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.

People Talk About Their Scars, Birthmarks, Skin Conditions, And More
Brian(01 of 03)
“My vitiligo first showed up when I was 18 or 19. I felt really unattractive for a long time. I used makeup on it for a while, and then I moved to New York, and the stress of all that made it spread. I got to a point where I realized I just couldn’t wear makeup anymore, so I stopped.

“Now I’m a bartender, so I’m in the public eye all the time. I get people asking me about it, and being like, ‘That’s so cool!’ It can be frustrating. It’s just my body; I can’t do anything about it. Same with dating — I’ve gotten people who were like, ‘That’s kind of hot.’ I don’t want to be a fetish for someone. But it’s different when the other person has it. Recently, a woman at my job came up to me and was like, ‘Hey, I have vitiligo too, and I think it’s so great that you’re rocking short sleeves and everything.’ That felt good! The feeling was mutual. It felt like community, not novelty.

“But then, a different woman came up to me in line in the grocery store and was like, ‘Oh my god, have you seen that model who has what you have? I just wish there were more models that looked like you when I was a kid, because I had a friend with what you have.’ I mean, what I have is called vitiligo. It felt like she was trying to express how cool she was with it, when actually, why shouldn’t you be cool with it?

“Vitiligo doesn’t make me who I am; my experiences in life have done that. But I’ve embraced it — there’s nothing that I can or should do about it. I don’t have to explain myself or apologize. And I wouldn’t have it any other way.”
(credit: Jon Premosch / BuzzFeed)
Amada(02 of 03)
“My freckles made me really different when I was growing up. Sometimes kids would make fun of me, or point them out, or question me. My mom has similar freckles, and I know she struggled a lot with it too, in Mexico. But New Yorkers, I think, have seen a lot more different kinds of people. So now, people tend to be a lot more accepting, and will want to talk, and compliment me on them.

“That said, it hurts when I read people saying things like, ‘I love all my flaws, even my freckles.’ I don’t find my freckles to be a flaw; I like to play them up. There’s plenty of makeup marketed to ‘Even out your skin tone!’ Why would I want to do that? They’re such a great part of me.

“In my case, I guess beauty is very much in the eye of the beholder. But I’ve finally realized the only beholder that matters is myself.”
(credit: Jon Premosch / BuzzFeed)
Jennifer(03 of 03)
“I had open-heart surgery when I was a baby, and have had a scar on my chest ever since. I’ve never worn a top like this before. Putting it on and looking in the mirror today, I got kind of emotional. I always knew the scar was there, but I wasn’t ready for other people to see it.

“It’s funny how something so small can affect how you see yourself in such a big way. Now, I’m proud of my scar. It makes me feel like a warrior. If I can make it through something like open-heart surgery, no words or strange looks from other people can stop me. I’m used to hiding, but this has been so liberating. I feel so free, and so completely like me.”
(credit: Jon Premosch / BuzzFeed)

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