My name is Katelyn and my story is like Alice’s, where she found herself in the strange world of Wonderland. My journey in Wonderland is full of loss and life-changing moments; I have had my share of the good, bad and ugly.
Like Alice, I experienced a strange place full of curiosity and fear. Alice unexpectedly saw a different world with which she was unfamiliar. But, unlike Alice, I did not meet a queen of hearts, a mad hatter, a Cheshire Cat, or a caterpillar; I crossed paths with doctors, tests, MRIs, and EEGs, with a sprinkle of odd, hazy medications. It is my new life—my own scary “Wonderland.” My journey would never be the same.
My story of becoming Epileptic started in the spring of 2006. I was fourteen, in my first year of high school, and school had already given me obstacles. I was getting ready for school when everything changed. After my first seizure, I only remember bits and pieces of that day. The only thing I recall is waking up in a hospital bed in a foggy and hazy swirl of wonder, asking myself, “What will my life be like? What happened? Where am I? How did I get here? And why me?” I thought having a learning disability was the hardest thing I had to deal with. It was already hard for me to get through school since I learned differently. I did not need this illness and the loss of my father in the following months.
I didn't even know what the word “Epilepsy” meant or what it was. I only knew of something called ‘seizures’ since I witnessed my father having them growing up; the seizures were scary enough. I did not expect I would be going down the same rocky path as my father did when he was alive. Before I knew it, I was going through the seizures myself. When I was first diagnosed, I was terrified that I would have the same horrible seizures as my father did; my dad followed the white rabbit and fell down the rabbit hole when he was 13. I was informed that my seizures were not like his.
I was informed that I had to deal with unexpected seizures called “Tonic-Clonic” (formerly called Grand Mal) and Absence Seizures throughout my life. Sadly, I do not have the luxury of a sign to let me know that I will have a seizure; it just happens out of the blue. My triggers are stress and lack of sleep. Listening to music, especially a group of songs I have called “My Soundtrack of Life”, gets me to calm my anxiety to avoid a seizure. After my first seizure, I took a couple of weeks off from school, and I feared returning to it. My worst fear was that I would have a seizure at school and no one would know what to do. It was a whole new life of worry. It took time to return to explore my new world. I needed to learn about myself and the changes I had to get used to. But as time passed, I found the drive and strength in my heart and soul to return; I knew I had to return to conquer my fear and to overcome barriers, which I did.
It was hard to go back, as nothing had changed because of my worries about feeling alone in school; my mind wondered if I could trust the teachers and the school with my disorder, and if there could be a chance of having judgmental friends. But, to my surprise, when I returned to school, I was greeted with open arms; they wanted to learn more about my adventure with Epilepsy. I worried about nothing; it was just me, “Katelyn”; nothing had changed. My school understood as well. Trusting the school, teachers, and friends with my new life was hard.
A couple of months after my first seizure, when I was 15, I lost my father unexpectedly in November 2006. He had a horrible case of Epilepsy, which was not controlled very well. My father was my role model. He never let Epilepsy get him down. He always said, “Don’t let it run your life. You run your own life,” which I try to live by now.
Not only was it hard to go back to school after my first seizure, but it was hard to get through school. But I completed high school and graduated in 2009. I will always be proud of it.
It was hard to understand at a young age. It is scary going through life not knowing when or if a seizure will show its wrath; it can happen at any time, anywhere. I thought I was alone and that no one would understand my hurdles, which brought on depression, isolation and social anxiety. To this day, I would never want a person to feel that way; it is the worst feeling. That’s when I thought putting my story out there was a bright idea. I thought my story could help someone.
I have had a passion for writing since I was young, and I would write anything that came to my mind, whether poems, rambles of my feelings, or what had just happened that day. I never knew where to put my emotions when I was young. I had no one to point me in the right direction, no shoulder to cry on. So, I kept everything in; I started writing about my thoughts and poetry. I’d pour my heart into my story so I could help a lonely person get through their darkness. I have been through a lot, but ink-to-paper will always heal my soul and my heart.
In the past, I just wrote for myself in my journals. I always felt that I could not write because of my learning disabilities. However, I discovered that many famous poets, painters, and even some in Hollywood live with the same issues, which gave me the confidence to keep doing what I love: writing my hardships and poetry to express my emotions on paper. They did what they loved too. Learning about these famous, well-known people taught me that you can do anything you want with your life, no matter your battles.
Animals are also something I’m passionate about. I have had dogs and cats that help me with all my struggles. Animals are essential to my heart. My dog Quinn helps me every day; having a dog that loves me makes me whole again. I am especially passionate about helping animals who are sick and injured. I have never felt confident I would have a chance to work at a veterinary hospital; that changed three years ago. Everyone told me I would not be the right fit for my dream because of my Epilepsy and how I learn differently; even family and friends doubted that I would be able to manage the harsh, emotional job. Of course, I proved them wrong.
While working in the presence of animals gave me self-confidence and self-esteem. Lately, I have been told I mean so much to the employees because I work so hard, which means the world to me. I did not realize they saw my work. It might be a small job, and I only do small tasks, but it means a lot to me. This job made me come out of my shell. I showed everyone questioning my ability to work with animals that I could do this.
Throughout my 33 years, I have been through many intense ups and downs: an unexpected illness, depression, social anxiety, learning disabilities, loss of loved ones, loss of beloved animals, ends of relationships and wilting friendships that have made me stronger.
I have also experienced many beautiful adventures: a job I never knew I would get and a wonderful dog that stole my heart. Also, to my surprise, I would be writing about my story of Epilepsy and teaching others about Epilepsy through my own story. I never knew the darkness would subside. I cannot believe I found the strength to get through the storm.
Epilepsy has been a rollercoaster of emotions that brought on additional social anxiety, stress, and feelings of isolation and loneliness. However, throughout the years, I found the spirit to find ways to help others feel that they are not alone, like when I was first diagnosed. Knowing someone is going through the same thing can make life easier. All I want to do now is to make Epilepsy known and tell my own story so others will know they aren’t alone either, that there are others out there in this wild world, and that epilepsy is not as scary as we think.
I still wonder about what my life will be like. It has been a rocky road. But I have found my way to a better tomorrow. I found who I am. It made me stronger, and I could be whoever I wanted. I’ve learned that self-love is the most essential thing in life. I am and will always be proud to call myself “An Epileptic.” I am a daughter of an Epileptic. Life is an epic Epileptic life. I like to say, “I am a Purple Warrior.”
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