Don’t tell me I don’t make sense
When I already know I’m a mess…
Put down the Starbucks
And drop the Apple for just a min…
I know my no-name t-shirt bothers you
But let’s just actually talk for once
Put a quarter in the slot
To press send…
Ohh no…
You forgot
What twenty cents is worth
Hang up
Please dial and try again later
No wait…
Press zero first
You need an operator
I don’t think we will ever speak
It’s sad…
Really
No talk
No text
No skype
What’s that…
Do you know me…
Do I know you…
Nothing….
Nothing…
Absolutely nothing but…
Dial tone……..

One of the biggest obstacles I have faced as an epileptic is surprisingly not controlling my seizures, but rather finding the best way to communicate to those in my life about who I am and what I deal with on a daily basis. For a long time, I completely avoided the whole “communication” thing. To be honest, I was never good at that even before I was diagnosed. I would always over-explain something and go on this wild tangent (a bad habit that I still have to this very day), or I would under-explain (is that even a word ha) and say the bare minimum in an effort to avoid uncomfortable topics.
The irony is when I was first diagnosed with epilepsy, like many individuals, all I wanted to do was talk about my disability. I wanted to ask questions, like if anyone in my family had it or how I got it. I also wanted to talk about what was going on inside my body. I wanted to find a way to make sense of it all, even though I knew deep down inside there was no rhyme or reason for what was happening to me. I guess I just had that instinctive need to work through all of these uncomfortable emotions and thoughts that I had never had before. I was also dealing with all sorts of insane side effects from medications that both me and my parents had no previous knowledge of. Side effects that would linger in my body for decades.
I felt like I was hit by a tornado, and I was Dorothy, whirling around and around and around. I kept trying to talk to everyone in my life about what was going on and where I was, but, like Dorothy, I received the same detached reactions…”I was fine.” “There’s no need to worry.” “Everything was going to be okay.”
But I knew there was a need to worry. At the very least, I had to understand what was epilepsy and what was going on inside of me to make me a different person. But that journey to understanding came at a cost. Some people in my life didn’t understand the “new” me anymore. They didn’t understand why I would do certain things, say weird stuff, or why I didn’t go places. It took me a long time to understand that it was okay if they didn’t understand this “new” me…my life, my journey is for me, just like their life and their journey is for them. We aren’t meant to understand each other’s lives or necessarily accept the paths we take. What we ARE meant to do is to be the listeners of each others journeys. When we stop and listen is when we learn. It look me a long time to learn that lesson. I was so worried about my own journey, I never stopped to realize that others have their own battles at well. Take a moment to press zero…and listen to someone else’s journey…who knows what you might hear..
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