Hello everyone! I'm going to add part of my MFA manuscript here! This personal essay is titled "Barbie Street". It's about growing up with a chronic illness while living in poverty.
My hands hurt. They’ve hurt for ten years. I’m counting down. Waiting for my bones to erode and waste away at the cartilage. My fingers will twist and turn like vines growing on the side of a house. Sometimes I accept it, but then I remember: I’m a writer.
I was diagnosed with Rheumatoid Arthritis when I was ten years old. I wanted to be a dancer. I thought I would walk into Julliard and wow them with my talents, like a Hilary Duff movie. I was always a hopeful little girl. Everything around me was constantly falling apart so I imagined a future where I lived on top of the world and everyone loved me. In a tiny trailer park room, I’d listen to the Lizzie McGuire Movie cassette, that I had burned over my mom’s gospels. I imagined myself getting pulled onto the stage like Lizzie McGuire to sing “Hey Now” and yell out “This is what dreams are made of!” I thought that if I worked hard, I could get there.
I didn’t take my diagnosis seriously at first. And though I spoke more English than my mother, the words meant nothing to me as they did to her when my white pediatrician explained to her, “she has traces of juvenile rheumatoid arthritis in her blood.” I’m sure my mom heard the word “arthritis” and thought, “está muy chica para eso.” And swooshed it away, like all the other non-urgent issues in our life.
Me being diagnosed wasn’t even in the top five on the list of things to be concerned about that year that I was ten.
My dad was a drug addict who spent most of his time on the roof of the house watching out for aliens or destroying our toys because there was listening devices in them.
We had a beautiful house, right on Barbie St. Every Christmas, our family filled the rooms and hallways while my mom pretended to be well put together over Venezuelan tamales.
I shared a room with my grandmother and twin siblings. I used to call my grandma “mom”. My real mom was never home. She spent her days working endless jobs to try and keep our house. I barely knew her then.
But through my father’s drug addiction, we lost the house on Barbie St.
We had nowhere to go for a long time. We slept in the car or in a small shack in the back of my other grandmother’s house. This was after my other grandmother, my mother’s temporary replacement, had moved back to Venezuela. My mom couldn’t find the time to worry about me. She also had four other children to worry about, including my oldest brother who left home at sixteen in the name of his gang.
I didn’t really know I was sick. I ran around with the rest of the kids at recess. I played with my siblings. I thought I was a normal elementary school kid.
But when I tried to do certain things other kids were doing, like tying my hoodie around my waist, I noticed I was in pain. Every day I was fatigued and every day my arms and hands hurt. I would try to go to the nurse and tell her what I was feeling but they deemed me as the bad kid that wanted to skip class. They even gave me a nickname, Dolores, which means ‘pains’ in Spanish.
The adults I trusted to keep me safe and take care of me could barely care for themselves.
As I grew older, the disease grew stronger. There were days I couldn’t get out of bed and days where I couldn’t dress myself. Even lifting a spoon to my face to eat was hard. My little sister and mother would help me but not without complaining about it or saying I was faking. They said I was faking to get out of doing chores. It wasn’t until I was bed ridden in pain and vomiting that my mother realized I wasn’t faking. That’s when she took me to see a specialist at the Loma Linda Children’s hospital. But by that time I was already fifteen. More than five years into my diagnosis without treatment. I wonder if my life would be easier if I had gotten treatment as a child instead.