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

...And that's not okay.

How I look with Makeup

Waking up this morning, before I even looked in the mirror, I caught myself doing something I've never, ever done. Before even opening my eyes, I was instantly telling myself that today, I am not beautiful.

Yesterday I randomly had a laser treatment as Sunday I received an email confirming an appointment for the next day...an appointment that was suppose to be cancelled.  My treatments are about a three hours drive away - to and from - and I found myself at a crossroad.  Do I cancel my treatment at last minute, even though it wasn't my error?  Do I go and have it done anyway?

For a many reasons I decide to go and have it done.  Before I knew it, I found myself packing a bag and driving the three hours to Fremont on Sunday afternoon.

My appointment went well, and actually, this was my first time going alone.  (Which made my mother extremely nervous, primarily for the drive home after my treatment.)

This treatment, though, was done a little different.  The size of the laser was different and they treated my lip.

I've mentioned in my blog several times that while the birthmark doesn't usually bother me, my lip always does.  It's the physical part about myself that I feel most self-conscious about.

Yesterday, after the treatment, my lip was a little swollen.  I expected swelling...But what I didn't expect?  I didn't expect to wake up this morning to the actual amount of swelling that I had.

Before I opened my eyes I knew...I knew the swelling was bad and I dreaded facing society, but more importantly, I dreaded looking myself in the eyes in my own mirror.

Birthmark with no make-up.

After I opened my eyes, I noticed that my eye also felt a little swollen...But I expected that as that's happened in the past.  (They didn't treat my eye as I'm not comfortable with that idea if I'm awake!)

While laying in my bed I look towards my window and I caught myself thinking, "Oh...Hey...What was that?  What just flew out my window?  Oh, that was just my confidence for the day.  Maybe even for the week."

When I finally looked in the mirror as tears threatened to spill out of my eyes, my suspicion became a fact.  The left half of my upper lip is pretty swollen.

I even walked into my mom's bedroom as I covered my lip and told her, "I have the biggest lip on the block."

As I was driving to meet my friend today, I had a major revelation.  Was I judging me for myself, or was I prematurely taking on the role of judging myself through society's eyes??  The eyes that I knew would soon see me, the eyes that normally react in a negative manner?  Was I judging myself, putting myself down, before anyone else could??

Here I am, this gal who is starting to do sensitivity talks in hospitals and who goes to share with elementary kids about the true meaning of beauty - yet, in this moment, I wasn't even practicing what I 'preach'.  I feel as though I should probably have it more together than I do.

The words that usually make me angry when other people use them against me, I was saying them to myself.

I didn't need society to tear me down this time around.  I was, and am, perfectly capable of doing it myself.

Again, I've never done this before.  Ever.  I don't normally tear myself down in this way.  Enough people already try to do that for me.

If I wouldn't say these things to my friends or to another person, why in the world is it okay to say these things to myself?  Why is it not okay for my friends to put themselves down, but yet, it was okay for me to put myself down?

The thing is, I know it's not okay.  Where was my attempt at holding a positive attitude??  The positive attitude that I do my best to cling onto in every situation life throws my way?

Yeah, the treatments make me nervous.  They're painful and uncomfortable.  The days after, though, are often extremely emotional for me.  I often forget that I'm "different" than everyone else in the world, but these treatments are always a big reminder.

About 30 minute after my last treatment.
I'd post a photo from today, if I felt more
comfortable.  Maybe next time, as my
doctor wants to treat my lip at least 3 times.
And if there weren't medical risks involved,
more than likely, I wouldn't even do the
treatments.  I'm happy with who I am,
as I am.

Sometimes I probably make the treatments seem like an easy-breazy kind of ordeal and I probably play them down, but really, they're hard.  While I'm use to the comments and stares of my normal face, this after-treatment look isn't my normal.  So, when you add an already emotional situation while enhancing something you're already self-conscious about, it's an even bigger struggle.

Today I learned that I really need to work on my self-conscious mindset that I have about my lip.  (And when I write that and read it out loud - it realize that probably sounds kinda lame.) Granted, every woman, every person, usually has something they're not comfortable with about themselves.  Mine just happens to be the lip - and my self-consciousness just happens to be temporarily enhanced, because, well, half of my upper lip is temporarily enhanced and I know this feeling isn't permanent...Just like the swelling.

However, I also realize that unless I figure out a way to deal and cope with this issue, and although the feeling is currently temporary...if I don't gain control of it somehow, I will feel it again next time they treat the lip.  (Which finding a way to deal with it is wwaaaaaaayyy easier said than done, right?)

Often I blog about my stories with the way society reacts to my face, to my treatments.  This time, however, I'm 'tattling' on myself.  I wanted to let you know that for the first time (ever), I stepped into the shoes of the attitude I despise the most.

This time I was the still victim, but I was also the victimizer.  I was the offender...And that's not okay.  I know I am so much more than how I look.  I know I am so much more than my circumstances!  

Maybe I'm a little too honest in my blog sometimes, maybe not.  I don't really know.  All I do know is that I want to share this journey with you in an honest way.  I want to share the good, the bad, the beautiful, and the ugly parts.  I want to be transparent.  

This is just a part of my journey.

I'm so glad that we don't have to feel beautiful to be beautiful.  Aren't you?

The Travelin' Chick,

Crystal

PS: For those wondering why I decided to do the treatment that I though was canceled:

1. No matter what I am doing the treatments.  I could either bail out of this one, and do it later when classes start back up.  Which means I'd take off work and school - or I could do it on a day I already had off.
2. I thought about not doing the treatment because I'm going to the annual Free Will Baptist National Convention.  I fly out on Saturday.  Even my doctor asked me, "Are you okay flying purple??"  The more I thought about it, the more I realized...my FWB friends know my story.  Many follow it and many are encouraging.  I'd rather go visit a group of friends who I know accept me as I am, who are loving and encouraging, than to go and deal with people at my college who are often quite the opposite.  
3. It's hard to get an appointment in this department.  If I didn't go then, I wouldn't have an appointment for another few months.  I already haven't had one in 4 months (which isn't my fault). The longer I wait, the less effective the treatments will be.
4. I'd feel rude for canceling it the day of, as they wouldn't have time to find someone to take the space of my appointment.  

My Lips Will be Sealed

I'm totally stepping out of my comfort zone
(in a major way)by posting this
photo…but this is how my lips
shut if I don't make the extra effort
to close them.

At this point, for those of you who follow me on Facebook and here on my blog, you all know that I am having laser treatments for my port-wine stain birthmark. In just a few weeks I'll probably be having another one.

During the next treatment we're going to do something I don't recall ever doing before - even from my treatments as a child. For the next treatment, I will arrive earlier than usual so they can numb my lip so that my lip will be treatable.

That's right. They're going to "beam up" my left-upper lip.

It doesn't sound pleasant, but we'll see how it goes. (I'm actually a bit nervous about it.)

When looking at my lips, it is easy to tell that they are not symmetrical. My right lip (the side without the birthmark) is smaller and thinner. It doesn't close all the way because the left side is too heavy and bulky. (This may not be obvious to those of you I only see in the digital world as, just like any woman, I look for my favorite photos - which usually avoid showing that aspect.)  If I want my lips to close all the way, I have to make an extra conscious effort for my lips to fully be sealed…and even then my attempt is not always successful.

I've asked my doctor about my lip many times in the last couple of years, "Is there anything we can do to help with this?" The doctors have told me that we can treat the lip, but more than likely there are no other options.

Many of you ask, "Why do you have the treatments? You're beautiful just the way you are!" While the treatments lighten my birthmark - that's not my overall goal at all.

My goal is not, "I'm going to have more laser treatments to lighten the birthmark so I can finally feel and be beautiful!!"…I have never thought like that. I'm okay with my birthmark. Sure, if I didn't have it, I could easily avoid a lot of frustrating situations - but I am okay with who I am…and that includes my "stain". I also enjoy being able to teach others a unique way many people can't.  (Although, I’d be lying if I said I didn’t have my bad days.) If you read my post How Light is too Light??, you'll know that I struggle with the idea of my birthmark seeming invisible, and knowing how light is "too light".  

So why do I continue to do these painful and uncomfortable treatments? As I age, my blood vessels in the birthmark grow and enlarge, resulting in a lot of possible issues that can arise. Without the treatments, my birthmark’s color will darken as I age. It can even get larger in size. As the blood vessels grow and expand, my skin can also do the exact same thing, resulting in a pebble-stone type of texture. My skin can also harden because of the vessels and bleed for no apparent reason, once hardened. I am having the treatments to avoid all of this. Once all this happens - if it happens - the damage is done. There is no going back to smooth, soft, and “normal" skin. If I don't do the treatments and the hardening, pebble-stone, and excess random bleeding starts taking place, I can't undo it.

Another very likely possibility (that has been predicted by many medical professionals) for my future? My lip will continue to grow. It will continue to droop and sag, even more than it does now. Hence starting the process of treating it.

Fun fact? I didn’t know most of this information that until I started to do my own research a couple of years ago.  No one told me the risks of not treating the birthmark.  This is why I started doing my treatments again. This information has been my motivation in the most painful moments of a laser treatment.

When you grow up with a birthmark on your face, many things aren't really explained to you directly. As a baby, I was clueless and things were explained to my parents. As a child, they again, were explained to my parents. As a child, although I was somewhat aware, I still was kind of clueless to my difference and didn’t really care. I knew I was different , that people stared, made comments, and that I occasionally had treatments…but I think I focused on the outward appearance of my difference and not the medical reasons for them. When I was a teenager, I was a lot more aware but again, didn't focus on the medical causes, symptoms, or explanations of it.

Anyways…back to the point of this update.

Although I'll be treating my lip, the current damage has already been done. It is drooping and the treatments will not fix this problem. That being said, my doctor has recommended me to a plastic surgeon for reconstructive type of surgery for my lip.

Let me be clear: I don't want "new" lips. I just want them to be more symmetrical. I want to be able to fully close my lips with ease, instead of having to deal with the facial abnormalities that the birthmark causes.

Three professionals (my laser treatment specialist doctor, the laser treatment nurse, and my primary care physician) have told me that the plastic surgeon probably can't do anything to help. They'd probably be unwilling to try because my lip can continue to grow and become heavier, bulkier, and more droopy.  If my lip continues to do that, why try to fix it if my lip will later return to it's current state?  To summarize: In their opinion, it's practically a hopeless venture.

Well, today I had my appointment with the surgeon. I decided it never hurts to try or to ask…right?? (While I know it never hurts to ask, I was still nervous. I pretty much expected having to go in with a strong defense of why I feel this is necessary and the medical benefits of having my lip adjusted.)

The man was super kind as he measured my lips and assessed them. (I’m pretty sure that’s the strangest sentence I’ve ever written. Seriously.) I really liked the doctor as he really listened and seemed open to what I had to say.

At the end of the appointment, the doctor told me he was willing to give it a try! First, however, he wants me to go through one laser treatment where they laser the lip. He wants to see the affect the laser has on my lip. If it seems to shrink the lip (which, I’ve been told in the past that it won’t do that. Again, once the damage is done – it is done. But who knows? We could all be in for a surprise.) then he doesn’t think it’ll be necessary. But, if there seems to be no change in size after the next laser treatment then he is happy to continue towards a surgery to assist me in reconstructing the lip. He basically told me, “performing this surgery on you is no different than doing it on someone with a clef lip.”

If we do a reconstructive type surgery, he will basically go in and remove some of the extra tissue that is causing the extra puffiness. He only wants to take a little at a time, as he does not want to take too much. He told me, “It’s easier to take a little at a time. If you take too much, that’s a lot more work to fix.”

(Also, random note, this doctor even observed, “I’m noticing that for you to close your lips completely – you really have to compress the extra tissue.”)

I don’t know how this will all go down and how it will turn out. I’m mostly telling you all this as it is a part of the journey.

Ironically, my laser treatments are lightening the birthmark enough that people are starting to pay more attention to things like my lip. It seems as though I’m getting more questions at the school where I work, or by new people, “What’s wrong with your lip?” (Don’t get me wrong – I’m still being questioned about the purple birthmark itself. But I think, as of right now, those questions have decreased in amount while the others have been increased.)

I’ve always been more annoyed and self-conscious about my lip – more than I am with my birthmark (funny, isn’t it?)…but I think it’s mostly because I can’t even close the lips – and because I know the ability to close them will become harder as I age. I think if my lips could do the simple task of just closing, it would be a different story.

Having about three doctors tell me that more than likely no surgeon would be willing to operate was discouraging…Yet, the one I saw today was instantly more than happy to do so. I can’t even begin tell you how encouraged I feel after this appointment. 

While this may not seem exciting to some (and many of you may frown upon it, as I know some frown upon my doing the laser treatments), I am stoked.

The Travelin’ Chick,
Crystal


PS: I’ll update you when I know more – probably in 1 ½ or 2 months, after I see the doctor again about a month after my next treatment.

PSS: I still need to write a blog entry about questions some of you have asked me in the last couple of months. I just haven’t gotten to that yet, and I apologize. I have a few more questions of my own to ask my doctor before posting what I have already started, so if you happen to have a question – feel free to ask! I’ll include it. I’m practically an open book about my birthmark, whether you’re curious about the experience, medical technicalities, treatments, or even the emotional and mental processing of it all.

How light is too light??

This photo is from December, 2012.  Taken with a Nikon SLR in the middle of the day, with bright natural light.

This photo is from January 24th, 2014.  Taken with my iPhone 4, at night, with a filter, in-house lighting and shadows, along with no flash.  This is about 4-6 treatments later, after the photo above.

Last night I posted a photo (which I posted above) of me and my dad's dog - who decided to cuddle with me by crawling into my hoodie.  A few people messaged me and said, "Wow.  I can't even see your birthmark!!"

I can see why they say that.  I mean, I can still see it.  But I can tell it does look quite a bit lighter than usual in the specific photograph.  Funny thing (to me, anyways) is, my face is still healing from my most recent laser treatment from two weeks ago.  Certain spots are still darker than the usual shade of purple.

When you look at the photo, it does look a bit lighter than the other one I've have also included from a little over a year ago.  As people are messaging me, telling me that they can't see it, I remind them about the variables they have to consider…The lighting from the time it was taken, the camera being used, and filters that are offered when uploading mobile photos to Facebook.  If I was cold when a photo was taken, that too makes a difference as my face becomes an even darker shade of purple.  Overall, it much different than if you were to see me in person.

The most recent treatment was two weeks ago, and truth be told, the results of the birthmark becoming lighter aren't instant.  It can take up to six months for the difference to show from one treatment.  But, by month 6, I've probably had a total of three treatments within that time period - as it is recommended for me to have them every two months.

Anyways…All that to say…From the comments people have posted along side my photo on Facebook to the text messages I have received, I can't help but wonder…How much is too much?  How light is too light??

People always ask me if my intentions are to get rid of my birthmark.  The thing is - my birthmark will never go away, but in a sense, I can hide it better through the laser treatments.  Even if I had enough treatments to make it look completely invisible, I would still have to have an occasional "touch-up" appointment throughout the rest of my life as a Port Wine Stain birthmark can, and often will, darken with age.

When people ask me if I am intending to make it "go away", I always tell them that's not my purpose.  My main goal is to control birthmark from becoming darker than it already is.  In a way, I guess I just want my birthmark to be more subtle than it has been in the past.   It's not that I'm ashamed of my birthmark - because trust me - I'm not.  (You should hear the jokes I crack about it all the time!  And there are some perks to having the birthmark.  Maybe that should be a post for another day.)   I don't want the birthmark to be the first thing new people or strangers notice about me.  I'd rather them notice my personality, my eyes, my hair…or whatever…before taking notice to the birthmark.

As I receive texts or when I am told by classmates about how light my birthmark looks, it is encouraging!!  Sometimes I think the treatments are working, but am never fully sure since I see my face everyday.  It's refreshing to hear someone say that they, too, notice a difference and that I am not imagining it.  Hearing the comments help me know that the treatments aren't wasting my time.

But again, how light is too light??

I've always known that my birthmark has been a part of who I am.  While it is not my identity, it has played a big part in my life and becoming who I am.  It wasn't until tonight that I have realized how much my birthmark is a part of me.

Growing up, people often told me, "You wouldn't be Crystal without it!!"  I have always strongly disliked that statement.  I guess I probably felt as though people focused on my birthmark more than me, as a person, when they made those kinds of comments - as they were usually said to me randomly, with the commenter bringing the topic up on their own.  Usually I'd respond with, "That's not true.  I'd still be me!"  Now that I'm older, I can see that they are right in more ways than I realized at the time.  It has taught me so many lessons through such unique experiences that have been responsible for creating the person I have turned into being.

Not only that, but if I lighten it too much, how will I be able to teach others??  If it looks invisible to the untrained eye and I were to tell others about it, would people roll their eyes, shut their ears, and say, "Yeah.  Right.  You had a birthmark covering nearly half your face…As if I'm going to believe that!"??  Will I miss out on a special opportunity to educate others in a way that many cannot?

When people see my birthmark, people become curious and they listen.  People ask questions.  People are willing to learn.  (Well, not all people.  But this entry isn't about those people.)  I stand out and it has been a great conversation starter with strangers, creating opportunities for new friends to enter into my life.  

Through a person's reaction, comment, or questions (and they way they go about expressing them), I even get to see the side of people that most people may miss.  Sometimes I get to see a side that their family and friends don't see, a side that comes out when they feel uncomfortable or certain kind of curious.  It has taught me great skills in observing other people and their attitudes, tones, and reactions.

Without my birthmark, would I meet people as easily?  Would random people come up to talk to me as often as they do now??

If I change what makes me different from the crowd, can I still make as much of a difference in the world?  Will people still be willing to learn when they can't see the point of what I'm talking about??

I'm not really sure that I've made much of a difference with my birthmark…Although, sometimes I like to pretend that I've at least made a small impact through my life and through sharing my experiences, stories, and just by trying to educate others through my entries - or when I speak in classes at the elementary school where I work.  Even if I've impacted just one person, it may be a small difference in a very big world…But  just like a house is made with many bricks and bricks are made of many tiny pieces of sand molecules.  Without the sand, there'd be no brick.  Without the bricks, there would be no house…Every little difference matters!!…Right??

All this to say, once more, how much is too much?   How light is too light?   Ultimately, I know it's my decision…not my parent's, not a stranger's, not another person with the same birthmark in the same location, and not anyone from my Facebook friend list of 1,420 people.

It's a hard decision to make.  Do I want to go as far to look as "normal" as everyone else??  (Even if I have the birthmark lightened that much, I'll still have the asymmetrical facial features, such as my lip and nose  and I'll still have the Glaucoma for the rest of my life.)   I'm sure that would make my life a LOT easier if I did…Or, would I miss it if it were "gone"??  Do I want it to continue to be noticeable? 

Truthfully, right now I think I'd feel a little lost without it since it has been a big part of my life.  I guess that's when I can be thankful for the time it takes for treatments to take their course, so I can wing it and decide as I go along.  I also think that if I were making this decision as a child or as a young teenager, I wouldn't find the decision to be difficult at all.  I can honestly say that back then I didn't see the value in my difference.

There's a poem I remember writing and found a few minutes ago.  I wrote it in March of 2003.  I was 11-years-old and in the 6th grade.  My young-minded poem is very clear in my wishes.  I wasn't happy with my birthmark.  I didn't want it.  Here's what I wrote (and please keep in mind the age I was when I wrote it, and that poetry has never been my area of gifting!):

My Stain

They say they can see right through it, 

Even though it looks as if I have been hit

I have a birthmark on my face that's a Port Wine Stain,

Sometimes I wish it would go down the drain.

I use to have surgery,

But that just bugged me.

People stare,

But that's not rare.

Sometimes I'm made fun of,

I wish I could fly away like a dove.

I'm special in my own ways,

Even though there are tough days.

I have no fear,

Because I know people who care and are near.

They say they can see right through it,

Even though it looks as if I have been hit.

I don't recall why I wrote it or what made me feel the way I was feeling.  As an adult I don't remember being made fun of by peers as a child while at school - except for one time, when I was about 6 or 7.  Maybe a stranger stared at me too long the day I wrote it.  Maybe I overheard a rude comment, or again in my young mindset…maybe I thought that a specific 11-year-old boy would never like me with half an abnormally colored face.  It's also possible that I wrote this around the time when we realized the then-current laser machines weren't making a difference and that the recent treatments had been for nothing.  Or, maybe, I was just being 11 and wishing my difference away was the only way I knew how to cope.  I don't know.

I'm just glad that I didn't stay in the mindset that I held half a lifetime ago.  I'm not sure what made the change, or when the change occurred.  But it did change, and I am thankful.  

I can't help but wonder, "If my mindset hadn't changed, how would it of affected my mental development?  My personality?  And how my life has played out?  Would I still have chanced moving to London for half a year, or to a college in Nashville for a couple of semesters?  Would I be too shy to travel the world, struggling with a lack of self confidence, and be less adventurous?"

I can say that I still have tough days  having the birthmark.  When certain comments are made or there is a LOT of stares within one day, it can be overwhelming.  On certain days, I have certain questions and doubts. Now that I am older, though, I can laugh most things off.    I can find the humor in most situations.  I am able to see things from different perspectives and have realized that there is a deeper purpose for my birthmark than what I saw when I wrote the poem.  I've come to a point of much deeper acceptance and appreciation of who I am, as I am.

Today I calculated that I can have an estimated amount of 22 more treatments before I'm off my parents insurance in 3 1/2 years, making the total amount of treatments over 50 - probably right at the 60 mark.   Odds are, I'll still have the option to continue once I am on my own with health insurance.  

So...do I stop now?  Do I stop in 10 treatments?  15 treatments?  20??  Or do I keep going until it appears obsolete - or until the treatments stop making a difference?

I have no idea what I will do.  Not only are the treatments not very easy, as they can be painful, but thought process and decision making can sometimes be equally as difficult.

It just amazes me that it has taken me so long to realize how important my birthmark has been in my life and to realize how big of a role it has played in my character development.

These laser treatments are so much more than a medical procedure.  They are a hard decision to make, as I battle and weigh out the pros and cons internally. 

The Travelin' Chick,

Crystal  

PS: To show even more of a comparison:

This photo was taken in May of 2009 with a small hand-held camera, outside with natural light.

This photo is from September of 2009, in my dorm room, taken with my macintosh computer.  I didn't have any laser treatments at this point in my life and I was wearing makeup in both shots.  (I just had more eye make up on in the first photo.)  Yet, in this one, it looks darker than the one above.  It all has to do with the different variables - and even including if I was cold when the photo was taken as the birthmark darkens with cold weather (kind of like a mood ring!).

Laser Treatment Videos

Some of you have inquired what a laser treatment is like.  So you can have a general idea of the procedure, I had my mom take a few video clips on Friday.  Below I will have to video clips, both short.  (The first one is under a minute and the second one is barely over the one minute marker.)

For this first video clip, I tried to add some captions on YouTube for those who need/want them.  Sorry if it's a little rough…It was my first time doing that and I hope to get better for any future videos.  

This is towards the beginning of the treatment.

For the next video, I have yet to add captioning as it takes a bit of time to do so…Sorry about that!  For the general idea of the conversation, the doctor and I were talking about my casts.  We talked about a pink one that my sister and brother-in-law bedazzled with lots of bling, how the nurses in podiatry all came out to the waiting room to look at it while I was waiting for my doctor's appointment, and the plans for my new purple one.  I'll try to add captions soon!  

This one takes place near the middle of the treatment.

During this most recent treatment (two days ago), we were able to do 252 laser pulses total.  The machine was also on a higher setting than before, so I felt it more than usual, which brought a lot more discomfort/pain during the treatment.  (Praise the Lord for stress balls I can squeeze during the treatment, and for the before-treatment numbing cream!)  If I felt comfortable with them treating the eye area where I can't put numbing cream and am required to wear a metal contact for, the number would be even higher than 252…but I have yet to get over the idea treating areas without being able to numb them, and I have yet to get over the idea of wearing a metal contact.  The idea of the contact totally freaks me out!

My face will be discolored as a darker purple for the next week or two - and during the next few days, Vaseline and ice packs will be my temporary best friends.

I hope the videos were found to be helpful and interesting.  Hopefully they explain what happens during the procedure better than my written, signed, or spoken words.  If you have any further questions, please let me know!  I'd be happy to answer them.  :-)

The Travelin' Chick,

Crystal

PS: If you need a reference blog with information about my birthmark and details about the treatments, check out my original blog post: Birthmarks and Laser Treatments.

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
visit.

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,

Crystal

The Stain

Due to the interest and high volume of readers in my blog  post "Birthmarks and Laser Treatments", I asked my mom (Rhonda Hodges) if she would be willing to share her perspective of having a child with a physical difference.  Her story is below.

The Travelin' Chick,

Crystal

PS: If it looks familiar to some of you, a shorter version was published in the Free Will Baptist "ONE" Magazine several years ago.  This is the longer and updated version that rooted from an English assignment while she was in college.

------------------------------------------------------------------------------------------------------------------

Crystal's newborn photo.

She’s here!  She’s finally here!  As the doctor hands her to me for the first time, I am filled with emotion.  As I count her fingers and toes, I count my blessing also.  She is a gift from God and she is beautiful!  No one will ever change my mind about that fact!

My attention is drawn quickly to the color of her face.  Something is different, but I am too tired to figure it out right now.  Her daddy takes her and gives her to the nurse so she can weigh, measure and clean her up.  He, too, notices something different but is not sure if it is because she is a newborn.

            

After a pediatrician examined her, he comes in to talk to my husband, Jim and me.  Crystal has a port-wine stain (vascular birthmark) on the left side of her face.  As the name suggests, the birthmark is a deep red, almost purplish color.  He is so blunt and doesn’t seem to care about what we may be feeling and thinking at the time.  We were expecting a healthy, “flawless” baby.  We bombarded him with questions:  Will the birthmark go away?  Are there other side affects?  What caused it?  What did I do wrong during my pregnancy?

The fact is that more than 10 babies in 100 are born with a port wine stain birthmark.  Only a small percentage of these are located on the face.  This type of birthmark is formed from extra blood vessels under the skin and it does not go away on its own.  In fact, the birthmark will probably get darker as the person grows older.  While there are different types of laser treatments to lighten the stain, they are not always effective.

The birthmark goes deeper than the skin you see.  In the case such as Crystal’s, it can also go into the brain.  When the doctor talked with us after Crystal was born, we learned that if the birthmark went too far into the brain, she would suffer a seizure within 24 hours of her birth.  Sometimes, the child has brain damage from the birthmark as well.  As the first 24 hours of her life came and went, we were relieved that no seizure came.  This meant the news was good – it was not very deep into her brain.

Since the location of Crystal’s birthmark is over her eye, there is also a concern about her eyesight.  In most cases, glaucoma is diagnosed later in life.  For Crystal, this meant she would be diagnosed with glaucoma at the age of nine.  While others look at her differently because of the outward stain, her view of life is different from what most people realize.  The slight loss of vision she experiences at such a young age makes her keenly aware of the importance of seeing what’s really important – the inside of a person.

The causes of this birth defect are unknown.  However, it is certain that the mother did not do anything wrong during the pregnancy, but this documented fact does not prevent her from feeling the guilt that she somehow caused this on her child.  I spent many, many nights wondering what I could have done differently to prevent this from happening.  It has taken years for me to accept my innocence.

This look didn't help with the
stares of others any. ;-)

Another question that arises is how society will accept this child that looks different.  How will they treat her?  This question was answered for me just a few days after her birth.

As soon as I was able, I went to church to show off our wonderful daughter.  A well-meaning older man of the church whispered to his wife, “Did you see her face?”  As an older gentleman, his whispers are much louder than he realized, and I heard the remark.

Several weeks after this, I went to the mall with my family.  My sister, Felicia, was holding Crystal.While we were in a toy store, a man came up to my sister and said, “How did you burn your baby?”  She did not correct the fact that she was the baby’s aunt, but rather explained that it was a birthmark – she wasn’t burned.  This was the most offensive and brutal comment that I remember hearing.  How could someone go up to a complete stranger and ask such a personal and horrifying question?  Why did he focus on her imperfection rather than the gift we received from God – our baby!

During this same visit to the mall, my other sister, Joanna, was holding her.  A lady seemed to have come from nowhere, came within a foot of Joanna’s face and said, “What’s wrong with your baby?”  Joanna was surprised at this woman’s boldness.  She stepped away from the woman and promptly told her that nothing was wrong with her baby, she just had a birthmark.  She wanted to ask the woman what was wrong with her, but restrained from being as rude as the woman had been.

Amanda and Crystal - The two sisters together.

As can be expected, our family has always tried to protect Crystal from these cruel and thoughtless questions and comments.  Even her sister, Amanda, has tried to protect her from the stares and comments.  Amanda is seven years older than Crystal.  I never realized that she was so worried about how people perceived Crystal until the day when our family went to a hardware store.  We were standing in the checkout line, and Amanda noticed the clerk staring at Crystal.  Without the clerk saying anything, Amanda blurted out, “It’s a birthmark – only a birthmark!”  When I asked her why she did that, she said that she gets tired of people staring at her sister because she looks a little different.

As mentioned earlier, there are many different types of laser treatments that have been successful in lightening the stain.  During the first seven or eight years of her life, Crystal had approximately 14 laser treatment surgeries - we lost count.  While the surgeries lightened the birthmark some, it did not remove it.  When the surgery is done, the skin is discolored even more and darkened immediately.  The job of the laser is to go below the skin and cause the blood vessels to be cauterized.  This process causes the area to be swollen and appear bruised.  The additional discoloration will last about two weeks, and when that is gone, the birthmark should be lighter.

If you think my child looks tough,
you should see her father.

As one can imagine, we were even more protective of our young daughter after she had the laser treatments.  When she was just a baby, she had surgery in San Francisco.  On our way home after the surgery, my husband and I decided to stop for dinner.  As we entered the restaurant, my husband said, “If someone says anything about her, can I hit them?”  Even though I chuckled at his comment and told him “no”, I secretly wished we could do just that whenever anyone made rude comments about her.

As Crystal got older, the surgeries became less effective.  When she was 11, we decided to let Crystal decide if she wanted to continue the treatments.  She decided she did not want to go through them anymore. Just recently, she decided to start the treatments again. Over the past ten years, technology has improved the laser machine and after her first treatment, her birthmark is already lighter.  Even though she is a young adult, I still feel the need to try to shield her from the stares of strangers after her treatments.  I even find myself “staring them down” or even trying to block their view if I see that someone is staring at her. I realize that’s a bit silly and maybe even funny, but I suppose it’s because I don’t want her to be hurt.

* * *

When the world looks at Crystal, they see a young lady with a mark that cannot be hidden.  Even though our society is supposed to be more learning about those with physical differences and disabilities, the stares continue. 

Crystal and some of her friends at school.

Most of the time, it’s adults that are the most inconsiderate.  Usually, children will look at her for a minute and continue on their original mission.  Occasionally, one will ask her a question about her face.  She will tell them it is a birthmark, and their curiosity is satisfied.  When she was in grade school, the children in her class asked many questions.  When she explained that it was a birthmark, the children either showed or told everyone about their own birthmark.  Life continues for them as if nothing is different.

Those that look different – whether caused by an accident or at birth – are often perceived as not mentally bright.  The thought is if someone doesn’t fit the typical mold, they must not be as smart as others.  This simply is not true.

I always teased my children about having eyes in the back of my head.  They often tried to find them, but I told them that they were only used when they were needed.  When Crystal was about five or six, I was in the kitchen preparing dinner.  She came into the kitchen behind me and wanted me to look at something she had in her hands.  I told her that if I turned around right then, I’d cut my fingers.  She said, “See, Mommy, I knew you didn’t have eyes in the back of your head.”  While her response was comical, it also showed her ability to analyze things at a young age.

* * *

Her dramatic side started at
a young age.

Our friends from church or those that are around her a lot no longer see Crystal’s birthmark.  They see Crystal.  They even forget she has one until we ask them to pray for her during an upcoming surgery.  When surgery is mentioned, they have to stop and remember why she is having surgery.

This forgetfulness doesn’t happen because the birthmark is too light to see, but rather because they know Crystal personally and are focused on her personality.  At times she can be shy, but most of the time, she is an outgoing young lady.  She can be very dramatic and grew up loving to be the center of attention!  Even as her mother, there are many times, that I can’t remember what side her birthmark is on.  When I would call to schedule a doctor’s appointment for her, I have to look at her picture to remember where it is located.

I criticize others for their lack of acceptance of my daughter as she is, but I also have had to reprimand myself.  There were times I needed to reevaluate my reasons for scheduling her laser treatments.  Is it because I want what is best for her, or am I pursuing it so I will no longer have to explain her appearance to others? 

Her strength and positive self-esteem can often be
shown  through her style of humor.

In order to help those that have this type of abnormality or those that have been burn victims, a special makeup has been developed.  We purchased some of the makeup for her when she was 11.  Normally, I don't encourage kids that young to wear makeup.  However, due to this different situation, we decided to let her try it to see if it made her more comfortable around others. The texture and thickness of the makeup is very different from regular makeup and after trying it a couple of times, she decided it wasn’t worth the work.  I’m actually really glad she decided not to wear it.  Her decision just shows the strength she has and her positive self-esteem.  In fact, she didn't even start wearing "normal" makeup until she 17-years-old and was a senior in high school.

* * *

Most people judge others by what they look at rather than who they are.  There are many other types of prejudices in this area rather than the port wine stain like my daughter has.

Let’s look at those that are too heavy.  If someone is too heavy, we typically think that they are lazy and sit around all day doing nothing.  While this may be the case, it is not always true.  Many of these people have tried one thing after another to lose the extra weight, but nothing has helped them.  While they may never be happy about the extra weight, they learn to accept themselves the way they are and be happy, successful people.

On the other end of the spectrum, we think that those that are too thin must be sick or have an eating disorder.  After all, how else can they stay that skinny?  Just as those that try to lose weight without success, many thin people try to gain weight without success.  Their experiences in purchasing clothes can be as frustrating to them as to the overweight person.  It’s no fun for a businesswoman to have to look for business attire in the junior section of the clothing store.  Those clothes are made for teens – not successful women.

In addition to weight perceptions, we look at those that have acne.  When we see someone that has severe acne, our minds tend to think that they don’t take care of themselves the way they should.  We forget about all of the medicines or overactive glands that can cause this condition.

* * *

Unfortunately, there are many other “stains” in life that cause us to judge others by their looks.  By limiting ourselves to those that appear to be “stain” free, we miss many blessings.

At one time in our church, we had two young ladies that are mentally challenged.  One is a Down’s Syndrome child, and the other one has other mental disabilities.  When I was younger, I would steer away from these girls because they are “different”.  I even remember a time before Crystal was born when I saw someone at a store that had a birthmark and was thankful that Amanda did not have their abnormality.  I remember feeling sorry for that woman and wondering what caused her condition.  No, I didn’t go up to her and ask her these questions, but I still looked at her as someone with a “stain”.

This is a photo of Crystal and
I together on Easter, 2013.

My attitude has changed dramatically.  Maybe it's because I have a daughter who has a birthmark that everyone can see or maybe it’s because I’ve matured.  The reason seems unimportant.  The important thing is that I have learned a tremendous lesson.  By judging people by what they look like, we are limiting their abilities and importance.  If we keep ourselves from getting to know these beautiful people, we are missing out on receiving blessings in store for us.

We all have “stains” in our lives that are not attractive.  How do we use those?  Do we try to hide them from others and try to forget we have them, or do we learn from them and try to help others?  That is the question we must each ask ourselves.  Be sure to answer it honestly.