A Walking Storybook

I was born with a craniofacial disease called Stickler Syndrome, which I inherited from my mother. Oddly, my mother does not know where she got our commonly shared disease from. This disease has caused me to be severely nearsighted and to have bad hearing, a short nose, and a slightly flat face. It also gave me some slight symptoms of scoliosis at a young age.

As a kid, I’ve had several consultations about getting reconstructive surgery on my nose. I have had hearing aids, and I have incredibly thick glasses. This disease has also taken a huge toll on my self-esteem, as I’ve been bullied, not only by kids, but by adults, as well. I remember one time being at a family friend’s house and hearing a guest say, “That’s one ugly child.” Kids would refer to me as “four eyes” and “ugly.”

In elementary school, I had a vision teacher I’d meet with, and I’d receive tools like a portable CCTV, iPad, and magnifying glasses to better the way I see in school. The vision teacher stayed with me until eighth grade, when I felt like I no longer needed them anymore; they were extremely distracting because they’d constantly pull me out of class.

I started to feel so bad about my appearance and the fact that I needed a “vision teacher” that I stopped caring about how I looked. I’d go to school carelessly. My hair would be messy, my lips were chapped, my breath was smelly, and my skin was hard and ashy because I didn’t take care of myself. The only thing that looked decent were my clothes because my mom ironed them until I got a certain age and was forced to do it myself.

I also stopped using my CCTV, iPad, and magnifying glasses, to avoid being seen. On top of that, I became very hostile towards my classmates and teachers, and would get in trouble frequently for my attitude. I became very tomboyish because I felt like I wasn’t pretty enough to do anything girly, like paint my nails and put on dresses.

At the age of ten, I endured my first surgery to fix the bridge of my nose so that my glasses would stop sliding off my face. As I quickly recovered, I noticed that I was having frequent daily nose bleeds. The surgeon who operated on me said it was drainage, but little did I know, my surgery had been botched.

They used a donor bone to reconstruct my nose, but there was a problem. There was no blood going through my nose to support that bone, so it died. I spent almost three whole years with these everyday nose bleeds, and my confidence continued to plummet. Adding to that, there was a disgusting odor coming out of my nose.

I suddenly became very socially awkward, because who wants to be friends with the girl with thick glasses and a bloody nose? At the age of 13, I underwent my second surgery to remove the bone in my nose. Long story short, it was a successful surgery and I quickly recovered. I started to look at myself in the mirror differently. I saw a change and started to explore my looks. The nosebleeds were gone and I wasn’t bullied as much besides a few snide comments here and there.

At the age of 14, I had the same reconstructive surgery as I had at age 10, except instead of a donor bone, they used some cartilage from my rib. They put bandages on my nose and stitches in my nose and on my forehead. They also glued the incision on my rib shut.

This was when the transformation truly happened. My nose wasn’t flat anymore, the nosebleeds were completely gone, and all I had left was a beautiful scar on my ribcage. The funny thing is, this all happened in 2018, and I am now a 15-year-old sophomore and honors student in high school. I am still judged a lot for the way I look when I walk through the halls, but there’s a difference: I don’t care about what they say.

I can finally say I feel more confident in myself, not because of the surgeries I’ve had, not because of the clothes on my back, and not because of the people who love and adore me—but because of the uniqueness I have discovered in myself. My doll-like eyes have seen more than any teen I know. My nose has been under the knife more than anyone I know, and I’m still not completely done with the process yet. My mouth has had more stitches from all the surgeries than ever.

My point is, I am a walking storybook. Every unique physical attribute about me has a story behind it. I hope in the future to become a craniofacial surgeon to inspire, learn about, and help people just like me. I’ve had endless support from all of my friends and family, whom I love dearly. Adding to that, I have explored my feminine side, and I feel confident enough to embrace it.

If I could give any craniofacial kid advice, it would be to embrace how you look. There’s such a unique story to tell behind us all that the people need to hear.

You are not the disease you suffer from. People will tell you hurtful things and judge you constantly, but people are obstacles put in this world to hold us down—if you let them.

I may be young and my story incomplete, but my goal in life is to help people, and there’s nothing more helpful to people than to inspire them to embrace themselves and not worry about society’s standards. Rules are meant to be broken, after all.

Your friend,
Jessyca