A Collection of Short Stories

The Colors Outside My Window.

Strict. Deadly. Clean.

That is how I would describe my life in three words. Three simple words tie up my entire existence with a pretty bow. It is quite dreary really, and I try to find the allusive silver lining, but it is hard sometimes. 

Small things may seem insignificant to you, but to me, I only can experience them in my dreams. Like the warmth of the sun not tainted by a protective window as it caresses your bare skin and the dry freeze of snow when it filters from the sky. I can only watch the lives of people around me as they do normal things in their normal lives without a worry or care of what comes next or what will tomorrow bring me? 

Not me. I ask, 'Will I live to see tomorrow?'.

My condition has not only brought hardship trailing my essence. The weight of those chains would be too great a burden to bear alone. It had made me thankful for what I have. It has given me a space to call my own, but the darkness still lingers beneath the surface.

This disease, this poison, has made me grateful for every day and the beauty that comes with it. I'm grateful for my mother who works tirelessly to keep the disease at bay and push all of the evil out. I'm grateful for my father who tries to keep me happy while trapped. I'm grateful for my older brother who battles the world to protect me while putting me first. They are all so selfless and I try to be a bit more like them every day. 

But I can't help it. Human nature, my nature, is selfish. I can't help but yearn for the unpure air, unclean world, and all of the imperfect oddities that come with life. I want the Earth, the Sun, the Moon, and all their siblings. I want heartbreak and hardship with every fatal blow that comes with it. I want the joy of friendship and happiness that ensues. I want to leave this place far behind and feel the ache of homesickness. I want it all: the highs and lows, sadness and glee, pain and passion. 

I know what I ask for is impossible, so I bury it to protect my family. Every day the weight of wanting for something more bends me further into an abyss. I wonder how much more I can take before I break, crashing down into a pit far too deep to crawl out of.

To battle the darkness threatening to claw out of me, I hang glowing stars along the walls and stack books upon every space I possibly can. I try to add new wallpaper every now and then to feel like it's a new space. I video chat with my older brother who is enjoying the local college. He stays there in a dorm to minimize risk, but he always makes time for me, and I love him for it.

My father works two jobs to keep up with my medical bills. The necessary equipment is expensive and it's proving hard to stay afloat. He always looks tired, but still reads to me when I get sick, just like when I was a child. It lets me escape from my reality for a few moments until I fall asleep.

My mom went back to school to renew her nursing license. She stays at home with me in case of an emergency. I know how she longs for the panic of the hospital, but there are too many pathogens littering every surface. It's too dangerous. It pains me to know that I am the reason she cannot pursue her dreams, so I try to make up for it. We have standing family movie nights and play board games on Sunday afternoons. She always wants to play Scrabble and I pine for Cranium. She keeps my shell cracked open and I wish I could put in words how much she means to me, how much they all mean to me.

Even with my family's distractions, I still have a lot of free time on my hands. So when boredom overcomes, I try to keep busy. Working with my hands prevents me from worrying and wondering about the minuscule "What if's". I enjoy painting and playing the piano. They help me pour out all of my emotions that I keep locked up in my soul. I'm also taking some online courses in web designing, so I can start to help cover the bills. These things make me believe I'm doing something and can be someone even with my disease. I've started researching support groups and chat rooms for people like me and have sent requests to join a few. I'm trying to make my life as normal as possible and my independence has really made me feel like maybe, one day I can.

For now, all I can do is dream and watch the colors outside my window as the world goes on without me.

Hey everyone! Short chapter today! It took a while as I have been swamped lately, but I already have another in the works. Tell me what you think of this story following a girl living with severe combined immunodeficiency (SCID). If you would like to read or see more on the topic I highly recommend watching the movie Everything, Everything. It is what I based this story on, so it displays some of the feelings that I explore here. However, the chapter is still my own original work and is not a copy & paste of the movie, but you should still watch it. Warning: its premise is based on a love story which put me off at first, but as a person who dislikes romance I enjoyed it. Thanks for reading!

- DaughtersofAthena_