Saturday, May 29, 2010

"Lucky", You Say - Part 4

Here I am at my confirmation in Cyprus in 1995. We had recently moved to a new town called Limassol (roughly an hour or so drive away from Paphos where we first lived) and I had changed schools. It was the first time I was seeing my old friends since moving, as my confirmation took place in Paphos where I had done my First Communion.

I remember the first day of my new school, my mother wrote a letter for me to read out to my class explaining that I wasn't contagious or sick and that I was hoping they would still be friends with me regardless of what I looked like. I remember my voice broke during that part of the letter as I stood at the front of the class, and a couple of my classmates also started to tear up. I'm eternally grateful to my mother for what she did by making me read that letter out - immediately after class, a group of girls came up and asked me if I wanted to sit with them for lunch. Those are still some of my closest friends to this day.

You can see that my arms had almost completely changed (except my knuckles and fingers), as had my legs and torso. The Vitiligo was now making its way up my neck, soon to go into overdrive on my face upon hitting puberty. The white patch on my forehead kept growing and shrinking as you can tell from previous photos, which shows how unpredictable the condition is.

Aged 9 at my confirmation in Paphos, Cyprus

Tuesday, May 25, 2010

The Most Wonderful Time Of The Year...


Ah, summer! That time of year when coats and cardigans are packed away and the shorts and bikinis come out. Trips to the beach and foreign, exotic locations for vacation with friends and family… Sun, Sand and Sea…
Summer, the time of year that is also known as:

The bane of my existence.

This is what summer means to me, my friends… Please try to understand if you will:

No more long sleeves, no more layers, no more hiding the patches or the whiteness of my skin so that now, in the summertime, people can comment every two seconds on some aspect of my outward appearance...

… Of course everybody else is getting that beautiful creamy caramel tan that I can only hope for in my wildest dreams or imagination, the kind of tan that makes me only seem whiter when standing next to them. Which brings me to my next point: Summer, the time of year that the contrast between my skin and the rest of the world becomes so evident that on one occasion, someone had the nerve to ask me if I was sick or dying because I was “so damn pale”.

Even worse, there are those select people who say ridiculous things about themselves such as: “Oh my! Look how dark I’ve gotten! I look so black now after being in the sun all day!” as if that is a bad thing, while I stand there and only dream of what it would be like to have a tan… While I stand there mustering every ounce of self-control to not scream at them that they are lucky, to stop complaining about how dark the sun has made them. They went out without sunscreen on purpose, so what else did they expect to happen?!

Summer is the time of short skirts and sexy legs at parties – my legs, though they may be a nice enough shape despite being a little on the short side, serve a double purpose as fluorescent lightbulbs on any dance floor next to the chocolate, mocha and caramel pins of perfection that look healthy and toned. People with a healthy tan glow… Me? I just glow… In the dark!

Summer is hard. I don’t show my legs – too much white, too much pale, too much of a spectacle. I wear short dresses and skirts at parties with the rule that I always wear a light pair of stockings as well, never bare legs. That in itself took years to happen.

I loathe wearing makeup to cover my freckles during the day as it feels like my face is melting and I’m sure people can tell, yet I don’t have the courage to go without it when everyone else is looking so perfect and healthy from the glow of the sun. Trips to the beach are a menace; even when I do get in the water, my head needs to stay above it to avoid washing off my mask and looking like a clown. I much prefer to rent a beach-house or villa with a pool and go with a select group of friends who have better things to do than to mind my skin and how reflective or transparent it is.

Summer. It’s the most wonderful time of the year… For some.

Monday, May 24, 2010

"Lucky", You Say... - Part Three

I remember once after a ballet class, I was complimented on my "psychedelic leggings" by one of the parents. I was wearing a leotard only with my ballet shoes. My feet were one colour only, with the patches starting from my ankles up. 


This is probably an image you may have already seen, but here's the full photograph that has become pretty much a staple image of my experience in the media. You can see the contrast most here and my legs are almost completely white, with my arm now starting to change as well. I believe I was about seven years old in this photo.


Aged 7 on the beach in Cyprus

Don't forget to show your support for the cause by giving as much or as little as you can at http://www.justgiving.com/ddevlugt

Tuesday, May 18, 2010

Letter From A Skinned Alive Reader



I get a lot of emails and messages from people around the world throughout the week, which usually spur me on to continue writing on the Skinned Alive blog. Sometimes a letter will help me choose what topic to touch on and sometimes, like now, the letter itself is too good not to share.

I was sent this last week by a reader and her letter was very touching. It helps to see things from someone else's perspective. She highlights perfectly what it is to be afraid of your patches and how vulnerable it makes you. Here's her story:
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Hi Darcel,
Thanks for writing back to me a couple weeks ago. I enjoy reading your blog posts, as well as your Facebook posts on Skinned Alive. I wanted to share something with you that took place after I read your blog posts a couple weeks ago.

First of all, just to give you a little background, I have always felt very ashamed of my Vitiligo and have really struggled over the years to come to terms with it. I have always kept my patches hidden as much as possible and have struggled with self-acceptance on many levels. I also have really bad eczema, two different types, so it sometimes feels as if my skin defines me somehow.

My background is a bit different from yours. It was a bit unstable, and there was some abuse, which is what started my lack of self-acceptance. I was always told I was ugly and worthless....even though I really wasn't. I had beautiful long dark hair as a child, but I never believed I was beautiful. When I developed these skin issues, it made it that much harder for me to love and accept myself. No one in my family that we know of has Vitiligo, or eczema for that matter, which leads me to believe that my skin issues were the result of emotional trauma. If you think about it, our skin is the biggest barrier of protection against the outside world. The fact that I have so many skin issues tells me that my "barrier" has been violated and feels so vulnerable. I have slowly been trying to address some of these things from a holistic point of view (body, mind and spirit), and I am introducing a lot of compassion into my life that I've always lacked from others and from myself. I'm trying to 'love' on my skin and the many issues I have with it.

When I stumbled upon your blog and read every post, it spoke numbers to me. You said,
"Sometimes I let my skin matter to me more than it matters to others." 
Isn't that the truth?!! I have paid more attention to it than anyone else has. My husband has never had a problem with it, nor anyone else, but I continued feeling repulsed by it, covering it up like some horrible disease.

I found myself in tears when you said,
"My skin won't behave itself, so I sometimes feel like I am losing me, or the me I have learned to identify with.

I could identify with that SO much. For years and years my biggest fear was that my vitiligo would reach my face, and that everyone would finally see it and be repulsed by it. I was terrified of the idea of it on my face. I didn't care if it showed up all over my arms and legs, just as long as it stayed far away from my face. Unfortunately six months ago, I developed a patch directly above my left eye, and it is slowly spreading. I cried and cried when I first noticed it. It was my worst fear coming true and I felt like I was slowly loosing myself. I'm still scared!

I knew I needed to show this spot on my eye compassion, rather than doing what I have done for so many years....dodging the mirror with disgust and shame, hating every part of my Vitiligo. I was still struggling to show it compassion until I read your blog posts. I loved the quote by India Arie,
"I am not my hair; I am not this skin; I am not your expectations, no... I am not my hair; I am not this skin; I am the soul that lives within." 

After reading all of of your posts, I found myself standing in front of a mirror crying so hard ....feeling SO sad that I had been so mean to myself all these years. Sad that I had made it so much bigger than it really was. Sad that I had 'abused' myself by rejecting my skin, instead of loving it. I stood in front of that mirror finally able to look at myself and say, "I am SO sorry! I'm so sorry for being so mean and hurtful. From now on it stops! I will learn to love and accept you!"
It's been two weeks since that time and I am slowly learning to love myself...ALL of me. Not just my skin, but myself as a whole. For years I felt defined by my skin. It was as if I was walking around with a distorted pair of glasses on, seeing only the bad things in myself....things that no one else but me saw. I have been my own worst enemy. I find myself slowly taking off those glasses now and becoming 'whole.' 

I would love to be strong enough one day to be of some encouragement and comfort to someone else going through this. Right now, however, I am on this new journey trying to heal and show myself compassion every day.

My husband and I are currently living in Italy. I find myself traveling all over, trying to 'find' the me that I kept hidden for all these years. I want to know myself in a way that I have never known before because I was too busy beating myself up. Last week I went to Paris. This week I went to Venice....and who knows where I'll go next week. All I know is that I just want to let "LIFE" inside my heart and start living! I don't want to be that timid, frightened girl anymore. I want to be free to love myself no matter what I look like!

I love that you have learned to accept yourself from such a young age. I'm 30 years old and I feel as though I am taking baby steps for the first time in my life. I'm finally ready for healing and peace. I'm ready for a new start.

I also quoted Ann Curry when she said to you on the Today Show,
"Compassion and understanding is the road, and not separation and judgment." That's where I am right now. Learning to show myself compassion and understanding for the first time in my life!

I just wanted to share that with you since you've played such a big part in this new 'path' I'm on now. The only thing I wish were different about your blog is that you would post more frequently! :) I love reading what you have to share. 
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"Lucky", You Say... Part Two



My Vitiligo spread to my arms and legs, then torso before taking over my face around the time of puberty.


Here I am aged 8 in Cyprus - you can't see my arms and legs, which shows how easy they are to hide (when it's not summer), but you can see my natural original colour on my face (except for the small de-pigmented patches at the very top of my forehead by my hairline)... This was just before the Vitiligo picked up the pace and patches started growing and multiplying. You can also see it on my knuckles and the back of my hand in the first picture.




Tuesday, May 11, 2010

'Lucky' you say... - Part One

It really bothers me when people tell me that I am "lucky". I hate that word, mainly because the people using the word don't understand what it took to get where I am today and they don't understand that I am STILL with a skin condition. I did not suddenly wake up white one day (you wouldn't believe how many people think this is the case!) The journey has been a long and hard one, and I'd like to share it with you by posting up a photo once a week for the next few weeks for you to witness the transformation from 'black to white' for yourselves. 


     



Here I am less than 2 years old in my homeland of Trinidad... It has been pretty shocking for me to look at these photos as well, as I have not seen some of them for years and it really brings back a lot of memories!


Thanks again for your support and Be Blessed Always

Sunday, May 9, 2010

Important Update

I know, I know, it's been so long since I sent out a message to you all that it seems as though I have dropped off the face of the earth! Forgive me...

Actually, I've been working hard to try and secure permission to hold the first ever Walk For Skin here in Trinidad at the end of June... The aim is to raise awareness and bring attention to the people suffering with skin diseases who need a voice and a show of support for their ordeal... There has never been an event held purely for skin in Trinidad & Tobago so this will be a little bit of history in the making!

I have created a donation page where I managed to raise over 800 British pounds last year when I completed the Walk For Skin in London... This year I know a lot more people and I have set my target at 1000 pounds, which will go towards funding for research and support, cures and treatments for skin diseases within the British Skin Foundation and of course, the Vitiligo society...

I appreciate every bit of support you have given me in this past year, believe that :) Every message of thanks, hope & support has been read and now I would like to invite you to help me give back to people who are enduring similar experiences in their lives. A donation as little as 1 pound will go a long way, especially if each of my friends make a small donation, the target will easily be met and make a HUGE difference. In my opinion, we can pull together and raise a whole lot more than that...

I know a lot of people sit back and think that someone else will do it, but
it takes each person individually to make a collective difference! Please help me help others by heading to the following link and giving whatever you can (no matter how little!)


http://www.justgiving.com/ddevlugt

Thanks once again and Be Blessed Always,
xx
Darcel