How Has Epilepsy Impacted My Life? by Gail Valentine

The following is an account by Gail Valentine of the Twenty-20s Epilepsy Awareness Group for Black History Month.

“Life’s challenges are not supposed to paralyze you; they’re supposed to help you discover who you are,” Bernice Johnson Reagon

Growing Up with Epilepsy

In many ways, epilepsy impacted my life negatively. I have accepted my condition by thinking that I am special.

My name is Gail Valentine and I am a 25 year old who has been suffering from epilepsy since I was 3 years old. During those formative years of my life, epilepsy has affected me badly. I almost lived without hope as I was not sure what was happening to me at that time. I had an episode almost every day. I could not enjoy the things that every child loves to do like swimming and riding bicycles since I was constantly monitored and reminded by every one of my condition.

Pre-school for me was a mess as I did not get a chance to build the same cognitive foundation as my peers. I was held behind academically and stigmatized. ;My parents were told that they needed to place me in special facilities that would cater to children like me. My parents were told at one point by a school that I could not continue attending because my condition was traumatizing other children. Hearing all of this, my parents sought resources to have me enrolled where I could get the special help that I needed.

My battle with epilepsy continued through the trial of different combinations of drugs without a glimpse of hope. I have done numerous brain wave scans and 24-hour video EEGs which always showed activity on the right side of my brain. There were drugs that I was extremely allergic to and caused rashes to appear all over my body, leaving me almost unrecognizable.

Searching for an Identity

Upon entering high school in 2005, my real struggle started as I tried to find my identity. Considering I had just started to blossom into a young lady, I wanted to join others and have a social life, plan a career, and even get a driver’s license. But instead I became scared, withdrawn, and depressed. Initially I wanted to be with my family who was always supportive of me, but I found there were friends who were around when I needed them.

During my 5 years of high school, I had episodes of seizures every morning, battering my brain on my way to school. This resulted in me sleeping for long hours and missing the early morning classes. Sometimes I was even drowsy throughout the day.

Finding a Treatment

The most terrifying experience for me was in 2006 when I had status epilepticus at age 14. I spent 7 days in the hospital under close monitoring. During this time I lost my memory temporarily and there was even more damage to my brain. My case had drawn a lot of attention in the medical field with numerous neurologists requesting to be part of the decision making led by Dr. Amza Ali.

With part of my brain now damaged, plans were made for me to visit Tennessee to have a brain surgery done. I was now a suitable candidate and I had failed all drugs that were available to me. However, with the careful research of my neurologist Dr. Amza Ali, no brain surgery was done.

I became Dr. Ali’s patient and he started to try different medications to find a suitable combination for me and this is how I ended up with a drug combination that worked for me. This combination has helped me tremendously as my seizures are under control and I have been seizure free for the past 9 years.I have gained self-confidence and I am thinking about getting my driver’s license while my seizures are managed by medications.

Thanks to God Almighty who has given the knowledge and understanding to doctors to assist me and to my Mom, Dad, brother, and extended family and friends.

Thanks also to my support group, the Twenty-20s.