We are sitting in his car. There is one thought running through my mind, and one thought only: Please don’t leave a stain on his seat. Please, please, please don’t leave a stain on his seat. 

The thought taunts me, circling my mind incessantly, until the moment of truth arrives and I find myself saying good-night. 

Well, here goes nothing, I think to myself. I take a deep breath, and I open the car door. I put one foot on the ground, then the next. And I stand up. Reluctantly, I glance at the seat. I’ve left no stain.

Phew, that was close.

I get home and I take my second shower of the day so I feel clean and comfortable. I towel myself dry, go to my bedroom, and begin to put on my pajamas… and I feel something wet dripping down my leg. 

Blood. 

I look down and see several drops of blood splatter on my beige-coloured bedroom carpet. I rush to dampen a towel with soap and scrub at it, but it is useless. Now there is blood on my carpet, and I can’t get rid of it. 

A constant reminder. Evidence of my disease to anyone who walks into my bedroom. 

I can’t do this.

I’m sure you are familiar with that feeling.

That feeling of hopelessness… settling into my mind like a dark and sunless horizon. Taking up precious space and reaching into the deepest corners, absorbing any remaining glimmers of hope I once had… reminding me that this was my battle for life.

You know when you’re in the car and a song comes on the radio? A song that reminds you of someone or makes you feel a certain way and you don’t want to face those memories or feelings, so in a panic you rush to press the button on the stereo to change the station?  That is life with HS… but we can’t change the station. This is the only channel we have access to. HS was an experience I had to accept and face head on. 

Why me?! Why?! I had my whole life ahead of me. I had hopes and dreams and beautiful visions for my future that were slowly slipping out of my grasp right before my very eyes. 

And when the darkness consumed me, I became it. 

I was still kind to your face. I was still smiling to make you more comfortable. But because I had lost all of my hope for my life, what else could my mind do but become a breeding ground for emotions like judgment and hate. 

In some of my lowest moments, all I could take comfort in was how freeing it felt to release my tears. To cry until I couldn’t cry anymore. 

I was often told by others that my smile could light up a room… and I didn’t want to disappoint them. But some days it was hard to maintain that smile. It was the mask I wore to the world, and I wished with everything I was that I could just take it off. I was sick of hiding. I just wanted to be angry and to be allowed to feel that way.  I believed that my pain and turmoil gave me a valid reason to be mad at the world. I did not want to fake a brave face when on the inside, it felt like the ground beneath me was starting to crumble. At the bottom, all I glimpsed was an empty, black hole. 

My only decision was to either descend that bottomless hole into the darkest depths of my being, or to go back up, towards the light… towards hope.  Every day, I would wake up and fall prey to thoughts that I was a victim. I had no one to protect me from my thoughts… no one to turn to but myself. I decided it was up to me to be on guard in my mind for such negative thoughts. I wanted to become a warrior of my mind. I wanted to be the kind of person whose mind would be on constant guard. I needed to do this to build my hope back up. I could not build hope with the nagging voice of negativity clouding over my mind. It would become my personal journey to put my fears at ease.

HS is more than just a physical disease. It wreaks havoc on our mental, emotional and spiritual processes. 

I did not understand why I was being put through this test… A battle of my faith.

I did not understand why my disease turned my mind into a bitter, judgmental cesspool of shame… A battle of my mental state.

I did not want to feel like a helpless victim but I didn’t know my way out of the HS darkness that was quickly closing in on me… A battle of my emotions. 

I have been there, to the lowest of the low’s. And I have grown in ways I never could have imagined. The most important thing for someone suffering from HS to hold onto is their hope. 

In severe cases, such as my own, HS can push a person right to the edge of our darkest emotions. It can have us teetering on the brink of a very personal decision.

In the story of my life, am I victim… or am I hero?

What I discovered would be my journey back to hope, and it is still unfolding as I write this.

 

Author: Heather Anne Talpa