Normally when I sit down to write for Epilepsy Durham Region, the words have a way of flowing out of my fingertips and onto the keyboard. When it comes to epilepsy and me, I have been the archetype of being an open book, feel so lucky to act as an advocate for other people living with epilepsy, and taking part in such amazing events and adventures with this organization – all of these things are met with a passion that translates easily onto paper. But as I sit here and think about our February theme, family, I struggle to articulate all of the emotions I have; to speak of how epilepsy has affected me is the easy part, but to speak of how it has impacted my family has me at a loss for words.
Hi there, you all read about how Epilepsy affects the person, how a parent's life gets affects, but what about the siblings?? That's where I'm coming in.
My name is Jonathan Bolanos and I am 14 years old. My brother Julian has Epilepsy, in fact he has three forms of Epilepsy. He wasn't diagnosed until I was 10 and honestly, I really didn't understand what it was. All I knew was that my little brother who was 8 years old would constantly roll his eyes. Mom and dad would bring him back and forth to see his Neurologist and he was on tons of different pills.
"Mommy, did you have a seizure and forget that I only like my potatoes mashed?" asks my 5 year old, without a hint of amusement in his voice. When my sister heard, she laughed and then shared the story with Grandma and the rest of the family. To us, it's funny, but to a 5 year old whose mom started having seizures when he was 2, it's his reality.
January 17th, 7:00 am. It has been a while since I have been this excited about heading to work on a Saturday morning. But today, I get to be a part of something I enjoyed so much as a child – an exhibition at the Ontario Science Centre (yes, I realize that the above statement most likely places me somewhere in the nerd spectrum, and no… I’m not ashamed of that).
Let’s flashback fifteen years or so to one of the last school trips to the Ontario Science Centre that I remember from elementary school. There was an amazing NASA exhibition in which my class was broken up into two teams, one on the shuttle, and the other looking after ground control. I remember coming home convinced that I wanted to be an astronaut. This was always the beauty of the Science Centre to me. With every interactive exhibition, I always felt a spark of creativity, curiosity, and ingenuity; more importantly, the Science Centre made me feel empowered by learning, and helped me...
How was it? That is the question that I am still getting asked on a daily basis. "So....How was it?" I have a fairly standard, generic answer for more people –it was amazing, beautiful, breath taking, exhilarating, challenging, successful. But the truth of it all is that I have been spending the better part of the last month trying to answer that question for myself. How was it?