Embracing the unknown: Living with epilepsy and finding purpose

Life has a funny way of changing in an instant. For me, that moment came on March 26, 2020. I was a 19-year-old college student, full of energy, ambition, and independence. My life was one of endless possibilities, and I never gave much thought to health complications—especially something as life-altering as epilepsy. But that morning, everything shifted.

It began like any other day, but by the time I regained consciousness, my world had flipped upside down. I found myself surrounded by paramedics, with my mom in tears and my younger brother standing nearby, his face filled with worry. I had blacked out and had my first seizure. It wasn’t just a one-time event. It was the start of a new, uncharted chapter of my life—one that would force me to face the unknown head-on.

The Journey to Diagnosis

Before that day, I knew very little about epilepsy. It was one of those terms you hear but never think much about. I had seen movies that showed dramatic seizures, but those images felt distant and irrelevant to my own life. Suddenly, epilepsy was no longer a vague concept—it was my reality.

In the months that followed, my world became a series of terrifying unknowns. I began having recurring seizures, each one unpredictable and overwhelming. I was no longer in control of my body, and that loss of control consumed me with fear. One particularly terrifying morning in June 2020, I lost my hearing. The panic that followed was overwhelming—I couldn’t breathe, and the sensation of being trapped in my own body felt like an inescapable nightmare.

The following days brought more frightening moments, including a seizure while FaceTiming a friend on the eve of my 20th birthday. I was terrified and confused, unsure of what was happening to me. The diagnosis came after extensive testing at the Mayo Clinic: I was epileptic.

The doctor explained my condition through a metaphor I could understand. She compared my seizures to earthquakes—just as tectonic plates shift and eventually break, my neurons experienced the same thing. Stress, lack of sleep, and illness were all triggers that could lower my threshold, making seizures more likely. Hearing those words was a shock, and I felt both fear and relief. Fear because I didn’t know what would come next, and relief because at least I had an answer.

Living with Epilepsy: Adjusting to a New Reality

As I began adjusting to life with epilepsy, I learned that managing my condition meant making significant lifestyle changes. I had always struggled with my weight, and I quickly learned that it played a critical role in my treatment. The dosage of my medication depended on my weight, and with my new condition, I had to be careful not to lower my seizure threshold by neglecting my health.

I had to stop working out for a while, unsure whether it would affect my medication levels. I missed being active, and the struggle of regaining control over my body and my health became harder with time. There were moments when I felt overwhelmed — especially when my weight seemed to impact not just my health, but also my ability to manage my condition.

But after my most recent seizure, I made a decision to take charge. I hired a trainer and began attending group fitness classes. The gym became a place of refuge where I could focus on regaining my strength, both physically and mentally. The classes helped me stay accountable, and I made new friends along the way. There were moments of vulnerability, but I reminded myself why I needed to keep going: for my health, for my future, and for the people who loved me.

The hardest part was changing my eating habits. It was easy to slip into old, careless habits, but I knew that in order to take control of my health, I had to make better choices. I still have moments when I slip up, but the reminder to stay consistent is always there. A turning point for me came during a hurricane in Florida. I had barely slept the night before, and my boyfriend, Curtis, noticed that something was off with me. When I began to panic, convinced that it seemed that I was about to have a seizure, I was reminded once again of the importance of staying on top of my health —taking my medication, managing my stress, not letting fear take over.

The Unknown: Confronting the Fear

Living with epilepsy is a constant balancing act. Despite my best efforts, the unknown is always lurking. Over the next few years, I had what I called “slow moments” — brief, unsettling episodes where I felt disconnected from my body, like I was watching my life unfold from a distance. They only lasted for a few seconds, but they were enough to remind me that I was still living with an invisible illness that could strike at any moment.

I would be going about my day, when suddenly, I would feel a wave of dizziness or disorientation. It wasn’t a full-blown seizure, but the fear it triggered was enough to make my heart race. At first, I didn’t understand what was happening. I had a conversation with my twin brother one day at a pizza bar when I experienced another “slow moment.” I had to speak out loud to let him know something was wrong. It was a reminder that I had to remain vigilant and aware of my health at all times.

But perhaps the hardest part of living with epilepsy is the uncertainty. Seizures are unpredictable, and doctors still don’t fully understand why they happen. There were times when I questioned my diagnosis, wondering if this was just a phase, a temporary setback. But on Dec. 31, 2023, everything changed again.

The Return of the Seizure

That morning, my world came crashing back. I had a seizure that shook my family to their core. My parents heard a loud bang upstairs, and my dad initially thought it was a painting falling off the wall — until he realized it was me. When I woke up, I saw the fear in my family’s eyes, and it broke my heart.

I had been living a life that felt somewhat normal, thinking I had conquered my epilepsy. But that seizure reminded me that my journey with epilepsy was far from over. It was a wake-up call that I could never take my health for granted. In the aftermath, I had to rely on my support system more than ever. I couldn’t drive for six months, and I found myself slowing down in ways I had never expected. But through it all, my family stepped in without hesitation, reminding me that I wasn’t alone.

Finding Purpose Through Struggle

Epilepsy has shaped me in ways I never imagined. It has forced me to confront the invisible battles many people face — battles that others may not see or understand. But it has also given me a deeper sense of purpose.

I want to share my story not for sympathy, but to raise awareness. Epilepsy is an invisible illness, and its impact is often misunderstood. The stigma surrounding it needs to be broken. No one should feel ashamed to talk about their condition. No one should feel isolated or afraid to ask for help.

I’ve learned to embrace the unknown, not as a source of fear, but as an opportunity for growth. Each day I wake up without a seizure is a victory, and I hold onto that gratitude. I share my journey to remind others that they are not alone. I want to give hope to those who are struggling in silence, to let them know that there is strength in vulnerability, and there is power in community.

To those living with epilepsy: You are seen. Your struggles are real, but they do not define you. You are strong, and together, we can break the stigma. To the caregivers and loved ones: We need you. Your support means everything to us.

In the face of the unknown, there is strength. And that strength comes from sharing our stories, supporting one another, and living with purpose.

A Message to Others Like Me

To anyone diagnosed later in life: I see you. I know how hard it is to juggle life’s challenges while navigating a health complication. You are not alone. By sharing our experiences, we build a community of understanding and support. Epilepsy doesn’t define me, but it has shaped who I am. It has taught me resilience, empathy, and the power of vulnerability.

I share my story not for pity, but for purpose. Let’s break the stigma together. Let’s create a world where invisible illnesses are met with compassion and understanding. Together, we are stronger.

Local resident Lauren Mendelsohn is the daughter of Jason and Ronni Mendelsohn.