Collapsing on my bed after a long day of classes, I kicked my shoes off and opened my computer. Once my screen lit up, I signed onto Facebook for a short, mental break. I had my usual 15 notifications, but one from a friend really caught my eye: “I saw your picture in my newsfeed today.”
My picture was in her newsfeed? Confused, I clicked on the attached link… and there I was… along with a stranger’s logo and three simple words: “one like = beautiful.”
I was going viral… to over 30 million people around the world. One share alone has over 256,000 “likes.”
You and I are total strangers who live thousands of miles away from one another, yet our lives have deeply intertwined. Like millions around the world, you don’t know my name, but if you saw my face, if you saw that meme, you would recognize me because two years ago, you created that meme.
Like most people, I occasionally post a selfie online. However, my face doesn’t look like most people’s. I was born with a port wine stain birthmark that covers a good part of my face. And the selfie that was going viral? It was taken just 20 minutes after a laser treatment, which is used to prevent future medical complications, as my birthmark is at risk of growing. (And I blog and speak about my condition, unique experiences and perspective.)
Growing up with a physical difference, I’m accustomed to people staring and making awkward comments as I walk by. It wasn’t until I was 18 that I realized these experiences, which are my normal, aren’t most people’s normal. In fact, most days I forgot about my birthmark. For example: When I was 16 I dressed up as a biker for Halloween and went to a trunk-or-treat with my friends. Several people freaked out, asking me if I fell off my motorcycle, afraid I was hurt. I was confused for an hour… and then it hit me, and I just laughed.
Most people don’t get gawked at in public, and they aren’t told they’re “contagious” or that they are “brave” for leaving their house. But I do. And it happens often. Yet, even then, I still didn’t realize how different I must look… but then you turned me into a meme.
Knowing I hear comments on a regular basis, I stared at my non-blinking, meme-ified selfie and thought, “Why not read a few comments? What’s the difference from reading them than hearing them?”
So I spent a few hours and read a few comments.
Or… 30,000 of them.
As of 730 days ago, a day hasn’t gone by where I have forgotten about my unique appearance.
They say pictures are worth a thousand words. When I went viral, my name, story and my words were missing. Instead, complete strangers were making up their own 1,000 fictional words to go with it.
One man accused me of drowning kittens, and many assumed I asked you to post the image, thinking I didn’t have any confidence in myself. Several pleaded to get me connected with a good plastic surgeon so they could “fix that,” some flat out called me ugly and some wrote, “She’s beautiful, but would be even more beautiful if that weren’t so prominently placed.” A few thought it was just face paint on my cheek, and even fewer knew it for what it was: a birthmark.
While it was my own choice to read the comments, it turns out, there is a difference between reading 30,000 comments within a few hours versus hearing one comment a day. In the midst of this fiasco, one thing stood out to me: both my condition and story were completely misunderstood.
I was angry with you for the longest time. For nearly 730 days, I resented you. But you don’t deserve a 731st day with me. This experience has fueled my desire to be a speaker and writer, but that’s where you’re influence in my life stops.
For the last two years, I’ve been taking back my selfie. I’ve been taking back my story. I know I am more than some meme that mimics one stranger’s simple perception of my image. I am so much more than thousands of fictional words your followers left next to it on some social media site.
My name is Crystal. I’m the person in this meme. However, in this edition of it, I’ve made some changes. It’s the same meme that went viral two years ago but with a twist. While there is more to my story and more to who I am, thanks to the help of my friends, this image has been created with 10 words that describe who I am.
I’m a writer and a speaker. I’m a friend and a God-sized dreamer. I am creative, confidant, a writer full of wit, and I am talented. I am loved by many — and just like you, I am human. Best of all? I know I’m wonderfully and beautifully made.
It’s time for people to hear my real story, to read the true message of my story and my image. I’m taking back my selfie, owning that meme… taking it back one word, one blog entry and one article at a time.
I’m proud of who I am, as I am. I like the way I look — and I’ve never needed thousands of strangers or the internet to validate my beauty or confidence. After all, we all have differences — I just wear one of mine on the outside. And it’s my goal to make a difference with my difference.
The images surrounding mine on your page were other memes you created: kids with cancer, premature babies and people with missing limbs. You’ve been using images of people (without their consent) to pull at the heartstrings of people, to pull them towards your page. Simply put, that’s not cool. You alone have almost 28 million Facebook followers. Your audience is large. Your influence is strong. Please use it with kindness and wisdom.
Before you take someone else’s photo to make your next meme, remember that image is much more than pixels on a screen. They are writers, singers, travelers, friends, sons and daughters. They are dreamers who reach for the stars and dare to change the world. They too are a human — and they are loved.
Amberly is also a speaker and writer. In fact, she's one of my
favorite speakers! Invite her to speak, and check out her blog! She's pretty amazing and has a great sense
of humor!
"I've been working on my book, but so far I still only have one chapter written...And I've noticed my best writing comes at night," I told my friend and mentor, Amberly. Responding, she told me, "Some people say that we write best at night, because after a long day, that's when we let our guard down. That's when we're most vulnerable."
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I've been trying to write my book (a memoir) for a few months now, since about May. In August, I celebrated the completion of one chapter. (Give or take some later modifications as the book develops.) But since then? I've been stuck. Writer's block and I have been hanging out daily, becoming instant best friends.
Here's the thing...I love how my first chapter has turned out. But it was a process. A vulnerable process.
Typically, being open, raw, and vulnerable has come easy to me when writing my blog. Actually, I usually write when I feel the most emotionally raw. I've never thought twice about being vulnerable with you, my readers. But now I'm writing a book. While I do go deep on some of my blog entries, I feel like they're way more surface in comparison of the book I'm working on. With my book...With the one chapter I've written...I've dived down deep, scuba diving into the depths of my story, exploring areas I didn't know were there.
In my book, I'm wanting to share both the highs and lows of my story with you - which is pretty much the equivalent of giving you a key to my house...A key that lets you into my life, allowing you to watch the joyous moments of celebration, as well as very personal, hard moments, that found the ugly cry as a companion. In my book, you'll see moments with incredible encouragement and triumph, but also the moments where I just wanted hide under a rock, throw in the towel, and quit.
Once my first chapter was written, I found myself writing to my friend, "I have to say...Writing this chapter on this one subject, I learned a LOT about my own situation and a LOT about myself. As I was writing it, I caught myself thinking a few times, 'This is not what I planned to write in this chapter - at all. This is a bit more honest than I planned to be - with my readers, but more importantly, with myself!!'"
Being vulnerable...Yikes. What a scary concept.
I'm sure I'm totally backwards...But I'm not afraid of being vulnerable with my readers, I'm afraid of being vulnerable with myself. I'm afraid the potential discomfort I'll experience as I dive down deep, continuing to learn important lessons from my own story.
Something you may not know about me: I've not always had a healthy relationship with my emotions. Actually, I use to be terrible with them. If there were a marathon where people run from their emotions, I would have won first place. Hands. Down. I've been known to burry emotions and struggles down deep, moving on before I should.
The older I get, the better I am at handling my emotions. It's still not perfect, but the relationship with them is healthier. (Writing has been a huge help in recent years. In the last few years, I've also been blessed with some beautiful friendships with some amazing people, which is something that I once majorly lacked.)
And here's the thing...I'm afraid of being vulnerable with myself. I'm afraid of the lessons I still need to learn, the lessons that I'll learn as I write my story in an in-depth level. I'm afraid of what I may dig up...the possible emotions I've buried, the emotions I'll have to finally handle. I'm afraid of being honest with myself.
Yet, in the midst of this...I know that sharing my story and encouraging others is something God has called me to do - no question. No matter if I am published by a traditional publisher, or go down the self-publishing route, this is the calling I'm meant to follow. This book is meant to be written. Maybe it'll one day change and encourage the life of a future reader, maybe not. But one thing I know for certain? Readers or no readers - pen in hand, it'll change my life...my life as the author.
The lessons I have yet to learn may be scary, but I know they'll stretch and mold me into a better person. I know they are lessons that need to be learned.
I have to stop running from my calling, I have to stop making up excuses. I have to dare to be brave, and honest...I have to dare to be vulnerable.
Can I just say it's tricky and confusing sometimes to have both a hurt ankle in a cast/boot AND a purplish facial birthmark??
Let me explain.
Currently I'm in a walking boot and have been on and off crutches for a few months. Last month I was leading a seminar at a youth camp and at some point during camp a junior high student asked me, "What happened to you??" I told him, "Oh, I just hurt my ankle. I kind of broke it a little." The kid looked SO confused...And then I realized he was asking about my face.
For a few moments I totally forgot about my birthmark.
I find the story to be funny, but truthfully: it was a good feeling to realize I had forgotten about it.
A couple of weeks before this took place, someone else asked me the same question. That time I automatically assumed they were talking about my face, I told them, "Oh, it's just a birthmark." The person looked at me with, yet another, scrunched up forehead and responded, "No...I mean, what happened to your ankle??"
In the past I often forgot about my birthmark until someone reminded me with their stares or comments, or unless I looked into the mirror and saw it. I rarely put much thought into my difference until I am put into situations that give me no choice but to think about it. Even then I'd laugh through many situations, tell the story a few times, possibly blog about it, and then forget. However, since my picture went viral unintentionally with the text "1 like = beautiful", I have constantly remembered my birthmark. It has been impossible to forget it during the last 6 months or so.
I don't know why my picture going viral has affected me the way it has, affecting me more than the almost-daily experiences I have in my real life, versus my digital one. I'm still trying to figure that out. Maybe it's because for once, I actually and literally saw myself through someone else's eyes through a form of a meme - or, at least, my interpretation of how I thought the meme creator saw me...Not to mention the 20,000+ comments from strangers that I read from around the world. I'm guessing that seeing myself through 20,000+ eyes in one go added up and impacted me more than I anticipated, even if I pretended that it didn't. Until this had happened I never realized how different I must truly look to the outside world.
You see, I've always known I was different - but for the first time I felt different...and it didn't feel very good. For the first time I felt truly uncomfortable in my own skin, catching myself looking down towards the ground more than I care to admit in response to my temporarily depleted source of confidence.
Forgetting about my facial difference was like a fresh breath of air. It was nice to forget about my birthmark because that made me realize that I'm finally healing from the whole ordeal and from the painful emotions I've gone through since. Although 6 months have passed, I can't deny that I'm still affected.
I still hurt, but the pain isn't as sharp as it once was. I still have things I need to work through, but I've been making progress. Through this experience, I've questioned many things I've never questioned before - some things that are good to question, others are questions I've never wanted to ask and never thought I would...yet, slowly but surely, I'm finding and discovering much needed answers. I've been broken, but with the help of friends, family, and God, I'm being put back together again.
Last week I read a quote on Pinterest that is currently on my top 10 of my favorite quotes:
"It's okay to be a glow stick. Sometimes we need to break before we shine." - Author Unknown
In the midst of this breaking experience I received many encouraging emails and comments. One that has really stuck with me. I can't remember who said it to me, but paraphrasing what they said, they basically told me that it's okay to be broken. When we're broken, God's light often shows through the cracks even brighter than before, and that's a beautiful thing.
I've been broken. Let's face it - I was shattered, crying the "ugly cry" more times in 6 months than I had cried in all my life...But you know what?? God is good. God is a healer. He has given and shown me a source of strength I never knew I had. God has even provided more encouragement support than I could have ever anticipated from family, friends, and strangers around the world (seriously, I've been in awe).
God has continuously reminded me of my worth, even when my human perception of that hasn't been clear on what my worth is in those darkest of moments. He even gave my friend a song for me, helping me see myself through my Father's eyes again when my vision went blurry and I struggled to only see myself through the eyes of thousands of strangers who don't even know me. (I'm sure that's one of my most played iTune tracks as of yet!)
But on top of all that?? God has also provided opportunities to tell my story and it's evident that He has even more up His sleeve - that this is just the beginning!! I've had chances to speak at a youth camp (which was one of my God-sized dreams!), write for magazines, and I'm even headed to Chicago in April in hopes of using my story for His glory. He's been able to use my story of brokenness to shine through to others to remind them of their true worth, their true value.
I realize I wrote my initial entry about the incident months ago, and that was basically all I've published here on my blog since late August. Some of you may be thinking, "It's about time you wrote an update on this situation here on your blog!" During the last several months I tried to write something, but I couldn't. I can't even tell you how many drafts I started but didn't get past a paragraph, let along a sentence or two.
Truthfully, I actually had many moments where I came extremely close to deleting my blog and all forms of social media I had ever signed up for, but didn't thanks to the encouragement of some mentors. I also realized that if I were to do that, my main platform in which I could tell my story would be gone. Not only that, but if I deleted my blog, Facebook, and Twitter, the situation and what happened wouldn't disappear. I would only be ignoring and hiding from it, and nothing good would ever come from that.
Looking back, I think I just needed some distance from the situation before I publicly tackled it more in-depth, beyond the first entry and other entries that touched on my thankfulness for the support people have offered and given. I needed distance because I needed to have a better glimpse at the puzzle God was putting together, to see a small glimpse of the beauty He had in store...To see how He would shine through the brokenness. At this point I know I've only seen a glimpse of the picture He's putting together with the puzzle pieces, I just have no idea how He plans to put it together or what the full timeline looks like. And that's okay.
Being broken usually isn't the most desired experience. It's hard. It's messy. It typically involves a lot of pain and tears. Sometimes, though, when you gain some distance from a situation and when you stay willing to be used (even in the moments when you feel too broken to be used), being broken can be one of the most beautiful experiences with the most beautiful, unexpected, results.
And you know what? Now that I've gained some distance and have looked down the road, I realize that although I've had many opportunities, in the midst of all the chaos and doubt, I never desired to be in anyone else. I never thought, "If only I had a 'normal' face, life would be better!!" I never regretted God's allowance of my unique feature. I may have gone through some great times of darkness and questioning, but God never let me go there. I never doubted the way that I was born, I never doubted that this is who I am suppose to be...and that's pretty cool.
The exciting part of it all?? I know I have only seen a glimpse of what God has in store. Deep down, I know there are more beautiful things to come, but all I really want to do is shine for Him.
Even through the pain, I'm thankful that he has picked me to play a part in this story. I'm thankful for the Light that helps me shine.
The Broken, Yet Brightly Shining, Travelin' Chick,
Crystal
PS: Just to keep you, my readers, on your toes...There are some behind the scenes type of things that have been playing out. I mean, majorly unexpected things. I'm hoping this will/can be something that I can write about soon, but I'm going to wait until things are more confirmed. Please be in prayer for the story that continues to unfold. Recently I was talking to someone about what may be in development and they told me, "Wow. Here I was thinking that you were at the end of this story in your life, but really, it sounds like you're possibly in the middle!" And if it turns out that I am in the middle?? It will be an incredibly beautiful plot twist I can't wait to share with you all.
While I know most people are posting what they're most thankful for on Facebook, last year I enjoyed writing my list here on my blog - including photos to go with my list. I think I'm going to make it a personal tradition to blog a summarized list every year.
So...What am I thankful for this year??
The ability to travel. Everyone knows I can't sit still for long. This year I travelled to: Alaska, Seattle, Portland, Canada, and Nashville. It was my first year in a long time to not hop on a plane to go overseas, but that's okay. I really enjoyed exploring all the sites and these locations had to offer - and had a GREAT time while visiting each of them!
My job. I love my job, and many people can't say that. I'm thankful that I was able to move up from being a noontime assistant ("yard duty teacher") to a substitute teacher's aid. But even in being a substitute teacher's aid, I've been placed at a school long-term...and I love it there. The staff are incredible, the teacher's are kind, and I have the chance to use my language skill set with American Sign Language. Every week I'm there, the more personal and language growth I see in my life. (How does this picture of a post-it note relate to my job? My job has loads of funny moments. Loads and loads!!...Including this one, which I wrote on a post-it note for the teacher I was working with at the time.)
My beautiful mother! This is one lady I'll never stop being thankful for. Ever.
She goes to work, takes care of my dad, is my sounding board, coordinates a women's retreat, constantly cracks the corniest of jokes, and she even makes me dinner on nights she knows I'm out late because of school. She balances a lot, and I'm thankful for the Godly example she has been in my life. I'm thankful that she's not just my mom, but my friend.
Donuts. I'm thankful for donuts. Many of you may not know this, but donuts are my weakness. While in Portland this summer, I spent over 30 minutes in line waiting for one of the city's hot spots for the sweet pastries...and it was worth it! For years I have been telling my mom on my birthday, "Please don't get me a cake...I would like some donuts instead." It may seem silly, but I really am thankful for one of my all-time favorite snacks!
My little sister, BreAnna. She's the best little sister a girl could ask for. She keeps me laughing ALL of the time, and I enjoy all of our conversations. We have the best sleepovers and enjoyed tackling our summer bucket lists together this year. BreAnna has brought more encouragement to my life than I can even explain, and I only hope that I can encourage her as much as she has encouraged me.
My 4-year-old cousin, Rayna. This kid keeps me laughing every time I see her. Last night at dinner she kept telling me that she and I are best friends, and how she just couldn't wait to come to my house for Thanksgiving Day. This morning when she woke up, apparently she told her daddy that today was a "Crystal day" - so she couldn't play with him. She could only play with me. When she arrived, she instantly requested that I sit next to her for lunch, where we had the following conversation:
"Crystal, I love family dinners!" - Rayna
"Yeah?? Me too! Why do you love family dinners?" - Me
"Because I get to see YOU!! And I LOVE spending time with you." - Rayna
My new baby cousin, Erica!! Rayna is now a big sister!...Isn't she cute?? I'm thankful for every chance I get to have to hold her...Especially since the line to do so is always so long! (Ha!) She's adorable, and quite possibly the squeakiest baby I have ever met. Who wouldn't be thankful for a chance to snuggle with such an adorable baby?? (Side note: I'm also incredibly thankful for the aunt that gave me these two snuggly and playful cousins to adore!)
The support I've experienced since finding out about my Facebook fiasco of my photo going viral. Wow. Talk about a powerful amount of encouragement!! I know I've not blogged much since my initial entry about the situation, but I promise to write more soon about everything. I can't deny it - the last few months have been a crazy roller coaster ride, and one that isn't quite finished yet...But WOW. When I made my first post on Facebook about what happened - and then blogged about it - the support has been off the charts. During a really hard day, I recently had a friend/mentor tell me something along the lines of, "Look at all the support you have!! As I watch your blog and Facebook page, you've had more support with this one issue alone than I've ever had in my many years of ministry." And it's true. I've had a LOT of support, and I cannot give enough thanks for this as this crazy, unexpected journey unfolds.
Not only am I thankful for the support I've received, I'm also thankful for all the encouragement. (Although, I do realize that these practically go hand in hand.) Since the Facebook Fiasco started, I've received message after message from friends and strangers alike. I heard from many of my 1,550 Facebook friends, plus others I've never met from around the world. I have heard from people with the same type of birthmark that I have, from people who have a child who has what I have, and from people who didn't know what a Port Wine Stain was until they clicked on my blog, or read the article the Fresno Bee wrote on my story.
The encouraging messages I have received have been such a blessing, and an unexpected surprise. While I knew some people would message me, I didn't expect such a high number of emailed support. Like I mentioned above, this has been a roller coaster ride I need to write about again later, but without the encouragement I have received - I know this journey would have been 100,000x harder than it has been.
On the days when I've allowed myself to become distracted by the discouragement of my situation, I've had so many of you tell me, "I just know God is going to do something great with your story!! I know it!!" So thank you. Thank you for lifting me up when I have struggled and been down. Thank you for following my story, sharing it, emailing me, praying for me, and for encouraging me in all the different ways you have all had a part in. I know many of you are rooting for the plans and story God has for my life, and I appreciate it!
I've known Denise all my life, but she and I have only moved past the life-time acquaintance phase to a full, good, friendship in the last year and a half...And for this, I am beyond thankful!! In September of 2013, Denise was the worship leader of a women's retreat my mom coordinates. During the retreat, I had the chance to get to know her a little bit. Wanting to get to know her better I later requested to meet for Starbucks. (Which, it turns out, neither one of us likes coffee! Ha!) Since then, Denise has been more than amazing and has gifted me with more encouragement than she'll ever realize and she keeps me laughing with her witty sarcasm. She has turned me into a superhero, Amethyst, and has written me a beautiful song...A song that I can't imagine being written in any other way. I never imagined having a song written for/about me - ever - but she did it in the most perfect way, and it's the best gift I've ever received.
Recently I went to Nashville to work on a video project. Ironically, it is a project I had planned before my picture went viral. Around June or July I called my friend, Brian, and told him of a video idea I had in mind...A video I've wanted to do for at least a year...and a video in which I wanted tell a part of my story, but also with the ability to use this video to hopefully promote and attract potential speaking opportunities.
I went to Nashville early in the month of November and I've already seen two cuts of the video. It looks FANTASTIC. Brian is incredible at what he does, and it was a joy to work with him and my new friend, Melissa. Being in front of a camera was a bit awkward for me at times, as I'm use to being behind the camera...but I really enjoyed every moment of this project.
I'm thankful for the opportunity to take time off work and school so I could travel to Nashville and work on this project. I'm thankful for cough drops, which were a huge contribution to the creating of this video. I'm thankful for the patiences of both Melissa and Brian, as well as their encouragement throughout the whole process. I'm especially thankful to have the chance to work with Christian "video guy" who took the time to pray over the project we were working on, as well as for God to use the video to open more doors to speak to others - whether the door be their computer screens on YouTube, or by me (hopefully) gain more speaking engagements where I can speak and encourage others in-person.
If anyone is looking for a chance to tell their story through video, I highly recommend that you check out his website: www.tekmerion.net (I've not published my video yet, but I will keep you all updated and share it once I am able.)
My friend Melinda! We are total opposites, which is a beautiful thing...but that's another entry for another day. (Ha!) I'm thankful for the many deep conversations that have taken place in my car with this lady, and am thankful for her constant reminders to have faith, to dream big dreams!...That nothing is impossible.
I'm thankful for the ability to dream God-sized dreams, and to be proud to do so! With God anything is possible - and what's not to be thankful about that? My dreams are BIG, but my God is even BIGGER. (I have a whole bulletin board in my room that is dedicated to my God-sized dreams!)
This beautiful lady (Amberly Neese) is one of my mentors, and one of the best speakers I have ever heard. She's a fantastic speaker, friend, and has one of the biggest gifts of encouragement that I have ever seen. Earlier in the year I sat down to talk with her, telling her of my God-sized dream to become a public speaker. That same day, and since then, she has taken the time to share her words of wisdom, bits of advice, and encouragement with me. She was the main speaker at a retreat I did a 20 minute talk at, and I'm so glad that she was there. With her being my mentor in this area of life, I found it to be more than fitting for her to be there as I spoke to a group of women and hopefully started my speaking career. I'm thankful for women like her (and Denise) who take the time to really invest in my life like they have done, and for women like them who take the time to really "champion me on" (As in the world of Amberly!) - especially in the last year.
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Again, this is only a summarized list of the things and people I am thankful for. If I included everything and everyone, this would easily be the blog that never ends.
Too add to my list, though, I am incredibly thankful for God's strength, guidance, His patience, and protection. Between random gallbladder surgeries, cruise ships catching on fire, heavy school loads (while working full time), pictures going viral...My life has been crazy busy and adventurous, and I can't imagine living life without my God.
I don't know what the next year will hold for me, but I'm going to continue to dream my God-sized dreams and dream BIG. I'm going to continue to be thankful for both the little things, and the big things, on a daily basis.
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.
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.*********
My name is Crystal. I’m the person in this meme. However, in this edition of it, I’ve made some changes. It’s the same meme that went viral two years ago but with a twist. While there is more to my story and more to who I am, thanks to the help of my friends, this image has been created with 10 words that describe who I am.
