Epilepsy Star: Elizabeth Barcelo
A shining epilepsy star sat down with us this issue to tell us about living with epilepsy and seizures as well as her decision to have epilepsy surgery and how she is now doing. She and her family have been working together for many years to make sure she lives life to the fullest and to raise epilepsy awareness. As you will see when you read the article, "epilepsy is not stopping this young woman from anything".
When were you diagnosed with epilepsy?
I was 10 years old when I was diagnosed with seizures due to epilepsy. The first time it happened was a summer night and I was rushed to the hospital after my sister informed my parents. I didn’t know what was happening until getting to the hospital. My first doctor was a neurosurgeon, but he didn't really understand my condition. He concluded that there was no surgery needed. He suggested a different doctor to visit. The next doctor I had just kept giving me the same treatments over and over, but my seizures were getting worse. She also suggested surgery but this wasn’t really explained to me. I went to many doctors until finally a friend of my mother's told her about NEREG in Hackensack University Medical Center.
I knew as soon as I got there that I was in the care of a superb group of doctors and an amazing team. Over the years I have been going to see Dr. Marcelo Lancman at NEREG, my condition has gotten better and my seizures have calmed down.
What has it been like to live with epilepsy for you and your family?
Living with epilepsy has been difficult for my family and I because I’m not able to do everything that I would like to do. For example, I am not able to drive, so transportation is not easy always. Sometimes I have to go somewhere and there is no one to go with me, and I don’t have the ability to go on my own. Sometimes if I do have to travel I take the bus or the subway around but I never do it alone.
Living with epilepsy was also a tough for my family the year that I fell into a coma. That coma had most of the doctors thinking I was not going to live. It was a tough moment for my family and the friends that were closest to the family. It had gotten to the point that my family would take turns to stay with me in the hospital waiting for me to come out of the coma.
How has epilepsy affected your life (for better and worse)?
Epilepsy has affected me for better because I have learned to adjust and become flexible because I never know when I may have a petite or grand mild seizure. I get to go everywhere with someone from my family or a friend who knows my condition to avoid anything bad to happen. I have gotten the chance to meet people like athletes who go support patients in similar conditions at the hospital. It showed me that there are people who do go around giving support and who are positive. It also has affected for the better where I know that medical science is working very hard to make progress for epilepsy testing and treatment which benefits me in the end.
Epilepsy has affected me for worse a few times because I did get treated badly in school. I was being bullied because a teacher didn't know how to deal with the seizures and also a teacher thought I took advantage of my condition to get out of test. Even a security guard in the college I went to thought I was “doing drugs” and that was why I was having seizures.
How did you feel about having surgery?
When I was told that I would need to get surgery, and told the procedure. I was terrified and didn't want to go through it. I also knew though that if that was the only way to get rid of or get the seizures under control, it had to be done. My feelings towards surgery changed, I started to think of the changes and the things I could do when the surgery went well.
What was going through this like and how are you now since the surgery?
The day of the surgery my parents and I had gotten up early, and we picked up some family friends to go as support. When we arrived at the hospital I was nervous. After the first part of the surgery was done I saw what the doctor had done. I knew that there was no reason to be afraid of finishing the surgery. The second procedure went well and I stayed in the hospital for a while until the stitches healed and to be monitored.
It's been five years since the surgery I've been doing a lot better. I still do get seizures from time to time, but they're under control. Even though I still am getting seizures; I graduated with honors in high school. I also graduated with an Associate degree in the Arts in a community college. I've received awards in both high school and college.
What are you doing now: studying, working, are you doing anything that you want to tell people about?
Now I've been working so I can go back to studying and get a Bachelor’s degree in the Arts. Using my studies in Communications, I've put together a video for an event. I'm helping someone with scripting for this project and I'm working on my own collecting videos I have so I can put together a whole new video. Besides putting together videos, I've been working on writing books of my own. I would like to save up money so that one day I can create a production company so that all the work I do would be known.
How do you work to raise epilepsy awareness?
I've worked to raise epilepsy awareness by educating key persons (e.g. my teachers and professors and coworkers) about epilepsy and seizures teaching them about first aid for seizures. In addition, one of the books I'm writing is an autobiography of my life. I am writing in it all that happened when my epilepsy started and the many experiences I have since had so that others can know what it is like. I also have plans of putting together a video in the form of a documentary or a montage; to explain epilepsy and how seizures are not all the same for everyone.
What advice do you have for people living with epilepsy?
My advice for people living with epilepsy is to never be discouraged and never lose hope. Everything could get better as time passes by and a lot of times you’ll see that things do in fact get better. If you have a goal and a dream, never give it up because you can one day achieve it like I am doing with my education. Always think positive, especially about yourself. Recognize that your family is always there for you, every step of the way to give you support and guidance.
What are your future plans for working in epilepsy?
My future plans for working with epilepsy are writing a book about my life and working on putting together a video. Also to save up to create a not-for-profit organization (foundation) to make a change in the world of epilepsy.
