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Epilepsy Awareness Month:My Struggle With Awareness

Epilepsy Awareness means not hiding. This is the unhealthy “beautiful” version of me … the one who was having seizures and hiding it.

November is Epilepsy Awareness Month.  I haven’t always liked the concept of Epilepsy Awareness.

Awareness in general can be painful. I like to ignore things. I shy away from the things that hurt, the things that feel different, the things I don’t like about myself. And, when I don’t understand something … it’s easier to pretend it’s not there.

The thing about epilepsy is: 

No one understands it.

And … I couldn’t pretend it away.

I went to a Dr. who said he didn’t understand seizures. It wasn’t because he didn’t pay attention in school. He paid close attention.

He sees patients everyday who have varying versions of the same diagnosis.  He’s studied seizures for years … but he doesn’t understand them. 🤯 

I’ve had seizures now for over 30 years and  I don’t understand them. 🤯

So, how can someone who is interacting with them for the first time understand them?

Seems impossible. Perhaps it’s just one of the reasons epilepsy is so misunderstood and ignored.

The sooner you get your mind around not needing to have all the answers, the faster you might have some of them. 

I’ve done my research trying to find answers for over 15 years. I’ve found some solutions to the issues and struggled to find the things that are really going on. 

I’ve learned a lot. I don’t regret any of my studies.  But, I had to let my deep research go. I’m still aware, reading, listening and open. But, I don’t live for a cure: WHY?

Because I want to LIVE!!!

Focusing on solutions for sickness had me focused on sickness.  It wasn’t until I gave up fighting to get out that I could see the path of possibility. I had to believe there was a path. And, I had to give up the idea that I belonged to sickness. 

My mind had become acutely aware I was someone with seizures. I felt weak. Nothing seemed like it would ever change and that made me feel hopeless. I was who I was. Others could change, I believed, but not me. So, I didn’t. 

Then,  I fell down some stairs. It was one of the hardest emotional times in my life. 

I knew life had to look different. I also knew I couldn’t do it alone. But, weakness has this way of giving if we can drop our pride and realize we had no power to begin with.  God has a way of showing up when we cry out. And, that’s what I did.

Everyone has a different story and I realize each form of seizure is different. It’s part of why this condition is so brutal. Even when you find someone who shares the story, they don’t share it just like you and they’ll tell themselves or you’ll tell yourself you can’t relate because it’s not the same. But, you’re more alike than you’ll let yourself believe.

So let me tell you just a snippet of my story. Those of you who get it will get it.

My petit mal seizures increased in severity to grand mal quickly.  They called them complex partial at the time.  Dr.’s told me my brain was learning to have seizures better and would never go back to the way it was before. If you’re reading this, just know … it’s not true. Your body is an amazing healing machine.

I was later fully diagnosed with idiopathic focal seizures that led to generalized episodes.  Later, they would say they weren’t quite sure if that was right because these couldn’t be pinpointed to specific areas of the brain and they would increase in severity so much I would be diagnosed with status epilepticus (constant state of seizure). I was unable to have surgery like some and meds were continually problematic. The hospital became my secondary residence.

After a coma, the loss of my voice, my memory, what felt like my friends and my very self, I believed I had nothing left.

When you’ve bought the lie you have nothing left,hope fades.

I believed the lie that it was forever. But, the turning point was just around the corner. I have begun a process of healing I could only have entered by giving up and believing more was possible. Yes, I still have epilepsy, but I also have much more.

It’s been a long time since I’ve been to the hospital now. I have energy that I thought was never going to be part of my life. Doctors have removed status from the label on my chart, which is something they told me they’d never do. And, I’m living a full life … one with friends, a voice, dreams and sense of self.

I’d like to believe my pain has had purpose … that by sharing it, you might benefit in some way. There is hope for you, no matter how deep your struggle may be. But, you are the one who has to believe the bright light can come.  You are the one who has to rise up and ask the questions that take you where you want to go.

Epilepsy Awareness begins with you acknowledging what you’re going through. This is your story first … ask your questions and start hoping for the bright light.

If you’d like to follow along on the journey with me I’d love to hear your story. Life isn’t meant to be lived alone. It’s just not.

If you’d like to learn more about seizures today I’d recommend the blog

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