What if I stare?

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.

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Why I'm not 'Too Ugly for Love' or 'Undateable'

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.

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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.  

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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