Growing up as an epileptic young girl in a Mennonite community brought about a unique set of emotions and challenges for me. From a very young age, I was about 6 months old when I had my first seizure. Epilepsy can be unpredictable and with my grand mal seizures it leads to feelings of fear and anxiety about when the next seizure may occur.
Why me? Why anyone, but in a close-knit community like the Mennonites, with the community of conformity and tradition, living in a small village was very isolating. I often felt like I was different, feeling inadequate and ashamed, I was figuring out my identity.
Despite these challenges, I had much love and support from my family, knowing they accepted me and I belonged. I was one of eight children, the oldest and always thought different, wanted different things than the norm in my parents Mennonite minds thought was right or normal.
Often frustrated, embarrassed, as I was unable to participate in certain activities or lead a normal life, being coddled and which can be especially challenging in a community where expectations were clear and rigid. I feel I missed out on things, and felt sad and angry with life.
In the isolation, quietness, it gave me time to pause and reflect. I wrote and became stronger, braver with the silent words I spoke to myself. Without other children around me that were epileptic, or many friends, It was lonely.
My seizures were under control with medication but the stigma and mental torment continued through my teens and it left me in a world of judgment, and silence.
Finding my inner strength, determination and drive I knew there was more, I could be more. I was my best and worst advocate on my journey to self find ways to thrive through the seasons of Kalina.
When I was eighteen I talked to my doctor about my seizures and was blessed to outgrow the seizures and get off the medication. Although I was apprehensive and wondering if I would have another seizure I was cautious and felt unsure about myself and life. There is a kaleidoscope of emotions, and experiences of having epilepsy that shaped who I am as an individual even today.
Later in life having my own children I wondered if it would be something that I passed to them but they never had any signs or seizures. My grandfather, and a cousin of mine had been epileptic, so it was something we had in the family so I worried about it.
Life brought many challenges and opportunities to me over the years and may experience a range of emotions from fear and isolation to acceptance and empowerment.
Like a butterfly evolved through a chrysalis journey, like the kintsugi woman we are golden with the pain, scars, past we are unique, beautiful and stronger than we ever imagined.
I am here to bring awareness and be an advocate for those with epilepsy and give back to the community, knowing that your feelings and emotions you experience are valid. Seek support from your loved ones, finding ways to cope and embracing your unique identity, you can create a fulfilling and meaningful life within the community, despite the challenges you may face.
You are an #empoweredepileptic together we can let go of the prejudices and myths. Take care of you, trust you, love YOU.
Kalina