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, and 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.
I grew up in a very tight knit family. I was the stereotypical middle child, constantly trying to emulate my older sister in all of her grace, inseparable from my younger brother, the boy with the direct link to my funny bone, and somehow finding the ideal balance between having a best friend in my mom and being very much Daddy's little girl. We were a pretty standard family, until I turned fourteen, had my first seizure, and turned everyone's world upside down.
Living with epilepsy, having multiple seizures a week, going on and off different medications with no improvements, and feeling the isolation that so often comes along with this disease is a constant uphill battle in and of itself, but watching what all of that does to your family is an evil of its own.
Seizures became a part of everyday life for my family. My parents would come in and check on me every morning in bed to make sure I was actually sleeping and not having a seizure (my dad always thought he was being especially sneaky by lifting the sheets up at the bottom of the bed to see if my toes were clenched....but I always knew he was there). Everyone in the house had become accustomed to heightening their listening skills when I wasn't in the same room, constantly listening for the next large thud, the sound of me falling to the ground from another seizure.
With the worst seizures, I struggled with the physical pain they left me in, the emotional weight I felt, and the exhaustion from not only the seizures themselves, but the time it took to recover. I always got to see how grateful my family was to watch as I felt better. But what I didn't see was that everyone's life would stop to make sure that I found a way to get back on my feet again. I didn't see that my sister hugged me a little bit tighter every time she had to leave to go back to university just in case that was the last time she could. I didn't notice as my brother made the transition from 'younger brother' into 'older brother' very quickly in an attempt to protect me from any harm that might come my way. I couldn't see that my parents had spent nights beside my hospital bed, not knowing if I would wake up the next day. I didn't see any of these things because they didn't let me.
Because of epilepsy, I watched as my parents did every possible thing they could to try to 'fix' me, and make sure I was healthy and happy, making sacrifices for me that would impact our entire family. I watched my siblings develop a constant state of fear for my well-being. But I also watched as four people came together with an unmatchable bond to ensure that I would feel safe, happy, protected, and loved. Not a day went by that they didn't give me a smile, laughs, hugs, and words of encouragement - most of all they gave me strength. This has always been the ongoing debate when it comes to my family when we reference epilepsy. Each and every one of them would argue that they found their strength in my ability to carry on, and I will fight tooth and nail that I am able to carry on because of their strength.
It is said that the only thing predictable about epilepsy is it's unpredictability, but there are a few things I know for certain. My family will always live with some amount of fear no matter how many years I go without a seizure (they still check on me in the mornings when I stay at my parents), and that my family has the amazing capability of coming together and overcoming any uncertainties that life may throw at us. If I know one thing for sure, I wouldn't be the person I am today without them being the driving force to help push me forward.
My family has and will always be the most important thing in the world to me because they truly personify that love can conquer all.
To you and all of your families.....
Happy Family Day
- Chelsea Kerstens