Thursday, March 26, 2015

Purple Day

I feel as though I should write today. For those who don't know today is Purple Day for raising Epilepsy Awareness. I came across a picture that said "why should I raise epilepsy awareness when it doesn't affect me"? Well, once upon a time epilepsy didn't affect me either.

I've now been living with epilepsy for half of my life. Many people wouldn't know that I live with epilepsy. It's not a disease that you can see and fortunately we've found a medication that has kept me seizure free for the last six years, but there are thousands of others whose are not controlled by medications. Whose lives are so much worse because of this  neurological disorder. It's hard to explain what living with epilepsy is like... You're constantly afraid of when the next seizure will happen, if your meds will stop working, and how it will affect those around you.

I was fifteen when I was diagnosed and had many seizures aftwerward. Sometimes I'd have allergic reactions to the medication, the medicine would stop working, or I'd lose my health insurance. I've had seizures (grandmal and petitemal seizures) at school, at a restaurant, my home, the hospital, my work... And every time I would wake up in a cloud of incoherent thoughts, a migraine, and people standing around who could not speak English. And half the time I didn't recognize my surroundings because I was in a hospital bed or I was on the floor... Evey time I had temporary amnesia. I didn't understand the words people were spitting at me, I couldn't recall my name, my address, my parents names, or anyone's phone numbers.  Can you imagine waking up and not understanding why you're on the floor with strangers shouting at you in a language you don't understand? Or when your language and understanding comes back but you don't remember your name or your parents name? It's enough to make you cry and want to hide.

Or a petitemal seizure in which your arms have tremors or your legs give out beneath you. I can remember singing in Chorus class and throwing my sheet of music on the floor... Or drinking a Slim Fast before school in my mom's car and I kept dropping it over my lap... Finally my mom would have to turn around and drive me home to change because my pants were convered in the chocolate drink. One time I ran to my aunt's van and my legs gave out. I landed face down on the pavement and because it was a tremor I couldn't even put my arms out to break my fall...

It's hard to believe that I've lived with this disorder for half of my life. That it's had such an impact on my life. Still my story fails in comparison with others. I know of those who were not as fortunate and have died from having a seizure... And I've had family who were forced to leave the army because of seizure episodes as well...

Just seems crazy to me that people are not informed about epilepsy. Instead they turn a blind eye. It's life threatening and it affects 1 in 26 people! Be informed! You never know what it could mean to someone if you're the one who chose to help somebody that started seizing. I know I'm grateful for all who have helped me. It's because of you I'm here and not afraid to say "I have epilepsy". Thank you.

Today I wear purple and am doing my part to raise epilepsy awareness.