“Living with Epilepsy for the past 36 years hasn’t been easy. The hardest part of my journey has been accepting and living my truth. As a child living in Washington D.C. I was attending school and one day a classmate stabbed me in the eye with a pencil. The pencil lead was lodged in my left eye and hit a nerve. As a result, I began having seizures and from there I was diagnosed with epilepsy as a result of the trauma. Following this experience, doctors were able to remove the pencil lead, but there was also a fracture that had caused my brain to swell. Hesitant because of my age, my parents declined additional surgery and I went home to begin living with this chronic illness.
Early on I started to face so many challenges. School was so important to me but after my accident my parents noticed that I was struggling. The different medications began to affect how I was learning and retaining information. College was one of my biggest fears but It was something I wanted to do. As I was told by doctors that I wouldn’t be able to graduate high school or college. This was my motivation to prove them wrong and prove to myself that I can do this. But it wasn’t easy as my seizures increased tremendously. I had professors humiliate me in the middle of class due to my epilepsy. Calling me stupid and incompetent and I quote ‘because something is wrong with me and my brain.’ Imagine having all eyes on you from your peers. I was totally embarrassed. I knew I learned differently from others so I had to fight. I didn’t graduate in the normal 4 years. It took me six years but I walked across the stage with a degree in Mass Communication.
My second biggest hurdle was the workforce. Being independent was something that I needed. For years I felt held back due to my epilepsy but I was ready to get out and start working. But I wasn’t prepared mentally for what was coming. I was too afraid to discuss my epilepsy with employers but I wanted to be honest. But I was told that was a liability by previous employers. I’ve been demoted from positions due to employers thinking I wasn’t capable of fulfilling the position that I was hired for. I’ve been fired from several jobs due to my epilepsy. Imagine waking up from a seizure at your place of employment to hear coworkers talking badly about you while you lay on the floor or picture being fired from a position from your own neurologist because you got hired in her department. I had gotten used to feeling selfless and not worthy in the employment world. Being told by many employers that I shouldn’t be working in my condition because I was difficult to train and to work with due to asking repetitive questions or my memory. I was being orchestrated at my place of employment. Being left out of meetings, I was treated differently by my peers all because I was dealing with something beyond my control.
After being told by my doctor and my neuropsychologist that my memory had declined and it was better that I stop working. I was devastated at first but deep down inside I knew something was going on. This was just confirmation for me. So I prayed and followed my heart. I started my own nonprofit organization called Epitome of Epilepsy to spread epilepsy awareness in the black and the brown community. This gave me confidence and courage to tell my story with non judgment but strength instead.”
JenVon
Charleston, South Carolina
