“What do Napoleon Bonaparte, Leonardo da Vinci, Alexander the Great, and I, Mary Ann Santos, have in common?”
This was my opening line for a public-speaking class back in college. Before I said this, I flashed this photo (not the exact image) on an overhead projector which at that time, was used with an acetate (oh gosh, this is showing my age). The photo already elicited amused laughter from my classmates, more so when I said my killer opening line.
“We all have epilepsy,” I said. The class became silent as I continued on with my speech. I narrated when I was diagnosed, what happens during an attack, and how it has affected my life delivered in a light manner. I remember ending my speech with something like, “Like these great men, I am living my life with flying colors even if I have epilepsy.” I saw teary eyes from some girls and soft smiles from a few boys.
So what is this so-called “epilepsy” that these great men and I have? WebMD explains it as “Epilepsy is a disorder of the brain’s electrical system. Abnormal electrical impulses cause brief changes in movement, behavior, sensation, or awareness. These interruptions, known as seizures, may last from a few seconds to a few minutes. People who have had two or more seizures are considered to have epilepsy.” There are different types of seizures, and in my case, it is the generalized tonic clonic seizure. These “usually begin with a stiffening of the arms and legs, following by jerking motions. The convulsions last up to 3 minutes, after which the person may be tired and confused. This type of seizure involves abnormal electrical activity involving both sides of the brain.” I am not sure if all patients who have this type of seizure are unconscious because I am during mine.
I had my first seizure when I was 16 years old. It was night time and we were already asleep when my mother felt some movement on my side of the bed. Imagine her great shock when she saw me unconscious and convulsing. She asked help from our neighbors to bring me to the hospital. I woke up while we were in the cab without knowing what was happening, but I found myself crying. My mom soothed me but I quickly fell back to sleep.
I am epileptic for over 19 years now and I have been under medication ever since. My family and I have been through a phase of asking “why” or “why me” (my epilepsy was diagnosed with no known cause or idiopathic generalized). I have been through a number of neurologists, undertook more tests (EEG, MRI and lab tests), and had unmanaged seizures at the start. It has been very depressing at times but I continued on. When my seizures were managed, meaning I had lesser convulsions for a number of months (the longest I had seizure free was 5 years), everything went back to normal, with just daily medications and regular check-ups with my neurologist.
In spite of my epilepsy, I finished my studies, worked in local and multi-national companies, attended strenuous gym activities and was able to party all night long. Now, I have even passed another milestone: I got pregnant and bore a healthy baby boy with my “condition.” I was able to exclusively breastfeed him for two-and-a half months and mixed feed him until he was 6 months old. With that, I am making a great mark in my own history like those great men.
I am not aware of any local communities for epileptics. I just recently found out about Team Epilepsy, a global community brought together to help raise awareness and advance medicine for epilepsy. Though they are not present yet in the Philippines, I was encouraged to be part of the “team” “by sharing their posts and by telling your friends and family about us and our fight against epilepsy.” I hope through my blog, I can be more active in the team, and also reach out to local communities.”
Next scheduled posts:
Fighting the Stigma
Finding Mr. Right Doctor
Pregnancy and Breastfeeding with Epilepsy
Mapsy's World 