When A Child Who Was Supposed To Die Grows Up

I wore bandages from head to toe until I was 24.
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“God, you look like you were attacked by a gorilla. What happened to you?”

I turned my head to regard the lady sitting next to me in the waiting room of a vet’s office in Santa Fe, New Mexico. I could have told her how rude she was to ask me this. I could have gotten indignant and refused to respond. I could have told her the truth, but I didn’t. Instead, I gave the explanation I give when people look at my scars in disgust and abject antipathy, the looks on their faces saying, “Wow, glad I’m not her.”

“Motor cycle accident.” I responded without skipping a beat.

I felt her eyes scan my legs again. I wore shorts that day, and the fading scars that took up my knees were on display. Not that I am ashamed.

“Well, at least your face was spared.” She told me, turning back to check emails on her phone.

I’m not going to lie and say that living with a terminal illness has granted me some kind of enlightenment, enlightenment that makes these things hurt less. It hurt. But I am not ashamed. And I will tell you why.

When I was born, the doctors did not know why I blistered.

Blistering can happen with newborns, but not like mine. My little hand was one big blister, and my mouth lacked any skin at all. This was not normal. Neither was my diagnosis. I have Epidermolysis Bullosa, also known as Butterfly Skin. My body does not produce a collagen that anchors my skin to my body, and I have the second worse sub-type, Recessive Dystrophic. Though I am a mild case, it is painful, and it has a tendency to get worse instead of better. That is why the doctors informed my family that I won’t be around long. Late teens, early twenties, thirty and I’m an old woman. I wore bandages from head to toe until I was fourteen, although most of my friends with my condition can never remove their bandages unless it is for a painful bath.

I missed my first week of eighth grade because I had to fly to Denver Children’s Hospital, one of the only hospitals in the country with doctors specializing in EB. My throat had closed due to the constriction of scar tissue, and needed to be reopened. I remember taking advantage of the never-ending popsicles when I woke up, and the realization that I was stronger than I thought I was.

I am proud of my scars because not many people can visibly display their strength on their bodies like I can.

Every little dot of red is a moment when I have survived, instead of succumbed to the statistics set upon me the moment I was diagnosed.

I am proud of my scars, because I studied abroad independently for weeks, and now I am applying to college.

I am proud of my scars because they’re a reminder ― a reminder that I will and have grown up.

I am not ashamed. And I will never be.

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