Tuesday, January 28, 2014

Let's Skate!

When I was trying to find the poem I wanted to publish with my last entry How light is too light??, I had to go through some of my old journals to find it.  Since I have my journals out of their usual spot, I started reading through one of them tonight.  The specific journal I'm reading through at this moment starts from when I was 9-years-old and in the 4th grade.  Reading it, I came across this entry:

Dear Diary,
When I wrote about when Brett broke his arm at Cal-Skate, I forgot to tell you something.  Can you guess?  Landon** asked me if I wanted to do the couple skate with him.  I said no.  There are a lot of good reasons I said no too.  #1, he was skating with somebody else.  #2, I was too tired at that time.  Got to go Diary.

Again.  Please keep in mind that I was 9 when I wrote this.

Landon was the boy I had the biggest crush on throughout part of my childhood.  (And to let you know who the other character, Brett, is - he is my cousin.)

This may be silly to some, but reading this entry, I had this life revelation…Or whatever you want to call it.

Reading my aged pen scribbles, and even though I told Landon "no" at his request - I can tell how much I truly wanted to skate with Landon.  I can tell what my true desires were not just through this entry, and other previous ones I read before coming to this page, but I can remember how head-over-heals I was for this kid.  (Well, if 9-year-olds wore heals, anyway.)  I remember being nine.

As I read it, I can dissect it in deeper ways other probably can't and won't.  Not only am I the author who penned this important moment in my personal history, but I am the character who lived in the moment.  I know who I am.  I know my tendencies and my bad habits. 

First tendency/bad habit - I told Landon "no".  I wanted to live in the moment and skate with him.  Yet, I denied myself what I wanted in life.  I denied myself a dream coming true.  Sure, he probably only wanted to skate as friends even thought a specific song was dedicated for couples to skate along, but who cares?  He offered.  I wanted.  I said "no".

Not only did I tell him no, but bringing in my other bad habit and tendency - I also made excuses for myself to give him the answer I gave.  I made excuses to deny myself a moment in life that could have been a great memory.  I was tired.  He had been skating with someone else.   Whatever.

Really, I think the boy just made me nervous.  (You know, since I liked him.)

Again - I realize I was only 9 when I wrote this.  Yet, I can't help but wonder how many dreams I've denied myself?  I can't help but wonder what would happen if I said yes more than I said no…What have I missed out on?  I can't help but wonder, why do I let fear turn possible memories into missed opportunities?  And why do I make excuses, and validate doing so??  Why am I sometimes too afraid to live in the moment?

Even when I tell myself I'm not good enough at something.  When I think negative thoughts about things that I love, things that I should be proud of, it damages the possible outcome and possibilities.  When I say, "I'm not skilled enough at photography" or when I think, "I'd really love to attend Gallaudet University - but it's too expensive and hard to get into.  It's too much work and it'll probably never happen."Every time I tell myself these lies, I am damaging myself.  I am damaging myself worth and my self-esteem.  I start believing negative lies, making it more likely for them to become true.

My photography could use improvement, yes.  But nobody is perfect at any thing.  Not even Ansel Adams is perfect with a camera in his hand.  He may be great, but I bet even he feels like he can improve in areas.  When I start to tell myself I'm not skilled enough, I should do something about it.  Instead of marinating in negativity, I should embrace a challenge.  I should go out with my camera and photograph something beautiful.  Or, I could pick up a photography book and brush up on new or forgotten knowledge.

I do want to go to Gallaudet.  I want to be an interpreter for American Sign Language.  My theory is, what better way is there to learn a language than to immerse myself within the culture where the language is used??  I feel as though if I attended the college, my ASL skill set would improve…but…The idea of going makes me nervous, just like the time when Landon asked me to skate.  That's when I have to remind myself of a few things.

Sure the college is expensive, but nothing is impossible.  That's what a search engine and scholarships are for.  And the school may be harder to get into if you're hearing (as it is a university for the Deaf), and it might be a challenge to go to a college that is in a second language different from your first...but I will never know what the future could hold if I don't try.

Yeah.  I wrote the journal entry with bright, 90's color-changing gel pens before I was in the double digits of age…But that's not really the point.  The point is, as I reread it, I've realized a pattern in my life.  A pattern I sometimes become immune to noticing.  A pattern I can clearly see I have traced throughout the last 13 years of my life throughout different situations.

Here's to pushing fear aside!  To living in the moment!  I owe it to myself to confidently put myself out there.

Let's shake off those nerves and make memories!!  Let's skate with those who ask!  After all…You only live once.

The Travelin' Chick,

**Name has been changed.

Saturday, January 25, 2014

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,

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!).

Sunday, January 12, 2014

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,

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.

It's just a birthmark!

Told ya.  Lots of medical stuff has
been taking place!  
During the last month, in the midst of all the holiday celebrations, I've had a lot of medical stuff going on. No worries - none of it has caught me by surprise. To summarize: in the last month I have had ankle surgery, a wisdom tooth and molar removed, and a laser treatment on my birthmark.

Whenever I am out and about, I just about always expect staring due to my birthmark. I expect weird questions and statements…and sometimes the occasional stupid remarks. The thing is though…When I go to a hospital or a dentist office, I don't really expect many ridiculous stories to unfold - at least not because of something hospital employees say. I guess I go into those buildings thinking that those who work there have a bit of knowledge that maybe the average Joe doesn't have. Maybe they don't know why my face is purple and pink, but I guess I've always assumed that they realize, as they work in their field, that there are many different kinds of people that don't necessarily look, or even act the same as others. I guess I also assume that they have trained themselves or have learned to have a professional filter somewhere between their brain and their vocal cords. But, I suppose that even people who work in the medical offices are also human…and can also give me a story to tell.

All of the stories I am about to tell you are true. And they've occurred within the last few months.

As I was preparing for my ankle surgery, I had to have a few podiatry appointments that included me going for x-rays of my ankle and foot. While waiting to be called back for the x-rays, a young lady (who works for the hospital) came in the waiting room, saw me, and asked, "Oh, are you wearing face paint or something?" I looked at her and said, "No...It's just a birthmark…"

This lady then became super embarrassed and flustered saying, "Oh, well, I just thought that since it's
My fun knee caddy/scooter. I've
even decorated it a little more since
this photo. 
time for Halloween and some people...well...you know...yeah...Sorry about that." Holding back my laughter, with a smile I said, "It's ok - don't worry about it!" She then walked out.

After I was called back for my x-rays, the same (embarrassed) lady ended up assisting the person I was with. The poor lady kept looking at the ground and wouldn't even make eye contact with me. She even asked the x-ray technician if she "really" needed her assistance. I could tell she felt bad. And awkward. I actually began to feel bad for her, but didn't know what to say to help her feel better about the situation...and it really did take all I had not to laugh - so it's probably better that I stayed silent!

Before I had my ankle surgery and before Christmas break began, my mom had me get the flu shot. Although I got the shot - I can't say that there wasn't a lot of protesting on my end…But eventually, I caved. Probably a good thing too, since I work at an elementary school and get germ-filled snot and slobber on me constantly…Just thinking about it makes me shiver.

Turns out, I'm allergic to the flu shot! I had a red and feverish spot on my arm that kept growing, even a few days after receiving the shot. Eventually it became the diameter size of a baseball and mom had me call the nurse hotline for advice. The nurse on the other of the line told me to go to the ER and that I should have called about it sooner.

As I am called form the ER's waiting room to see the triage nurse, the nurse asks me what I'm there for. I responded, "I'm having an allergic reaction or something to the flu shot." Looking at my face and with a monotoned, yet tired voice, she pointed and asked, "Is that the reaction right there??"…What????

I mean, I guess that's a valid question. I don't know. She wasn't the only nurse who had that thought that night. Valid or not…I just laughed in disbelief and a part of me wanted to respond, "Yeah…because we all get our flu shots in the face, right?" But I didn't. I just held onto my laughter until I left the room and I just cracked up once back in the waiting room with my mom.

About a week later I went to an oral surgeon for a pre-op appointment for the surgery to remove the two teeth removed. We introduced ourselves, and with a smile he looked at me and asked, "Oh - you have Sturge-Weber syndrome, don't you??" (Which, honestly…I'm not sure how to explain Sturge-Weber Syndrome. I have it in addition to the birthmark, but it is caused by the birthmark. I haven't learned much about it, but from my understandings…it's basically all the complications that a port-wine stain can cause, like my glaucoma. Except, I have it easy in comparison to a lot of people with the syndrome.) Looking at him amazed, I told him, "Yeah…I do."

The oral surgeon got really excited. Seriously. He was like a kid in a candy shop!! I think I made is day by just walking into his office. Before pulling down a book to read about my birthmark and the syndrome, he commented, "I don't know the last time I operated on someone with Sturge-Weber syndrome. Actually, I'm not sure if I ever have…at least with it on the gums. I wonder if you'll bleed more, since it's caused by extra blood vessels. I'm quite curious!"

Even the kiddo (my cousin) likes to take
a joy ride with the scooter/caddy! Who
can blame her?? 
Confused, I asked him how he knew about my birthmark. He told me he not only went to a school to learn about dentistry, but also went to medical school to learn more about the face so he could be better
prepared as an oral surgeon and dentist. I then told him the story of the ER nurse, telling him that I am impressed he knew so much when someone in a hospital setting knew so little. I hadn't expected a dentist to know anything about it…at all…but it really felt good to know that he made an effort to learn and still wanted to learn more.

I didn't go back to have the two teeth removed for a couple of weeks. Once I had them removed, he told me to make an appointment for the next week so he could make sure I'm doing okay and to remove the stitches.

I didn't make it a week. Within two days, I was back in their office. The stitches were driving me CRAZY. Being so far back in my mouth, it would literally feel like I was swallowing a piece of string.

Going back into the office, one of his assistants greeted me and took me back to a room. As I sat in a chair, the lady looked at my face and wide-eyed asked, "Oh my!! Is that from your surgery? Did the doctor do that to you?? You should of called us sooner!!" I then explained that, no, the doctor - her boss - did not do that to me. (Knowing I was having a laser treatment within the next 24 hours, I wanted to say, "You think I look bad now?? You should see me after my laser treatment tomorrow!!")

Unlike the ER nurse, I didn't find this situation to be funny. I actually felt the opposite. It frustrated me and I felt annoyed with the lady. I don't really know what the difference was. Maybe it's because I was still feeling crummy from having two teeth removed, in addition to having my cast as I heal from my ankle surgery. Maybe it's because I am tired of people who work around people in a medical type setting being totally clueless, and not knowing how to be a more classy type of clueless. I don't know. But just like my laughter with the ER nurse, I held in my annoyance with the oral surgeon's assistant.

The oral surgeon then came into the room and started checking things out. As he did so, his employee basically "told on" herself, recalling the conversation and comments she made…laughing while doing so. The oral surgeon's expression said it all - even before his words of apology for the lack of sensitivity of the lady who works for him. His face held a combination of frustration, embarrassment, and disbelief. After he apologized, the lady continued to laugh as she said, "yeah…Sorry about that!"

Yeah. Okay.

When I tell the stories that seem to continue to pile up, my sister always tells me that I need to have fun with people. She tells me I should unleash the sarcastic responses that come to my mind in response to certain questions or comments. Really, if you could see into my mind when situations arise, it can be a fun and hilarious comic strip playing out…but I always hold back. And sometimes my sarcastic responses come to my mind a little delayed.

Although I always expect people to say things, no question or comment is ever 100% the same. Somehow, I am usually caught off guard. I mean, even though the ER nurse's comment and the comment of the lady who works at the oral surgeon's office were both similar…They were not the same. At all…Each catching me by surprise!

Maybe being sarcastic in response isn't the right thing to do. Maybe it is. Or, maybe it doesn't matter…Maybe I should decide if I want to be sarcastic, depending on the person, the age, comment, attitude, etc, etc, as I can usually - and very quickly - weed out who is genuinely curious and kind verses those who are just plain ridiculously rude. I don't know.

My Deaf professors are always sharing their stories of the crazy things people tell them or ask them, along with their quick-witted sarcastic responses they give to people…and I love their stories! I love how fast they with their witty responses and often wish I could be the same way.

Maybe you work in a medical office or dentist's office. Possibly you're a doctor, nurse, or a receptionist with no medical training. If you work in either of these settings and your'e reading my blog, please take at least one thing from what you're reading.

Everyday I have to go out in public and deal with staring. Nearly everyday I am put into uncomfortable situations caused by the general, awkward public.

I get that you may not know why my face looks the way it does. I get that you may have questions about it. Truthfully, I don't expect you to know a thing about it or to go out and learn about it. But when I walk into a hospital or dentist office? I expect and hope for a decent sense of professionalism from you.

Hospitals or any kind of medical buildings *should* be a safety zone away from nonsense. Realistically, in these settings - nothing should be assumed. I mean, come on! I can't be the only "oddball" you've met.

Expect different people to walk to your doors at anytime!! Sure, those of us who are "different" may get stares and off-the-wall comments from other people in the waiting room, but more than likely - they don't work in a medical setting. Fair or not, I set the bar a little higher for the people who do.

And although it may not be in your job requirements, I hope that you have the previously mentioned filter between your brains and your vocal cords. Think before you speak! Treat me with respect. Treat me how you'd want to be treated if you were in a similar situation. Think through your words, vocal tones, and the looks you give others.

You can ask questions. Just be kind and please think about the way you phrase them.

The Travelin' Chick,

PS: By the way - if any of you near me need a recommendation for a great oral surgeon, let me know! I really enjoyed the guy I was referred too. He was really kind and had a great sense of humor as he signed my cast while I was knocked out during the procedure, and told me he took a ride with my knee caddy I use to get around.