Stiff Skin Syndrome

melancholy-finishedBy: J.J. Cheesman

 

I miss Anna so very much. My memories of her are few, but they have stayed with me. Just as the guilt of what happened to her has haunted me all these years.

Anna was my world; she was a world as big as any seven-year-old who was in desperate need of a friend could have. I was a very shy boy when I started Kindergarten. On my first day during a small recess period, I looked around my classroom as all the other kids talked and laughed with each other. I sat alone, not having the courage to speak to anyone. My world was very small then.

It seemed to me that everyone in my class had someone they knew from either preschool, or someone they had in class who lived near them that they had already gotten acquainted with. My parents elected to keep me out of preschool. They didn’t think that it was necessary. It also didn’t help that my home was a couple miles into the country, and I had no neighbors close enough to associate with at that age. I remember so vividly, a feeling that I had watching every kid in my class smiling and so happy to be there. That feeling, was loneliness.

 

I put my head down on my desk and waited for Mrs. Grandon to tell us to quiet down. I just knew I was going to hate school from then on, I wished I wasn’t in that stupid room with all of those smiling children. Then came the feeling of a soft hand touching one of my arms, and the soft, sweet voice of a girl.

“Are you okay?”

I looked up quickly, slightly startled at the sudden disturbance. I was met by the sight of a pretty brunette girl with her hair done up in curls. I blushed a bit, embarrassed that she felt so sorry for me that she felt she had to come ask if I was okay.

“Yeah I’m fine, why?”, I sputtered out with all of the confidence I could muster.

“Sorry, it just looked like you were sick.” I smiled at her politely,

“No, I’m okay, just tired”, I lied.

“Oh, okay, wanna’ play Tic tac toe? No one else will play with me.” She returned my smile with teeth that shown pure white, and I fell in love. Well, the kind of emotion that a boy that age could call love. I nodded excitedly, and she pulled up a chair next to me and I pulled out a pen and paper from my desk. We spent a long time passing the pen back and forth, playing our games of Tic tac toe. Anna was always X’s, and I was always O’s. We played while she asked me things like what my name was or my favorite color. I told her of course, that my name was Bobby. I also told her my favorite color was green. My favorite color was actually blue, but when I saw her emerald eyes green became my new favorite.

From that day on, every time we had a break period in class, Anna and I would sit and talk at my desk while we played Tic tac toe. After lunch, during our outside recess period, we would play pretend on the modular play-set on the school grounds. We pretended we were knights defending a castle or that the rocks below the modular were instead a lake of molten lava that we could not touch.

Both of my parents were over-joyed that I had made friend. They were glad to see that going to school was something that I looked forward to, and I was beside myself with glee. That happiness never waned either. Anna and I never fought no matter how much time we spent together. In fact, our friendship only grew stronger day by day, and my feelings for her grew as well. By the time the month of October rolled around, Anna had been over to my house many times for play dates. We spent hours out in the field behind my house playing tag or hide-and-seek. I usually let Anna catch me, or hide in a spot that was obvious. I never wanted her to get bored of spending time with me. I never wanted to lose our little world of ignorant bliss. I was truly and irrevocably happy. But time passes and with it, go all things. Our little world of imaginary dreams crumbled all too fast.

 

Anna and I were both seven years old when my world collapsed. We were playing on the modular at school during recess once again. We must have been playing one of our silly games of being in a castle, the events of that day are so blurry in my mind I find it hard to recall many details. I know that for some reason Anna was guarding my entrance to the main slide at the very top of the modular. That slide was the best one we had available on our little playground, and it went the whole fifteen feet down to the gravel below.

Our little game was interrupted however by a boy whose name I will never forget. Mitchell Donahue. Mitchell was the class bully in my grade, and he was as intimidating a bully as any seven-year-old can be. He came lumbering up the tall steps with his broad shoulders swinging in tandem with his footsteps. Mitchell pushed me aside and demanded that Anna move. Anna crossed her arms and stood defiant in Mitchell’s way.

“Say please, it’s polite.” She said.

“No way.” Mitchell yelled, and shoved Anna aside sending her falling on her behind. A fire lit in me then, and I stormed over to Mitchell, shoving him hard against the metal railing that acted as a barrier from children toppling over the tall modular. Quick to recover, and very angry Mitchell ran at me, tackling me hard as we went sprawling to the ground. Anna was trying to lift herself up from her sitting position, and as she was standing, Mitchell tried to stand as quickly as he could as well. But he moved too fast, and he lost his balance. I know he didn’t mean it, but it doesn’t stop me from hating him to this day.

When Mitchell lost his balance, he stumbled into Anna. Mitchell’s fall was hard, and it sent tumbling back over the railing. I watched in horror, helpless to stop what was happening. The fall was only fifteen feet, to any adult it could have been survivable. But to a seven-year-old child’s neck, the gravel was unforgiving.

When Anna’s head made contact with the ground, the loud *SNAP* that came with it resonated throughout the playground. The sound of children excitedly playing was silenced as everyone around turned and quietly looked at Anna’s little lifeless body. There was no blood, but when I remember that day, the color that comes to mind is red.

The dress she or her mother picked out for her that day, was a crimson color that laid in contrast to the grey stone of the gravel. I stared down from the top of the modular on my hands and knees as tears began to form in my eyes. Then I heard Mitchell behind me. He was sitting with his hands wrapped around his knees. He just kept whimpering and saying,

“I didn’t mean to, I didn’t mean to.” Over and over again. For some reason his stupid blubbering made my blood run hot.

“Shut up!” I yelled at him. But he just kept right on repeating those same words over and over again. I saw red, and I crawled over to him and grabbed his shirt. He stopped then, looking into me with truly sorrowful eyes. This stupid little scarred bully was the reason I lost my world. I didn’t want him to be sorry, I just wanted to hurt him. I drew back my fist and pounded him square in his nose. He cried out, and I heard something snap in his nasal cavity, but I didn’t care. He killed Anna, he was the reason I lost my only real friend. I drew my fist back once more, but before I could bring my fist back down on his blubbering face my arm was caught by a recess monitor.

“That’s enough Bobby!” She cried, and pulled me away down into the school building, she led me to the principal’s office to call my parents.

 

The recess monitors on duty that day saw what happened, and as soon as Anna fell they called an ambulance. Anna was pronounced dead on arrival. I of course, was heartbroken. My parents let me stay home from school for the remainder of that week. I didn’t get in trouble for what I did to Mitchell. I guess everyone figured I’d had enough grief, or they thought he deserved what happened.

I mostly spent all of my time that week in bed and I hardly ever came out of my room. When, I did come out of my room, it was because my mom forced me to try to eat dinner. I did eat, but not much. I didn’t have any will to eat, I didn’t have any will to speak. I could only lay in bed, staring up at the ceiling with tears welling in my eyes. Once again, my world was small and within it, I was alone.

My parents obviously were very worried about my state of mind, but I soon realized that putting on a smiling face and telling them that I was fine was the easiest way to deal with their constant badgering. School was a different story, I spent most of my days ignoring mostly everyone who wasn’t an adult. I just did my work and stayed quiet. The only thing I had to be thankful for is that Mitchell never spoke to me again, and even went out of his way to completely avoid me.

Then about two weeks later, I woke up one morning with an intense pain in my chest. When I told my mom about it, she lifted up my shirt to look at where I said the pain was. There were no marks visible, but when she touched the spot on the right side of my chest that I was complaining about she drew back her finger in surprise. When she pressed her finger against the afflicted area, her fingernail made a grating sound when it made contact. Going into full on mom mode she immediately grabbed her cellphone and called me off from school, then called my pediatrician and said that I needed to be seen right away.

When we got there the doctor examined my chest and did some x-rays. We then had to sit in the waiting room for results. After an hour or so the nurse came out to talk to my mom and they whispered quietly while I sat watching them from my seat unable to hear the conversation, then my mom told me to wait there while she went to talk to the doctor.

Stiff Skin Syndrome, is what they called it. The disease is genetic, though it is extremely rare. Basically, your body forms lesions on the skin that become hard as stone. Eventually the disease makes it very difficult to move or even breathe. They told my parents and I that I was very lucky since it was spreading so slowly through my body.

Because the disease is so rare and unheard of there is no real proven treatment yet. So, I spent a lot of time going to physical therapists and exercising my limbs in preparation for what the disease was doing to me. The first night home from the doctor’s office my mother began her own preparation by covering every mirror in the house with thick, black sheets. At first the covers on the mirrors were frustrating, but I knew she meant well.

When I was ten, the disease had spread down to my stomach, when I was thirteen, it covered a large portion of my neck. By the time I was seventeen, I was no longer going to school. I was mostly bed ridden and on oxygen because the disease had started to spread to most of the top half of my legs and it was hard to walk. It was rough, but I always just considered myself somewhat lucky that the disease hasn’t spread to my arms, at the very least didn’t have to be fed through a tube.

 

I am nineteen now, living with parents who are doing their best to stay positive even though their son is becoming a living golem. They look at me with sad yet hopeful eyes whenever they speak to me. They still believe a cure will be found, I know that even if one IS found, it will be too late for me.

 

Last night, I was lying in bed with my oxygen mask on my face staring at the ceiling. After all these years, I still haven’t adjusted to a life of being disabled. My little world has only gotten smaller with time as my childhood and teenage years were torn from me by my illness. I had to pee, and mom always hated when I got out of bed to do things on my own without my wheel chair, but I was tired of living my life like a helpless child. I tore my mask off and slowly swung my legs over the edge of my bed, limping through my open bedroom door toward the bathroom.

Once in, I firmly shut the bathroom door and locked it. I knelt down; an act which cause me a bit of pain, and began to lift the toilet seat. I lost my balance though, and began to fall back as my hand reached out and grabbed the first thing it could of instinct in an attempt for my body to right itself. I grabbed the thick black sheet that covered the mirror on the wall, and ripped it off as I tumbled backwards on my behind. I cursed out in pain as my bare back hit the cold tile wall of my bathroom. I sat there silently for a moment listening for my parents, hoping to god I didn’t wake them up.

After a few moments of silence, I was satisfied that they were still asleep and I stood up, putting my hands on the wall behind me for support as I did so. I alone turned around in that bathroom and gazed into the mirror, but I was not the only one reflected in its image.

I began to find it hard to breathe. My lungs were not cooperating and I felt dizzy. For There in the mirror, with her back to reflection, stood Anna. I knew it was Anna, her brown curly hair was unmistakable, and she was still wearing that same crimson dress. She stood in front of me, blocking my view of my own chest. I didn’t know what to do or say, my mind drew a blank all that came was out was an audible whimper. I made a silent prayer in that moment that she did not turn around, but as if in answer, her broken neck slowly craned around in an unnatural motion.

“No” I whispered, “No, I don’t want to see, please.”

Either Anna could not hear me in her other-worldly form, or she didn’t care. Her neck was still turning and was about to complete its one-hundred-eighty-degree rotation. I shut my eyes tight before I could see her face. I didn’t want to see her, the face of her angry spirit that had hate filled eyes for what I allowed to happen to her. I didn’t want to bear it.

Then I heard a sound that god help me made me open my eyes. I looked into the mirror, into Anna’s eyes. Eyes that were bloodshot but still retained a glimmer of emerald-green. Eyes that, instead held hate within, held nothing but tears that slowly ran down her cheeks. She was looking at me pleadingly.

“What?” I whispered, “What can I do?”

She moved aside, revealing my chest in the mirror. I saw what, if it were any other ghostly thing there in that bathroom with me, would have made me angry. Instead, I too began to cry because I realized in that moment why my disease never spread to my arms or hands. Stiff Skin Syndrome is indeed a very real affliction, but I don’t have it. To the naked eye, my skin formed hard lesions that bulged the skin. But in that moment within the mirror, I could see my affliction as it truly was. There, scratched into my chest and neck, were several parallel lines. Lines that formed boxes. Only one box from each group of line was filled in and they were filled in with only one x.

Since the day Anna died, for some reason, she could not pass on. She stayed here with me, and she was so lonely that she tried to reach out to me, but I wasn’t listening. All she wanted, was to play our favorite game with her only friend. In all my own loneliness, I was foolish. How could I not feel Anna here with me? I spent so long crying and complaining about my own small world, but Anna’s world had become much, much smaller.

If you can somehow read this Anna, I am so very sorry for what happened to you. I am not angry with what you have done; I deserve this for what I let happen to you. I love you, Anna, you are still my world and I cannot wait until we can finally be together once more, in our own little world.

 

See you soon.

 

 

 

Authors Note

Bobby, as you’ve now figured out if you read this story, didn’t actually have Stiff Skin Syndrome. But it IS a very real disease and it IS one that, as of right now, has no proven treatment and no cure.

This story was written with the purpose of not only entertainment, but as a way to do my part in spreading awareness of the disease. If you would like to know more about it, and maybe get some information on how to help find a cure, visit https://rarediseases.info.nih.gov/diseases/5025/stiff-skin-syndrome.

Thank you for reading.

 

 

 

 

Stiff Skin Syndrome

One thought on “Stiff Skin Syndrome

  1. 180 says:

    Other than the Brass Fedora, this is your best yet. Since you described loneliness (which we all feel) so well in the beginning, it was easy to believe you when you described chronic illness (which not all of us experience). Good job.
    1. If Anna is visible only in mirrors, the mirrors need to be covered quickly or Bobby would see her from the start.
    2.Your biggest formatting issue is not starting a new paragraph when someone speaks. It makes it easier to read.

    Like

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