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“Mama, what is that?”
My mother’s head flicks up to look at me. “What’s up Norman?”
“The girl with the weird shadows on her head. That small girl over there.” I point out to the girl in the other line. We were in cue for the next rollercoaster ride.
“The Vietnamese girl with the floral shirt?” My mother questions as she shades her eyes from the sun with her hand. “Oh honey, let’s move lines, we’re in the fast pass line.”
“Uh, yeah the flower shirt girl! What are those shadows?” I giggle.
“Oh sweetie, she has that Michael Jackson disease.” My mother looks back down at the Women’s Health magazine that she was reading.
“Oh, so she’s going to change colors?” I ask as I tug my mother’s skirt.
“No silly, she’s going to have different colored spots on her body. That is all.”
“Oh Mama! Can we go to the other side of the amusement park?”
“Sure, honey!” All without looking up, my mother ushers me into the seat of the ride.
“Hey Dad, what’s that on the television?” I nudge my father’s shoulder as he walks past the couch.
“Huh?” questioned my father.
“What is that? It looks like something I’ve seen before. Mama said it made Michael Jackson bleach his skin, and someone at church camp also had it”
“I don’t know, you think I know? It’s probably some skin cancer or something.” My father starts to walk away but pauses to look back at me. “Ask someone else, kiddo.”
I see him proceed to turn into the master bedroom.
“Ok, time to get to my homework.” I murmur as I bounce off the couch and walk into my room. I collapse into my chair and lift up my knee to rest my hand on my chin. “Well, what now?” I thought.
“There she is again!”
“Norman, shush!” My friend swats my arm. I had just blurted my exclamation to my entire class.
My eyes streak to the front of the classroom. The momentary distraction had blinded me from realizing what I was doing.
“Mr. Weber, would you like to share something with the class?” My Geometry teacher glares and starts to slowly approach me. “Anything to say for your loud disturbance during my class?”
“No, Mrs. Coupé. I am very sorry. May I go to the bathroom?”
I scramble to the door, grip the doorknob, and yank the door past me. I look around the empty hallway and begin to walk towards the group of administrators further down the hall. I pull my hoodie up to sneakily cover my face, as I try to get a glimpse of the Asian lady near the back of the group. Her face had aged and her hair had thinned, but the petite stature and the floral jewelry gave her away.
It was the same lady from all those years ago at the amusement park.
I first noticed I had vitiligo when I was 12 years old. I initially thought that the patch on my knee was a scrape or sunburn but it did not go away. I put lotion on it, moisturized it, and even tried to scratch it off. Nothing worked, but rather the pale area got bigger and spread to my elbow. I went to my local library to see if I could learn anything, but I did not know what to look for and the librarian was not of any help.
I had seen it in my life twice before, and in both situations, the people with vitiligo stuck out like sore thumbs. Up until that point, I had no health problems, no scars, and no complications. So when I realized I had this unique disease that was easy to recognize and easy to ridicule, I was shaken. I had entered middle school just one year earlier, I didn’t have many friends, and I was still relatively unpopular. Luckily for me, however, I could always say it was a burn. And as long as it was only on my knee, I could cover it up with pants.
I did not do anything about the vitiligo for a while. I forgot about it, but silently noticed more and more patches on my skin. They were on my arms, legs, and neck. At first, I was in denial. I did not care about it until the patches started to get on my face. It was easy for people to notice the white spots on my face. And once people noticed the spots on my face, they began to notice the other patches on the rest of my body.
All of a sudden, I was glowing. People continuously stared. No one made fun of me directly to my face, but I was not dumb and I definitely was not deaf. My friends always reassured me, but I could not just ignore it. The more I became visible, the more I desired to become invisible.
I felt trapped, cornered by these pale spots that continued wrapping itself around my body, marking me as its prey.
I would go home to hide in my room, coming out only for meals. I absolutely never wore shorts or t-shirts, I skipped pool parties, and I tried to hide from my friends. I would skip lunch to eat in the bathroom stall, terrified of being seen. Unfortunately, I still had to show up to class.
Somehow, word came around to the upperclassmen that I was different. They started to take notice of me, and my silent harassment turned into public harassment. I was laughed at, called a zebra, a freak, a mutant. Many students socially distanced themselves in fear of catching this “disease”. All of this was done in the hallways, classrooms, and cafeterias of my school. Even my friends, who had been with me since the beginning of middle school, slowly distanced themselves from me. I became so desperate that I started waking up two hours early to put makeup on the patches. However, it was futile.
This went on for weeks, until my parents finally confronted me about what was going on. At first, I did not say anything. I was too embarrassed to tell them that their son was a freak. But after incessant probing, the dam broke. I told them everything: the name-calling, the bullying, the makeup, the clothes, my friends.
My parents were furious, enraged at the teachers and staff for not acknowledging this public harassment. But the staff did not pay attention to the students. They worked their jobs and left.
My mother started asking around to see if anyone knew anything about abnormal skin patches. She asked her work, friends, pen pal, and her family. It took a month before we got any information. My father started putting up signs asking for medical help around our town.
One day, my mother’s colleague brought her brother to come to see me.
His name was Samuel Brixton, and he was a dermatologist. He grew up in the neighboring town and had been a dermatologist for 15 years. Dr. Brixton and I became great friends as I would shadow him at his practice later in my life.
This man had brown thinning hair, circular glasses, a white lab coat, and a sweater vest over a lavender shirt inside the coat. He was medium height but carried himself confidently.
He instructed me to sit down on a chair and asked me to tell him what was going on. I told him that there were pale patches of skin around my body. The man then asked me how long it had been on my skin, to which I replied that it had been around three and a half years. He turned to my mother standing by the side of the room and briefly spoke with her.
Finally, the doctor asked to see the patches. I showed him my knees, ankles, arms, elbows, neck, and face. The doctor examined my knees, using a special device. He proceeded to check the patches on my arm and on my face. At first, it was very unsettling to be observed so closely, but I was desperate for any help. After a brief examination, he announced that I had vitiligo, and if I did not start treatment soon it would keep spreading.
I was given two ointments. One tube was for my legs and arms, and the other for my face. I was also directed to always wear sunscreen when I went outside. At first, the treatment did not work, and I thought about trashing the tubes. I was furious at the doctor for giving me this seeming placebo.
I reached a point where I had given up. I did not care anymore. I did not go to school, and I did not even look at the treatment.
During my next follow-up with Dr. Brixton, I could barely look at him. He sensed my frustration and anger. Maintaining his calm presence, he confidently stated that he would refund my money if after two months of continuous application the patches still grew. He was so confident that the treatment would work. I, however, was not convinced. I started using the creams regularly in an attempt to get the money.
But my vitiligo didn’t get worse, and some of my pale skin’s natural color returned..
All this time, I was looking for an antidote, a magic potion that would magically take vitiligo away. I could not accept these marks on my body and desperately tried to rip them off me. They were constant reminders that I was different from my classmates.
I was never going to be satisfied with any medicine’s effects until I accepted my vitiligo. In order to move forward, I would need to accept the fact that I am different from many of my peers.
Acceptance took several years.
It started with my parents throwing away my makeup. I slowly became accustomed to seeing the pale spots on my face in the mirror. My parents then bought me clothes that revealed some of my skin. Little by little, my parents did everything possible to allow others and myself to see my skin.
After high school, Dr. Brixton played a critical role in shaping my confidence. I began to shadow Dr. Brixton regularly. Although I was now habituated to others seeing my vitiligo, I still could not see myself in a respectable position. Dr. Brixton exposed me to patients and interactions I had never experienced before. Some of his patients even smiled at me. It was the first time I felt joy from being seen.
Thanks to Dr. Brixton’s glowing letter of recommendation and his invaluable shadowing experience, I was able to enroll at the University of Pennsylvania to pursue dermatology. I wanted to help others with skin disorders embrace their uniqueness.
Society often decides how people should look, act, and speak. However, my condition made me different. It made me stand out in a crowd. My vitiligo was not what society expected, but with time, accepted.
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