A Poem: Your Birthmark (Your Map)

Photo by Jeremy Cowart

 In a world of black and white, you're a splash of purple hue,
A birthmark on your face, a story that's so true.
A map of life's adventures, a tale of strength and grace,
In the mirror of your soul, it's a journey we can trace.

Your purple birthmark, a guide to the unknown,
A symbol of your courage, a path that you have grown.
Let's unravel the mysteries, let's explore the untold,
For this purple birthmark, it's a map we'll hold.

Oh, purple birthmark on Your face, a map of destiny,
Leading us to places where we're meant to be.
Through mountains and valleys, we'll navigate with grace,
For this purple birthmark, it's a map we'll embrace.

Each line and curve, a chapter of your life,
A journey of resilience, through happiness and strife.
With every step we take, a new adventure awaits,
Guided by this birthmark, we'll conquer any gates.

Oh, this purple birthmark, a guide to the unknown,
A symbol of your courage, a path that you have grown.
Let's unravel the mysteries, let's explore the untold,
For this purple birthmark, it's a map we'll hold.

With every twist and turn, we'll find our way,
Through stormy nights and sunny days.
This purple birthmark, a compass in disguise,
Guiding us to love, where our hearts will rise.

So let's follow the lines, wherever they may lead,
Discovering the magic, fulfilling every need.
For this purple birthmark, it's a map we'll forever trace,
A symbol of our journey, a map we'll never replace.

The Travelin' Chick,

Crystal

10 Things I Need You to Know About Life With a Port Wine Stain Birthmark

Without meeting me, it’s easy to make assumptions about my life.

Why?

Because I don't look like most people.

Over the years I've had many people come up to my parents, husband, and myself to ask questions or to pass unkind judgement. Sometimes people are genuinely kind with their curiosity, but more often than not – there's just as much said in their uncomfortable body language and unpleasant tone as there is in their words.

Here are just a few that I’ve heard:

“I thought you were the girl who had something ‘wrong’ with her face.” 

“How’d you burn yourself?”

“You’re so brave for leaving your house. If I were you, I couldn’t do it."

“Doctors can fix that. Have you tried plastic surgery?”

“Is your husband beating you?”

“You’re too ugly for love.”

“Woah – were you in an accident?”

“Of course your beautiful, but you’d be more beatitude if that thing weren’t so prominently placed.”

Yet, very few (while making assumptions) get it right.

And that's the problem with making assumptions. That's the problem with jumping to conclusions.

I was born with a port wine stain birthmark.

But being born with a port wine stain birthmark – especially on my face – isn’t necessarily what you think it means, both medically and personally. And there are 10 things I need you to know before the wrong assumptions are made about my life and condition, and possibly the lives of others.

1. Three in 1,000 babies are born with a port wine stain birthmark – and that doesn't include any other types of birthmarks.  

2. I’m not brave for leaving my house. I’m just living my best life at Target, just like you. I’m not brave because I look “different” or because I’m a little more medically complex. This is my normal. It may not be your normal, but it is mine...Purple face and all. Stares, kind questions, harsh comments and all. I don't know life any differently. This isn't what brave looks like.

3. A port wine stain isn’t “just a birthmark.” It’s so much more than a skin pigmentation thing. Instead, it’s caused by development of blood vessels under the skin. And in my case? These blood vessels go all the way to my brain, affecting my gums, teeth, nose, ear and eyes along the way. (But we’ll come back to that in a bit.)

4. My birthmark constantly helps me protect my heart. It's a steal of a deal: "Get one birthmark, get a kindness detector free!" When people look at me, I typically get their instant, gut reaction to my face. Do they stare? Do they make a rude comment? I get to see people in a unique situation that most people don't. And let's be real – what girl doesn't love a good deal? Especially when it benefits her heart.

5. It's a free accessory I get to rock my whole life! I mean, I love the color purple – so what's not to love?

6. Doctors can't just "fix this." It's not that simple.

I'm 27 years old and I've had 53 laser treatments on my birthmark. And while yes, with each treatment my birthmark gets a little lighter, that's not my end goal of the treatments. My goal is to make sure the birthmark stays healthy. Without the treatments, the birthmark can grow blebs, my skin texture can change, I can have more symmetry issues than I already have, and it can bleed at random. The purple? I really don't mind it. The other stuff? Yeah, let's worry about that.

7. I'm definitely not "too ugly for love." And my husband? He always thinks I'm the hottest woman in the room.

8. Because my birthmark's blood vessels affect my brain and eye, I have a rare condition called Sturge-Weber syndrome (SWS). That means I've had glaucoma in my left eye since I was 8 years old, knowing I can go blind if I don't seek out treatment, and I've had migraines since I was 6. A lot of children with this condition also have seizures, and some are told they'll never walk or talk. My form of SWS is mild, but it's definitely there. But even without the SWS – my gums bleed, I get nose bleeds, and all my upper teeth on the left side are root canalled because of complications with the port wine stain. It's just not a simple condition. It's not just a birthmark.

9. I add a bit of color to people's lives around me! Not only does the purple add a splash of color to my skin, but it also adds a splash of color to my life. And with my humor and personality? There is always a story to tell!

10. Nothing is wrong with how my face looks. I don't feel the need to hide my natural appearance. I'm confident in who I am, as I am. I like what I bring to the table, and I won't change who I am to make others more comfortable. I am beautifully and wonderfully made! Birthmark and all.

I understand people are curious about how I look. After all, I don't look like the average woman. I mean, half of my face is purple.

Curiosity is normal. In fact, it's healthy! Curiosity helps us learn and grow.

But here's the deal: Curiosity should never get in the way of our kindness.

Sadly, when people meet me or see me out in public, staring is the norm – and so are awkward, unkind comments with harsh tones. Why? Because people sometimes see my birthmark first instead of my humanity.

If you ever see me and want to ask me questions – I'm totally open to them! I'd love to help you learn and understand what you're seeing. But instead of jumping to assumptions or having a one-way staring contest at my face, here's how you can start the conversation: "Hi. My name is _____. Do you mind if I ask what happened to your face?"

But after you ask me about my face, please don't forget to ask me what my name is, or if I'm having a good day.

Because just as much as I'd like to help you learn and understand what you're seeing – I'd also love to make a new friend.

The Travelin' Chick,
Crystal

13 Things to Remember About Health Advocates and Role Models

This year has been a really hard advocacy year.

Actually, it probably has been the hardest one yet.

Because there's so much positive to share in my journey (speaking opportunities, articles, media interviews, etc.) I think that it's equally as important to be open about the hard, vulnerable, and raw stuff too.

This year I’ve had people tell me I was in the wrong for standing up for myself in a way I felt was necessary – even though they weren’t in my shoes, or experiencing the situation personally. They weren’t even in the room.

Last month I had a video a company made about my story. While they did a great job with the video and I was proud of the outcome, it still resulted in some cruel comments...many of which resulting in my hitting the “report” button.

Strangers telling me to “F-off” and that my medical condition isn’t valid and is “insignificant” because they were going off what they can see – not realizing there may be more to my condition than what meets the eye.

A parent of a kid with similar condition accusing me of having a “false” and “hypocritical” public image – all because I didn’t respond to their email fast enough. (While also guilting me to be friends with her daughter.)

...and that’s only four issues I’ve run into in the last three months alone.

In all my years of an advocate, I’ve never felt so drained. Never felt so tempted to quit. Just the other day, due to another hard situation not mentioned, I even found myself saying words I never thought I’d say to my fiancé, “One day I may just stop.”

And the thing is, I can quit anytime I want. I can delete my blog, I can speak and write about other topics I’m passionate about - human trafficking, travel, or even photography. I can be known as someone other than “the girl who blogs about life with a birthmark.”

But then I remember why I do what I do.

I’m an advocate for myself, because I believe we should all advocate for ourselves to the best of our abilities. No one knows our bodies like we do, and no one can get the care for their own body’s need like we can.

I’m a storyteller so others can realize they’re not alone in their journey. Maybe our stories are different, but there is someone who can relate – and who looks like them.

I’m an educator so when someone is unkind to me because of my facial difference, maybe they’ll be kinder to the next person they meet in similar shoes. Maybe the next generation of people with facial differences will be seen as people with a name and story, instead of made to stand out through harsh comments and uncomfortable stares.

I’ve thought about quitting more times this year than I care to admit. But I do this because it’s what I feel called to do – even on the hard days. God’s not done with my story yet, and He’s not done with my storytelling.

Sometimes I wonder why my skin isn’t “thicker by now.” But then I’m thankful that it’s not, because I’m afraid “thick skin” for me would equate to a “hard heart” - and I so desperately want to keep that tender. I also remind myself that my feelings are real, and they’re valid. It’s OK to feel them, process them, and honor them.

Maybe one day I will “quit,” and hopefully someone else will be ready to carry the advocacy baton when and if that time comes. But until then, I remember the beautiful moments - like surprising a sweet kiddo with the same facial birthmark in the hallways of her school. I remember the emails of people who write me and say, “I thought I was the only one - but then I stumbled on your blog!” I remember the good moment that have passed and that have yet to come. I remember self-care, that it’s OK to take breaks and/or sabbaticals, and I’ll remember why I do what I do.

I remember that advocacy work isn’t always easy, but it’s not always this hard either.

All that being said, as you follow and connect with health advocates online, here are a few things that I think are important to remember as you follow and connect with me, and other health advocates and role models:

1. We are so thankful you're willing to be a part of our journey with us on our blogs and social media.

Oh boy, are we thankful for you! Whether you found us through media interviews and have no direct experience with our condition, a parent of a child with the condition, or you live with it firsthand – thank you for sharing our blog entries, social media posts, and for being a friend on the journey.

2. We're likely not doctors.

I constantly get emails asking for medical advice, including what treatments I think people should do and asking what their medical options are. Some people have even asked me to diagnose them. While I have a lot of medical knowledge, if we have the same conditions, our conditions may affect us differently. I don't have a medical degree, and I can't give you a medical opinion. All I can do is share my patient experience – what treatments work for my specific case, how the treatments affect my body and my mental health. If you ask me for medical advice for port wine stain birthmarks or Sturge-Weber syndrome, I'll probably just send you to The Vascular Birthmarks Foundation where they can then connect you with doctors where you can find the advice you're looking for. I'd love to hear your story, share more details about mine, and encourage you, but please don't ask me for medical advice.

3. Most of us wish we had time to reply to every email, social media comment, message on Facebook, message on Instagram, and every Snap sent to us on Snapchat.

But often we don't. Or, at least not within an immediate timeframe. Hearing from you is one of my favorite things about my job! But, unless we have a note pinned to the top of our page, "I promise to respond to every message within 24 hours," please don't expect us to write back within a day, or even a week. We're not on-call, nor are we a like a "one hour film development" center.

While we're seen posting a lot online, we also live a life away from the computer – much of which isn't published online for the world to see. Personally, I have a job, a fiancé I'm planning a wedding with and building a future with, family obligations, and friendships that I need to tend to face-to-face and way from the screen.

Also, it's important to remember that not only do I write about my conditions, but I live with them as well. Sometimes I have to take care of myself before I can help take care of others. I have doctor's appointments, laser surgeries, speaking engagements, and sometimes I travel. I also usually have a thousand ideas in my head at any given time, and I'm trying to manage them so I can best serve the health community I'm in.

To navigate my advocacy work and every day life, I do my best to reply to messages when I can. But I also have a habit of going through all my inboxes at least once month in effort to reply to people – but even then, sometimes I accidentally miss a few people.

4. It's OK to message us again if we don't reply to your first email.

But please be kind. It's possible we didn't see your message, even if Facebook said we did. It's possible that your email never reached our Yahoo or Google accounts. Please don't assume we don't want to talk to you, or that we have set up a "contradictory image" in the public eye. We're doing our best, really, we are.

5. Even if we don't reply, we soak in your encouragement.

Encouragement from others is so vital to what we do. Sometimes I even print of people's emails or messages to help me on the days that are hard health days, or even hard advocacy days. Your encouragement serves as a reminder that we are impacting the world for the better, that we are making a difference – even if it feels like we're not.

6. When we tell about an experience we've had, remember you weren't there – which means you don't get to see the full picture, regardless of how well we've written the story.

Sometimes the hardest part about sharing stories online is that, often, I was the only one there. I write stories sharing about times when people stare at me, or make a comment about my facial difference, and I share them to the best of my ability with full honesty. Yet, sometimes that's not enough. An experience has many elements, including things such as emotions, smells, tastes, body language, and tone – and not and they're 3D, layered with details. They're constricted between black and white letters on your screens, or the within the pixels of videos we may share. But because I was the only one there, there are several elements that readers will miss – so therefore wrong assumptions are made, and fair questions aren't asked.

In the past, people have responded in anger and judgement, telling me I was in the wrong by choosing how I responded to someone saying something unkind about my facial difference, or how I responded to someone who spent several seconds – if not minutes – staring at me. Instead of hoping for the best and assuming I have a level head on my shoulders, I get criticized for standing up for myself in a hard moment...and in a way I deem necessary.

7. You may not agree with how we choose to advocate for ourselves, but it may be just right for us in that particular moment.

Like I mentioned above, I've had people tell me I was in the wrong for advocating for myself in certain situations. For example, during my online dating experiment one man wrote to me and said, "Oh, what happened to that beautiful face?" I replied with wit and humor, "Oh my gosh...What do you mean? Is something wrong with my face?"

People instantly started writing comments on my Facebook post about the experience. Most were supportive and understood my humor, especially when people who were following the online dating fiasco knew I was open and blunt about my birthmark in my pictures and my profile. But one woman told me I went about my response in the wrong way.

Once again, while most people were supportive, there were a few people who weren't – and who let it be known. In the end, I can only make the best decisions I can with the knowledge I have in the moment. And that's just what I'm doing.

7. I believe in the form of accountability, but there's a time and place.

I'm only human. I won't always get it right when I advocate publicly and privately. But while I share stories online, if you have feedback – stop and think before you hit the "post" button. Is your comment better shared publicly, or would it be kinder to show a little grace and message me privately so we can have a constructive conversation? Are you leaving the comment to be "right," or because you genuinely want to give feedback to help me grow and learn as an advocate? Before you message me, it may be a good idea to write your email, sit on it, reread it the next day, and then send it. But also, remember I do have people in my life holding me accountable. I rely on my mentors, my parents, my best friend, and fiancé  for guidance. They're honest and blunt opinions are the ones I trust the most, and the ones I constantly seek in hard situations.

8. We don't always have to be nice when we advocate for ourselves.

While I try to stay kind in my responses to people's comments and stares, there's nothing that says I have to respond in a kind way. Some situations do call for a little bit of sarcasm and sass, and while I rarely ever tap into them and can only count on one hand the amount of times I've used this method, I have the right to implement those tactics when I deem necessary. My heart and feelings come first, and sometimes responding to unkindness with a sarcastic joke is more necessary than a smile.

9. Please don't guilt us into being friends with your children.

Are you trying to find a mentor and friend for your kiddo with a medical condition? Someone who's been through the hardships first hand? That's amazing! I wish I had that as a child and teenager and I totally see the value and beauty in that, and I wish I could be everyone's friend. While I love befriending others with the same conditions, and helping kids on their journey, I can't always be everyone's "go-to." If I end up being great friends with your child one day, yay! I'm so glad. But please don't force it, try to guilt me into it, or get angry if my life doesn't allow it at that time.

10. Sometime's we have to put up boundaries.

Did you know that Facebook only allows people to have 5,000 friends? Because of this reason alone, sometimes we won't add people with the same condition as friends. Many of us also have public pages people can "like," and you can see the same content you're looking for on that corner on the web. (You can find my Facebook page here.) We also want to have a safe space online, where we can talk about random life events we may not want the public to see or know about. We may want to post pictures of children in our lives, while wanting to remain confident that we haven't added any unsafe strangers to our friend list. In many of my talks, I discuss internet safety after having my image stolen  – and I believe in practicing what I preach.

11. We're not your only option.

Did you know that there are likely Facebook support groups for your condition that you can join? Depending on your condition, there may even be support groups in your hometown. Sometimes nonprofits even host events once or twice a year in different cities so you can connect with people in similar health conditions, and to learn about your conditions. I know the Vascular Birthmarks Foundation alternates between the general LA area and New York area every year, and they even have top specialists in the field for port wine stain birthmarks, hemangioma, and Sturge-Weber syndrome, surgeons, and dentists that you can make free appointments with during the events. Usually this event takes place every October.

12. We're only human.

If you think about it, this generation of social media has redefined what it means to be a health advocate. Not only are we advocating in doctor's offices or giving speeches, but we're advocating online and in a digital permanent marker. In a way, we're the first of our kind as we manage our own health, situations that may arise in the doctor's office or when we go out in public, and also online. Many of us are learning as we go, and we're doing our best.

13. It's OK if we decide to "quit," and even we I don't, you're welcome to join us in the advocacy world!

If you want to share your story and join me, your perspective and story are welcome! There's always room at the table for you. Your story is yours, and you can share it or keep it private. That decision is all yours, and both choices are perfectly OK!  The same goes for me. Occasionally, I may be on the quiet side and take a sabbatical. One day I may even decide to switch gears and talk about other important life topics. I'm a woman of many talents and interests. From baking to human trafficking, from photography to travel, who knows if one day I may choose a different focus.

For now, though, I'm continuing the journey as a health advocate. I love what I do and I've enjoyed the journey as an advocate for people with port wine stain birthmarks, Sturge-Weber syndrome, and facial differences. I'm not perfect at my job or in my work, but I promise you that I'm doing my best as I spread awareness about these conditions, and as I teach about kindness.

Thank you for being a part of my journey, and thank you for showing me kindness I spread awareness and advocates – both when I get it right, and even when I get it wrong.

The Travelin' Chick,
Crystal

13 Ways People Stare at My Facial Difference – And How I Can Respond (With GIFs)

If you live with a physical difference, you know the stares.

Go into store? Someone's staring.

Go into a restaurant? Eyes are on you.

Visit a new church? You won't leave the parking lot without another glance lingering a little too long.

Living with a facial difference my whole life, I've come to realize there are a few specific types of
stares:

1. The curious stare.

2. "Ew...What is that?"

3. "I'm so scared of what I'm seeing."

4. "I have the same condition, and I can't believe you do too!"

5. "I know someone else with the same kind of birthmark you have, and I think you're so beautiful."

6. "Look at her face" mockery stare, with a side of laughter to go along with it.

7. The accidental  "I don't realize I'm staring at you" stare, which may be them just gazing your way – without even noticing the physical difference.

8. "I know you just caught me staring at you, but I'm gonna keep staring at you anyway." With this stare, they may not of realized they were doing it initially – although some are intentional from the get-go. But eventually they get the "Oh, oops!" look after they realize they're caught, or they realize what they were doing. But even though they now know what they're doing, they keep staring anyway
and become intentional with the act.

9. "I'm trying to understand what I'm seeing right now"  – which is more common from children, with a dash of the curious stare. They're curious, they may just not realize just yet that staring isn't a kind way to go about their curiosity, because someone just hasn't taught them that just yet.

10. "You poor thing."

11. The "motion detector" stare – when the person's stare follows your every move.

12. When people invade your personal space, while staring at you – following you like a shadow,  taking every step you take, staying a little too close too long.

13. The never-ending stare.

I'm sure there are many types of stares I'm not listing, but those are the main nine. And because there are several types of stares, there are several ways I can choose to respond. Depending on the kind of stare I'm receiving, depends on which reaction I pick.

1. Make funny faces at them.

2. Ask, "I noticed you looking at me today. I'm terrible with faces sometimes – do I know you from somewhere?"

3. As a child, my mom gave me some the best advice that I carry with me to this day. At the age of 5 or 6, she couldn't prevent me from seeing a man stare at me. Whatever the situation was, she couldn't stand in front of them to block my view, nor distract me. (And she always tried her best, and still does...Even though I'm taller than her, and can see stares above her head.) Quick witted infused with wisdom, she told me, "I know what they're doing is uncomfortable and unkind, but what if you smile at them? What if they're having the worst day of their life today, and you're the only one to smile at them? What if you end up making a friend?"

4. Unleash all the swag.

5. Wave at them if they're in another car next to you at a red light, or if they're several feet away from you.

6. Do a stare down. Depending on my mood and energy level, the type of stares I'm receiving, or if I've had a lot of comments and stares that day – this one can be more common than I care to admit.

7. Introduce yourself.

8. Walk away from the situation, if possible.

9. Go for a shock factor.

10. Act like a princess. You can do a nice hair flip, or wave like a royal – like Anne Hathaway in "Princess Diaries."

11. Make more funny faces.

12. If someone's staring is making you super uncomfortable, write them a note. I one wrote a man a not and explained it was OK for him to be curious, but not OK for him to stare at me, and that he needed to see me as a person – not a birthmark.

This is probably the boldest response I've ever given, and the most controversial. But, the people who disapproved weren't there, and I probably could have done better with some of the details before hitting the "post button." I also shared the note with people close to me, and explained the situation to them before asking the waitress to give the note to the man. Had they told me it wouldn't be a good move, these are the people I trust to call me out on it and who have a right to say so...But given what was happening, all agreed it was appropriate.

13. Ask them if they have any questions.

14. Tell them they should see the other guy.

15. Ask, "You keep staring – is there something on my face?"

16. Ignore them.

17. Sing a song. My stanza option? The song that reads:

"I was looking back to see if you were looking back to see
If I was looking back to see if you were looking back at me"

19. Do a little dance.

20. Bluntly tell them they're being awkward.

21. Tell them to stop staring. And depending on the situation, you can either ask kindly or be firm.

22. Make a joke – but don't make it self-depreciating. I usually have birthmark jokes ready to go for a variety of situations.

23. Tell them to take a picture because it lasts longer.

24. Hold a sign up to your face with information about your illness, or follow these celebrity's lead and hold up a sign about organizations people should pay more attention to.

25. Often when people stare, they forget about boundaries and personal space. If that becomes an issue, just do this...

However you choose to respond, know that it's OK. If you share about these experiences (whether it be about stares or comments people make about you) on social media or publicly, and you share your response, it's possible people will try and tell you that you were in the wrong for how you handled the situation. The more I share about these experiences, and the bolder I become in how I stand up for myself, the more "you were wrong to do that" feedback I get...But that feedback is 99.9 percent from people who don't have a physical difference, who don't know me very well.

And here's the thing – you have the right to stand up for yourself however you deem necessary. You know the full experience in a way others don't, especially if they weren't there. You have the right to be as bold as you decide is appropriate. It's OK to tell people, "This isn't OK" – whether you say it with humor, boldness, or bluntness.

If you live with a physical difference, how do you respond when people stare at you?

The Travelin' Chick,
Crystal

All Images Courtesy of Giphy.com

How My Fiancé Chooses to Embrace Me – and My Facial Difference

It was obvious on my dating profile. It was shown in all my pictures, it was written within my “about me” section. I was intentional about it being obvious.

Granted, I was doing an online dating experiment to see how people react to those with facial differences, like mine – a port wine stain birthmark that dwells on my left side of my face.

I remember one of our first phone calls, just a few days before our first date and he bluntly said, “I don’t want to waste my time, and I don’t want to waste yours – but I need to let you know I’m looking for something that could lead to something serious. I don’t want to just date for fun.”

I knew this was my opportunity to throw in my “I don’t want to waste anyone’s time” line.

Responding, I told him, “That’s what I’m looking for too, so we’re on the same page. But since I don’t want to waste my time either, nor yours – so I need to make sure you’re OK with my birthmark.”

I can’t remember exactly what I said after that. I’m pretty sure I threw in a blunt, “If you’re not OK with it, that’s OK. You’re just not the guy for me – because I don’t feel the need to hide it, or hide who I am. And I won’t change who I am for a guy’s preferences or expectations.” But maybe I just thought that, maybe I didn’t say it. I was nervous to be so bold, but it was important. Did I warn him of the comments that could come? Did I warn him about the treatments I have to undergo to make my birthmark stay healthy? Or did that come later?

I can’t remember all that I said, but I do remember ending it with something like, “Are you OK with it? Do you have any questions about the birthmark, or about life with it?”

He didn’t understand why anyone would see it as an issue, or as a valid reason to not date a girl.

Our first date lasted over eight hours. And since that call, we’ve spent hours on the phone. We’ve seen each other every two weeks since our first date – and we’ve gotten engaged. He’s even gone with me to two of my laser treatments – one where I stayed awake, the other where I went under.

Growing up, we took friends with us to almost every treatments. It always made it more fun, more of an adventure. As an adult, I’ve gotten pickier on who I want to go with me. Letting someone see me get lasered (which can be quite painful) and then to let them see the initial affects of the treatment can be such a vulnerable thing – especially since I don’t usually leave my house for nearly a week after undergoing one of them, depending on the swelling and discomfort I’m experiencing.

I remember him asking to go to one for the first time. At the time, he was my boyfriend, but I knew that was a whole level of new level of vulnerability for our relationship – and it was up to me and if I was ready for that. To an extent, I was. I wanted him to go and experience “real life with Crystal Hodges,” but I was afraid of also letting him go to a treatment – letting him see the process and the pain, to let him smell the burning flesh and hair.

What if it was too much for him? What if he’d go, and realize this wasn’t a life he wanted?

Sometimes it does feel like a lot to ask of him.

The stares.

The comments.

The migraines caused by the effects the birthmark has on my brain. 

The treatments. 

The occasional smells of burnt flesh and hair.

The swelling.

The risk of growth.

The risk of him being accused of abuse – both potentially serious accusations, or flippant.

How is it not a lot?

But he knew from the get-go. He chose to jump in, he has chosen to stay.

In the midst of my fears, he’s gone above and beyond.

Knowing my tradition that started as a child where I take a stuffed animal for every treatment, for his treatment experience, he brought me a handmade bear he commissioned someone to make me. He took selfies with my mom as they wore the “Willie Wonka” glasses they had to wear to protect their eyes – because that’s what we do every time. And even though he lives three hours away from me, he came home with us that weekend and just held me as we binged my favorite movies and TV shows. He didn’t even care that I fell asleep on and off throughout our viewing experiences.

Yesterday was my second treatment since our treatment began, but this time I was being put under. Knowing I was feeling anxious and nervous, he put his own nerves to the side and rubbed my feet as I waited. He even made my stuffed animal dance to the music I was playing, knowing he’d get laughter out of me.

He started showing “in sickness and in health” at the first treatment I invited him to, months before he asked me to marry him – and he continues to do so every day since, with every treatments since.

He embraces who I am, as I am – lasered or not lasered. He loves that I love the color purple, and sometimes he’ll even wear the color purple to color coordinate with my natural look. He laughs with me as I make new birthmark jokes. He sees me as beautiful when the world tells me I’m not, and when I don’t feel so beautiful after a treatment – and he makes sure to tell me so on a regular basis. He partakes in the traditions I started as a child without even being asked. And when people stare or make comments? Per my request, he lets me handle it depending on how I see fit – but is ready to jump in if I need or want him to.

I don’t have to ask him to stay through it all, because for him, it’s not even a question.

And when I walk down the aisle in the coming months? By desires of my own and also by his request, I’ll be wearing white, but with a splash of natural color – keeping my birthmark untouched and unchanged.

The Travelin' Chick,
Crystal

Why I'll Be One of the First in Line to See 'Wonder'

Born with a facial difference, it's a rarity for me to see anyone featured on the big screen who has a similar storyline to my own – especially with a storyline that is seen in a positive light. When it comes to Hollywood, often people with facial differences are shown as villains, awkward and social outcasts, or are not shown at all. Yet, most real-life people I know with facial differences are beautiful from the inside out, changing the world one life at a time.

When I picked up the book, "Wonder," I couldn't put it down.

When I found out there would be a movie? My excitement soared. (Ironically, before looking to see who was included in the cast, I told my friend, "Oh gosh – I hope Julia Roberts plays the mom of Auggie, the main character with the facial difference. I can't imagine any other actress in that role." And to add to my excitement, the casting department agreed.)

I've been excited for several movies in my lifetime, but never quite as excited as I am for "Wonder."

My story may look different than Auggie's, but the basics are still the same. From medical treatments to the bullying, for the first time in my life, I'll be able to see a form of my storyline portrayed on the big screen.

When I talk to people who have read the book, I've learned how their perceptions of people have changed. I've heard the stories of discussions that parents have had with their children after their nightly reading, as "Wonder" took a turn on their nightstand. I've seen the concept of kindness being refreshed in people's minds and actions.

Books and words have the power to change the world – and "Wonder" has. And now it's about to hit the big screen, this Friday. I have yet to see the movie, but I can only imagine how this movie may impact the world for years to come. I can only imagine the impressionable minds that may see the movie during a family night, walking out of that theater remembering that people are people – regardless of what they look like, or don't look like – reminding to treat others with kindness for the rest of their days on this planet.

Because of the work I do as a speaker and writer with a facial difference, I'm constantly in a variety of Facebook groups for people with a variety facial differences – and "Wonder" has been a big debate on some of these pages.

Why?

Because the actor playing Auggie doesn't actually have a facial difference. He's a "typical" looking kid.

While I do agree that it would have been preferred to have a child with the actual medical condition play the role of Auggie, I don't know what went on behind the scenes in the casting process. Did children with the condition audition? I don't know. Did the directors try to find a child who not only can play the role, but who also lives it? I don't know that either. But the actor choice won't stop me from going to see the movie.

I can understand why some people may avoid the movie due to standing their ground. About 95 percent of characters with disabilities are played by able-bodied actors, and that needs to change. It's an important point to make, an important fact that needs to be changed. But I'm still going.

I'm still going because I want my ticket purchase to tell Hollywood that these movies are craved, that they are needed. I want Hollywood to know that I support the fact that they've made efforts towards showing someone with a facial difference in a positive light – and not just as the bitter, angry villain with a dramatic story. I want them to know that I'm glad they're sharing his story with love and humanity, and not with the stereotype that people with facial differences are "fearful" and "scary."

Photo found on the Wonder Facebook page.

But more importantly? I'm still going to see the movie, in theaters, because I want everyone walking in and out of that theater to know that the story of "Wonder" isn't just a Hollywood story. It's a story that's real.

I want them to know, to be reminded, that people with facial differences do exist. That they are real people...That I am a real person, sitting in the same movie theater, watching the same movie. I want them to know that facial differences go beyond the two hours of a story they just saw on the screen.

As I go to to the theaters to see the movie, I hope that anyone watching the 2017 production that may see me, will realize they can start practicing kindness in that moment.

They can start practicing kindness by not staring at me. By not asking with a rude tone, "What's wrong with your face?" They can show kindness by not calling me "contagious," or comparing me to a villain in their favorite superhero film. Kindness can be shown by not making assumptions about my story.

And better yet, I hope that if the movie leaves them with any questions about life with a physical difference, that they won't be afraid to come up to me and ask out of genuine curiosity and a desire to learn, while using gentle body language and tone. (Not everyone with a facial difference would be comfortable people doing this, so please be respectful if not all people with facial differences are open about their story.)

I hope the audience, including myself, walks out of that theater changed.

I hope that we are all reminded to always, always choose kindness – because kindness matters.

The Travelin' Chick,
Crystal

Are you taking a classroom or group to see the movie "Wonder," and are interested in having me join your group for a discussion? Contact me at: crystal@crystalhodges.com

20 Experiences From Online Dating With a Facial Difference

Y'all.

I'm pretty sure my last blog entry about starting the online dating journey has been one of my most popular entries in the comment section on social media. I was amazed to how many of you responded, related, and told me, "It's about time you joined!" (At least, that's what my mom said when I told her I joined.)

Since the first blog post last week, many of you keep saying, "I'm anxiously awaiting your next post about this."

Well, update: I joined one more site. (But is anyone really that surprised?)

I know, I know. I was already on three. But, since so many people went on and on about OkCupid, I decided I had to experience it for myself. Also, it's a blog project (with a side of hope to potentially finding someone to connect with)... So why not?

As a pro: So far it's the most interactive site, and out of all four of the ones I'm on, it's the cheapest. Not only that, but after a week on the site, it sent me a map showing me my top five states and countries that I hear from, and my weakest states and countries I hear from. Oh - and if you're considering online dating - you don't have pay to receive and send messages, like so many other sites require you to do.

I'm still not sure where it ranks with all the other sites, but it does have a variety of features most don't seem to have. (At least, in regards to the other three I joined.)

Anyways, here's the online dating update you have all been waiting for.

It's another list, but a little more in-depth. Odds are, not all entries will be in the form of a list. And, if I continue to get this much content every week or two, there will be many more entries to come.

1. I think I'm too sassy for online dating. One guy told me, "I miss your voice." I replied, "You've never heard it."

2. Sending me a message for the very first time, a guy told me, "Sexy - what happened to your face?" I don't even know where to begin with this one... I'm not sure that he realizes those two phrases don't really go together, and that they feel rather contradictory. Also, not all women feel comfortable with a stranger calling them, "sexy." (Or at all, rather.)

3. Another guy sent me a message for the first time. His message read, "FYI, you can use dermablend to cover it." (Referring to my facial birthmark.) I messaged back, "FYI, you clearly didn't read my profile." Told you, online dating is bringing out my sassy side. But, I did hold back from pointing out that "dermablend" should have a capital "d" since it's a name brand. It took all the restraint I had.

4. One guy wanted to meet for a date. He wanted to go for a movie and dinner. I asked, "What about coffee in the afternoon?" He agreed... and proceeded to tell me I'd have to drive to his city 45 miles away to pick him up as he didn't have a "working car."

Bro, it's 2017. Borrow a car. Call an Uber. I'm not going to get in a stranger's car, nor am I letting one in mine.

5. When someone messages me, but they don't show their face in their photos, I don't respond. I feel that if I can share my face in such a public format and be upfront about my birthmark, I don't need to reply to someone who can't show their face too.

6. Chatting with one guy, he told me, "I'm a lot shorter than you." I replied, "Yeah, maybe. But I'm a lot more purple than you." Quick-witted, he messaged back, "You don't know that. I could have my whole body tattooed purple." Instant kudos to him for rolling with my birthmark joke.

7. Texting with a guy, he wrote me and said, "You're one of the best texters I've seen in years." Jokingly, he continued with, "That alone is engagement ring worthy."

What can I say? I'm quite the texting catch.

8. To add to my list of conditions other guys have been open about, I've now also seen profiles that mention missing limbs, diabetes, and facial differences - including one guy who has the same birthmark that I have. Talking with him, he said, "I've tried treatments and read blogs from other people with the same condition." Little did he know, he'd make it into mine.

9. When I glance at people's profiles, I've realized that many 60-something year olds think they can pass at 25 year olds.  Although, I'm sure plenty of women are not honest about their age as well.

10. I've had a couple of guys express that they'd like to take me on a date. For some, asking me out was their first-ever message to me, and for others, we had already been talking for a few days. Yet, anytime a guy asks me, I freak out, "What if they're a serial killer - or something else super dramatic?" Then I rationalize, "Wait. I'm online on the same app, and I'm not a serial killer."

Realization: I think I've seen too many episodes of "Criminal Minds."

However, for a variety of reasons, I still have yet to agree to anyone who wants to take me out. So far they've either been a bit too pushy with too many red flags, it was too fast for them to ask, or it just didn't feel right.

11. Chatting with one guy on the phone for the first time, he was instantly ready to delete his profile 30 minutes into the discussion. And he kept trying to convince me to delete mine. I kept insisting that I had to meet him first and get to know him before I made that decision - while not wanting to also explain, "I'd like to meet someone - but this is also for a blogging project." Regardless if I were blogging about the online dating experience or not, that's a bit fast to ask someone to delete their profile.

12. Having a retired correctional officer as a dad has not gone to waste. All my childhood training on types of tattoos has come in handy as I sift through profiles. Tear drop tattoos on the face? Spider web tats on the elbow? Who knew this knowledge would come in so handy in my adulthood.

13. As I was talking with a guy who messaged me, this is how our conversation went:

Him: What do you do for a living?
Me: I'm an editor.
Him: Ohhhh that is very good.
Me: Yeah, I like it.
Him: I like that!!!!
Him: Wow.
Him: You are very very intelligent!!!!! Very good.
Me: Thanks. It's really just like a grammatical Easter egg hunt.
Him: You're very positive, I like that. And you have a very nice spark. I love that!!!
Me: Thanks.

Eventually I let the conversation die down. I couldn't handle the redundancy of, "I love that," or "I like that." He used those phrases so much, it felt a bit condescending. (There were also a few other annoyances.) Eventually he started messaging me every hour, saying "hi" and "hello." Growing tired of him blowing up my phone through the app, I took away his "chatting privileges" - an option Zoosk offers that I'm incredibly thankful for.

14. After a guy asked me, "Do you know any Spanish?" I explained I only knew a few words here and there - I didn't know it well at all. And I asked if he knew the language. He explained that he was Mexican and that he did know the language. Shortly after, he asked, "Can you tell me in Spanish?" I didn't know what to say, so I said nothing at all. Language wise, all I currently have to offer in Spanish is basically, "Hola quesadilla, underwear, and chicken taco. How are you?" (Although, I really do want to learn more.)

15. Many "men" aren't very gentlemen-like. Real talk. I know I'm on the more conservative side on the sex issue. Just writing number two on this list made me feel awkward, and I doubled checked with several people if it was OK to share the comment that was made to me. Once I had the approval of a pastor's wife, I decided to just go with it and share the blunt realities of this experience.

Yet, I'm not sure why a good chunk of men think they can get away with some of the personal and invasive questions they ask. I've even found myself bluntly asking, "Why is this such a common question on these stupid sites?" Four times in one day I was asked the same question, being told that I hadn't had "certain experiences" yet, that they wouldn't date me. That it "wouldn't work out." Not to be redundant with a line I used in my last blog entry, but... #ByeFelicia

16. I feel like I'm paying for guys to treat me disrespectfully. From comments about covering my birthmark with makeup to other innapropriate topics... A true gentlemen would not say, nor ask, the things 98 percent of these men are saying and asking. And, to clarify, it doesn't matter if I'm on Christian Mingle, OkCupid, Zoosk, or Match.com.

17. A guy messaged me on one of the apps. As we got talking, he asked me if I went to a specific high school - and I had. Turns out we went to high school together. I was surprised he remembered me, as I don't think we ever talked... Then again, I guess I do have an unforgettable face. ;-)

18. One guy's initial message read, "You are so beautiful. I love the color purple, and it looks so good on you." Another guy told me I had an "exquisite look." Again... I love the instant comfortability that some guys show.

19. When you share that you're online dating, people on your Facebook friend list (who don't even know each other) bond over digital "romance" stories - the good and the bad. Also, the singles randomly appearing in your inbox can turn out to be a nice surprise. (I even have had stranger a in Spain who read my blog email me about my singleness, wanting to set up Skype conversations if I am still "looking for a relationship.") If anything, I'm glad people have reached out - whether it was to inquire about putting an end to my singleness, or to relate to the tales never-ending.

20. I'm starting to think it would have been much easier to ask friends on social media if they had any single friends they thought would be compatible. There has to be a better, classier way to find someone.

Nearly a month in, I'm still trying to figure out what I think about online dating. There are days where I don't like it - at all. There are days where, like I said above, I feel like I'm paying to be disrespected. Then there are days where I can't help but think, "This is awesome!" as I chat with a really kind guy, who is more gentlemen-like than the majority I've interacted with on all the sites combined.

Yet, if I'm honest... By seeing the reactions from family and friends about my online dating experiences, I'm starting to wonder if just doing a basic, classy, non-desperate post of, "I'm single and ready to mingle," is all that it could potentially take. Who knows - you might see that kind of post and reply, "Oh, I know someone who is perfect for you!" to, "Hey. Remember me? I'd love to chat and see if there's something there worth pursuing between us."

And, as I relay all the stories and experiences to my mom, she even pointed out to me last night, "You know what's interesting? It seems, so far, that the guy you're interested in the most isn't even one you met on any of the sites."

Maybe, just maybe, being honest and saying to the world, "This is where I'm at," is all it takes.

The Travelin' Chick,
Crystal

25 Insights to Online Dating – From a Gal With a Facial Difference

You guys. I did it. I joined a dating site.

Wait.

Actually, I joined three.

About 75 percent was due to thinking, "This would provide great blogging content," and 25 percent was because I'm curious to see what the odds are I might meet someone. I've done a lot of traveling and have made my way around the world, but I've never had much luck in the dating department. And, now that I work from home, I don't leave the house as much as I used to, which means I don't meet a lot of new people - unless I'm out speaking, traveling, or at the Dutch Bros or Target check-out line.

I've been trying to decide when to reveal my new online dating hobby. Should I sign up, complete my subscriptions to the sites I joined, and then share on my blog? Or should I share as it is taking place? But then my friend told me I should do it as I go along, to help keep people enlightened on the experiences - and entertained. (She also told me, "then you can do a highlight reel once you've married Prince Charming" - so stay tuned for that one, y'all.)

While doing some research, some sites recommended not to join more than one to two sites at a time, in fear that the subscribed member will be overwhelmed with too many fish in the sea. But real talk. It takes a special kind of guy who will date a girl with a facial difference. And he has to be a Christian. I don't think I'll be swimming in an overstuffed ocean, so two weeks ago, I joined three sites (in this order):

1. Christian Mingle

2. Match (#2 Dating Site)

3. Zoosk (#1 Dating Site)

Christian Mingle was oddly silent, which is why I added Match to the list. But curiosity for the number one dating site also struck, and that's where I decided to add one last site.

While creating my profile, I mentioned I didn't care where people lived, that I wanted a Christian man, and my birthmark is obvious in my profile pictures - and I even mention it in my profile.

The concept of online dating has always been an odd one as someone with a facial difference. There was fear of honesty, "Will someone steal my image and turn me into a meme again?" But, I also embrace who I am as I am, and my birthmark is usually pretty good about weeding shallow people out of my life. After hearing from women who have been in makeup since the age of two, and women who have been forced to wear makeup to bed by their husbands - I needed to let the men know that this is me, and I don't feel the need to hide how God has made me. And, as I made the decision to be bluntly honest about my birthmark, I thought, "Well, I've already been a meme once." And I don't want to live in a mindset of fear. I wanted to be me, without the filters - whether they be digitally or cosmetically created.

My profile bio slightly varies from site to site, but here is the core of all three:

"I'm a 'God-sized' dreamer filled with humor, compassion, and adventure. I'm a frequent baker, photographer, and traveller. My beat-up passport has taken me to 14 countries - most recently to Taiwan. American Sign Language is my second language, although I'd love to learn Spanish next. I make it a point to laugh every day - even if means laughing at myself...because hey, laughter is the best. My favorite color is blue, unless glitter is an option. Then it's glitter...always, always glitter. 

Currently I'm an editor for a news organization in the LA area, but I work from home. Distance isn't an issue for me as I can take my work with me wherever I go.

I'm not like most gals. I mean, no one is exactly the same - which is one thing that makes this world such an incredible, beautiful place. We're all different, I just wear one of my differences on the outside. I have a purple birthmark that has been hanging out on the left side of my face my whole life. My birthmark doesn't define me, but the tales are never ending as it continues to help me grow as a person. I'm 100% open about it and don't feel the need to hide it. I mean, seriously...Purple is one of my favorite colors, and I get to wear it every single day. What's not to love? ;-) 

I'd love to meet someone here who loves a good adventure, has a good sense of humor, and who values their family. Also, someone who sees the beauty and importance of putting God in the middle of the relationship."

My profile photo on all the sites.

As I spend time online, connecting with a variety of people, here are some of my thoughts and experiences as an online dating newbie:

1. Online dating makes me feel like I'm Amazon shopping for men. Though, I have been told I'm a pro and finding awesome things online... So, maybe the odds are in my favor. But, I figure I've met many of my dear friends online - why not a potential future husband?

2. My photos of my birthmark made a 48-year-old man "tear up," but that's OK. He's an "emotional man." (I'm still trying to figure out why a 48-year-old man was viewing my profile, as a 25-year-old.)

3. The Christian dating site is a lot quieter than the non-Christian dating site. In the back of my mind, I can't help but wonder if silence is why so many Christian singles I know (including myself) are struggling to find someone.

4. Within the first discussion, a man insisted to know how much cooking and cleaning I'd do if we got married, and how much money I was willing to contribute for buying a house. When I refused to answer, he replied, "I guess you expect the man to pay for everything." Replying, I told him that I felt he was wanting to get to know my assets before he got to know me, to deem if I were dateable. I then decided I wasn't going to reply to any more of his messages.

5. After being asked if I wanted to have children one day, a man went on a long rant about how most women only want children so they can "feed off the man the old fashioned way..." and that we need to make sure we don't overwhelm ourselves in the "awful economy."

6. I've noticed that most men don't like showing happiness or joy in their profile photos, and many "forget" to put on a shirt. Unless their shirt was stolen, then I can't blame them for looking mad. (Smile guys - your smile is much hotter than an angry looking man who forgot to get dressed.)

7. It's interesting to see what people pick up on their first message. For one, it was that I'm bilingual in sign language. One man also replied that my username made them laugh, and that purple is their favorite color. Both won instant gold stickers for reading my profile...but the second guy got even more props due to instant comfortability with my birthmark.

8. Holding a conversation with a guy, he asked me, "Have you ever dated a black dude before?" But, it wasn't his first time asking me that question. So, I pointed out his repetitiveness and added, "Have you ever dated a gal with a half a purple face before?" Match.com showed he read the message, but he never replied.  Oops.

9. I felt very awkward sharing with anyone I joined the online dating world. Two weeks in, I finally shared about it with one of my closest of friends, and then a few days later I finally told my mom. After those initial two people, I the nerves were gone and I didn't mind telling anyone else.

10. Others are open about their medical conditions on their profiles as well. And it doesn't matter whether they have an "invisible" condition or a physical difference. So far I've seen guys open up about their eye patches (due to cancer), vitiligo, epilepsy, and autism.

11. At least half the men that I've started a conversation with have wanted to instantly figure out our lives together before we even know each other's names. Reading their quickly written, passionate messages, I'm left on my end with a loss of words.

12. A man wrote on his profile that his aunt, who is a nun, visits regularly. I love a guy with a close family, but I'm still perplexed as to why that was news worthy on his profile.

13. It's awkward to see someone you know on the same dating site. It shouldn't be. You're single, he's single... and it's 2017. Although, that may just be an awkward thing for me, considering I'm always awkward around people I have a slight interest in - and that includes this guy.

14. One guy shared on his profile, "I don't judge women by their appearances." But, on a lot of these dating sites, you can get very specific about the kind of person you're looking for. According to his list, he was very particular about the kind of woman he was looking for, ranging from her height, hair and eye color, to her body type.

15. Online dating makes me question my writing abilities, from my own profile to the messages I send. Do guys not reply because they haven't fully subscribed to the site? Because my profile says I'm an "editor," and I have a typo in the mix? I don't feel natural when I'm in the online dating world, and find myself often fumbling over my keyboard.

16. I was chatting with a nice guy, until he told me he produces porn. #ByeFelicia

17. When I asked one man about his faith and if he went to church, he told me, "I do have a church in the area. (I) was more involved in attending services while in a relationship. Maybe (I) just need the direction of a good woman holding my hand and guiding us back into the church together." Yeah, uh, no...That's not how this works. That's not how any of this works.

18. Grammar matters to me more than I realized was possible. (Proof: I edited the message I shared on number 15 before sharing it on my blog.)

19. Most men don't pay attention that I'm an editor, or maybe they don't care when they type their messages without punctuation or capitalization. And when they message me, I have a hard time turning my editor side off when reading what they send. But, I'm the kind of gal who, when sees a typo on a website, emails the person running it to let them know there is an error.

20. I've realized it's hard to know when you should give your number, if asked, or when it's OK to ask if you can send yours.

21. Apparently every man online is "funny," according to every profile that is filled out.

22. It's hard to balance people wanting to add me on Facebook, and my thinking, "But I want to blog about you..."

23. On these sites, they have you judge if you want to meet someone by their photo alone. They show the photo online, not sharing their username or giving you the ability to view their profile - until you rank you want to meet them. It feels very shallow to me to judge if I want to meet someone by their looks alone, like some of these sites ask you to do. A guy's appearance is not why I'm on there. Looks are ever fleeting, their foundation and core of who they are is what lasts.

24. On all three profiles, I told the dating sites I only wanted to date Christian men. I didn't mark any specifics on how much he had to earn, his body type, height, hair color or eye color...I didn't even care about distance. ('Cause you know, I'm the "travelin' chick.") Yet, the two non-Christian ones are constantly sending me profiles of people with different religious beliefs, atheists, and agnostics... Which I think is super odd.

25. Several guys have written to me to ask, "What happened to your face?" This is another sign that many didn't read my profile.

Two weeks into the online dating world, that's pretty much the basics of where I'm at - with both my experiences, observations and feelings.

...But don't worry, I'll keep you posted as I go from an online dating novice to becoming a pro. ;-)

The Travelin' Chick,
Crystal