen me have seizures. But they also know that my epilepsy is the one thing they could never joke about. People can make fun of me for being a nerd, or being a cheerleader, or playing too many video games, and I accept all of that; I usually just laugh it off. But having seizures is not something that I chose, and it's the one thing that I don't let people joke about, even to this day.

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