Angela’s Story

Life was always a struggle. At age seven, I was outside playing with my friends when suddenly I had a grandmal seizure. After I was rushed to the hospital, the doctors could not control my epileptic seizures and weren’t sure if I was going to survive. After a week in the hospital and numerous tests, the doctors diagnosed me with viral encephalitis. I was discharged but with many complications. I didn’t remember many things- including most of my family, how to walk and how to talk. Because my brain had been so affected, I had to start life over. The school administration didn’t even want me to attend my old school, because I had regressed. I was rejected by a lot of my teachers and students in class and was never asked to be involved in any activities as a child. I acted like a three-year-old by hiding under tables and interrupting the class. The only people I really looked forward to seeing outside my family were the people and students at my dance studio. There I could be who I was and everyone understood me and accepted me. By the time I was in high school I started acting more my age. By then, my brain was catching up and forming its own ways of learning.

I really wanted to go to college and make something of myself, but I had no idea how to do that. How do you get into college? How do you get a scholarship? Help was nowhere to be found. I knew that my medical condition was always going to get in my way. Continuously having to go to the neurologist, yearly eye exams, remembering to take my pills, and anxiety attacks was stressful and time consuming. I had to start somewhere with life after school so I decided to work at Sea World as well as working for McDonald’s. Knowing that’s not what I wanted to do forever, I had to figure out what my options were and how I was going to get there.

While in high school I met Tom, the future father of my child. We got pregnant young and it was a challenge. I was living with my in-laws at the time and knowing that I was the parent, I had to find a way to make Amanda’s life the best that it could be. However, I struggled with the fact that we didn’t have that much independence which caused anxiety and stress which turned into more seizures. This was not the path that I wanted my life to go down. Not long after I was married I started working for Publix because it was one of the few jobs that I could keep because of my seizures.

Publix is a great place to work. After about five years into Publix, I decided that I was going to go back to school to become a medical assistant. While I enjoyed this, it was a challenge as I was working in the morning and going to school at night. It came time when I needed to do the internship portion of my program to get my medical license. At interviews, every time the word seizure came up, the interview was over. This was a difficult time but I decided to continue working at Publix and after 10 years of employment, I decided to commit to the company, and started to climb the ladder.

I had been going to several different neurologists for years, and I finally started to get things together around 2013. After taking many different types of medications, my neurologist decided that the best thing for me was brain surgery. The process of testing to determine if I was eligible for the Craniopharyngioma operation took over a year, and several trips to Shands hospital in Gainesville, but finally I was accepted. Then began the worrying. Worrying about brain surgery, how my life would be affected after the operation, and how it would affect the people I love.

In 2015, all my testing was completed, and I was admitted for my first surgery where electrodes were placed in my brain. I’m a strong person with a high tolerance for pain, however in the week after my surgery I had about 20 seizures in 5 days- which I think is a record and a shock to my doctor. It was hard having other people take care of me during this period, but I had to think about the future no matter how badly it hurt. No seizures, hopefully, and no medicine. A lot more independence. I started feeling better after 5 days when the doctors came in and told me it was time for the second surgery where a piece of my brain would be removed to hopefully prevent the seizures.

When I came home from the hospital, I thought I was going to recover quickly and get back to normal. I was completely wrong. I had headaches, stomach aches, major pains and anxiety at night. I needed help doing everything. I had to learn to walk again as my balance was completely off. After a couple of days, I got on a routine where I went out once a day and made sure I took my pills no matter what pain I was in. I still have a few complications, however slowly but surely, things are getting back to normal. It’s been about 2 months since my surgeries, and between therapy, staying strong, and help from others, I can see a great future.