Shattering the Silence Around Epilepsy

I lived with epilepsy for 25 years. I wasn’t born with it. I was diagnosed at 12, but it wasn’t until my early thirties that doctors discovered the cause: a lesion on the left side of my brain. For years, I lived with unanswered questions, unpredictable seizures, and a lack of understanding from the world around me.

I had severe seizures in high school and sometimes in class, sometimes in front of everyone in the cafeteria. In college, they happened less publicly but were still traumatic. One of the hardest experiences came in 2008, when I had a seizure at home and hit my face on a marble table, knocking out three of my front teeth. I've had implants for over fifteen years, but the emotional scars run deeper than the physical ones. Then, in 2019, I had a seizure while driving on the interstate. I crashed into an overpass. That day could have ended my life, but by God’s grace, I walked away with only a fractured hand. That moment affirmed something I already believed: God is real, and I am here for a reason.

On October 6, 2020, I underwent brain surgery. That moment changed everything. Since then, I haven’t had a single seizure and no longer take medication. That day marked the start of a new chapter. It is one filled with clarity, healing, and peace I never thought I’d experience.

While the journey was difficult, I was never alone. I had the unwavering support of my family and friends, who stood by me through every stage—during seizures, doctor visits, hospital stays, and recovery. Their love and strength helped carry me through some of my darkest days and helped make my healing possible. Despite everything, I’m still here. I’m grateful for my surgery, for second chances, and for the people who never let me walk this road alone.

But I’m not just here to talk about epilepsy. I want to talk about what it means to live with epilepsy as a Black woman. Growing up, epilepsy was rarely discussed in my community. There were no open conversations, support groups, or educational resources. I didn’t meet another Black person with epilepsy until my twenties. That silence made me feel isolated and like I was the only one. One of the hardest parts of my journey was the silence. As a Black woman, I rarely saw people who looked like me living openly with epilepsy. It wasn’t something we talked about in our homes, schools, or churches. 

Epilepsy in the Black community is still not talked about enough. Whether due to stigma, fear, or lack of awareness, the silence must end. Our voices matter. Our stories matter. And sharing them can create a path for someone else to find hope, healing, and help.

So today, I ask you - don’t just hear my story - share and remember it. Let’s keep the conversation going and talk about epilepsy in our homes, churches, schools, and communities. Awareness is the first step to change. I am not just someone who survived, but someone determined to break the silence for others.

There were times when I felt defeated, invisible, and unsure if healing was even possible. For many years, I kept my journey with epilepsy to myself. I was afraid of being judged, misunderstood, or seen as different. But the truth is, silence only made me feel more alone. Growing up, I didn’t see or hear stories like mine, especially not from other Black women. That lack of representation made it feel like what I was going through didn’t matter.

But I kept going, and I want to encourage you to do the same. I decided to tell my story because I know now that there is power in being seen and heard. If sharing my experience helps even one person feel less alone, more hopeful, or more willing to seek help, then it’s worth it. 

Whether you’re newly diagnosed or have been living with epilepsy for years, your story matters. Your life has purpose. To anyone living with epilepsy: you are stronger than you know. Your journey may not be easy, and some days may feel overwhelming, but please remember, you are not alone. Don’t be afraid to ask questions, speak up, and seek support. Surround yourself with people who uplift you and never let fear define your future.