What Lies ahead?

Here I am 3 months since brain surgery and 2 and a half weeks since the first seizure after brain surgery. My emotions are flowing with frustration, at times sadness, but commonly anger. I guess going into the surgery I was very optimistic that this would be 100% over and the shake and bake would be gone. The auras continued after surgery and the fear and frustration of not knowing what to expect was fearful. At times I truly felt the seizures were almost easier because I knew what to expect when an aura appeared. After surgery it was uncertain until a few weeks ago. I must say on the upside I knew it was coming. For a week prior I felt it coming, it is almost like a volcano or earthquake the stress builds up. However my body doesn’t explode it just shakes out the stress to release the pressure. I’ve always embraced my seizures with humor so I think of my seizures as I shook out my stress.

Since my seizure I find myself what feels like to be almost my old situation along with the same emotions of frustration, anger, sadness, and uncertainty. Frustration because 60-70% seemed like good odds of living normal. Anger because I would like to not worry of carrying around my little pill box and to have 1 day without multiple auras hoping the aura doesn’t escalate. The sadness of wondering will this continue for the remainder of my life. The doctor said 6 months up to a year is normal. What is normal to them? This sure doesn’t feel normal to me! Especially since I lived my whole life what would be considered normal before the seizures.

At times I wonder what did I do wrong to deserve this but then I redirect what am I supposed to do with this? This challenge has my mind spinning in all kinds of directions. At this point I should think of this experience as things could always be worse and for whatever reason I was given this challenge for a reason. I need to bring attention to this unnoticed beast and really focus on what lies ahead and where I’m going from here.

What is truly frustrating is unless you are carrying this around with you , you don’t understand. Regardless of how hard you try. If you are the caretaker of someone with epilepsy imagine your head being squeezed in a vice, your body feeling heavy due to your medication or just because you didn’t wake up feeling well, experiencing your aura then the spinning as if you are drunk, the echoing in your ears, and the feeling of your body being heavy as if you are on a carnival ride. The ride that sucks you up against the wall. There is nothing fun about that.

Everyone deals with their situations differently. I don’t make fun of my situation, but I try to at least smile as much as I can about it. I saw something on social media that said: “With every hard road is a beautiful destination”. I’m hoping my destination includes a beautiful beach, hammock, and a breeze, or having the pleasure of sharing my story.

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