Overcoming Stigma: My Journey with Epilepsy

I had temporal lobe epilepsy from infancy until the age of 12. My seizures began just before I turned one, then stopped for about four years. But when I was five, they returned with a vengeance. At first, I didn’t understand what was happening to my body. I often sensed a seizure coming on—usually with an intense feeling of déjà vu and a fluttering sensation in my stomach. I would hide in the bathroom and wait for the “weird feeling” to pass.

Eventually, the seizures became more severe, involving convulsions and loss of consciousness. Unfortunately, there were many misconceptions about epilepsy among my peers. Some believed I was “possessed,” while others thought the condition was contagious.

After years of consulting with a neurologist, it was determined that I was a good candidate for a temporal lobectomy. I underwent surgery at age 12 and have been seizure-free ever since. However, recovery came with its own challenges. After surgery, I struggled with language processing and short-term memory. Understanding speech and expressing my thoughts clearly was difficult, and sometimes I couldn’t even remember what I had eaten just ten minutes earlier.

Thanks to speech therapy, occupational therapy, and incredibly patient teachers, I was able to regain most of my cognitive abilities. As a child, I carried a deep sense of shame about having epilepsy, as though it were something I had caused. But over time, I have come to see it as a part of my story, something I overcame despite the many obstacles.

Ironically, I went on to earn a B.A. in Spanish. My early struggles with speech and language gave me a unique perspective and appreciation for language learning. I am excited to be participating in the Boston Walk for Epilepsy this June—it is a meaningful way for me to honor how far I have come.