I have been in a whirlwind of seizures that just stopped yesterday. It is hard to remember who, or where I am when I am seizing and recovering, non stop.
When I say “who I am” it is a very deep question without an easy answer; it is so easy to feel tied to my epilepsy, and having that as my defining feature. I have gotten into this bad habit of talking about my health to people, as opposed to other projects that I am working on, such as a collection of my own poetry.
I have to think about how I am feeling all the time. I was at a group one time and the focus wasn’t on people with epilepsy or chronic illnesses. It was more of a philosophical group, and we were talking about your awareness of how you feel in your own body. One woman said “I have never thought about how I feel in my own body!!”
I was flabbergasted. Someone never thought about how they felt in their own body-ever?! I constantly need to check in with my fatigue, my eyes, hands, feet and all of my limbs. Let’s just say I need to check in with my whole body on a regular basis. My hands are the most sensitive part of my body, and if my left hand is feeling off (I’m a righty) I know that it is likely that I will have a seizure. My Dad who does not have epilepsy also says that his hands feel sensitive too, which is intriguing to me.
Having less of an attachment to my epilepsy is what I have been striving for this year. I like to talk about my poetry, and what I am planning on doing with it in the long term. Although my poetry does include my experiences with having epilepsy and seizures, I feel as though it is a powerful mode of self expression. I more so identify as a writer, as well as a TEDx Speaker. At the same time, I like to be an advocate for people with epilepsy, so I am trying to find my balance between the two. It’s complicated!
So, who am I? I am Sita Gaia. I LOVE to write, cuddle my dog and spend time with my fiancee. I have a bit of a coffee addiction (necessary for the fatigue I feel on a daily basis!) I love listening to podcasts, dance music, and most importantly, edit my poetry. It’s challenging but that’s what I like about it.
What makes you YOU?!
Sita Gaia xox