Freckles...

You are beautiful... Your skin is flawless...

These are things I try to say to myself when I look at me in the mirror. This is what I say to convince myself that everything is okay and it's not worrying me that there is a new spot on my face that most certainly wasn't there this time last week.

I have never thought of myself as beautiful. Never. Even now, when people say it to me, on whatever rare occasion that may be, it's not a word I would ever use to describe myself. It's hard to change years of habitual thinking. Attractive, maybe. I can see attractive... I pride myself on keeping my body toned and fit, loved my life in the dance studio, so even sexy is a definite possibility. But my skin tortured me enough over the years to stop me from ever using beautiful. 

And yet, when I look in the mirror, I repeat these affirmations to convince myself that that spot has always been there. It's not new, it's not adding to the multitude of tiny spots that I can identify on various parts of my body. Inside though, I am freaking out. Yes, it's only small now, but the point is that it wasn't there a few days ago. And I swear that the spot I noticed two weeks ago is now twice the size it was before.

What does this mean? Does this mean that my Vitiligo is better? Or is it worse? I'm so confused by my condition sometimes because I don't have distinguishable patches like other sufferers, so does this mean that I have an extreme case of bad Vitiligo or a good case of one skin tone, even if it isn't mine? Confused, confused, confused...

I went to a poetry reading the other day with some friends. At the end of the first session, a girl sang a popular song by India Arie called Video. I know the song well enough to sing along, but it was only when I started singing along to the second verse that the lyrics hit me like a two-ton truck:

When I look in the mirror and the only one there is me

Every freckle on my face is where it's supposed to be

But... but... every freckle on my face is not where it's supposed to be though! This is what a voice in my head started screaming and since then, I can't stop thinking about those lyrics. My freckles are changing every day. My skin won't behave itself, so I sometimes feel like I am losing me, or the me I have learned to identify with.

Skin. It's the first point of contact someone has with us. It's the first thing people see, it's how people identify with one another. In one way, our skin defines us. Sad, but true. I refused to let my skin define me as a person growing up, so I became talkative, outgoing, strong-minded and opinionated so that people would judge me outside of my skin and look past the patches to my personality. And then I became one colour and I adapted and learned to have an identity that included my new skin. And now, it feels like after years, I have finally adjusted with this skin that isn't mine in the first place - yet it is - and it's playing tricks on me again.

I keep thinking: Maybe I should stress myself out so that the pigment spots disappear or don't grow so rapidly.

How ridiculous is that? Stressing yourself out to keep the skin you've grown used to. It's ludicrous, but this is how my mind works with regards to my skin. Then I'm thinking maybe I'm getting pigment spots because I'm NOT stressed. Maybe, for once in my life, I'm at peace, I'm even possibly... happy? 

But then if happiness means no stress... and no stress means more pigment... and more pigment patches means I stress out about it... and stressing about it reverses the pigment patches (in my head)... but then I'm stressed out, so I can't feel at peace or happy...

It's a vicious cycle going on in my head right now.

I just wanted you to know that I still worry about these things too. My skin is 99% one colour and my life isn't any more perfect or my mind any calmer than when I was a overcompensating teen with patches. The spots on my face remind me that I still have Vitiligo, I'm not out of the woods yet. Not knowing when or where the next spot will show up is beginning to threaten the identity that I finally managed to accept.

I am scared too. But India Arie goes on to say:

But I learned to love myself unconditionally

Because I am a queen


Yes, indeed.

De-Pigmentation, Re-pigmentation...

For most Vitiligo sufferers, the major concern when patches of lighter skin start to appear, grow and multiply is: How do I get back my original skin colour? How do I make these white patches disappear?

Undoubtedly, this was the case for me as well when my Vitiligo first started developing. Treatments are most definitely geared towards retaining and restoring the original skin colour to the patient. Of course, as I have mentioned before, in very extreme cases of Vitiligo such as my own, where more than 80% or so of the body is completely de-pigmented, the option to “bleach” the remainder of the original skin colour could be put on the table. Please note that this is not an easily attainable option and most doctors are incredibly wary of suggesting this to their patients as it is indeed irreversible but also there is a question of the psychological effects and therefore the ethical issue of choosing that path.

The automatic assumption, and very rightly so I would imagine, is that every patient wants to retain their original skin colour, because that is the way we were born and that is the way that we know ourselves and how our peers know and identify us. Everything that can be done will be done in the hopes of eliminating, or camouflaging, those pesky and devastating white patches.

After almost twenty years, my skin is now completely one colour. Granted it is not the colour I was born with, nor is it the colour I would choose had I been given the choice at the time, but it is the colour I ended up with. Over the years, I have been asked:

• ·         What if your colour comes back?
• ·         Can your colour come back?
• ·         How would you feel if your colour came back?
• ·         Do you want your colour to come back?

When I chose not to bleach the remainder of my dark patches (at some point, “dark skin with white patches” changed to “white skin with dark patches”) at the age of twelve, I did not feel mature enough or responsible enough to dictate what colour my skin should be. The thought of doing something to my skin that was irreversible was terrifying to say the least, because at that time, I knew that the possibility of the Vitiligo reversing could indeed happen. I did not want to eliminate the chance of regaining my beautiful brown skin.

That was then and this is now. I always thought that having my original skin colour would solve my problems, being able to tan would stop me getting taunted by others on the beach or in the Caribbean, everything would be fine if I turned back to the way I was.

Now, I am older and just a little bit wiser.

It took me almost two decades to get to this point. Two decades of my life spent adapting to the changes that my body was making. And two decades to finally be a person that I could live with and accept and that others could also accept for who I am. Going through those changes as a child and a teenager was hard – probably the hardest thing a teen can experience – but the truth is, at a young age, you still have that bubble of family and strong support that helps you through moments of weakness. As an older woman, one who is now trying to stand on her own two feet in the world, I don’t know if I could muster that strength from within to experience another two or more decades of my skin changing back.

I don’t think I have what it takes to be that strong again.

I don’t want to be a yoyo every twenty years of having my skin decide between completely black and completely white. It took this much to get here. It took this much to accept being at this point. I don’t think I can do it again.

So, would I like my original colour back? Yes, I would love to know what it feels like to look like I would have without my Vitiligo. But do I want my original colour to come back now? No. As strong as I may have been going through that transition, it was a strength that took a lot out of both me and my family. Looking back on it, I don’t remember how I got through it, all I know is that I did.

I am not a white woman by definition, nor do I believe that being white is better in any way, but I have adapted to make my situation work for me. If I had remained with patches, I would have adapted to make that work for me also, the way so many of you do. Either way, I would adapt. But I don’t think I would have the strength to do it again. When one of my “freckles” or “beauty moles”, as I like to call them, starts to grow, or a new one appears, I get very anxious. I would never try to bleach them (knowing what bleaching entails following a particular incident in 2008), but I do get scared that it might be happening all over again. The irony of course being that it is still happening now because I never stopped being a Vitiligo sufferer! I still have Vitiligo, which people tend to forget!

And this is why I have so much respect and admiration for those of you who still go through having your patches in today’s world and holding your head high. I don’t know if I could. I remember that at some point I did it, I must have done to reach this day, but I doubt whether I could find that inner strength once again for the reversal. It’s taking enough inner strength to live with a completely different skin colour that isn’t even my own…

The Scars That We Bear...

I have always been fascinated by scars. Strange as this may sound, I was always convinced that anyone with an impressive-looking scar must therefore have an impressive story to tell about how they got it. I always felt that people with scars had LIVED, they had taken risks and gone on wild adventures and lived to tell the tale. Perhaps it was because my own skin did not scar so easily that I was fascinated by this phenomenon.  The very few scars that my skin has managed to bear are, in a very weird way, badges of pride for me because I envy people with really impressive scars and my own scars are reminders of important things that happened in my life.

My god sister came as a blessing and a miracle during my teenage years. We were unsure she would survive to full term and though she was born prematurely, she was indeed a little fighter. As a result of her early arrival, she was placed in an incubator where subsequently a number of medical mistakes caused her to lose her vision in one eye, as well as a drip being left in her arm for too long causing an intravenous burn, creating a considerable scar from her left wrist to her elbow. Nevertheless, she pulled through and I was so proud to be her god sister that I carried her picture on my folder at school and told everyone about the adorable little baby adorning the cover.

Some years ago, when she was at the tender age of four or five, when we were sitting in the car on our way to the movies, I commented that the scar on her arm was looking as if it was fading or getting smaller. She then replied:

“Yes, that’s my scar. I don’t like it because it makes me ugly.”

It broke my heart to hear such a young child say something so awful about themselves that I couldn’t think of what to say. Thinking of how that scar symbolized her fight to survive, in the end I settled for:

“Don’t say that, scars are beautiful! Your scar means that you have a really interesting story to tell everybody when they ask you what it is! I’m sure there’s no one in your class who has a scar like yours or a story like yours… Your scar makes you so special and it’s there to remind you of how special you are…”

She looked at me with her big, innocent eyes and asked me:

“Well, if you like scars so much and they are so special, where’s your scar?”

The question caught me off guard and got me thinking. Where was my scar? Then it dawned on me that my skin was my scar and my skin was my story. Maybe to the rest of the world they could not see a scar in the traditional sense, but the visible part that the world encountered upon meeting me was not as it originally had been. And if I was trying to convince this young, impressionable child that her scar was one of the most beautiful things about her, then I should accept that my scar was one of the most beautiful things about me.

And it is true. For those of us whose skin is changing, or is different to how it was when we were born, we have to see these scars as stories to share with the world about how special we truly are and what we have survived. Scars are amazing, they set us apart from each other and show that we are still human – we still cut, we still bleed, we still hurt… and we still heal. And when we heal, we share our story which can help someone else to heal or feel better about their own scars. Telling my god sister how beautiful both she and her scar were that day helped me to accept my own in some small way. < Having a scar means that you lived to tell the tale. Having a scar means that you survived the fall, you survived the ordeal and you survived the injury that led to you having that scar in the first place. Having a scar to talk about means that you are still alive to talk about it. And for that, scars are beautiful…

Happy birthday to my miracle god sister… Without even knowing it, you opened my eyes with a few simple words.

The Michael Jackson Thing...

In much of the interviews, public speaking or media that I have been fortunate to be a part of since August, I cannot remember any occasion when Michael Jackson was not mentioned at some point or another. Since August, many people ask me questions about MJ, and though I have never had the honour of meeting him or attending one of his concerts, I most certainly always felt that I had a connection to him, indeed via his music as did many of us (I owe my love of dance to him), but more importantly through our shared experiences of living with Vitiligo.

Aged 18 - Dancing a Michael Jackson Tribute at my finale dance show before leaving for university

Granted, my journey has not been entirely the same as his and I am not here to discuss any other aspect of his life other than his Vitiligo nor am I going to discuss whether he bleached his skin or not as I firmly believe that if he DID bleach his skin, it was because of his Vitiligo and NOT because he wanted to be a white man. This notion in itself is completely ridiculous and were it true, there would be a vast amount of people trying to achieve, or achieving (if it's indeed possible) the exact same thing in today's world that we would have heard of by now... Just to be clear, there are a great deal of people, mainly women, who attempt to bleach or lighten their skin in Asian countries as well as West Indian countries and the effects are devastating. It is impossible to achieve an even tone of white that is that many shades lighter than your original skin tone; one's skin tone may even out through lightening creams, it may even lighten a shade or two, but let's be realistic: Michael Jackson did not bleach his skin in order to become a white man.

I was offered the option to depigment the remainder of my dark skin patches once my skin was 80% white. This was after trying a number of treatments to try and bring back my original skin colour. The word that rang in my ears with the depigmentation option however, is one I will never forget:

IRREVERSIBLE.

At the age of twelve and on the brink of puberty, I did not then and still do not now believe that I was old enough, mature enough or responsible enough to make that kind of decision. Furthermore, knowing that Michael Jackson is the prime example to come to mind when something like this is put on the table, I think subconsciously I knew what this would mean for me as well. It wasn't just about getting rid of patchy skin to look somewhat 'normal'. This was about changing my ENTIRE IDENTITY - ethnic, racial and cultural. I was no Michael Jackson, but people in society are just as judgmental of each other as they are of those A-listers. I knew, judging from what he must have had to go through, that if I ever chose to bleach the remainder of my skin, that I would be judged for it by people who did not even know me.

Well, isn't it ironic that my skin decided to depigment itself in the end, bleach or no bleach? This doesn't happen to the majority of people with Vitiligo. I am not the first person to completely and naturally change from black to white (thanks to this year's experience, I have since met three other individuals like myself), and I doubt I will be the last, but it is rare enough to be a pretty amazing thing - Amazing to experience as well as to hear about for you I am sure.

Frightening as hell. Even today.

When my story came to light, there were many (I mean MANY) different opinions voiced. Most of the responses I received or read were incredibly positive and uplifting and very very supportive. And then there were the others:

"It would seem she became white from head to toe - even her hair straightened out for the picture in the papers!" (Well then I guess I shouldn't say anything about women who consistently go to ridiculous lengths to put weaves or hair extensions in their hair to get luxuriously straight locks... I never thought that blowdrying [not chemically straightening, like other women do] my naturally mixed race hair would have been an issue for people...)

"She has been disowned by the black community, the association of which I am the President... She is not one of us... Who is joining me?"

"She would never be accepted by white people - her high forehead, broad nose and flared nostrils prove that she is not white..."

"She is missing the frontal lobe that would ever make her a white woman..."

"This girl is a RACIST" (after I was misquoted on a website in a different language as having said that I was lucky to now be white... What I had said was that I was fortunate that my skin changed to one colour so that at least I could assume some sort of normalcy especially during my social years)

On the one hand, this makes me laugh... Me, a racist?! My roots are Dutch, Creole, Portuguese, British and Indian; I was born in Trinidad & Tobago but raised in Israel, Syria and Cyprus; I speak four languages and my best friends are Greek/Swiss, Mauritian, Lebanese, Ukrainian and British whose religions range from Muslim to Atheist, Greek or Russian Orthodox and Roman Catholic and this was NEVER a problem for us during our years of friendship... And I'm racist because of a skin condition I have no control over?!

Ignorance is really a mysterious thing. Upon reading these comments, you can only imagine how I felt. So I stopped reading. None of this had anything to do with my story, none of this had anything to do with what I had revealed. If people who did not know me could say this about me within 24 hours of the story being on the Internet, I could only imagine what it felt like for the world's greatest entertainer who had been in the spotlight his entire life.

However, more recently, I was sent a link to my bit on the Today Show for MSNBC that had been posted up on YouTube and  what was really interesting to read was the ongoing discussion in the comments section below the video... And of course, the discussion turned to Michael Jackson - did he or didn't he?

But the issue that really made me want to write this post was a host of questions that kept popping up:

• Why didn't the media show this before? 
• Why is this girl only coming out now that Michael Jackson is dead? 
• Where was she all this time? 
• Why was this not made a bigger issue during his lifetime?

First of all, "this girl" has always existed, and I have always had Vitiligo. Whether or not anyone chose to bring this to the media or not was never my concern. The problem with society is that most of the time we are ignorant to what is happening around us. People with Vitiligo have always been around, they walk past you every day, but many people never noticed until they read my story and became aware of it.

Furthermore, it has only been six years since I turned completely white. Before that, my skin was patchy like any other Vitiligo sufferer. So once again, where was I all this time? I was trying to live like a normal teenager on a Greek island in the Mediterranean... where were you?

Why am I only coming out now that Michael Jackson is dead? Correction - I am not "coming out" anywhere to anyone. I have always been out there, it was just up to society to notice me (as well as other people wtih visible skin conditions) for me and not for my skin. I had no desire to personally contact any newspaper or TV station to tell them about myself; I was contacted... I don't believe that I am any different to all of the other skin disease sufferers out there so why would I expect to be noticed rather than someone else?

The interview for the story that appeared in the newspapers about me actually took place at the end of May/beginning of June 2009, long before Michael Jackson's passing, and was only meant to be featured in a small column in the health section. I will stand up for the media in this one instance for using the opportunity of Michael Jackson's untimely and unfortunate death to make this story a lot bigger than it was going to be. Had it not then become a double page spread because of the link to Michael Jackson's own Vitiligo, then so many people (and so many of you) would still be oblivious to the devastation that Vitiligo can cause, because so many people would still not know anything about it. This is the one time I would say that in taking advantage of a situation or opportunity, the media actually has helped to make a positive difference, both in my life and in the lives of many others who now feel like they have a voice and not just a skin condition that makes them different.

I hope that I have cleared up that little misunderstanding - I did not seek to make myself public because of Michael Jackson's passing, my story was being documented long before that. I've been called Michael Jackson for years (according to one person "the resemblance is certainly there!")... It just so happened that what was going to be a small writeup that most people would have probably skimmed past at any other time, became a much bigger deal because it had links to such a huge star like Michael Jackson, who passed away as my interview was being processed.

One more comment I'd like to share with you that was written following my NBC interview, and I'm glad it was made:

"I guess the world really does owe Michael Jackson an apology for what we as a society put him through."

May he truly find some peace now.

Your Skin and the Sun...

Before getting into the more personal aspects of what living with Vitiligo has been like, I would like to use this post to answer a few of the more practical questions that have been sent to me regarding my skin, first and foremost being of course - SKIN CARE.

Do you really wear SPF 100 every day?

No. It depends on the length of time I plan to be in the sun, how active I intend on being whilst exposing my skin to the sun and also the daily weather forecast. I generally wear makeup that contains SPF (ranging from 15 to 30) in it, which protects my face and neck. I also sometimes have a fringe (or bangs as it is called in the West) which can help protect my face from the sun, or make a style statement by wearing hats, scarves or sunglasses... There's no reason why we cannot have fun whilst protecting our skin...

I wear protection on my arms, chest and shoulders if I am going to be exposed to the sun frequently during the day e.g. when out shopping, hanging out in the park or when I was in the playground back in my school days and we were not allowed to stay in the classrooms at break time. This only needs to be about SPF 30 if I am switching between being inside and outside often, but common sense dictates that even when outside, I try to walk or sit in the shade.

SPF 100 is what I use MOST DEFINITELY when I will be spending a hot afternoon outdoors at a BBQ or in the park or a day at the beach, which in any case is a rare thing for me (despite being an island girl!). The sun's rays are most harmful during the hours in which people tend to visit the beach (mid- to early afternoon), so I try myself to go either very early in the morning or later on in the afternoon (after 3pm) when the sun will not be as strong. Of course, this is sometimes inconvenient for everyone else in the group wanting to sunbathe etc. so I will wear a T-shirt sometimes as well as my SPF100, swim for shorter periods of time, as the water reflects the sunlight, and reapply sunblock often. Once again, it never hurts to wear a hat and/or sunglasses whenever you can.

Like I said, there is no reason to not look good whilst protecting your skin. I have acquired a number of cardigans, scarves and light jackets to carry with me when out and about, perhaps when I may not have any more sunblock or sometimes don't wish to have the hassle of constantly having to reapply. There are a lot of stylish coverup options available that are in light, breathable fabrics that won't be bothersome on a hot day.

How does your skin react in the sun without protection?

When I was nine years old, having never really protected my skin whilst it was dark, we had a serious wakeup call after a long day at the beach in Trinidad. By this point, my skin was now completely patchy with both dark and white patches all over my body due to the Vitiligo. I got sunburn and sunstroke and woke up the next day with water-filled blisters from head to toe. My skin was so sensitive to movement because of the blistering (the breeze blowing on it, an insect flying past etc.) that every morning for almost two weeks I would sit in a bathtub filled with cool water for hours on end every morning when I woke up. I looked like I had been burnt in a fire and the burn was verbally compared to first or second degree fire burns by my doctor, who actually could not find a suitable place to inject me for a booster shot I was due to have.

After about a week the blisters started bursting and deflating, after which my skin was sore and red all over from the sunburn, and then of course after some time, my skin started peeling. This experience was enough to ensure that any time spent in the sun, especially at the beach, meant that I HAD to be fully protected.

A mild day of sun, where I may be shopping or running errands, will leave me sunkissed and slightly pink without any protection. As mentioned before, I try to spend as much time in the shade as possible if I have to be outside without sunblock, or I carry a light jacket to wear when I can't avoid the sun.

Having Vitiligo means your skin does not have the protection it would normally have, whether you have a single patch or many patches, it is YOUR RESPONSIBILITY to ensure that you have a way of protecting your skin. There is a greater risk for skin cancer and this is no joke. Sunblock can be smelly, it can also be inconvenient or irritating to have to constantly reapply, I totally empathise with this and will admit that I am not always willing to be as responsible as I should with sunblock... However, I have stressed that there are other ways to protect yourself. If your patches are on your face and neck, try using makeup or a moisturiser with SPF content to provide some protection. I currently use MAC makeup which has proven to be very effective, however, anything that provides a barrier between your skin and the sun should work (especially if it is waterproof which will protect against swimming and/or perspiring during the day!)

Remember that your lips may also have lost pigment. Moisturise, moisturise, moisturise! And make sure your lip balm or lipstick of choice also provides sun protection. Most of them do nowadays.

Please note that skin protection is VITAL for ALL SKIN TYPES and ALL RACES, even if darker skin tones are naturally more protected, this does not matter in the long run. EVERYONE is prone to sun damage and even skin cancer, so regardless of whether you have Vitiligo or not, be aware of your skin's relationship to the sun.

Allow me to introduce myself...

A few months ago, my life was a little bit of this and a little bit of that, living it to the best of my ability and yet, like every other human being should be, getting frustrated at the world and at myself for not being able to do more, say more and be more.

A few weeks ago my story living with the skin condition Vitiligo came to light and the response worldwide was overwhelming within a few hours of publishing in the newspapers and online - I never expected it. The recent death and turbulent life of Michael Jackson, who once said that he had Vitiligo, made this story even more publicized due to the fact that I have changed from having dark skin to now being completely white, proving that it is indeed possible.

I am still dealing with the snowball effect of the past few weeks. Overwhelming does not begin to describe the path that I have now been put on, in terms of phone calls, interviews and messages of support (but not always) which have been coming from every corner of the globe. For me, this was unexpected. I have lived with this condition since the age of five, I am now 23 years old. This is my version of "normal". This is my every day.

I have realized that to others, however, this is more than unusual, and for some, it could be a means of support. Following my most recent interview on the NBC's Today Show, as well as the Inside Edition on CBS, the amount of emails and messages I have received from other sufferers of Vitiligo, whether to offer support or to ask various questions about coping with the condition, has pushed me to start this blog as a way of responding to you and hopefully connecting you to each other.

Growing up, I had no one within my age group who had Vitiligo to help me with my condition. It was all on my parents to improvise and I think they have done a fantastic job, considering what they had to work with. They have given me, throughout my life, the confidence to now go ahead and do what it takes to bring whatever awareness I can by sharing my story. I hope this blog can help you, and please believe that the entire experience has been very cathartic for me in raising some past demons and dealing with them, even if it is years down the line.

I don't have all the answers. I'm not sure I have any of the answers. The most I can do is share my own experiences and leave it for you to discuss. Each new blog will share a story, a situation or a lesson that I went through during my time with Vitiligo. If any one of these stories helps someone in any way, whether you have Vitiligo or not, then I believe I have achieved something.

My name is Darcel de Vlugt. I am a Trinidadian woman of mixed heritage who was born with dark skin. My skin is now completely white due to the skin pigmentation disorder known as Vitiligo.

Welcome to my world...