I was born in a small town in Uganda. Growing up, I realized my parents were a little strange and different. For starters, they always spoke in whispers with each other, which was annoying, and they never let me leave the house. They themselves would not leave the house for work or for groceries—every week a box of supplies would just mysteriously arrive.
Every morning Dad would spend hours reading the newspaper and circling things in it with a red marker. Once, when I was four, I kept asking him to pour me some milk but he kept ignoring me, so I leapt onto the table and stepped in his bowl, spilling milk all over his newspaper. He exploded.
“Oh my god, do you realize what you have just done, you are such a nuisance!” he shouted at me. “Here, take the whole carton and just leave me alone.”
I wished I could leave my parents forever. They didn’t even love me. When I was five, Grandma came to see us once and she brought me an adorable cat. I was so happy but of course my parents weren’t.
“A pet! We already have Sofia, it’s already enough work to take care of her. No—just take the cat back, please,” my mother said to Grandma.
“No!” I screamed and then ran up to my room with the cat and slammed the door. But when I woke up in the morning, the cat was not in my room. I looked all over the house: nothing. I just knew my parents had gotten rid of it. I screamed and cried but they said they didn’t know where the cat was.
Liars. Before they could stop me, I ran out the front door and I was never going to come back. It was a very sunny day and as I was running my skin suddenly started turning red and itchy. I looked up at the scorching sun and my whole body began to burn.
I cried out in pain and fainted. When I woke up, I was in my bed. Mum told me the doctor had been to see me and he had said I was perfectly fine.
“No, that’s not true, I’m not fine. The doctor is dumb, the sun almost killed me,” I cried out.
My parents said I was just babbling but I knew something was up and I was not going to let them hurt me, so after that I refused to let a single ray of sunlight touch my body, not even indoors. I wore socks, hoodies, and sweatpants to cover myself from head to toe—only my eyes were visible.
My parents almost fainted when they saw me roaming around the house like a little ninja. The only time I removed my costume was when the sun had set. I never went out during the day. I even insisted on being homeschooled.
By the time I was thirteen, my parents refused to homeschool me anymore.
“There is nothing wrong with you, just go to school,” my mum said.
It had been a very long time since I had last gone out or had any social interaction with anyone besides my parents.
My parents enrolled me in school, but I still wore my costumes. I didn’t realize school would be so different. Everybody thought I was a weirdo and always pointed and laughed at me. I felt very insecure, but nobody knew or understood how allergic I was to the sun.
Then, during PE one day, the gym teacher asked me to wear sportswear like the rest of the class.
“I can’t take this off, it would kill me,” I said to him with rage in my eyes.
“In that case go to the principal’s office. I would like to meet your parents and talk about this Halloween thing that you have going on,” he said, pointing me to the gym door.
I ran out crying. Why didn’t anyone understand that I could die if I was exposed to the sun? That day I went home and asked my parents to take me to the hospital and I told them what had happened at school.
The next day, Mum drove me to the hospital to get some scans and speak to the doctor. That’s when I learned I had an allergy called SOLAR URTICARIA and it was extreme when I was five because I had rarely gone outside as a kid. I was so happy to know that my parents and I were not vampires or whatever childish thing I had in my head. But my parents certainly are strange—I wasn’t wrong about that.
27 February, 2023
