Tuesday, September 24, 2013

Stranger Reactions

This is right before the treatment
started...I know, I know...I got to
wear some pretty stylin' eye protectors.
This last Friday I was able to have another laser treatment on my birthmark.  Although I've had about 35 treatments, I'm always amazed to see how insecure they often make me feel.

I know to most people, my birthmark gives me a unique look that isn't very common.  People tell me this all the time by their stares alone.  However, I am use to my birthmark.  It's my normal.  Or, at least, it's my normal until I have a laser treatment...And then my confidence is out the window as insecurity and self-concious thoughts invade my mind.  After a treatment, I am very aware that I have a birthmark that covers half my face, both because of physical discomfort and the image I see when I look into a mirror.  I am also a lot more aware and sensitive to people's stares.

When I have my laser treatments, I try to spend the first two or three days hiding out in my house as my dark purple face covered in slimy Vaseline has time to heal.  If I had it my way, I wouldn't leave my house until my birthmark was back to it's normal coloring, or at least until I could wear makeup comfortably.

Fun fact: If you were to go with me to my
appointment, you are allowed to go back
with me and watch the treatment...which only
takes about 10 minutes.  Doesn't
my mom rock the look??
After a treatment, I avoid going into situations where I have to be around a lot of people.  The idea of going to school - or even to church - is something I dread...and will often skip if I can.  Usually I'm okay with smaller groups of people, but mostly small groups of very specific people that I am just about 100% comfortable with.  (If you saw me anytime before Monday, know I feel extremely comfortable with you!)  Also, if someone wants to take a picture or video with me in it - forget about it.  Except for my initial "here I am after my treatment photos", until my skin is back to normal, or until I can wear make up, I really try to avoid any visual recording devices.   

Even though I would love to hide out after my treatments, life apparently goes on and I don't always get to hide out.  I still have to go to school and I have to go to work. (Oh yeah! I got a job!  One that I love, by the way!  More on that in the next paragraph.)  So, I put on my big girl pants and attempt to wear a face of my normal level of confidence.  (Although, I'm not sure if confidence is what comes across to others, or if others see the opposite of my goal.)

Recently I was hired at a local elementary school.  I go every weekday, usually an hour each day, helping with monitoring children at their lunch time.  Before my treatment, some of the children asked me questions about it, but surprisingly - not very many.  

After each laser treatment I have, my birthmark is discolored.  It's a much darker purple, and doesn't really look too great.  Luckily this only lasts about a week or two, but I definitely get more questions after a treatment in comparison to when I look like my normal, unique, self.  Today, four days after my treatment, was no exception...Especially since I work with young children.

Today I got to work an extra hour at the school.  Within my two hours of working, I think I got asked more questions about my birthmark by all the children than what I think I've been asked during my whole life.  Being asked many questions, I hope I answered the kids clearly and in a way where they understood what I said, and I hope they felt comfortable enough to ask me all the questions they wanted to ask.  

It surprised me to notice one of my coworkers becoming so upset by the staring eyes and questions I received from the children.  I realize he's not use to other people's reactions like I am, as I saw the children as curious and he saw them as rude, but I am glad I was able to solve the mystery of some of the kid's curiosity.  (Granted, the children really were staring quite a bit and some were making exaggerated facial expressions...And although I'm use to a child's curiosity, questions, and staring, I'm not quite use to handling such a high volume of such curious children at one time.)

I was able to handle 252 laser pulses
this time around!  The laser was also set on a
higher setting in comparison to my previous
As a teacher brought her students to the cafeteria, they were also staring, making noises, faces of shock (some of horror), talking about me, or asking me questions directly.  The teacher took it upon herself to take charge of the situation, and very sweetly explained to her class, "This nice lady has a birthmark on her face. It's something she was born with and she is a very beautiful person with or without it.  You can ask her about it, but we don't need to stare or make noises.  Staring isn't a nice thing to do - as you guys wouldn't want to be stared at either."  I've never even met this specific teacher before, but I was very impressed, amazed, and thankful for the way she handled her class's reactions.  She allowed the children to be curious, but taught them to be curious in a kind way.  (Sadly, I didn't get a chance to thank her!)

Usually a conversation about my birthmark is started by a child asking me, "What is that on your face?  What happened?"  As I want people, children especially, to feel welcome to ask me about my difference, I try to answer the best way I can, "It's just a birthmark.  I was born with it and have had it since I was a baby.  Do you have a birthmark??"  Sometimes the child will tell me about their own birthmark, or about their sibling's birthmark - and then the conversation ends.  However, sometimes the conversations go a little further.

Here is a handful of the questions and comments I received this afternoon (most of these are from the 6 and 7 year olds I met):
  • "Is that really a birthmark?"
  • "Oh, I thought that was makeup or paint or something."
  • "You were stung by a bee...Huh??"
  • "Can I get one?!??!"  (And no - this question wasn't asked in a way indicating, "Is that contagious or something?"  It was asked with genuine indication that the child wanted to have one too.)
  • "Did someone hit you?"
  • "I saw this thing on TV that could help you."
  • "It's too big."
  • "Does it hurt?"
  • "Will it ever go away?  Do you want it to go away?"
  • "You were born with it????"  Then looking even more confused, the child continued, "Wait...You were a baby??"
  • "Were you bit by a spider?"
Again, those are just a few examples of the many conversations I had today...Many of which left me laughing - a lot!  (Although, I must say, I think my favorite conversation from my day was when a 6 year old little girl offered me medical advice.)

Not only do my treatments bring questions and comments from children, but from adults as well.  Sometimes the questions are asked by strangers, some are asked by teachers, family members, or friends.  Here are some of the questions I've received this week from the older population, along with my answers or response:
  • "How many treatments have you had?  How long have you had them?"
    • On Friday we estimated that I've had about 35 treatments.  Possibly more.  I've had them since I was a baby.  I took about a 7 or 8 year break starting when I was 11 years old because the doctors started to have me stay awake for the treatments - and quite frankly - that's a bit scary and uncomfortable for such a young age.  In addition, the treatments weren't working as well as they had in the past, so it also wasn't worth continuing.  Now that I have continued having the laser surgeries, I can have them about every 8 weeks, but it can take up to 6 months to see the complete success of each treatment.
  • "Are the treatments something that your parents persuade or pressure you to do?"
    • I can easily answer this question with a no.  My parents do not persuade or pressure me to have these treatments in any way.  In fact, when I was 11 years old, I told my mom I wanted to stop the treatments.  She didn't fight me on the decision at all.  Her mindset has always been, "It's your body.  I'm not going to make you do something you don't want to do - especially if it's not a necessity."  When I chose to continue when I was about 18 or 19 years old, my parents were supportive once again.
  • "I've had laser hair removal surgery."
    • Sometimes I get this response and I think it's just because people feel awkward and don't know what to say to me.  That, or maybe people think it helps them relate to me or that we have something in common.  I've heard that laser hair removal surgery isn't comfortable either, but that's not exactly the same kind of surgery that I have to have for my birthmark and I don't think they quite compare...for more than one reason.
  • "Do you get acne on your birthmark?"
    • Twenty-two-years later, even my mom still has questions - as this one was from her.  Interestingly enough, I get a lot less on my birthmark in comparison to my "normal" skin and areas of my face.  
  • "Does it hurt?"
    • This is a question asked by all age groups.  My birthmark does not hurt.  The laser treatment and the first week or so after the treatment, however, does hurt and leave me feeling sore.  Sometimes I even feel sore inside my mouth from the treatment on my cheek.  My face will also start itching once it starts to heal - but I'm not allowed to scratch it for a while.  If I scratch, I risk the possibility of scaring my skin.
  • "Do you have to have the treatments?  What's the purpose?"
    • Technically, no, I don't need the treatments.  I have the treatments to lighten my birthmark. As I age, my birthmark will naturally become darker as time goes on.  The blood vessels that cause my birthmark are also at risk of becoming thicker, possibly causing my skin texture to change.  I'm trying to be proactive in controlling the color and keeping my skin texture as normal as possible.  My lips are also a bit uneven because of the birthmark.  If I have the treatments, this may help my lips become more even.  (Ironically, my uneven lips bother me way more than the birthmark ever has.)
  • "Is the birthmark a genetic component; something that your children will likely have?"
    • From research that I've read and what I have been told by doctors, they type of birthmark I have is not hereditary.  The type I have (a port wine stain) was recently found to be caused by a completely random gene mutation.  This discovery will hopefully open doors to newer and easier treatments, if not a possible cure.  To read more about the research, click here!

If any of you have any questions at all - please let me know!  Leave a comment here on my blog, or email me.  I will respond as best I can (as I don't always know all the answers myself) and as quickly as I can.  I don't mind questions that you may have for me.  It's okay to be curious, and okay to ask! :-)

The Travelin' Chick,


  1. Crystal! I have been reading your blog from the link you posted on FB today in the PWS group. I love it! I have a one-year-old with a PWS and I hope she becomes as wonderful and understanding and kind as you are! I actually just blogged the other day about how I hope she teaches others to accept people who look different with grace, to help them understand, and I love the way you are so open (and understanding!) to others. Anyway, just wanted to say thanks! Kelsey

    1. Kelsey,
      Thanks so much for stopping by and reading my blog! I am sure that your beautiful daughter will grow up to be a beautiful young lady - inside and out! As long as you keep teaching her to accept others - including herself - and to have grace, you have no worries. I would love to check out your blog. I'll try clicking on your name and see if it leads me there. :-)