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"...as 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,

Crystal


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.*********

Dramatic Nerves

Have you ever had plans to travel somewhere, but the night before your big trip, you can't sleep?  You can't sleep possibly because you're extremely excited, stressed because there are still a million things to do before you leave, or because you are nervous about your upcoming adventure...Or you have a mixture of all three options!

That's pretty much how I feel tonight.  Yet, I'm not traveling on a big trip.

Tomorrow afternoon is the day when I'll be going to the hospital to share my story their lab department employees.  I'll be able to share my story in regards to my birthmark while doing a little bit of "sensitivity training".

I'm really excited to have such a unique opportunity to educate others, and to hopefully allow them to have a better understanding of what it's like to be in my shoes - or in the shoes of anyone with a visible, physical, difference.  But I'm also incredibly nervous.

I feel as though I've done a lot of public speaking for my age.  I've spoken at churches to raise money for mission trips, to share about missions, I've taken a speech class, and I've shared about my birthmark to K-6th graders.

I always get a little nervous every time I speak somewhere - but not quite like this.

All week I've been trying to figure out the perfect thing to say tomorrow afternoon.  Or, technically, this afternoon since it is currently 2 in the morning.  My "lecture" of sorts will be taking place in a little less than 11 hours, and yet it was only tonight when I finally figured out what exactly I want to say...And I know I still need to make some changes in the morning.

So why am I nervous??

I think I kind of freaked myself out earlier this week.


While thinking about my upcoming lecture at the hospital, I had a big realization.  Yes, I am use to speaking in public and I love doing that.  Yeah, I blog and Facebook about my birthmark experiences on a daily basis.  I even share with people I meet when the opportunity comes up!

When I speak tomorrow, though, some of the people who have said hurtful things and who have victimized me will be there.

(Let me clarify - I really dislike using the word "victimized" in these situations, yet it's the best I can come up with.  I don't like to think of myself as a victim, but in a sense, I guess that's kind of what I am in some situations due to the way others treat me.)

Those who have said hurtful things in the recent past will be there.

The good thing is, I'm not sure I'll be able to recognize those who have treated me in an ill manner in the past.  I don't generally focus on memorizing their faces and names, just the stories.

And although this whole sensitivity lecture is a chance to have my story told, to give them a better understanding of what is acceptable and what is not acceptable, I don't want to come across as though I'm intentionally attacking those who have attacked me.  I don't want to come across as though I'm dwelling in the past, or that I'm even angry - because I'm not.  I want to be sensitive, yet honest, in my sensitivity training.  I want them to know that while the past situations did take place, my only desire is to use the past to enhance the future for the better as I'm focused on a bigger, brighter, future.

When I first volunteered to do this, I really didn't think it would affect my nerves like this - but it has.

Speaking to children is a lot easier for me.  When I speak to the children, I feel like I'm working with a fresh slate.  With a new and fresh  attitude that is easier to mold in comparison to adults who have already had a lifetime of molding.  When I blog about my stories, even if those who have treated me a certain way read what I have to say, I don't have to look them in the eyes.  I only look at a screen while I type my message.

For years I've been accepting what people say to me without really responding, without telling them the affects of their words and hurtful stares.  I usually take what people say while later laughing about it, and/or making it into a joke...basically as a coping mechanism, and because some situations really are hilarious.

But now it's time to stand up.  It's time to stop just simply coping!  It's time to stand up for myself and for the others who are affected by the things people say and by the way they're treated - just because they have simple physical difference.  It's time to at least attempt to make a small difference, even if that means only one person listens to what I have to say and takes something away from my few words.


People need to understand that their words have an affect.  Their words have consequences, even ones that they can't alway see.  They can make an impact in a person's life - even if they are a strangers.  They can build someone up, or even tear someone down.

I'm ready to stop coping.  I'm ready for there to be a change.  But more importantly, I'm finally ready to help create the desired change.  (And actually, it wasn't until recent months that I realized that I even hold an ounce of power to make a change!)

Prayers are very much appreciated as I go to speak to the hospital staff in the afternoon.  I'm sure that my nerves are just being dramatic and I'm sure I'll be okay once I start speaking - Starbucks or Jamba Juice in hand!  Please pray for my nerves, open and listening ears, for me to have the right words to say, and for a comfortable setting and atmosphere - for both me and for those listening.

Thank you!  Thank you for reading this, for traveling on this journey with me, and for praying.  You have no idea how much I value the impact you have in my life.

The Travelin' Chick,
Crystal

No One Compares to You

A cool thing happened today as I was leaving work.

As I was walking out of the office doors towards my car, a woman stopped to talk to me.  I've only met the lady once - several months ago - and have seen her on and off throughout the last semester or two.  (Not that it matters for this blog update, but I don't even know her name.  I just know we work at the same place but that we've also never really held a discussion before.)

When she stopped me, she unexpectedly told me something along the lines of, "I just wanted to let you know - you inspire me.  I know what you do…I know you go to the different classrooms to tell them about your birthmark.  You see...I have a bunch of scars that make me extremely self-conscious - and I absolutely dislike wearing short sleeve shirts because of how self-conscious they make me.  I'm being tested to see if I have lupus…which I don't think I have...but my doctors are totally clueless as to why I scar so easily.  I get so self conscious over my scars, but then I heard about you and your 'imperfection' and how you handle it…teaching others and being confident with it…persevering.  It has really helped and inspired me."

Oh...and the lady?  Today she was wearing a tank top.

You never know how others are being affected by you and your story.  You never know who is watching, who is listening.

I know that I am often able to help teach children about my birthmark.  Nearly every day I walk away from my work with a cute kid quote about a question they ask me about it (like my favorite, "did you get it from eating a hamburger?"), or a story about how I was able to help them understand my birthmark.

I know the children are listening.   I know they're watching.  But I realized today that I forgot about the adults around me.  The grownups - my peers.

Truthfully, I often forget I am different than everyone else on the outside - until someone points it out…and normally it's not pointed out in a positive way.  I forget that I have a unique story that most don't get to tell or experience.

To me, my story is normal.  My story is boring.  My story is my daily life.  It's the story I grew up with.  It's the only story I've experienced and fully know.

However, today's positive moment reminded me that in some ways, if I embrace it in the right way, if I don't let it bring me down or discourage me,  I can, I will, and I do have a powerful and slightly incredible story…and an extraordinary way to reach, educate, and connect with other people.

Today  I was reminded that to other, my story is not boring.  To others my story can be seen as interesting and mysterious.  It can be seen as an encouragement.

We all have our unique situations - the good ones, the bad, and those that are in-between.

How are you going to allow these situations to affect your life?  I hope you'll let them affect you for the positive.  You never know the impact you can make if you embrace your situations, persevere, and find the positive.  You never know who is watching…who is listening.  Even if you make a difference in one person's life…It's all worth it, right??  You never know the domino affect and legacy your story may have, just by changing the life of one other person.

I don't know how the lady knows my story.  We barely even know each other.  I don't even know her name.

I don't know how she knows that I sometimes go to different classrooms to teach the children about my facial difference…but I know that somehow, she does know.  I know that at some point she's listened.  She's watched.

Please note, I am not posting today's story in attempts of bragging.  That's not my desire at all.

If you're anything like me - you have a tendency to downplay how special you are.  You forget or ignore how valuable you are as a person.  You ignore your true beautiful worth, comparing yourselves to others with a measuring stick while thinking, "Oh wow.  That other person has done so much with their life…What can I show for mine??  I'll never be as talented or as influential as them.  I'll never be able to be like them."  (I have a horrible habit of doing this.)

I only want to encourage you - no matter your story…Your story is special.  Your story is unique.  It is extraordinary…And more importantly: You are extraordinary. You are special and unique.  You have value…and no one compares to you.

The Travelin' Chick,
Crystal

PS: If you want to read more about what I do when I visit classrooms to talk about my birthmark, and my goal in doing so, please read Breaking Down the Box.