It was an early morning and I was getting ready for school the way any 8th grader would when the home phone rang and it was my oldest sister calling in a voice of pure panic. She explained to my mother that while driving to their high school, my other sister had suddenly passed out in the car. There it was... absolute sheer panic. I could see it on my mom's face. The memory is as clear as if time stopped, permanently frozen. My entire family immediately entered into a state of the unknown. Life as we knew it at that moment had completely flipped upside down, never to be truly the same. For many years after that incident, my sister was in and out of the hospital after having episodes of what was mostly being referred to as "fainting" due to a lack of understanding of the medical problem. It took quite a long time for the actually diagnosis of epilepsy to emerge. From the very first episode until my sister's epilepsy was properly diagnosed and until she was able to find a way to control and prevent more episodes, were very daunting times for my family, and I can ensure you that as a younger sibling, I too had my own battle with epilepsy.
From the onset with that very first morning episode, I entered into a completely new world. Life no longer seemed normal. I began to spend numerous days and nights alone while my sister was in the hospital. I would go to school, only to see emergency response personnel in the hallways and know that that day and night were not going to be typical. There's one particular memory that is predominantly vivid. Again it starts in the early hours of the morning; I was awoken to a commotion on the main floor. Getting early out of bed it was to my surprise that the first person, or I should say people, that I awoke too were a handful of fireman standing in my kitchen. Of course it was a shock, but yeah, I knew what was occurring. Seconds later, my sister was being taking out of the house unconscious and on a stretcher. For the rest of the day, I was basically left in the dark, besides a quick update that she was now conscious. I began to develop a fear of waking up, a fear of the unknown, a fear that today or any other day has an unknown, and that the unknown could be catastrophic.
It seems I could go on and on recalling events revolving around my sister's epilepsy, and the fear I developed of the unknown, which just continued to grow and grow with every incident. Trying to explain and articulate the emotions and experiences tied with epilepsy is not an easy feat. Still to this day I carry around some of that fear with me. I have learned that it is common for family members of someone with epilepsy to carry around with them a sense of "survivors guilt", a constant question of why. That why cannot simply be answered, but speaking from experience, there is an end. After several years of living in the unknown, my sister was eventually diagnosed with epilepsy. Since then she has been able to gain increasing control of her life. She has been seizure free for three years now. I could not be more grateful.
- Mike Kerstens