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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!

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  • shannonoconnor333

I found out I don't have epilepsy anymore



I'm back! Did you miss me? Probably not, you've likely been more focused on the bigger issue at hand... COVID-19. I get it, it's a hot topic but not exactly the one I'd like to discuss in this here post. No, no! Today, we discuss... epilepsy (shocker).



Since I've been away for some time and left you all at the edge of your seat waiting for the next blog post, let me give you a little run down of what I've been up to.


- I moved into my very first apartment with my fiancé! (insert hear eyes emoji)

- Got engaged in Ireland this past summer! (insert more heart eyes emojis)

- Started a new job where I get to see my mom every day!

- Began a 200 hour hot yoga certification program, so I can live out my dream of being a yogi!

- Oh, & found out that I don't have epilepsy anymore.



"Hmm...? WHAT? So, you just magically don't have epilepsy anymore? Your had an EEG and your doctor told you that your seizures are non-epileptic and that your epilepsy is just GONE?" - Carroll

DISCLAIMER: Carroll is not a real person.


Yes. My thoughts exactly, Carroll.


"So, then why are you still writing on a blog geared toward people with epilepsy if you don't even have epilepsy anymore?"


Well Carroll, before I get into that, let me first thank you for your salty attitude. Here's why...



Just like these stairs here, my journey with epilepsy has had a high point and a low point. Some days the stairs have felt like, "why the hell does this old building NOT have an elevator? CHRIST! These steps are never ending". Other days, they have felt as if I'm Usain Bolt moving past each step easily. My epilepsy journey has carried me to the top but it has also left me feeling like I cannot make it past the first step. There have been days where I've easily climbed to the top only to find that there is nothing there for me.


"What does this have to do with you not having epilepsy anymore?"


Great question Carroll. Maybe some of you reading this are like me, confused & wondering, how did my epilepsy just go away after all I've been through and who am I now?


Not having epilepsy is a blessing, no doubt, but when you have had epilepsy for so many years and you've spent countless hours/days/years figuring out "WHY", you begin to identify with epilepsy. You accept it as a part of who you are. You create habits for yourself because of your epilepsy. Then, once it's gone, you wonder, who am I now... what the heck do I do?


For example... I carried my medications in a particular purse for years, it was this big purse that had all my necessities. This brown leather tote bag matched everything. Now, I have the freedom to change my purse according to a particular outfit but every time I do, I habitually think, "will my meds fit in this bag" or, "I remember when they couldn't fit in a bag this tiny".


There is freedom in this change but also discomfort.

November 2019 I was admitted to the hospital after multiple seizures. After 3 days in the hospital, I was told, you don't have epilepsy. You were experiencing non-epileptic seizures. The doctor left and I cried. I wanted to crawl into a hole and be alone. My family asked me why I wasn't happy. They told me this is a good thing. I had just gotten used to life as "someone with epilepsy". I was used to my life that way, I knew how to navigate (for the most part). I had a reason for the funny headaches, smells, and seizures. Now, the doctors tell me that the sensations I was feeling are non epileptic??? You're just going to walk in here for 10 minutes and tell me I don't have epilepsy anymore, then send me home?


I was frustrated.


HOW? WHY? WHEN? It's still a mystery to me. People will say, "this is a good thing, you should be happy". I am happy my brain isn't short circuiting and damaging itself anymore, but the confusion and change is still present and the memories will always be there. I'm pissed even after 6 months "epilepsy free" it's a little like living with an abuser for years and years only to find out they're gone suddenly. You feel relieved but will never forget. You think to yourself, why now? I went through all of that just to be told, "never mind, just kidding, you can go back to regular life now!" Um... ok but HOW?!


Blessings come in many forms and I believe this has been one but, oh boy has this been a whirlwind and I doubt this is the end.


I'll never forget who I was as hard as I try, but now I have to work on who I am and just hope this consistency sticks.



xox,

Shannon

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