There are times where I shove my thoughts and my pain down. Hide them behind a thick tall impenetrable wall. I’ve had a lifetime of practice. You may come across people who are generally nervous, uncomfortable, unsure of what to say, unsure of how to act around someone who is living with a condition struggling with an issue in their lives. For this reason, I’d taught myself how to mask my thoughts and pain. Generally, this was for my own reasoning. I wanted for “normality”. I sought to be treated like everyone else. I didn’t want sympathy or to hear countless amounts of “Awww’s” and “I’m so sorry’s” I don’t want to talk about my condition, or what it’s like to have a seizure. I want to run. Run far away from it but I can’t run away from my own brain. It’s with me wherever I go. When I’m in the comfort of my own home, in public or visiting family. If I cannot escape it, I want to put this condition on pause during certain moments of my life.
It’s important for myself and for all of us to understand that we are human. Yes, of course it’s painful emotionally when people don’t have an understanding of the epilepsy condition I and we face. Why I’m unable to drive. Why at times I have to cancel plans. Why my phone alarm goes off and I pour medication into my hands to take. Why I can’t work. When I hear the words “Awww.” from anyone regarding my condition, it’s frustrating. I’m not seeking sympathy. I don’t want to feel as though I’m being treated like a cute little baby or completely incapable of caring for myself. I am an adult woman with a medical condition that I am responsibly managing the best that I am able to.
So, a light bulb moment came to me not long after my diagnosis almost nine years ago. How can they understand my condition if I’m hiding what it’s like to live with this condition behind this thick tall impenetrable wall? I put all of my strength into hiding this from them. They were left in the dark!
The blame laid squarely on my shoulders. The realization opened my eyes. I can’t built a thick tall impenetrable wall around myself and condition and expect others to understand my thoughts or feelings living with this condition, or even the condition itself. They are not acting careless, insensitive, or rude. It is me who was being stubborn and filled with fear and worry. I can’t place the blame on anyone’s shoulders for not having an understanding or seeing what I’d put great effort into hiding.
I’d decided to kick down that wall. Take off that mask. Lift up the thoughts and emotions that I’d shoved down. Vocalize to those who knew very little to nothing at all about my journey with epilepsy and the condition itself. It was time to stop hiding and start living despite my epilepsy. It would not dictate my life. If I wanted people to understand, to genuinely see the journey that I was on, it was my job to lift the veil and show them.
It was time to stop hiding and start living despite my epilepsy.
So I did so. It as well, inspired me to advocate and educate each and every chance given. A light bulb moment, illuminating every step I take along my journey.
What has been your “light bulb moment”?