Sam’s Story

My epilepsy journey started in my 6th-grade history class when I lost control of my body. I couldn’t move my arms or legs, nor could I speak. Twenty-three years later and my first seizure is still the most terrifying seizure I’ve had. As I sat in my seat paralyzed I prayed for someone, anyone to notice I was not myself. One person did, her name was Michelle Ross and she saved me. She let the teacher know there was something wrong with me. That was the first time I had ever been in an ambulance or heard the word seizure. My family and I didn’t know what seizures or epilepsy was so I didn’t grasp what it meant to be diagnosed with epilepsy.


It wasn’t until my first neurologist visit that I knew my life was going to change. I was prescribed anti-convulsant drugs one of many. I hated taking the medication because it made me exhausted, angry, and not myself. The anti-convulsant drugs also made me feel like I wasn’t “normal” like my peers. At an age of wanting to be like everyone else, I stood out because of my epilepsy and I hated that. In middle school, I became the “girl with seizures.” Without realizing it I hid my epilepsy from the world. Anything that had to do with seizures I refused to acknowledge. This was the beginning of my twenty-year-long double life.

Once I got into high school I figured I could let go of the “girl with seizures” title and reinvent myself. However, the only way to do that was to act like everyone else and no one would notice I was sick. This led me to stop taking my medication and flushing it down the toilet so my mom wouldn’t notice. Even though I hated having seizures I hated taking the medication even more. The seizure once a month around my menstrual cycle was worth not having to take the medication every day.

My mom and my neurologist never understood why my medication levels were not where they should be. The neurologist theorized it was because my weight was constantly fluctuating. I was either ten pounds too heavy or ten pounds too skinny. Through the constant battles with my body weight, my desperate attempt to hide epilepsy from the world, and the seizures themselves I developed low self-esteem.

I felt like a burden to my family. I felt like I was never enough. I felt like an incomplete person.

Due to these negative feelings that I never shared with anyone, I stayed in a very toxic relationship accepting less than the bare minimum. He cheated on me, told me no one would love me because of my epilepsy, and made me feel insignificant. It wasn’t until he left me for someone else and I started putting the pieces of myself back together that I realized how amazing I really am.

However, epilepsy was still taunting me by not allowing me to get my driver’s license, something I’ve wanted since I was 16. After my neurologist rejected my request for my driver’s license again I went crawling to my family’s group chat complaining about epilepsy. This time my older brother said, “Maybe you’re meant to figure out epilepsy,” and with that sentence, my perspective changed. I was no longer going to view epilepsy as my downfall but rather as a blessing. I decided to create a blog (no longer available), social media accounts and a podcast all dedicated to helping others in the epilepsy community feel less alone. “Figuring Out Epilepsy” gave my life purpose and direction. I was no longer living my life in the sorrows of epilepsy but dedicated to bringing light to others. While I help others Figure Out Epilepsy, I myself am still trying to figure out epilepsy, a journey of personal growth.

Kind words you would like to share with a parent or someone newly diagnosed:
“For someone newly diagnosed I would say Epilepsy isn’t the end but rather the beginning to something different.
For a parent I would say be patient and try putting themselves in their child shoes. Imagine how difficult it would be living with epilepsy knowing how worried they are for you.”


Connect with Sam D:
Instagram & TikTok: @FiguringOutEpilepsy
Listen to her podcast: Figuring Out Epilepsy available on Spotify, Apple, Amazon, Google and YouTube