Sunday, April 6, 2014

Words from Steve

Hello All!

My name is Steven Mszyco and I am a member of the National Youth Council. Here’s a little backstory about how I became connected with epilepsy….

Growing up I had very little exposure to epilepsy or any condition that required one to take medications. In elementary school through junior high, I do not recall knowing anyone with epilepsy or ever witnessing a seizure (most likely because no one TALKED ABOUT IT). I can say that when I came across the word ‘epilepsy’ it always seemed unique to me for a reason I cannot completely explain. I think it is because ‘eh-pill-ehp-see’ doesn’t sound like any other word in the English language and certainly shares no similarities with the word ‘seizure’ other than by definition. Thus, it had been a mystery to me; a puzzle persay. And I am a person that finds great joy in solving puzzles. As strange as it seems, I feel that my view of the word itself was the beginning of a lifelong connection.

In high school, my younger brother befriended a kid up the street who experienced occasional tonic-clonic seizures. They’d often play in the backyard or in the house, and I quickly realized that this kid seemed completely normal. So what was all this hub-bub about medication and seizures? To be honest, at the time I didn’t care. After my brother witnessed one of his seizures, I asked my parents for more information about epilepsy, and I got vague answers. Basically they told me to get his mom or dad if I saw him fall down and move abnormally… but fortunately that day never came.

College is where everything came together. I had decided that my love of problem-solving would best be suited with a career in medicine. My university’s neuroscience program happened to be one of the best in the country and my experience with an introductory course in neuroscience immediately got me hooked. But it wasn’t until I met Jordan Hinds, sitting at a table labeled “Epilepsy Foundation Youth Council” in my school’s volunteer fair, that epilepsy once again re-entered my life. Here was a group that openly TALKED ABOUT IT. It was in this way and only through this way that I came to learn more about youth living with epilepsy. As I researched the science of epilepsy in school, I also became aware of the need for youth support, advocacy and education while volunteering for the Pittsburgh’s Epilepsy Foundation Youth Council. I realized that the program had an amazing cause and desperately needed help regarding leadership and longevity. These were two pillars that I felt I could offer.

As I became more involved with Youth Council, I certainly became more attached to epilepsy. I came to understand that making a difference all came down to this attachment. I began to participate in research in pediatric epilepsy around this time as well. Our Youth Council was extremely successful in starting up education and advocacy projects, providing a voice for the challenges that youth with epilepsy face, giving support to those that needed it, and overall growing as a council. I even got to see my neighbor at many of the Epilepsy Foundation events that we volunteered in. We accomplished so much in those couple years that it remains a constant inspiration to me as to what a group of passionate like-minded people can achieve in the right environment. Needless to say, there were many difficulties along the way, but I hardly remember them in light of the strides forward that we made.

Things were certainly good. But not all good things last. Toward the end of my college career some major changes happened. Emily, one of our most dedicated leaders, moved away from Pittsburgh and became involved in National YC. Then Bridget, our President, had to move away as well. Two of the brightest and most passionate leaders in our Youth Council were gone. Nonetheless, we pushed on and were still able to move forward with various projects. However, the day finally came when the guy in charge had to move on with his career. Jordan, the one that introduced me to Youth Council and our affiliate leader, had to leave as well. I knew I had to step up and that is exactly what I tried my best to do. I made sure our Youth Council stayed active and continued with projects. We were even able to reach out and recruit new members.

When I had to leave Pittsburgh for medical school to follow my dream of becoming a neurologist, I realized that my attachment with epilepsy and the Epilepsy Foundation had many years still ahead of it. It was far from over because I was lucky enough to become a part of the National Youth Council and make a difference on a larger scale. I realize that I left my local Youth Council back in Pittsburgh in a bit of a struggling state. But I found out through my work at National that many regions don’t have ANY means of youth support. Also, I realized that internationally the stigma can be even worse, and it was about time to do something about that as well. Of course, National YC has been working on developing some MAJOR projects including YC networking, our SynApps campaign, Peer2Peer affiliate youth training, and much more.

So I guess you could say my connection with epilepsy is pretty complex. I still want to figure out the science behind it via research and problem-solving. I still want to help those dealing with refractory seizures via my career as a neurologist. I still want to help others find well-organized Youth Councils in their region for support and friendships. And I still want to work to eliminate the stigma both in the United States and throughout the world. Overall, I’d say my favorite part of being connected with epilepsy is getting to witness the astonishing inspiration I see in the lives of others tied in to the same great cause.


I’ve made some amazing friends on this journey, and I still feel like the journey is only beginning. As you may have guessed by now, I do not have epilepsy. And I’m sure you understand that those without epilepsy, especially your friends, will want to help you achieve your goals. Whether its opening up about your epilepsy, starting a youth council, dealing with bullying, or not being able to drive, etc… there will ALWAYS be more people to help you up than pull you down. And I think that is a mantra worth remembering.

Feel free to comment below with any questions for me.