Friday, October 16, 2015

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,

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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  1. Tour with your accompanying is best option for you. One can plan for an exciting tour easily during their weekend to know more about each other. It is more beneficial if you plan for this exciting tour like with your whole company staff. This will provide you an exciting weekend without any loss of your work.

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  3. The stigma around staring at vascular birthmark deems reduced once you attend one of its conferences. A number of eyes looking at your mark seems normal for they also are going through the same issue.