I am Kylie. I have Aquagenic Urticaria. That basically means the minute water touches my skin, it blisters. It feels like burning acid, even as it just comes into contact for a split second with my epidermis. There are varying severities of the disease; mine is one of the worst.
Although allergic to water, I have dreams like all other teenagers, although they tend to be of what I cannot have. I always wondered what it would be like to touch the ocean and feel the waves splash upon my body. I dream of wearing a bikini and not feeling threatened to go into the water. I envy those that enjoy a walk in the rain and can kiss a cute guy, as I have seen in romance movies—so many unfulfilled dreams and fantasies.
I was teased constantly at school because I wore a pair of waders to protect my skin. Teachers didn't know about my medical diagnosis. They knew "something" was wrong with me just by seeing me wear waders but didn't know exactly what.
Everybody else got to wear whatever they wanted, and I had to wear these big balloon-like pants because I needed "protection." I longed to be like the other girls at school and tried mingling with others without a care. I just hoped to be accepted. I wanted to be like everybody else, but because of my disease, I ended up in a group of social outcasts.
I told Mrs. S and Mrs. Greene, two of the teachers I got along with, "I am going to be famous one day!". They knew right from the beginning that I was different. Whenever they were around, I was always bubbly. They complied, "One day, you're going to change the world."
I believed it. I would prove those teachers right. Doctors knew about my situation but could not speak unless of medical release due to confidentiality. The only people that knew about my condition and were initially allowed to talk about it were my mom and the doctors.
I couldn't have asked for anybody better as a friend. I met Marissa one day as she came to my defense when a couple of girls, Neisha and Leah, gave me the nickname of Fraidy Wady. She pulled them by the hair and said to them, "Leave her alone, or I will tell your parents that I saw you smoking behind the school!" They instantly backed up and said they were sorry to me. I never truly understood why they teased me and bullied me.
That night walking home from school, Marissa joined me. She told me that everyone has a secret! And everyone has problems, and it was just a matter of time before they surfaced. I finally understood that those girls had their own issues but were too afraid to fix them. At least my problem was always upfront and not a problem from within.
Even after Marissa stood up for me, they ridiculed me without Marissa around. One time, while daydreaming by the school pool, Neisha and Leah saw me sunbathing. They came by and started calling me names. Even after Marissa stood up for me, they ridiculed me without Marissa around. They cornered me by the pool and pushed me in. After being submerged and reemerging, I had to go to the emergency room in the ambulance with my scalp covered in flakey burnt skin and red itchy protruding bumps.
Marissa came to my hospital room with my favorite chocolate candy bar. I was so happy to see her. She asked me if I wanted her to tell the girl's parents. I was never a vindictive person; I just didn't want to return to school. My mother and Marissa had a long talk. Marissa was let into my private group between my mother and the doctors. Now, I had someone to confide in, a best friend!
After that, I was too embarrassed to return to school. My mother tried convincing me to go back, but ultimately she immediately took me out of public school.
From then on, I pursued my education through homeschooling. I took a lot of art classes because I had a passion for art and poetry. If I couldn't touch water, I could pretend and feel the wetness through art by painting or creating poetry and lyrics involving water.
I loved to paint the sky. The white overlapped the blue sky with the clouds' gray and white colors. I admired sunsets and was excited to paint the sun that beamed through the clouds. I enjoyed painting the different shades of land horizons. I stroked out the green and blues of oceans with the swift movement of my paintbrush. I visualized in my heart what it would have been like. The smell, the wind gust, and the birds squawking.
I refused to touch the water as it was forbidden to do so. I had to listen to my mother and my doctors to remain safe. Although, inside my heart, I longed to touch the water just like I had imagined when I painted it. I wrote poems about going near the water or wading my feet at the beach, as I have seen on tv shows.
The neighbor would always be away at school when I was outside painting. I would think about the neighbor boy even when I wasn't outside. I had also been secretly writing poems about the neighbor boy because I felt there was more to him than what I saw. I was intrigued. I finally realized I had feelings for the neighbor boy all this time. I suffer from social anxiety, so I aimed to shy away from love.
I only remember one time when my stomach did a little flutter. I was in 3rd grade. I remember this boy; Marissa and I were lying on the grass outside. Marissa and I were rolling around and playing on the swings. We used to pick dandelions during recess, and he played soccer since he was an athlete and a know-it-all.
One time the know-it-all athlete boy "accidentally" kicked a soccer ball at my head. It hurt. I'm glad it happened because it allowed me to meet him. He introduced himself, high-fived me, and asked if I was okay. After seeing I was okay, he asked if I wanted to play soccer. I politely declined the offer. I did not want to make a fool of myself, as I was no athlete. I smiled and blushed. I was so young, and it was just an innocent little crush. I never felt that way. It felt weird because I had never experienced those emotions again until I saw the neighbor boy outside.
I told Marissa about it, and my face turned bright red. Marissa playfully teased me about it for the longest time until I was taken out of public school.
The sad thing was that he did not know what happened to me in third grade. We were best friends in 5 minutes, and I was gone the next day. I guess that's how it works when you are young. I am sure he made new friends after me. I do not think he realized I was taken out of public school. He probably figured I moved away or something of that sort.
After starting homeschooling, I did not wear waders anymore, at least not in public. I got used to wearing overalls most of the time. Now that I was finally used to their warm temperature, I acclimated to them. I also cut out the pants from them and made headbands that were decent to use. I knew how to sew and find embellishments for my headbands, so I fit in as best possible. That is all I had ever cared about, fitting in.
My mom got discounts from the school so I could attend art classes at school. We weren't wealthy, but we weren't poor. My mom would sometimes donate blood at the local blood bank if she needed extra money for something.
I love my art classes, but if I wanted to miss a few days. My mom would talk to the school, and I was homeschooled for those couple of classes. However, since she was a substitute sometimes, she called in sick because she wanted to be here when I was ill due to malnutrition. My diet was very specialized. I wasn't allowed to sweat, so I could barely eat meat, among other things. Also, my diet was restricted I wasn't allowed fresh berries, or nuts. Rarely, I could have a chocolate candy bar. I've been to many specialists to get treatment. Every treatment given made things worse and not better.
Doctors had told my mom that my diagnosis was fake until they saw my face and the reactions on my skin once it came into contact with water. There were red raised bumps on my skin, and they were so itchy, like poison ivy. This was the last time my mother would ever consider a doctor. We tried everything else.
"Let's try submerging the entire skin," said the doctor.
"Are you insane? Do you want my daughter to die," my mother said so loud that the security officer was called over. Since I was a minor, my mom had to be with me at the appointment.
"Ma'am, what seems to be the problem?" the security officer questioned.
"This doctor doesn't know what he is doing! He is trying to kill my daughter!" My mom was ready to swing at the security officer until I delved into her shoulder.
"Ma'am, you will have to calm down." the security officer firmly says.
"You say your daughter has a disease that less than 100 people worldwide have. There is very little research. The doctors here are doing their best to accommodate you but can only go so far with such extensive accommodations." the nurse behind the desk says.
The doctors didn't believe my mom and didn't think somebody could be allergic to water. The last straw was when my mom opened the door to ask the doctors a question. She was amazed by how openly they were talking about my medical diagnosis.
"There's no way somebody could be allergic to water; it's next to impossible. The body is made up of 70% water, " one doctor said.
"So you think I am a liar?" My mom swiftly chastised the group. My mom has never been a liar, but being told what I had was made up made her angry. She was a teacher and took offense to people calling her a liar. After that situation, my mom walked me out of that hospital, and I haven't been to the hospital ever since. This was something that would affect anybody. My mom had told me that even if I had something obscure, doctors often don't listen to their patients.
I had my mom as a teacher for homeschooling; everybody always called her Mrs.Smith at school. When I was ahead in my homework, I would go with her and sit in her class, as long as it wasn't raining outside. Nobody knew who I was; the classes were big, so nobody even noticed I was present. It was fun watching my mother teach. She acted the same with everyone else as she was with me.
Most of the time, I would stare out the window and watch the sunshine as time passed. I would see animals sunbathing outside, and I only wish I could have done that. My mom often tried to distract me from looking out because she saw the wishfulness and hope on my face.
My mom would never let me go outside even if there was a 10% chance of rain, so I guess it is good that I lived in Nevada, where we got an average of a few inches a year. Sometimes Marissa would come over for a visit after school. She would tell me everything that happened every week. I felt like I never stopped going. One of those days, Marissa and I were sitting on my bed listening to music, and "THUNK!"
Out of nowhere, I saw a basketball fly; it startled me. I went to the window to see the neighbor score a basket. He was playing basketball with his friends. I blushed. He had the most incredible brown hair and magnificent brown eyes and was so tall. Marissa was watching me, and she giggled.
The sweat went down his forehead and moistened his clothes. He played every sport the school offered as long as they did not overlap them, but his big passion was basketball. He was leading by 5 points; I squinted to see the leaderboard sign. I always heard gossip about him because he never showed up in my art class. My mom always knew I liked him but never introduced me to him.
I remember the first time I saw him. It was raining so hard, but it was so humid. I loved to watch the rain drip down my windows as I sat on my bed and just zoned out of reality.
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