Words Don't Come Easy

By Pandora Poikilos

I've had to fight off some demons this week. This time of the year is usually when I lose strength and I feel like Superman on Kryptonite. Eight years ago this time was when my life changed and when time literally stopped. To this day, I've stopped using a watch because what is time when you're caught between the unknown?

Here's how it  began. It started with headaches. Then, it was my double vision. Then, it was a CT scan. Then, it was an MRI. Then, it was a neurologist. Then, it was the diagnosis. That single moment when a man in a white suit gently points out that you are not in control of everything.

Deep breath. This was the moment I lost myself. I had no more words.

Over the years, I've had some rather strong, large demons in my life. One of this demons is the certainty that there is a monster in your room. I was raped as a child. It didn't happen once. It happened far more than that. Different people known to the family. Different stages of my life. When I tried to voice it out, I was told that for the sake of family honour "we must not make a fuss, we must let it go". And so I grew up thinking I was the problem. I became numb to everything I felt about the issue and I ran away from it. I'll never be able to put into words the sense of never feeling safe or the terror I feel at knowing I may never be able to keep my child safe enough.

My next strapping demon was also my biggest downfall. In the past, I was the best person "yes" you could've known. Nothing was out of reach, just maybe this was another way I could make up for the flaw of being sick. But it made me fall into the ground. The one day I was asked for a favour and I said no, my life was turned into an open showcase. As a joke, a website was started about me. Pictures, photo-shopped images, truths, half-truths and even blatant lies about who I was. My mistakes and my weaknesses were magnified and I was left bare naked for the world to see.

I had no more words. The few that I did have were taken from me and thrown away. I wasn't worth the effort. I became the village pariah. The lunatic whose brains were not so normal.

When I was all broken and burnt to the ground, someone asked me a very simple question. "Who are you?" I was gobsmacked. Of all the questions in the world, it was the one I could not answer. And so, the pieces slowly started falling into place. Words became easier.

For seven years, I had told myself that having IIH was a disaster. It was another demon I needed to fight off. I felt that I had to do everything I could to make up for this flaw that was growing inside me. I had run around trying to be perfect for everyone forgetting the simple truth that nobody is perfect. Period.

Now I know that the ones who claim perfection from you are trying to even out their own score sheets, don't fall prey to this. If they can't deal with their issues, move on. Because the key word here is "their" issues.

I had to lose myself only to find myself sitting right back where I started, in a hospital room with a doctor reminding me that I'm human. Nothing more, nothing less. And yes, now I don't just have a neurological disorder, I have added brain surgery to the things I've done.

But here's the best part, I found my words.

Sometimes it'll never be easy and sometimes I'll never be able to share it in the way someone else will want to hear. But these are my words, my life and what I'll leave behind for the world to see. Love and light.