My Journey Through Epilepsy: Embracing the Wonderland

Introduction to My Story

My name is Katelyn, and my story resembles Alice's adventure in Wonderland. Like Alice, I have encountered a strange world full of curiosity and fear. However, rather than meeting whimsical characters such as the Queen of Hearts or the Mad Hatter, I found myself navigating through a landscape filled with doctors, medical tests, MRIs, and EEGs. Life has changed dramatically for me—this is my own scary “Wonderland.” Little did I know that my journey would be a mix of loss and life-altering experiences.

The Start of My Epileptic Journey

The onset of my journey with epilepsy began in the spring of 2006 when I was just fourteen years old and facing the trials of my first year in high school. Everything changed one fateful morning as I prepared for school. I experienced my first seizure and woke up in a hospital bed, enveloped in confusion. I remember asking myself, “What will my life be like? What happened? Where am I? How did I get here? Why me?” At the time, I thought my learning disability was the biggest challenge I faced. Little did I know, I was about to embark on a much more daunting adventure.

Understanding Epilepsy

Before my diagnosis, I didn’t fully grasp what epilepsy entailed. I had only seen my father experience seizures, and it terrified me. I never expected to follow in his footsteps. He had a severe case of epilepsy and sadly passed when he was just 13 years old. When I received my diagnosis, I feared I would face the same gruesome seizures that plagued my father. However, doctors assured me that my seizures were different.

I learned that I would have to manage unexpected seizures, known as “Tonic-Clonic” (formerly referred to as Grand Mal) and Absence Seizures. My triggers include stress and lack of sleep. To combat anxiety and prevent seizures, I created a playlist entitled “My Soundtrack of Life.” After my first seizure, I took a significant amount of time off from school, dreading the thought of returning. My worst fear was having a seizure in class and no one knowing how to help.

Returning to School

It took considerable time to mentally prepare for school again. The journey back was fraught with anxiety and uncertainty. I worried about feeling isolated and whether my peers and teachers would be supportive. After all, navigating my condition brought on feelings of mistrust and fear of judgment.

Surprisingly, upon my return, my classmates welcomed me with open arms. They were eager to learn about my experience with epilepsy. It was comforting to realize that I wasn’t alone; my school community understood my challenges. Slowly, I learned to trust my friends and teachers with my new reality.

A Loss that Shaped My Life

A few months following my first seizure, I faced another devastating loss. In November 2006, I lost my father unexpectedly. His battle with epilepsy was severe and unpleasant. He was my role model, demonstrating strength despite his condition. He always encouraged me to “not let epilepsy define my life,” a mantra I strive to live by every day.

Despite these challenges, I persevered. I graduated high school in 2009, a remarkable accomplishment that fills me with pride.

The Emotional Rollercoaster of Epilepsy

Understanding and living with epilepsy can be frightening, especially when the possibility of an unexpected seizure looms. I experienced feelings of isolation and anxiety, leading me down a path of depression. I felt that no one could grasp the hurdles I encountered. Reflecting on my experiences, I recognized that sharing my journey could potentially help someone else.

The Power of Writing

Writing has been a passion of mine since childhood. I poured my feelings onto the page, crafting poems and stories. As a young girl, I felt unclear about where to direct my emotions without a point of reference. But as I continued writing, I found solace. My words served as a tool for healing, bridging the gap between my struggles and the aim to help others during their dark moments.

Initially, I wrote only for myself, hindered by my learning disabilities. However, I learned that many accomplished artists faced similar challenges. This insight inspired me to continue pursuing my passion for writing—even amid adversity. I realized that despite my battles, I could carve my own path and express my emotions authentically.

The Role of Animals in My Life

In addition to writing, I have a deep love for animals. Over the years, I have had both cats and dogs that provided immense support during my struggles. My dog Quinn has been particularly special, helping me regain a sense of wholeness.

Three years ago, I pursued a dream I once thought impossible—to work at a veterinary hospital. Many doubted my potential, believing my epilepsy and unique learning style would hinder my ability to manage the emotional toll of the job. However, I wanted to prove them wrong.

While my tasks may seem small, they have a profound impact on me. The support I receive from my coworkers bolsters my self-confidence and self-esteem. This job allowed me to break free from my shell, demonstrating to everyone that I can contribute meaningfully, regardless of my disability.

Katelyn's dog named Quinn, on a walk in the snow

Embracing My Epileptic Life

Throughout my 33 years, I have experienced many ups and downs—unexpected illness, loss, and learning disabilities. Yet, these struggles have made me stronger. Alongside the hardships, I have encountered beautiful adventures, including my job and the joy of pet ownership. I find it miraculous that I am now able to share my story about epilepsy, offering a glimpse of hope to others in similar situations.

Epilepsy can be an emotional rollercoaster. It has introduced additional social anxiety and feelings of isolation. However, I’ve dedicated myself to guiding others through their struggles. Knowing someone else shares your experience can lighten the load.

Looking Towards a Brighter Future

As I continue this journey, I wonder what my life will ultimately look like. It has been a rocky road, but I have found strength and purpose. I learned that self-love is of utmost importance. Today, I proudly embrace my identity as “An Epileptic.” Affectionately, I refer to myself as a “Purple Warrior,” signifying resilience in the face of adversity.

In a world filled with challenges, my story stands as proof that resilience can lead to a meaningful life, not defined by one's struggles but enriched by them. Reach out. Share your battles. We are not alone. Together, we can make a difference.