Defying stigma and rising above obstacles of living with epilepsy

Ramsey Duevela. He creates awareness on epilepsy through film and photography. [Courtesy]

"My name is Ramsey Duevela. I was born with a storm inside me, a tempest that would come to define my life. I was living with epilepsy.

My first seizure struck when I was just seven years old. It was a terrifying experience that left me feeling vulnerable and alone. A few months later, my world was shattered when my father separated from my mom. I blamed myself for their separation and grew up hating my father.

My father was abusive to my mom. I still remember the fear in her eyes when he raised his hand to her. My mom took us to her home in Ukambani, hoping for a fresh start. But things got rough there too. People rejected me because of my epilepsy. They whispered behind my back and avoided me like I was contagious. It affected my education and I had to repeat Class Five.

School was no refuge for me. I still remember the sting of rejection when one kid used to spit on the floor upon seeing me. But life has a funny way of surprising you, that same boy became my best friend. Cold weather is one of my triggers and I once had an attack in class. The teachers didn't know how to respond to my condition and I was left feeling exposed and humiliated.

I ended up with my dad again but things quickly turned sour and he returned me to my mom who was now married to my stepdad. I was grateful for the stability and love that my stepdad brought into our lives, but my epilepsy continued to haunt me.

I had an attack while doing my KCSE exams and ended up failing. It was a crushing blow. I had been excelling until then, thriving with even As. But recovery from my attacks usually takes up to three weeks and I hadn't fully recovered while I was doing the exam. As a result, I failed. I experienced even harder times when I lost my best friend to epilepsy and became suicidal.

But I refused to give up. I found a way to thrive online and give myself hope and a career. I found a top producer who trained me in photography and handling production equipment. During the last assignment he gave me, I covered epilepsy in a self-produced short film. It was accidentally played at a major conference where the audience was moved to tears by my work. Since that conference, I dedicated my life to raising awareness on epilepsy through my talent.

- As narrated to Roma Odhiambo