Engulfed in darkness…and lies

For as long as I can remember, I have been allergic to light. Yes, I said light. This rare and severe allergy is called Solar Urticaria (SU). Whenever I’m in the sun or in a room with lights on or anything, my skin starts to feel like it’s on fire. There’s usually a burning sensation tingling through my skin and red hives climbing up my back like spiders. Having a disease like this means I have no devices, the curtains are closed all the time, and I have no social life. Before it was much different, but because of me everything has changed. 

When I was just 5 years old, my parents and I went to the beach mid June to celebrate my birthday. That’s when it all started. After about two hours of basking in the Sun and playing with the crystal blue water and grainy sand, I broke out in tears. I felt as though my skin was burning off and any movement of my body, I felt my skin was tearing. Ruby red hives covered my back and my parents called for an ambulance. The doctor diagnosed me with SU and said there wasn’t a cure. He said the only way for me to live was by staying in the dark and limiting my exposure to any type of light.

When I was nearly 8 years old, I began to notice the noises of kids my age playing together, and I couldn’t help but peak out my window. Once, when my parents were out on a date, I snuck out the doggy door. I went to go play with all the other kids but when I started walking towards them, the light grew brighter and I fell to the ground. I was in the hospital once again for 28 days. As I recovered, we returned to my house and when I entered, I noticed that our house was overflowing with hospital bills. They were everywhere. I decided to start sleeping during the day, I thought it would help me not to go outside again. But when I was awake at night, I always heard my parents arguing. They yelled and sometimes I thought I heard slaps, but I tried to convince myself otherwise. After months of that, one day my mom screamed at my father and they went somewhere. My dad didn’t return after that, I don’t know why, I’ve never had the courage to ask.

Soon after, my mom and I moved all the way to Norway, where it is dark for 6 out of 12 months. She said it would be a fresh start for us, and I wouldn’t  have to worry about going outside. We moved there when I was 9, now I’m 15. The house is always dark, it has to be. Over the years, I’ve become more and more sensitive to light. Because I’ve had less exposure, the few times I see light, I become more sensitive. My mom works all day to pay the bills and provide for me, while I sleep all day and stay up all night. With less and less interaction with the one person in my life, I’ve started my journal.

-June 24, 2016

This morning, my mom came home from work earlier than ever, it was only 5pm when she returned. Her face looked grim and I asked her what happened. 

“I lost my job,” She said, without looking at me, with a tear streaking down her face.

“But how? You’ve worked so hard. It’s not fair,” I said, my voice trembling.

“I-,” she stuttered, “I think my boss did it on purpose. He asked me on a date but I refused. But it’s all going to be ok. I’ll just get another job.”

I was filled with anger knowing everything my mother has done for me and how hard she’s worked just to provide for me. How could this happen after all we’ve been through?

-July 1, 2017

Something is up with my mom, I’m not sure what, but I’m trying to find out. Just a few hours ago, she said that someone was coming over for dinner tomorrow.

“Ha, since when do we have someone come over for dinner? You haven’t  forgotten about my condition, have you?” I asked with a little bit of sarcasm in my voice.

“Well I guess we will start to be those types of people who bring guests for dinner. Also, I have not forgotten about your condition and that’s why you will be staying in your room for the night.”

“What!!! No way! Why?” 

“Honey, you know why.”

“Well could you at least tell me who’s coming over to our house?”

My mom didn’t look at me, she just turned around and walked to her room.

-July 21, 2016

Tonight is the night. Someone is coming over for dinner, but who? I need to know, I really, really, really must know who’s coming to our house after many years of it just being the two of us, alone together. So, I’ve devised a plan. At approximately 5pm the guest will arrive. My mother will greet them at the door, and that’s when I go in action. I know the lights will be on, so I’ll grab sunglasses and a hat. Next, I’ll quietly open my door and sneak my way into the pantry in the kitchen. I will leave the door ajar so I can see and hear better. When they start to eat and talk I will eavesdrop. When my mom gets up to go to the bathroom, which I know she will, I will make my move and greet the guest. It’s all up in the air from that point on. The plan will go into action in 4 hours.

-July 22, 2016, 1:00pm

The plan went terribly, in fact, the worst that it could possibly go. Everything started out fine until I confronted the guest. It was a man, his name was Tom. I asked him who he was and he said he was my moms boss. I told him that she’s currently unemployed and Tom said that he was her old boss. I quickly came to the realization that he fired my mom. All of a sudden a surge of rage went through my veins and I screamed “HOW COULD YOU DO THAT TO MY MOTHER? YOU ONLY EMPLOYED HER IN THE FIRST PLACE SO YOU COULD DATE HER!”

My mom ran into the dining room, her face in shock. She immediately pulled me back and away from Tom and she brought me into her room. 

“Don’t you mess this up for me. Listen, I need to get my job back,” without waiting for my response she shoved me into her closet and locked the door. 

I heard her enter the dining room again and she said “Sorry, my daughter has some medical issues.” 

I can’t believe she actually said that. Issues. What am I, some scumbag that doesn’t even matter. She’s never referred to my condition like that before. Am I an embarrassment?

I sat in the closet for a long time, and tried to listen but my pounding headache from the screaming and lights drowned out any noise. While sitting in the closet, I went through my moms clothes. When I got to the end of the rack I got angry again and ripped all the clothes off the hook. I saw a bag, a trash bag that looked weird in shape. I opened the bag and felt human flesh. I quickly turned on the closet light and saw my dad's face. I knew with one look it was him, and I shut off the light. I started crying so much that a river could have formed. Then, the anger came back and I rammed into the door so hard that it opened in one swift swing. I stormed into the dining room and saw Tom’s body lying on the floor with a knife in his heart, blood oozing out. I looked at my mother, and she just murmured “I had to, there was no other way.”

“You killed an innocent man just like how you killed dad,” I spat

“No honey, you wouldn’t understand. It’s complicated.”

“I want to know what you did to dad, and why you killed this man!”

“Well, before you were born and before I met your father he was part of the mafia in Boston. He did some dirty work and then he left after we got married. We had you and everything was going well… until your 5th birthday. His old ‘friends’ from the mafia payed him a visit. Your father owed them money and was hiding from them. After that, we stayed hidden in our house, cloaked in darkness. I told him that he needed to pay them back but he said he couldn’t, that’s what we argued about. I drove him back to Boston one day to pay them back, and they strangled him. They told me to leave and take the body, so we went off to Norway. That man right there, my boss, he didn’t want a date with me, he wanted to kill me. Somehow he knew about our past, so I did what needed to be done.”

“No no no no! That can’t be true! We stayed in the house because of my condition. You’re lying.”

“Honey, you never had a condition. We just needed to keep you inside and safe. We were protecting you.”

I went off to my room and slammed my door.

My entire life is just one big lie and I refuse to live that way.