I’ve always known storytelling was important. I’m constantly found telling stories, and I love to hear
them. But until this weekend, I never realized how important story telling really is. I never fully realized the impact that the written word can have on others.
In the last couple of years my blog has really taken an unexpected turn. It started as a place to write random stories about whatever was happening in my life, especially while traveling. Slowly, it instead became primarily about my facial difference, and the experiences that I have on a regular basis. My travel blog turned into something I never saw coming.
I’m pretty sure I wrote about this once in another entry, so I’ll try to keep it short…But when I was 16, I went to a conference (The Revolve Tour) and heard Natalie Grant speak, sharing about her story and struggle with bulimia. I left thinking, “That’s what I want to do! I want to be a speaker.” Yet, just as quickly, I thought, “…But I don’t have a story to tell.” It wasn’t until about 2-3 years ago that I realized that my 6-year-old lie of, “I don’t have a story to tell” was completely wrong. Apparently, I do have a story to tell…just by being born with half a purple face.
This weekend I went to Newport Beach and Irvine to attend the Vascular Birthmarks Conference. I heard about this conference a couple of years ago, and since it was in my home state this year, I decided it was finally time to attend.
Truthfully, I was nervous. Don’t get me wrong – I was also super excited to attend. I’m constantly craving to learn about my ongoing condition, and craving to connect with people in similar situations. But here’s the thing…It wasn’t until this July that I finally met someone who looked just like me.
This summer I met a wonderful Australian family, Ryan and Mandy Longeran, and their daughter Sophia. Unlike my birthmark that covers half my face, Sophia is two and has a port-wine stain birthmark covering the majority of her whole face.
I was nervous about meeting them in-person. I loved chatting with Mandy on Facebook on a constant basis, but was wondering if we’d have an equal connection when we finally met during their trip in the States. But wowzers…We clicked instantly, as though we had known each other for years. Sophia is beautiful and has the most gorgeous blue eyes you’ve ever seen, and her parents were wonderful. For the first time in my life, I met people who understood life with a facial port wine stain, as well as a condition called Sturge Weber Syndrome. (They are my Aussie “soul family”. Feel free to follow their story on their Facebook page – Ellen Meets Sophia!)
Meeting them was great! Yet, I still found myself (once again) nervous, knowing this conference would be filled with people who looked just like me.
“Why am I so nervous?” I found myself asking. And then the answer hit me, “…What if I stare?”
People constantly stare at me, gawking at my difference. (Oh, the stories I could tell you!) Staring is annoying, it can be hurtful…So, what if I stared?
Yes, I have a port wine stain that covers half my face…But the people I interact with on a daily basis don’t. I’m accustom to seeing my difference in the mirror, in my photos, on my face…but not on other people.
The idea that there are other people who do look like me was encouraging, but also mind-boggling…Almost a foreign concept.
…So, what if I stared?
I was afraid of staring, of coming across as rude. But that wouldn’t be my intentions. If I stared, I knew it would be because I would be in awe of a room full of people who were like me…People who get it…People who understand, people with similar stories – and only for the second time in my life. An experience like that is a rarity, a blessing.
The conference was amazing. I learned more than what I thought possible. I even had the honor of meeting and having appointments with three teams of doctors who are at the top of their fields. (I met with specialists in regards to the Port Wine Stain and laser treatments, Sturge Weber Syndrome, and reconstructive surgeons.) Questions were answered; new dreams of possibilities were created. Hope was given.
One of my very favorite parts of the conference was connecting with people like you, my readers. I had at least 5 families come up to me and ask, “Are you Crystal? The blogger?”…And I loved that they introduced themselves to me. I loved meeting them, and I loved hearing their stories. (If I met you and seemed a bit out of it, sorry! There was a LOT to take in. I was a bit overwhelmed. I promise I’m not usually so socially awkward! Ha!)
The last reader to come up to talk with me was a mom. Her child was recently born with a port wine stain birthmark. With tears in her eyes, she thanked me. She thanked me for writing my blog entries; she thanked me for creating and sharing my video. She told me that my video was a good bridge in introducing her daughter to her friends, and for explaining her condition. (And wowzers…I almost cried with her.)
My goal has always been to encourage others, but I had no idea how much of an impact my former travel blog had become. I had no idea that my blog and video had become such a lifeline for many parents who found themselves in a new and unexpected journey.
If I met you at the conference this weekend, please know you have encouraged me – and more than you’ll ever know. Some of you may have noticed I’ve been MIA for the last couple of months. Needles to say, I’ve had a bit of a writer’s block problem lately, but you’ve rekindled that fire to continue as a storyteller. And, may I add, you are incredible parents. You are going to conferences to learn as much as you can, connecting with people in similar situations early. It took me nearly 24 years to have a chance to meet anyone like me (we had limited resources when I was a child – thank goodness for the Vascular Birthmarks Foundation and social media!)…But you’re allowing your beautiful young children to have those experiences now, before they’re 24-years-old – and that is powerful. Together, you are creating world changers.
If you or your child has a vascular birthmark of any kind, I highly recommend that you attend the next Vascular Birthmarks Conference. There’s a lot packed in such a short amount of time, but it’s well worth it and you won’t regret attending.
The conference alternates every year between California and New York. (This year it was California, next year it will be in New York.) You’ll get a chance to meet and have appointments with top doctors from their fields, have questions answered, and you’ll meet new friends. I thought I knew a lot, but this conference showed me how much I still have to learn.
In addition to the seminars and appointments with doctors, they also offer makeovers for those interested. Daycare is provided, and this year, the first 50 families to register (from out of town) received a free hotel room for the night before the conference. You can even get the conference fee waved, and receive breakfast and lunch.
Oh, and it turns out, this conference is a safe place to do some occasional staring. Apparently, everyone there is in awe of people who look just like them too.
The Travelin’ Chick,
Crystal
PS: My mom will be writing a guest entry for my blog soon, sharing about her experience as a mom attending the conference.
For many, it's a dream come true to hear from a casting agency inquiring if you're interested in a role on their TV show. I guess it's a dream for me, too. There are certain talk shows that I would LOVE to hear from and be a guest on. It's on my God-sized dream board to appear on The Ellen Show and to participate on What Would You Do.
A couple of months ago, I did receive an inquiry from a casting agency for a reality TV show...but it wasn't a quite a dream come true. To sum it up: A man in the UK saw my YouTube video and emailed me. He asked if I was still living in the UK as he was looking to feature people on a reality TV show...People with "significant medical conditions" who were "looking for love".
When I inquired about the specific name of the show he was casting for, he avoided my question. So, I went to Google and did my own research.
The casting agency that reached out to me works for two shows with the description he gave me: Too Ugly for Love? and The Undateables. I know a few people in the UK who enjoy the shows; however, a majority of the people from the UK that I've connected with are strongly opposed to them. Having limited access to the shows, I only want to focus on the titles...and I'll be honest - I'm not fond of them. Maybe the show helps educate others about different conditions by raising awareness. But I still don't like the titles. There's a lot I could say about the titles of the shows, but that's not why I'm writing this blog entry. Here's the thing - I'd rather focus on the positive. I'd rather tell you why my facial birthmark doesn't make me too ugly for love, or undateable.
-----------------------
So here's my list: 10 Reasons my Birthmark doesn't make Me 'Too Ugly for Love' or 'Undateable'
Big Ben
1. I have a unique perspective on life. This comes from both my unique appearance and my experiences in life. I know there is more than one way to look at a situation. From firsthand experience, I know we shouldn't judge a book by it's cover - or a person by how they look.
Live, Love, Laugh - and take selfies with Flounder.
2. I know how to laugh. I have a sense of humor. I have to laugh, whether it be at myself or at a situation. I know I can't take everything too seriously. When someone asks if I painted my face with face paint, or a child asks if I got my birthmark from "eating a hamburger", I laugh. Laughing is such an important part of my life and I try to have a good laugh at least once a day. Life would be too hard and complicated without those moments of laughter. Sometimes (depending on what's happening in life) you have to search for those moments, but they're well worth it - and I can't wait to laugh with a significant other.
3. I'd add a bit of color to a man's life. (See what I did there?) Not only will the purple hue on my face add in some color, but my life is never boring. There is always a story to tell.
4. My family is amazing. They've never treated me different because of my facial difference. They still pushed me to do my best, they still tell me that I can do anything I put my mind to. They encourage me to reach for the stars. They've encouraged me to be proud of who I am, as I am. When I laugh, they laugh. When I cry, they cry. They love me and they support me, no matter where I am in the world.
5. I (typically) have a lot of patience. I get asked a lot of questions and I get stared at often. It usually takes a lot to push me over the edge. Sometimes I have to explain my birthmark and condition 20 times a day, sometimes I don't have to explain it a single time...Either way, I don't mind.
6. Life isn't always easy, and I get that. I'm basically a pro at knowing how to persevere. (Well, kind of.) Life is hard. It's not easy...But I never quit. I never give up. I may get knocked down on occasion, but I always get back up. When the wind gets knocked out of me, I learn to breath again. The staring and the comments? The medical procedures? My image going viral? All these things have had a part in teaching me to persevere with joy. Life is a journey and we can all learn from both the good and bad times...and although it may take a lot of creativity and juicing practice, there's always a way to make lemonade out of lemons.
In March 2011 Japan experienced a tsunami. That July I went to Japan to help with disaster relief efforts.
7. My heart is compassionate. This kind of goes hand-in-hand with having a unique perspective in life. I know what it's like to struggle, to go through a hardship - both because of my birthmark and general life experiences. When I see others struggling, my heart breaks. I'm still working on this skill set and I'm far from being perfect at it, but I always strive to find ways to encourage those around me.
8. I am one of a kind. Birthmark or not, there is only one me. I'm a California native, but traveler at heart. I strive for the adventure of a local – seeing what they see, smelling what they smell, and tasting what they taste. I’ve travelled to 11 different countries (living in two international lands) and am constantly receiving a new stamp in my new, yet beat-up, passport. Baking is an addiction, but one I use to hopefully bring joy to someone’s day. (Truffles are my specialty!) I’m an author, speaker, and photographer. I’m also bilingual, as I have been studying the visual language of American Sign Language. (Although, I am trilingual if include sarcasm. Like I mentioned above, humor is also a constant enjoyment in my life.) Dreams are what I strive for - and I don’t dream small. I dream God-sized dreams, knowing that nothing is impossible and have a bucket list that is never ending. I've even been pooped on by a dolphin. No one else is 100% like me. I'm the only Crystal Hodges in this world that fits my story. I'm special, I'm unique.
9. When I date or marry - my boyfriend/husband won't be taken for granted. I get that my birthmark isn't up every guy's alley, and that's okay. Especially when it includes laser treatments every two months, rude comments, and constant stares. When I was an infant and young child, my parents were constantly asked if they burned me, their child. I know that other people close to me are affected by people's harsh comments and gawking. Whoever I date/marry will probably have similar experiences themselves. Whoever I marry (if I marry) - I know he's been worth the wait.
10. I'm confident. I know who I am. My birthmark doesn't define me. I can wear makeup, or I can go without it. I'm more than my physical shell. I'm proud to be me - birthmark and all. My journey has been a unique one, that's for sure, but I'm proud of who I have become. I know I'm not perfect, I know I make mistakes...But I know I'm dateable. I know I'm beautiful, both inside and out. Although I hope to continue to grow and become a better person, I wouldn't change who I am. My life has been an adventure, and I know my journey has a lot of amazing things on the way.
-----------------------
I know that not everyone with a facial birthmark or facial difference will relate to my list. Not everyone has such an awesome family, not everyone feels confident. But this is my personal list. This is how I've been molded throughout my experiences and my life. After reading this blog entry, and if you're struggling (whether you have a facial difference or not), I hope you are encouraged to make you're own positive list as to why you're beautiful and/or dateable...because you are. You are one of a kind. You are a valuable. You are a unique and beautiful person that is worthy of being loved. You are especially valuable and worthy enough to love yourself. Although the titles of the TV shows stung my heart momentarily, it is kind of cool to say that I was contacted by an agency to see if I would be interested in appearing on a TV series. But more than that? It shows me that if I can get the attention of an agency in the UK, maybe the talk shows in the USA will one day have the same interest...This experience reminded me that anything is possible. I was encouraged to continue dreaming big dreams. I was reminded that even though I am single, I am dateable. I am beautifully and wonderfully made. The Beautiful Travelin' Chick, Crystal
"What happened to her face?" I heard you ask - and not in a friendly tone.
Even though I was still very groggy, I briefly opened my eyes. I was still in the procedure room and your team had just adjusted me from my stomach and returned me to rest on my back. The anesthesia I had been under was wearing off in a record time.
Closing my eyes, I thought, "Did I just dream the nurse's question? I must have." But it my gut, I knew it hadn't been a dream. The question hadn't been created as a hallucination from the anesthesia that my brain and body were emerging from, and neither was my feeling of hurt.
The more I woke up, the more I was confident in what I heard you say...and the more it made me feel terrible.
As hospital staff parked my bed in a room in recovery, I asked my two anesthesiologists who accompanied me for confirmation, "Did I just hear one of the ladies in the procedure room ask what happened to my face, or did I dream that?" Instantly the man responded, "Yep - you heard her correctly!"
"Oh," I told him, "You can tell her it's just a birthmark. I don't mind people knowing what it is. I actually write about my birthmark and story on my blog, and I am a public speaker on the issue."
Continuing in conversation with my anesthesiologists, it took all I had to not express my frustrations as I mentally processed the experience and tried to understand how exactly I was feeling.
Once my doctors finished checking on me and doing all that they had to do, they went and told my mom that she could come back to see me in recovery. Just seconds after she entered the room she asked me, "What's wrong? You're not acting like you, even the 'you' coming out of anesthesia. What happened?"
I tried to brush it all aside and denied that anything was wrong - but mothers always know better...Especially my mom. (You should meet her one day, she's pretty great!)
My heart felt heavy. I felt frustrated. I was hurt. I was tired.
You may not know why I was in the hospital, why I was having a procedure done. After all, you don't know me. You don't know my story. However, walking into the hospital that afternoon, I checked in to have a procedure done on my neck. Two years ago I was in a car accident that injured my neck and shoulders. The experience has been long and tiring. To help with the pain and symptoms I've been experiencing for the last couple of years, my doctor recommended that I have injections in my neck joints - six injections in total. This procedure was (and still is) my new sense of hope to escape the ongoing pain.
Today, a week later, I finally talked directly to your manager. We had a good, 45 minute, detailed discussion. I told her that I was hurt, that I was frustrated...That I was there for my neck - not my face. Your words, and the attitude in your tone, were not the first thing I wanted to hear after a painful procedure. In fact, that's the last thing I wanted to hear. She understood, and she was equally as disappointed in the situation.
My amazing mom.
Your manager then explained that she reviewed my file to figure out what happened, and to figured out it was you who made the comment, you asked the question. (No worries - she didn't mention you by name.) She explained to me that when I entered the room to have my procedure, I had one nurse that I met beforehand. When the procedure was finished and I was prepping to leave the room, I had a different nurse due to a shift change...I had you.
You had no way to know that when they turned me from my stomach and onto my back that my face wouldn't be the norm. According to your manager, since you switched mid procedure, you didn't see much about my file, nor were you informed about any medical conditions that I have. You went in blind, without any "warning" about my face.
I'm guessing that you probably thought I was still asleep. You probably thought that I wouldn't hear your words, I wouldn't remember them. But I was awake...I do remember.
I guess it's also a possibility that you meant your question, "What happened to her face?" to translate to, "Is she okay? Is she having some kind of reaction?" But it didn't. Not with your choice of words and tone infliction that you combined together.
Bluntly: It translated to an unprofessional, careless attitude, and sounded as though you were just being nosey. Also? Your words have affected me. They have hurt...But they inspire me.
You probably don't read my blog, for if you did, you wouldn't have asked the question that slipped through your lips. You'd know my story, name, my face, my experiences.
I want to let you know that you're not the only one to choose the wrong words on occasion. (Not to excuse what you said.) Within just 1 1/2 years, and with other hospital employees in a variety of departments, I've been asked if my birthmark was face paint. Another woman asked if my birthmark was an allergic reaction to the flu shot, and during a hospitalization, another nurse (while I was awake) rudely asked my attending nurse, "What happened to her face?!??" When I started to react, she pretended like I wasn't awake and sitting in front of her when she continued to ask my attending nurse (still attitude infused), "Oh, is it something she's had for a while?" She never addressed me. She never talked to me. I was invisible.
A few weeks later, during a time when I was incredibly sick, a receptionist recommended that I switch makeup brands so I can hide my birthmark better as, "it probably bothers other people more than it bothers you". (You can read more about my experiences on my blog entries, It's Just a Birthmark!, Exchanging the Negative for the Positive, and Worth more than Gold.)
That's just the hospital setting alone, completely excluding my experiences at the dentist office, at college, online, and when I'm out with friends.
Knowing the words that have been said about me and to me while awake, I don't want to know what may be said about me behind closed doors - or when I'm asleep having my gallbladder removed or during a third ankle surgery. I don't want to know what has been said when I'm not awake, the things I don't hear, what I don't remember.
Your words hurt, but they inspired me. Your words refueled my desire to make sure that a change is made in health care services, regardless of the hospital and organization I'm in. People (phyiscally different or not) should feel safe in a hospital setting...but lately, I don't. After experiences like this, I'd be tempted to start wearing makeup to surgeries if I knew my doctor would allow it.
You'll probably see me again in your department in the weeks to come. This time, I'll be there for a different reason. I'll be there to talk about my story, to explain situations I've been in and why my experiences are not okay - and why. But I won't just focus on the negative aspect. I'll be teaching you and your coworkers better responses and friendlier ways to address certain issues. I'll also be reminding you that I'm more than just another patient, I'm also human - just like you. And just like you, I have a story. I have feelings. I am more then whatever "happened to" my face.
Please know, though, that I don't remember who you are or what you look like. I won't be there to target you or to make you feel awkward. I won't single you out. In fact, I don't even remember who you are. Although I blog about my experiences, I probably wouldn't be able to recognize the people who created the experiences - even if I sat in a room with them. I strive to remember the situations, the stories, the quotes - but work equally as hard to forget who said it. Who said it doesn't matter, what was said does. Your ability to grow and learn matters even more.
You're not the first person to say hurtful words. You're not the last. But you can learn. I can't change my appearance, but you can change the way you handle situations, your attitude, and the words you choose. You can remember that all your patients are more than just an ID number waiting to be "serviced". You can remember that patients aren't always asleep, regardless if their eyes are closed.
The Travelin' and Inspired Chick,
Crystal
----------
Do you work at a hospital and have an interest in having me come lead a sensitivity training at your organization? Let me help your organization's patients avoid similar experiences like the ones mentioned above. Feel free to contact me!
About two weeks ago my friend Denise ask me if I'd be willing and able to partake in the creating of a card board testimony for the California Free Will Baptist 2015 state meeting. Denise did a great job putting it together. What a blessing it was to see the video for the first time last night and to see how lives have been - and continue to be - changed because of Christ!
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.*********
Some of you have inquired what a laser treatment is like. So you can have a general idea of the procedure, I had my mom take a few video clips on Friday. Below I will have to video clips, both short. (The first one is under a minute and the second one is barely over the one minute marker.)
For this first video clip, I tried to add some captions on YouTube for those who need/want them. Sorry if it's a little rough…It was my first time doing that and I hope to get better for any future videos.
This is towards the beginning of the treatment.
For the next video, I have yet to add captioning as it takes a bit of time to do so…Sorry about that! For the general idea of the conversation, the doctor and I were talking about my casts. We talked about a pink one that my sister and brother-in-law bedazzled with lots of bling, how the nurses in podiatry all came out to the waiting room to look at it while I was waiting for my doctor's appointment, and the plans for my new purple one. I'll try to add captions soon!
This one takes place near the middle of the treatment.
During this most recent treatment (two days ago), we were able to do 252 laser pulses total. The machine was also on a higher setting than before, so I felt it more than usual, which brought a lot more discomfort/pain during the treatment. (Praise the Lord for stress balls I can squeeze during the treatment, and for the before-treatment numbing cream!) If I felt comfortable with them treating the eye area where I can't put numbing cream and am required to wear a metal contact for, the number would be even higher than 252…but I have yet to get over the idea treating areas without being able to numb them, and I have yet to get over the idea of wearing a metal contact. The idea of the contact totally freaks me out!
My face will be discolored as a darker purple for the next week or two - and during the next few days, Vaseline and ice packs will be my temporary best friends.
I hope the videos were found to be helpful and interesting. Hopefully they explain what happens during the procedure better than my written, signed, or spoken words. If you have any further questions, please let me know! I'd be happy to answer them. :-)
The Travelin' Chick,
Crystal
PS: If you need a reference blog with information about my birthmark and details about the treatments, check out my original blog post: Birthmarks and Laser Treatments.
Told ya. Lots of medical stuff has been taking place!
During the last month, in the midst of all the holiday celebrations, I've had a lot of medical stuff going on. No worries - none of it has caught me by surprise. To summarize: in the last month I have had ankle surgery, a wisdom tooth and molar removed, and a laser treatment on my birthmark.
Whenever I am out and about, I just about always expect staring due to my birthmark. I expect weird questions and statements…and sometimes the occasional stupid remarks. The thing is though…When I go to a hospital or a dentist office, I don't really expect many ridiculous stories to unfold - at least not because of something hospital employees say. I guess I go into those buildings thinking that those who work there have a bit of knowledge that maybe the average Joe doesn't have. Maybe they don't know why my face is purple and pink, but I guess I've always assumed that they realize, as they work in their field, that there are many different kinds of people that don't necessarily look, or even act the same as others. I guess I also assume that they have trained themselves or have learned to have a professional filter somewhere between their brain and their vocal cords. But, I suppose that even people who work in the medical offices are also human…and can also give me a story to tell.
All of the stories I am about to tell you are true. And they've occurred within the last few months.
As I was preparing for my ankle surgery, I had to have a few podiatry appointments that included me going for x-rays of my ankle and foot. While waiting to be called back for the x-rays, a young lady (who works for the hospital) came in the waiting room, saw me, and asked, "Oh, are you wearing face paint or something?" I looked at her and said, "No...It's just a birthmark…"
This lady then became super embarrassed and flustered saying, "Oh, well, I just thought that since it's
My fun knee caddy/scooter. I've even decorated it a little more since this photo.
time for Halloween and some people...well...you know...yeah...Sorry about that." Holding back my laughter, with a smile I said, "It's ok - don't worry about it!" She then walked out.
After I was called back for my x-rays, the same (embarrassed) lady ended up assisting the person I was with. The poor lady kept looking at the ground and wouldn't even make eye contact with me. She even asked the x-ray technician if she "really" needed her assistance. I could tell she felt bad. And awkward. I actually began to feel bad for her, but didn't know what to say to help her feel better about the situation...and it really did take all I had not to laugh - so it's probably better that I stayed silent!
Before I had my ankle surgery and before Christmas break began, my mom had me get the flu shot. Although I got the shot - I can't say that there wasn't a lot of protesting on my end…But eventually, I caved. Probably a good thing too, since I work at an elementary school and get germ-filled snot and slobber on me constantly…Just thinking about it makes me shiver.
Turns out, I'm allergic to the flu shot! I had a red and feverish spot on my arm that kept growing, even a few days after receiving the shot. Eventually it became the diameter size of a baseball and mom had me call the nurse hotline for advice. The nurse on the other of the line told me to go to the ER and that I should have called about it sooner.
As I am called form the ER's waiting room to see the triage nurse, the nurse asks me what I'm there for. I responded, "I'm having an allergic reaction or something to the flu shot." Looking at my face and with a monotoned, yet tired voice, she pointed and asked, "Is that the reaction right there??"…What????
I mean, I guess that's a valid question. I don't know. She wasn't the only nurse who had that thought that night. Valid or not…I just laughed in disbelief and a part of me wanted to respond, "Yeah…because we all get our flu shots in the face, right?" But I didn't. I just held onto my laughter until I left the room and I just cracked up once back in the waiting room with my mom.
About a week later I went to an oral surgeon for a pre-op appointment for the surgery to remove the two teeth removed. We introduced ourselves, and with a smile he looked at me and asked, "Oh - you have Sturge-Weber syndrome, don't you??" (Which, honestly…I'm not sure how to explain Sturge-Weber Syndrome. I have it in addition to the birthmark, but it is caused by the birthmark. I haven't learned much about it, but from my understandings…it's basically all the complications that a port-wine stain can cause, like my glaucoma. Except, I have it easy in comparison to a lot of people with the syndrome.) Looking at him amazed, I told him, "Yeah…I do."
The oral surgeon got really excited. Seriously. He was like a kid in a candy shop!! I think I made is day by just walking into his office. Before pulling down a book to read about my birthmark and the syndrome, he commented, "I don't know the last time I operated on someone with Sturge-Weber syndrome. Actually, I'm not sure if I ever have…at least with it on the gums. I wonder if you'll bleed more, since it's caused by extra blood vessels. I'm quite curious!"
Even the kiddo (my cousin) likes to take a joy ride with the scooter/caddy! Who can blame her??
Confused, I asked him how he knew about my birthmark. He told me he not only went to a school to learn about dentistry, but also went to medical school to learn more about the face so he could be better
prepared as an oral surgeon and dentist. I then told him the story of the ER nurse, telling him that I am impressed he knew so much when someone in a hospital setting knew so little. I hadn't expected a dentist to know anything about it…at all…but it really felt good to know that he made an effort to learn and still wanted to learn more.
I didn't go back to have the two teeth removed for a couple of weeks. Once I had them removed, he told me to make an appointment for the next week so he could make sure I'm doing okay and to remove the stitches.
I didn't make it a week. Within two days, I was back in their office. The stitches were driving me CRAZY. Being so far back in my mouth, it would literally feel like I was swallowing a piece of string.
Going back into the office, one of his assistants greeted me and took me back to a room. As I sat in a chair, the lady looked at my face and wide-eyed asked, "Oh my!! Is that from your surgery? Did the doctor do that to you?? You should of called us sooner!!" I then explained that, no, the doctor - her boss - did not do that to me. (Knowing I was having a laser treatment within the next 24 hours, I wanted to say, "You think I look bad now?? You should see me after my laser treatment tomorrow!!")
Unlike the ER nurse, I didn't find this situation to be funny. I actually felt the opposite. It frustrated me and I felt annoyed with the lady. I don't really know what the difference was. Maybe it's because I was still feeling crummy from having two teeth removed, in addition to having my cast as I heal from my ankle surgery. Maybe it's because I am tired of people who work around people in a medical type setting being totally clueless, and not knowing how to be a more classy type of clueless. I don't know. But just like my laughter with the ER nurse, I held in my annoyance with the oral surgeon's assistant.
The oral surgeon then came into the room and started checking things out. As he did so, his employee basically "told on" herself, recalling the conversation and comments she made…laughing while doing so. The oral surgeon's expression said it all - even before his words of apology for the lack of sensitivity of the lady who works for him. His face held a combination of frustration, embarrassment, and disbelief. After he apologized, the lady continued to laugh as she said, "yeah…Sorry about that!"
Yeah. Okay.
When I tell the stories that seem to continue to pile up, my sister always tells me that I need to have fun with people. She tells me I should unleash the sarcastic responses that come to my mind in response to certain questions or comments. Really, if you could see into my mind when situations arise, it can be a fun and hilarious comic strip playing out…but I always hold back. And sometimes my sarcastic responses come to my mind a little delayed.
Although I always expect people to say things, no question or comment is ever 100% the same. Somehow, I am usually caught off guard. I mean, even though the ER nurse's comment and the comment of the lady who works at the oral surgeon's office were both similar…They were not the same. At all…Each catching me by surprise!
Maybe being sarcastic in response isn't the right thing to do. Maybe it is. Or, maybe it doesn't matter…Maybe I should decide if I want to be sarcastic, depending on the person, the age, comment, attitude, etc, etc, as I can usually - and very quickly - weed out who is genuinely curious and kind verses those who are just plain ridiculously rude. I don't know.
My Deaf professors are always sharing their stories of the crazy things people tell them or ask them, along with their quick-witted sarcastic responses they give to people…and I love their stories! I love how fast they with their witty responses and often wish I could be the same way.
Maybe you work in a medical office or dentist's office. Possibly you're a doctor, nurse, or a receptionist with no medical training. If you work in either of these settings and your'e reading my blog, please take at least one thing from what you're reading.
Everyday I have to go out in public and deal with staring. Nearly everyday I am put into uncomfortable situations caused by the general, awkward public.
I get that you may not know why my face looks the way it does. I get that you may have questions about it. Truthfully, I don't expect you to know a thing about it or to go out and learn about it. But when I walk into a hospital or dentist office? I expect and hope for a decent sense of professionalism from you.
Hospitals or any kind of medical buildings *should* be a safety zone away from nonsense. Realistically, in these settings - nothing should be assumed. I mean, come on! I can't be the only "oddball" you've met.
Expect different people to walk to your doors at anytime!! Sure, those of us who are "different" may get stares and off-the-wall comments from other people in the waiting room, but more than likely - they don't work in a medical setting. Fair or not, I set the bar a little higher for the people who do.
And although it may not be in your job requirements, I hope that you have the previously mentioned filter between your brains and your vocal cords. Think before you speak! Treat me with respect. Treat me how you'd want to be treated if you were in a similar situation. Think through your words, vocal tones, and the looks you give others.
You can ask questions. Just be kind and please think about the way you phrase them.
The Travelin' Chick,
Crystal
PS: By the way - if any of you near me need a recommendation for a great oral surgeon, let me know! I really enjoyed the guy I was referred too. He was really kind and had a great sense of humor as he signed my cast while I was knocked out during the procedure, and told me he took a ride with my knee caddy I use to get around.
I’ve always known storytelling was important. I’m constantly found telling stories, and I love to hear
The conference was amazing. I learned more than what I thought possible. I even had the honor of meeting and having appointments with three teams of doctors who are at the top of their fields. (I met with specialists in regards to the Port Wine Stain and laser treatments, Sturge Weber Syndrome, and reconstructive surgeons.) Questions were answered; new dreams of possibilities were created. Hope was given. 
My goal has always been to encourage others, but I had no idea how much of an impact my former travel blog had become. I had no idea that my blog and video had become such a lifeline for many parents who found themselves in a new and unexpected journey.
In addition to the seminars and appointments with doctors, they also offer makeovers for those interested. Daycare is provided, and this year, the first 50 families to register (from out of town) received a free hotel room for the night before the conference. You can even get the conference fee waved, and receive breakfast and lunch.
