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It was Maya Angelou who said, "my mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style". We can all relate to these words whether through our unique walks of epilepsy or in the daily grind of life. Epilepsy True was built on these words as a safe haven to inspire. So, sit back, relax, and read on!

  • shannonoconnor333

Bring it back... way back

Updated: Sep 10, 2018

15/16 years old

"Are you okay?"

A tight, tinny smell was sharp inside my nasal cavity, very high in there and stuck for what seemed like the longest 30 seconds of my life. It wasn't a passing smell that comes and goes like your neighbor's bad breath in the morning. More like being stuck behind a bus on a one lane road... for 3 miles. And a taste of iron so faint that somehow took over my body.


"What's happening?", my friend said between vocal warm ups in choir.

My head between my hands I let out a moan that may not have been on par with the soprano expectations.

"Where the hell am I?" I've been here before, I've seen this before.

"I just had the strangest de ja vu!

"Oh yea that happens to me sometimes, you're probably just light headed or something. We have lunch next period, you'll be fine, right? You okay?"

"I'm okay now."


"It's happening again"

Queue the soprano moans... and the 3 mile bus ride down to psychic ville. What is wrong with me? This is so weird!

Confusion set in, life had changed, and I didn't even know it.


"Why isn't the EEG set up on me yet?"

"I'd really like it if the nurse would come over already..." eye racing rapidly, flecks of white falling off the tips of her French manicure she'd just got done this afternoon.

"I guess we'll have to wait mom, it's no biggie. Just seizures, right?" I chuckled half sarcastically.

"This ER is packed."

Suddenly, "oh god... it's happening. Mom I'm having one of those, it feels funny and my nose hurts and... Mom!"


For the first time, my mouth began pulling to the left side of my face as if I were a fish on a line... and that fisherman really wanted me. I mean, he must've been a sport fisherman the way my cheek was pulling. The rigidness of my body was almost like I was frozen. It was something I'd never felt before.

The seizure ended and I was exhausted and confused...

Two sets of faces stared down at me while I tried to orient myself, my mom and the nurse who so kindly was there in a flash.

"Did you hear everything I was telling you! I was saying all the stuff that goes on in my head when I have seizures." I always like to tell someone what's going on in my mind when I have a seizure in case there's anything that can be done.

"You didn't say anything. You weren't speaking."

I had never had a seizure so bad until this moment. During all of my previous seizures I was always able to communicate. Shock took over.

The first time I was able to consciously feel a seizure was during the first incident I noted in this post, I was about 15 or 16 years old. Ever since then they haven't stopped. They would come and go in waves, I might go 3 weeks without having one but when they came they would come in clusters. I would have up to 6 each day and 30 while I was sleeping (EEG picked that up). In the last 2-3 years my seizures became more intense and thankfully I was diagnosed in February 2018. I didn't know until February that the episodes I was having were seizures. You're probably wondering why it is I'd gone so long without being diagnosed if I was feeling so many symptoms... I was too, but epilepsy is a tricky topic and not one person experiences it the same as another, it can be hard to pin down.

School was always a challenge for me. My parents took me to learning specialists and tutors because I was falling behind academically. The doctors I visited and the learning specialists that I worked with diagnosed me with a memory retention disorder. Now that I am more knowledgeable on the brain and epilepsy I know that my memory retention weakness was likely caused by my seizures growing up as a child.



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