Abandoned Heart

-My disease-

This morning my mom almost had to take me to the hospital because when she came into my room to wake me up, she said that when she called me I didn't move, and I wasn't breathing. That's just part of it though, living with this disease has been the worst seventeen years of my life. It all started when I was two because every time my mother would take me outside to play she said I would just scream, and run to the door crying, and every time my mother would take me back inside I would have a severe sunburn and occasionally have blisters form around my eyes. One time she took me to the hospital because my aunt was babysitting me and my mother didn't tell her that I had been acting this way, and at the time my aunt worked from home.

So it was perfect because when my mom needed to work I just stayed home with Aunt Rebecca. I had gone outside while Aunt Rebecca was in the office working, and she said all of a sudden she heard screams so loud she thought someone had been ran over, pretty bad right... but when she got outside I was laying on the ground passed out because apparently I had over exposure to sunlight and the ultraviolet rays burned my skin to the point where my body just overheated and I passed out , and I cant even explain the pain that I felt even though I was only five. It was like tiny needles were being poked all over and someone had just poured lava on me. It felt like I could have caught on fire, that's how bad the pain was. So she immediately called my mother and said "Elissa just passed out I'm taking her to the hospital right now, please hurry!" That was the only time I've had to go to the hospital though for like an emergency because while I was there I was diagnosed with Xeroderma pigmentosum. My mother cried for a long time after she found out, she said that it felt like she was abusing me because I would scream every time outside.

Now I have to stay inside during the day, and its really difficult trying to get a job because I can only leave the house when its dark outside. I've tried everything, like wearing a lot of clothes when I go outside but the sun would just burn my skin no matter what. Putting on a lot of sunscreen doesn't work either. My mother and I have prayed so much that god take away this "curse" but not even that works. I hope one day I can just be happy and go outside and listen to the birds sing, and not worry about being burned alive, or getting blisters all over my face and body. I used to go to this weird toddler meet up thing, because my mother thought that I needed a ton of friends when I was like four, but I had to obviously be taken out of the meet up's because when we would leave the house I would kick, and scream, and scratch my mom because I thought she was purposely making my skin hurt. So I stopped going and now I'm just locked up with nothing to do but text my bestfriend Kaylee and open my window sometimes and talk to my neighbor, he's super friendly and thank god he's my age, or that would just be weird. His name is Robert, he always makes me smile, but it was really hard trying to explain why we couldn't meet up during the day, and like go swimming and stuff.

I got his number to, and I explained it all in like one paragraph and his only reply was "Oh.." I didn't know what to say from there, but he eventually realized that I could go out at night time, so as things went there way we started dating. It still was sad for me because my friend would send me these beautiful pictures of the beach during the daytime, all I could do was see it from a small screen and wish I was floating in the waves with no cares. That's not how life is though, there are tough times and I had one of those about four months ago when Robert moved away, I cried for along time, longer than I had ever cried before. I couldn't even hug him bye because his family decided to move at like eight in the morning, all I could do was wave...

Robert always texted me though, we eventually had to end things because long distance was something that I just couldn't deal with, I was the one who had to end it. That's what makes me feel terrible to this day, I was the one who had to text this lovely, handsome, adorable boy that I was breaking up with him. Now I just sit here alone.