Sunday, August 24, 2014

The Face that went Viral

All my life I’ve had to swim upstream against the world constantly telling that I am not beautiful enough. I’m not beautiful enough to walk into a restaurant without disgust-filled, wide-eyed stares. I’m not beautiful enough to walk into a store without degrading marks from strangers…Strangers who forget I have eyes that can see their never ending gaze, and ears that can hear their hurtful words.

People often forget that I’m more than a girl with a facial difference. They forget I’m more than just my face - I’m more than just a birthmark. They forget I’m more than something to stare at with their wide eyes and open jaws. People forget that I have a name.

My goal is not to indorse or promote this Facebook group,
hence blurring their name, link, and logo.  My only goal is to
tell my story and respond to the situation.
My name is Crystal. I love to travel the world, capturing beautiful moments with my camera, pen, and journal, in hand.  I'm a baker (creme brûlée will be my next challenge!), a Jamba Juice addict, and future American Sign Language Interpreter.

I'm someone who has experienced tremendous joys, but also gut-wrenching sorrows. I’ve swam with dolphins, adventurously lived overseas, but I have also experienced the loss of my baby niece and have watched my mother take care of my father in his poor health.  I am more than the mark on my skin.

There is so much more depth to who I am than the appearance of my face…But people forget that. It’s a rarity when I go a day out in public without one person who stares at me, one person who makes a rude remark…treating me as though I am only half a person because of half my face.

In the past I’ve been told by (adult) strangers that I must have skin cancer, that there is something wrong with me, and that it’s not really a birthmark. Strangers have persisted that I should have surgery to “fix” my face, even after I tried to educate them by explaining that it’s not that simple – and I’m happy with who I am, how I am. Others have told me that I must be courageous, for if they were me – they’d never even leave their house. Sometimes I can’t even drive my car across town without nosey eyes invading my personal space with their prolonged, demeaning stares.

Just like millions of other people, I have a birthmark. Mine just happens to be on my face.

The birthmark I have is called a Port Wine Stain. Three of every 1,000 people are born with this kind of birthmark and they are most commonly found on the face and neck.

Instead of being the typical skin-deep birthmark, mine goes all the way to my brain as it is caused by extra blood vessels. If people look in my ears, down my throat, and in my nose, there is an obvious color difference. (Not that I usually go around asking people to look up my nose. Apparently that’s socially unacceptable…Even in California.) My left upper lip is also affected in color, and in size, as well as my left cheek…Even my bone structure is different on the side with the birthmark! (But it’s kind of cool…It’s similar to a mood ring as it changes colors with the temperatures of the day. People always known I’m cold before I even say a word!)

Doctors warned my parents that I could possibly have seizures within the first 24 hours of my life. If I did, I’d have them for the rest of my life. I’ve been incredibly blessed that this has not been an effect of my birthmark and I’ve never experienced a seizure. However, my birthmark does effect my teeth, gums, and my eye.  I'm also still at risk of later developing epilepsy later in my life so my doctors and I closely monitor the blood vessels around my brain with an MRI ever few years.

Due to the extra blood vessels, I have extra blood pressure in my eye causing an 80-year-old disease called glaucoma. From the age of 8-years-old, I’ve had to live with and accept fact that my left eye could possibly go blind one day in my distant future…as well as administer eye drops to my eye twice a day. Every few years I also have to have MRIs to make sure that none of the extra blood vessels have expanded to cause any damage to my brain.

How I normally look - with basic,
inexpensive, everyday makeup
from one of the best places
ever created: Target.  Often people
recommend that I switch makeup
brands because they, "hide things
like that better".  I don't feel the
need to hide who I am under expensive
brands of makeup that smoother my
skin.  I don't  feel the need to hide who I am
to make others more comfortable.  My
birthmark gives me a unique opportunity
to help educate others.  Why not use it?
About every 2-3 months I also have laser treatments on my birthmark. I’ve had close to 42 treatments throughout my lifetime. As a child I was allowed to sleep through them, but now I’m awake while the doctors “beam me up”.  (You can see some videos that have been taken at previous treatments if you click here.)

The laser’s job is basically to go in through my skin and to burst the excess blood vessels. For two week to a month my face is a darker color than usual. To give you an idea of the discoloration, the picture at the beginning of this blog that went viral was taken just 20 minutes after approximately 260 individual laser pulses and does not represent how I look on a normal basis.

Without the treatments, my birthmark is at risk of getting darker with age. Without the treatments, the blood vessels can grow, causing my skin to harden, become a pebble-stone-like texture, and bleed at random whenever it wants. After every treatment my birthmark is lightened, which I guess is a perk, but also not the reason I do them. The main reason I have the painful treatments is so I can be proactive in preventing future medical complications. Once the damage is done, there’s no undoing it…and I want to avoid that possible route if I can. (For those wondering, yes, these treatments hurt. The more pulses they do the more it hurts. Praise the Lord for the numbing cream I wear beforehand to help dull the painful shock of the laser!)

No matter how many treatments I have and even if my birthmark becomes undetectable to the naked eye, I will always have my birthmark.  My cheek will always look swollen and my features asymmetrical.  I will always have glaucoma in my left eye.  The extra blood vessels will still go deep into my brain, and I will still have to have touch-up treatments when/if it darkens as I age.

To add to my story...This week, my face went viral on Facebook.

My face going viral on Facebook was never a goal of mine, nor was it anything on my bucket list. This wasn't something I planned or decided to do, it was something that was decided without me - completely without my knowledge or consent.

To sum it up: A group on Facebook with nearly 2 million followers has been using a photo of mine without my knowledge or consent - a photo that I took (just a selfie!) barely 20 minutes after a painful laser treatment on my facial birthmark. In addition to using my photo, they added text that says, "1 Like = Beautiful" well as their personal logo. My name and permission were not included in this process, nor was my story, a link to my blog or website.

Since the original post, my photo has received over 1,800 comments, nearly 400 shares, and almost 25,000 likes.

No, I'm not kidding.

I didn't know about this until Monday afternoon, after arriving home from my math class. A friend sent me the link saying they saw my face in someone else's newsfeed and the photo already had over 14,000 likes within the first 8 hours of it being posted.

Boy, have I been in shock! All week I've been going through many emotions. I've been going back and forth between denial, anger, frustration, to "this can become something positive!"...just to name a few of my emotions and thoughts.

It angers me to know that someone took my situation for their personal gain. It angers me that they took a specific photo...a photo that shows how I look only 2 weeks out of every 2-3 months...without sharing the background and ongoing story with it. It angers me that they never even asked for my permission.

And overall?? The whole situation has hurt. It has made me feel icky all week. (I work with 4-year-olds...Icky is the best word I can think of right now.)

Those who know me know that I am 100% open about my facial difference. They know I blog about my story on a regular basis...the cause of my birthmark, what can happen if I don't have laser treatments, the struggles (emotionally, physically, and mentally), the stories in regards to specific situations/interactions I have with people, and about my treatments, etc.

This is how I look without makeup.  I am
constantly going out without applying
foundation and powder to my skin.  I've
always had the mindset of, "while makeup
is a nice luxury, I always want to be
comfortable in my own, natural, skin.  I
never want to feel as though I have to
wear makeup to feel beautiful."  Makeup can
be fun, but a little foundation on my cheeks can't be,
and isn't, the foundation of my beauty.
I don't mind my story getting out there, as that's actually a part of my life's goal...But what I don't want?? I don't want my photo to go viral without the story being told. I want people to know my story - but not with the purpose of gaining sympathy. I want my story to be known in attempts of educating other people, and in hopes of motivating a cultural change in how "different" people are treated.

I've taken my story and blogged about it openly. Trying to take some recent negative situations and create something positive out of them, I do sensitivity trainings in hospitals.  I also talk to different classrooms at a local elementary school in hopes of teaching children how to be curious in a kind way and to allow them to ask their questions they may have.  (You can read more in detail about my hospital situations here and more in detail about speaking to the children at schools here.)  One day I hope to do a TED Talk as well as be a speaker for Women of Faith. I even have a few book ideas based around my difference and I’m hoping a publishing company will invest an interest one day in the future. (I've always been a big dreamer!)

But this whole thing of my face going viral on FB without consent??...It makes me feel awful on so many levels.

A part of me feels as though, while some of the "likes" are probably genuine in their thoughts of my beauty. But a part of me also feels as though they're 25,000 sympathy likes...and I've never been one who needs pity.

I don't need 25,000 strangers to validate who I am, or my beauty. I don't need help from the Internet and strangers behind their screens to tell me that I'm beautiful. Just because I have a facial difference doesn't automatically mean that I lack confidence, or think that I'm "ugly". In fact, while I've had my up-and-down days, that's never been a big struggle of mine. If I don't need to be validated by strangers, then why does the world feel that it needs to do that instead??

I've always known I'm slightly physically different, but until Monday, I never realized I was different enough to inspire such a viral meme.

Many friends of mine have recommended that I shouldn't read the 1,800+ comments that have been left in reaction to my photo. However, while I appreciate the advice, strangers comment on my birthmark all the time. It's a daily thing to have a stranger approach me in a store, or to stare at me across the room of a restaurant. What's the difference between listening to constant remarks, verses reading them?? That being said - I spent over an hour going through every comment and every share that was posted.

Going into it, I knew I had to read them with a dose of humor…and I’ve had a LOT of laughs while reading some of the responses. The majority of the comments have surprisingly been positive while others caused laughter as I knew I couldn't take them too seriously.

The names of those who left the comments aren't important.  Some of these comments are ones I've heard before, while many are ones that are new.  They've ranged from people telling me that they wished they were purple as well and there was one who wrote a post asking God to remove the "evil" from my face...followed by an "lol" (which this one is ironic, as I've never prayed for God to remove my birthmark).  Some stated that they are glad that we don't get into heaven by looks alone, and someone even posted that they wonder how old I am as the photo has been on there for years...even though I only took the photo within the last year or two and the shared date clearly marks this last Monday.  They've also said that my birthmark will fade with age (it won't), that a doctor can help me, and people have given makeup advice.  But most have said I'm beautiful, they're jealous of my unique color scheme, and that it's the inside that counts.  (Although, I have to add - it's interesting as to how many people have said, "God doesn't create junk"...Am wondering where that 'trendy' one even originated from, and why.)

I'm more than these "likes", "shares", and comments.  My worth, story, beauty, and value are so much deeper than what happens in the digital world - and I firmly believe that for everyone in the world.  The amounts of "likes" we have on Facebook or the amount of followers we have on Twitter do not define us.  We're all different in our own ways - whether our differences are visible or not.  But more than that?  We're all beautiful and special in our own ways.  We are more than the pixels that people see on their screens, and we can't allow others to make us believe otherwise.  We are all fantastic and brilliantly created just the way we are meant to be!!

I hope to have chances to be heard as I try to raise my own voice, but also represent the voices of many others who endure similar, unnecessary, experiences...people who may not have the confidence or ability to speak up. Some of my experiences are painful and they often sting - just like this week’s. However, even the most ugly and hurtful situations can develop into the most beautiful and unique story.
My response

Often I feel as though God is telling me, “I can take these ugly experiences and help them become beautiful if you allow me to use you. You have so much potential as I have much bigger plans for your life than what you could ever even imagine. There is more beauty in your life than you’ll ever know.” (Like my favorite verse, Jeremiah 29:11.)

Sure, having a birthmark that covers half my face can be a challenge. I have my good days, and I have days where I sometimes struggle…whether it is with strangers or with personal, internal, battles. Either way – I feel it’s an extraordinary opportunity to reach out to others in hopes of educating them, possibly making a small difference in the world…and I think that, alone, is a beautiful thing. Why not embrace it?

But hey...The positive part of this whole crazy experience?  My dating pool has probably grown from a small fishbowl to an ocean full of fish.

The Travelin' and Facebook Viral Chick,

PS: For those interested, this is the original entry where in which photo came from.  And if you'd like to hear about my mother's journey of having a child with a physical difference, check out her brilliantly written entry, The Stain.

******UPDATE: Since posting this blog 2 weeks ago, I've come to learn that my image has been shared in at least 5 different Facebook times, going viral at least 16 times - that I know of. One group has 30 MILLION followers.  In that specific group, my photo has over 256,000 "likes", 1,000 shares, and over 13,000 comments.  This has not been a one time thing...And it inspires me even more to get my story out there.*********