What Epilepsy Awareness Means to Me
Last updated: November 2021
Epilepsy. I didn't know the existence of its name until I was 10 years old.
I was a healthy baby and there was no trace of illness. But my parents quickly found out what epilepsy was when I was 10 years old. I was rushed into the emergency room. My parents were clueless. They didn't understand why I was sick. Doctor after doctor looked into my file. My mum was tired of repeating the story to all of the doctors that checked me.
My first epilepsy seizures were so scary
They did an EEG and found nothing. There was no reason why I have epilepsy. A medication was prescribed to me. I took it and slept that night. A nightmare. I had 3 seizures that night.
My parents didn't know what to do and called 911. An ambulance arrived at my home. My neighbors were extremely shocked to see me in an ambulance. My mum accompanied me in the ambulance. We reached the hospital so fast.
I was admitted for a week. I was given medicine to try and see my body's reaction. I had another seizure at the hospital.
Finding the right seizure medicine
It was extremely exhausting and painful to find the right medicine for me. Everything must be on point. After 2 years of trial and error, of searching for a medicine that worked for me, we finally found one that suits my body.
But in those 2 years of my life, I was repeatedly admitted to the hospital. It was a war.
Being a child with epilepsy
My parents didn't understand what they should be doing as caretakers. They were completely new to this. But they learned slowly as time went by. It was a long process of trial and error and of learning about epilepsy.
As a child, I was terrified of epilepsy. I was trying to figure out why I was sick. I thought I was cursed by an evil witch and never cured. I had many unwanted thoughts thinking about my illness.
I told my parents sorry, as I felt like a burden to them as a sick child. "You're the most beautiful and amazing child. We are grateful to have you as our child. You never burden us, you are actually a gifted child to us. Our blessing," my mum told me once when I told her of my fears.
Learning about my epilepsy over time
I also didn't know some things could trigger my epilepsy and I had to stop them. Being sick is not fun. I had to let go of many of my favorite things.
As I got older, I learned more about epilepsy. I understood epilepsy more, and I'm still learning about it. It's an endless journey to learn about my illness. Should I feel burdened or grateful to learn more about it? Of course, we know the answer.
Epilepsy awareness brings the beauty of the illness itself to those who are diagnosed with epilepsy. Epilepsy Awareness Month is in November, and I see the importance of acknowledging my own illness each year. It's part of my life. I learn and grow to know more about epilepsy. What a beautiful journey.
Is increased screen time a seizure trigger for you?