About My Story

At 12 years old, I was diagnosed with epilepsy, a chronic seizure disorder. As time passed, the epilepsy blossomed from complex-partial stares into tonic-clonic (grand mal) episodes where I’d be convulsing. From that time to now, the odds have been pushing on me, and I simply “put my armour on, and show you how strong I am.”

Due to my condition, I face stigmas, implicit biases, and people’s ignorance in general. These challenges were severely diminished when I spoke up. Epilepsy is not me; I am the “purple warrior” (a person fighting epilepsy), covered in battle wounds. In such situations, standing up for self-advocacy is needed to get the quality of life we deserve.

Although I was diagnosed with a very complicated brain condition, I am self-sufficient, even with the baggage epilepsy came with. I always wanted to learn and prosper—maybe not as the pediatric clinical psychologist I once dreamed of becoming, but through the many other titles I hold. I made sure I graduated from high school. It was an important accomplishment to me because so many had their doubts.

My first support group was pre-COVID, so we met in person at Rhode Island Hospital. Epilepsy Foundation New England (EFNE) had Certified Community Health Workers paired with clients in need of resources, and they facilitated the group’s Zoom support meetings. I spoke so freely about my epilepsy that a worker suggested I join the EFNE program to get certified. We all deserve a good quality of life, even though social determinants of health (SDoH) work against it more often than not.

Currently, I rent from a woman who does not properly maintain the property. I have reported repairs and identified violations over the last two years, only to end up with a 30-day notice to leave. I have gone around in circles and met deaf ears at city hall about this, and I believe they assume I try not to pay rent, although I always do. Fighting the city, trying to move, building a network, and launching—all while juggling occasional electrical misfires in the brain—is not an easy combination to manage, but I try, even with the risks.