Each Breath Can Be Her Last – So She Lives For The Moments, Memories and Never Stops Asking Why

My name is Caitlin & I have epilepsy.
I was diagnosed with petit mal absence seizures at age seven. My seizures had gone two years undiagnosed.
Highschool hit & suddenly they got much worse. They interfered with everything —  school, theater, ballet, horse riding, but, petit mal seizures have never put my life in danger.
Lasting 5-10 seconds over the past 17 years I’ve missed 2 days of my life if you include the time I sleep. 4 days if you only include the time I’m awake.
When I was 18 I was diagnosed with tonic-clonic seizures. I would shake or go limp & fall to the ground. I wasn’t gonna let life stop me.
At age 21 though I started having non epileptic convulsive seizures. I’ve had too many ER visits to count, too many doctors’ visits, taken thousands upon thousands of pills.
Currently I take 20 a day. That’s 140 a week, 980 every month. I’ve been through 2 surgeries, both unsuccessful.  I’ve tried 3 different diets, each unsuccessful. 

By some miracle people actually find me an uplifting person. Someone who makes them feel better. Cause hey, if I can make it through this struggle, any one can right? I need people to know this chronic illness is real, that it is scary. 

What is the number one question always asked? In my mind the most asked question is: “why?” 

When you look back on your childhood you probably asked this question a lot. We were young, searching for knowledge that we couldn’t comprehend yet because we were just a children.

I’m just a child too when it comes to my brain. Why does my brain misfire? Why me? Why am I a living miracle?

Why this, why that. Why the medications?

Why the EEG’s?

Why can’t I just be normal?

Why the hurt? Why the tears? Why the physical pain?

Why, why, & even more why.

The truth is, we may never know why. It was hard to accept that, and to be honest I’m not done asking why and I’m not giving up hope of finding out the reason. 

But I made the decision long ago — and I won’t stop now — to turn all the uncertainties and questions and lack of answers into a positive. 

I live my life to the fullest I’m capable of, each and every day.

To raise awareness about epilepsy and educate people about the condition I let people know I do have epilepsy — but that I’m so much more than a label; I’m more than my epilepsy. 

Sudden unexpected death in epilepsy, or SUDEP, means every breath in my body could possibly be my last, so, I make each and every day a good day.

I live for my moments. My memories.

I love the fact I can inform people about the seriousness of this condition but also show them that there is a way to dance through the rain. And you can too.

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