Friday, May 31, 2019

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

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