Sharing Stories to Break Down Stigma

For many years, epilepsy shaped every aspect of my life, and my path has been anything but traditional. I was an active teenager who participated in theatre, music, and sports throughout school.  During this time, I had been suffering from epilepsy since age thirteen. Over time, the severity of my epileptic episodes increased, and later doctors found the cause of my seizures to be an angioma on my right temporal lobe, which had already hemorrhaged. 

 I could not drive and was trying to move forward; however, living this way and navigating uncertainty, my epileptic episodes increased to five to seven per day and sometimes ten. As a result, I had to drop out of college because stress was a major contributor. Despite trying multiple medications in 1993, I went into Georgetown University Hospital for my first brain surgery. A month later, I went through two more brain surgeries to make me asymptomatic. I was seizure-free nine months after my third surgery, and I decided I wanted to conquer the world because I gained my independence back and could drive again. I went to college because I could not finish. Although doctors had said it would take me ten years or more to begin to feel like my old self again after a partial right temporal lobectomy surgery.  In fact, they were unsure if I would ever go back to school. 

Since my surgery, I have had no more epileptic episodes; however, they have located three more angiomas.  These new angiomas do not cause seizures, just headaches. Some subjects I have found more challenging than others, after my surgery.  However, I have learned how to tackle subjects that doctors said I would never be able to take, such as science and math classes.  I have gaps in my resume, but it is harder to explain when you have a hidden disability versus a physical disability.  

One of my greatest blessings was the opportunity to become a mother to three boys, even though I once thought I would never have the chance to have children. Simultaneously, I returned to school and raised three boys. My passion is bridging health communication, public health, and education. Balancing my academics, parenting, and career growth was very demanding. However, through school, I learned new skills, which boosted my confidence and reinforced my perseverance while reclaiming my identity beyond my hidden disability and medical history. 

These lessons I have learned were not taught in a classroom, and all these years, I believed epilepsy was something I had to keep hidden because of the stigma associated with seizures. Now it is time to spark the change and replace the misconception with understanding for those with epilepsy, because invisible disabilities do not define what a person can and cannot do. I hope my story increases awareness and creates opportunities for people living with epilepsy to thrive.