Saturday, December 12, 2009


*Please note that this is my personal experience and opinion on bleaching and what may not have worked for me may have worked for someone else. I do not claim to know about the effects of bleaching for Vitiligo on any grand scale nor do I advocate or endorse any product that changes skin colour. In expressing my opinion however, please note that I do not condemn bleaching for those who seriously feel that it may help them with their condition, or those who have already undergone de-pigmentation*

My skin turned white completely naturally, of its own accord, without any bleaching or other treatment from the age of 12. To this day, the only dark spots on my entire body are on my face, looking more like freckles or moles than Vitiligo patches. During times of great workload or long periods spent with family, these spots may either shrink and disappear (stress causing de-pigmentation) or grow and multiply (lack of stress causing re-pigmentation). At least, this is what I believe it is.

This may seem incredibly silly, but when I see too many dark spots appearing or when they start growing to a size that is considerably larger than a ‘beauty mole’ or ‘freckle’, I start getting a little anxious and trying to find ways to stress myself out on purpose, because in my head, being stressed means staying one colour and reducing my dark spots. Ask anyone who knows me and they will attest to the fact that I am always busy and I always take on a lot more than I should, and I am a bit of an over-achiever… Try to psycho-analyse me and you will probably see that this is one of the reasons why. I often joke to my closest friends about being “the poster child for stress”. I also remember joking to my ex that he was good for me because he was “always stressing me out” and therefore stopping dark patches from appearing. What a warped way of thinking!

At some point last year, during a pretty vulnerable time, I became particularly bothered by the amount of freckles on my face that had decided to grow and multiply. Usually, I can gauge how many dark spots are on my cheeks, nose or around my lips during the year depending on the weather, and I can point them out blindfolded because I know them so well. But leading up to August of 2008, I felt like it was getting out of control and it really started to bother me.

I asked a dermatologist if there was a way that I could eliminate some of the dark spots, but not all as I had grown emotionally attached to a few of the spots that had always been there since my complete transformation (amusing as this sounds, it’s true!). These were namely one on my cheek, a tiny one on my right eyelid, one above my lip and one at the corner of my bottom lip (once mistaken for a spot of chocolate by a friend, leading to me furiously rubbing around my mouth to eliminate the mysterious chocolate patch before realizing that they had been referring to a permanent patch of pigmented skin!).

Aside from these special ‘beauty moles’, I wanted to reduce or eliminate the rest of the spots that were now beginning to take over and so I was prescribed a 14% bleaching cream called Tri-Luma, which I was meant to apply nightly with a Q-tip to each of the spots for two months. I began doing this and saw within a couple of days that the skin surrounding the spots was definitely a little lighter, therefore the spots themselves must be getting lighter also.

After a week, I noticed a slight burning whenever I applied the cream to the spots, which were looking somewhat red, but I took this as a good sign because they were no longer as dark as they had been. Within two weeks, my skin had started peeling and was raw and sore. Makeup made it look worse and yet no makeup was just as horrendous. When I applied the cream, it burned the raw skin and became painful to continue and also painful to cover with makeup. In my eyes, I looked like I had open sores all over my face and put the cream away, never to be used again. I thought that this was how bleaching creams worked – they peeled back all the layers of the skin to reveal the fresh, raw layers without pigment underneath… Then I decided that if that was what I had to go through simply to eliminate a few unwanted spots that looked like moles, it certainly was not worth it. It most certainly was not worth damaging my otherwise flawless skin because I felt uncomfortable with a few dark spots... Makeup could cover the dark spots (thank the Lord for MAC concealer), but nothing could repair my skin if it got permanently burnt or damaged by the bleaching cream.  My skin was reacting too violently to a cream that was not even supposed to be that strong.

After I stopped using the cream (at about three weeks or so), one or two of the spots disappeared completely. Most of them came back and some of them were reduced but some of them were also darker than before. I have not tried the cream since and am reluctant to do anything else because it is not worth it. I’m sure my anxiety over a few dark spots is mostly because of my own thoughts in my head, and no one actually cares about a few dark spots on my face. They simply look like moles. Furthermore, Vitiligo sufferers with patches are going through a hell of a lot more on a daily basis on their arms and legs, let alone their faces, so I decided to stop being so selfish and use makeup instead.

Today, I have a total of about twenty freckles or moles on my face and two on my shoulder. The ones on my face do not show when I apply my makeup, unless I choose to highlight them with a makeup pencil as a beauty trick. The two on my shoulder arrived shortly after my first TV appearance and I have been monitoring them closely as I find that they have been growing quite rapidly, although to be honest they are still small enough to be considered beauty marks and not even moles. Nevertheless, I am still careful to take note of any changes.

The idea that my skin may once again become patchy does scare me, but at the end of the day if that is what is meant to happen to me, then so be it. The idea of what bleaching could have done to my skin is not one I wish to consider and will never be trying again, and certainly not one that I would recommend to anyone, including those women around the world who seem to be addicted to bleaching creams and skin-lightening products.

It is not worth it. Not today, not tomorrow, not ever. I would much rather have my skin as it is now, than truly destroy it forever for the sake of eliminating a few minimal patches.

Monday, December 7, 2009

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…

Friday, December 4, 2009

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.

Friday, November 27, 2009

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:


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.

Monday, October 5, 2009

How Does It REALLY Feel? - Part One

I have been highlighting the psychological and emotional effects that Vitiligo can have on an individual, as well as a lengthy discussion about being in the sun without any pigment to protect your skin, but honestly... what is living with Vitiligo REALLY like? Looking at examples from across the globe, here are some brutally honest home truths, thoughts and realisations:

People with Vitiligo are prone to other illnesses such as alopecia, diabetes, thyroid disease and of course, skin cancer.

I myself have suffered a great deal of hair loss and receding hairline during my teenage years. I cannot tell you how scary this is. A fifteen-year-old girl should not have to be using her time to research hair transplant procedures because she is paranoid about the amount of her hair that is falling out. Thankfully, this is no longer so much of an issue, but added to the fact that I have been dyeing my hair, which grows white, since the age of 12, I live in constant fear of what this could do to my hair over time. It is necessary for me to dye the white hair, as hair without pigment is also vulnerable to the sun and can make the scalp vulnerable as a result. On a social level, being on the brink of puberty with white roots is not fun and extremely difficult to explain to your peers. I also occasionally grow white eyelashes. My body hair grows white. We are all mature enough to understand how this can be quite devastating in a young adult on many levels.

I try to get blood tests every three to four years to monitor whether I could develop diabetes or not. I was recently tested for thyroid disease due to issues with my throat and nasal passageway but thankfully they were not linked. I must also be aware of any dark spots that appear, which may indeed be dangerous moles rather than my original pigment "freckles", as I like to call them.

Aged 13 or 14 - you can see my hair is growing white and the brown patches on my face

Vitiligo is usually found in, or can start appearing in, the orifices of the body - around the eyes, nose, mouth, backs of knees, elbows and armpits. This list also includes the genitals.

How traumatising it must be for a young adult, or any adult for that matter, to have patchy skin somewhere as personal as your genitals. With the level of ignorance regarding sex education in some parts of the world, this in itself could be enough to shun someone from society, be it in a high school or a village, or labelled as "diseased" by your peers.

How many people would want to be served food in a restaurant by someone whose hands had depigmentation patches? Be honest with yourself. Not everyone is as accepting as you think you are. Having Vitiligo can affect a person's chances for employment in a business where interaction with customers is key. If visible tattoos can be enough to bother a client and affect employment, don't think that this can't as well.

Patches on the face can look comical and lead to many comments and bullying. A lot of people with the condition invest in makeup to cover depigmentation patches. When I have researched such makeup, I found that it is akin to stage makeup (i.e. the makeup used in theatre production), and a person can go to stores that sell stage makeup products and have them mix the right skin tone in order to blend into the natural skin whilst covering the lighter patches. Having makeup mixed for you is incredibly expensive, and the reason why this particular makeup is used over, say, commercial or mainstream products is because the pigment in the makeup is thicker and will therefore provide better and longer-lasting coverage throughout the day. This must not be fun at all during summer and I'm curious to know if this qualifies as a medical expense. I suspect the answer would be no.

In India, Vitiligo is ranked as one of the top three diseases alongside malaria & leprosy

Controversial but it needs to be done in order to really highlight how people across the world are made to suffer for having this condition...

This is quite shocking to me considering the severity of malaria and leprosy. Vitiligo is neither life-threatening nor contagious and yet, being ranked with other such diseases or illnesses has serious social implications - many people may fail to realise that Vitiligo is, more or less, harmless to others. Furthermore, according to an article I read online, which was very informative about the Indian culture's attitude towards people with Vitiligo, a woman who has it is likely to never get married, and should a woman develop Vitiligo following marriage, her husband could divorce her...

In THIS day and age?! Are you kidding me?!

This was my first reaction to reading this information. My second reaction was to scoff at the irony that women with fairer skin are knowingly held in high regard in India and are considered to be more beautiful (look at Bollywood and what its idea of beauty is), and yet a woman whose skin is changing to a lighter colour should be scorned and ridiculed by such a society that openly prefers lighter skin, and treated as badly as someone with leprosy? Amazing. The third thought to cross my mind was, I wonder if a sufferer like me would be scorned in India for having such a "disease" to such an extent, or revered for having managed to change to completely fair?
Please note that in no way am I maliciously attacking India, I am simply highlighting how hypocritical it is or ironic in the case of my situation.

This also brings to mind a number of times when I have been told by people of Indian heritage in my own country of Trinidad and Tobago: "Well, you're white now so you're lucky..."
I'm white now so I'm lucky... can someone explain to me why on earth I should consider myself lucky? The only thing lucky about me is this:- I am lucky that I haven't let society dictate what kind of person I should be because of my Vitiligo...

In East Africa, albinos are targeted for body parts to use in black magic. I have also heard stories of albinos being eaten. I'm sure they don't feel lucky for being white. The world is an amazing place.

You can read more of this incredibly interesting article covering Vitligo in the Indian culture at:

Saturday, September 26, 2009

The Race Card...

This post is a little anecdotal and a little more personal, since I was the target of some verbal abuse earlier on today and would like to write about it, more to calm my own anger and turmoil than anything else, but feel free to discuss or comment.

For those of you that may not know much about Trinidad & Tobago, I will be brutally honest, which by no means is a reflection of my love or patriotism towards my country, nor is it a reflection on how absolutely beautiful I believe my country to be, but I am simply telling it as is. Trinidad has a social hierarchy, speaking in very broad terms, although we are a nation of many races, cultures, ethnicities and backgrounds, there is still a sense of: "You belong here... and you belong here". Skin colour is a major factor in this, it is generally found that people are put in categories of this social and racial hierarchy, with White being, to some, the top of the top (aim to marry a white person, be a white person, live like a white person). It seems sometimes that the darker one's skin gets, the lower on the social or racial hierarchy you 'belong'. I am sure this is the case in many countries but I personally HATE this. There are many ways I can elaborate on this in terms of people behaving as if their skin colour entitles them to a certain attitude, swagger or comportment (see the previous post) but that is an entirely different controversial discussion that could go on for centuries...

One reason why this has been brought to my attention more and more over the years (it can be very subtle or very outright depending on what region of the country you come from - yes, there is racial segregation to a certain degree, very much like London or New York where there are certain ethnic communities), is because of my own skin, which has prompted certain types of responses or treatment, both harsh and "too nice", over the years, and makes me wonder if I am being seen for who I truly am. I remember a few years ago organising a night out with some of my cousins and their friends and hearing one person say: "Yes, let's go into that club with Darcel... we'll get in because she's white!"

This particular statement stunned me, because it never occurred to me that this may be why some people want to know me or be around me. Is my skin colour really access to some sort of privilege or advantage that I would not otherwise be allowed to experience? Would a nightclub in Trinidad & Tobago, the most multi-cultural land in the world, really deny me entry if I had my naturally dark skin colour? Would it not be about stature, grace and the way in which I carried and conducted myself as opposed to my skin colour?

This in itself has many a time thrown me into doubts about who my real friends are and who are trying to benefit socially off of my medical predicament. I have never used my skin colour as a reason for being able to do something socially. Anything that I do, anywhere that I go, anything that I say is because it is Darcel doing it, and not a white girl nor a black girl. Yes, I am the sum of my experience, but I am also the sum of a Dutch, Portuguese, Creole, Indian, British and Bajan heritage; the sum of a Middle Eastern and Mediterranean upbringing; the sum of a European education as well as the sum of years of the skin condition Vitiligo... am I really one to be categorized or simplified?

Today, in a fabric store in the capital of Trinidad, Port-of-Spain, with my mother, I was purchasing the fabrics for my new collection from the very pleasant sales man who always assists me, when a group of about 10 youths, mostly female, from the CCC youth development program walked into the fabric store. They were all wearing the same blue T-shirt so they were rather noticeable but I was oblivious to them as I went about my business like a normal human being. Suddenly, as my sixth sense has been perfected over the years, I felt that I was being watched and looked up to see about 7 of the group standing in the middle of the fabric store staring at me. This for me is normal. So I went back to my business and said nothing. Then my mother chuckled and I knew that she had also seen them blatantly staring and whispering.

Two minutes later, the same group that had been watching me decided to walk past the table where I was handling my merchandise with the sales man, and as the store is divided into a grid system of rows of fabric to walk between, they were in single file and one by one as they walked past, very obviously turned their heads left to stare at me some more, with one boy saying (again something I am used to): "Wow! She is really really white!!"

Again, I ignored it and my mother chuckled. This is so normal for me and my parents that we really don't bother to confront every case of ignorance we encounter or our lives would be wasted. However, about twenty seconds after passing one way, the single file line turned around and walked back in the direction they had come from, past my table again, and again blatantly, and rudely, staring, this time making a couple of comments as girls are known to do in a very catty, bitchy or confrontational manner. By this point I was beginning to feel harrassed and looked at my mother and said: "Do you realise that every single person in a blue T-shirt has a staring problem?" to lighten the situation and we both laughed to each other. My mother being the humourous woman that she is then pointed directly at the group and said loudly: "Who them? Yes, I see them staring, it's clear they have no manners!" and we both laughed again and continued our business.

Usually that is enough to make any google-eyes ashamed once they realise how rude they have been and turn and walk away or come and apologize. But not this time. The group of five females then walked behind the fabrics to where they could take turns peeking around the fabric to look at me and my skin, stare, point, whisper and then fall about laughing. It was at this point that I started to get angry. My mother, ever the protector, made a loud comment about one of the girls in the group who was wearing a headscarf and was clearly Muslim, indicating that as a Muslim she should be just and righteous as Islam preaches and had no right to be talking about me, pointing or laughing. In my opinion, my mother was absolutely right because I always say, why should you be allowed to comment on a visible condition of mine and then be offended if someone comments on a visible condition of your own? If I were to turn to someone with dark skin who calls me "Whitey!!" from across the street and respond: "Yes, Blackie!"... what kind of person would that make me? I would immediately be labelled a racist without question... How fair is that?!

The girls then walked past two more times, with the Muslim girl now saying loudly to the others, without looking at me: "Yeah, let her see us walking past another time!" at which point I will admit, I snapped. I have a lot of patience because of this condition and because of recent events which require me to conduct myself in a certain way and not respond to ignorance with ignorance.. . But we are in a FABRIC STORE and I am not bothering you or harrassing you or doing anything to you, so why are you harrassing me? Yes... I snapped.

I whipped my head up, looked the girls straight in the eye and said from across the table: "If you have a problem, then have the guts to say it to my face instead of loudly parading yourselves in front of me!" which caused them to stop and look at me as if they wanted to start fighting. So I repeated: "Yeah, if you're so loud and so bold, come and tell me what it is you have to say to my face huh?"

To cut a long story short, it was my turn to cash and apparently the girls had begun hurling abuse and using fighting words in my direction, talking about hitting me and whatnot, at which point my mother found the security guard who promptly threw them out. But I was shaking. I was LIVID. I still am.

I do not deserve this. I do not deserve abuse for a skin condition I have no control over. Not to mention how SAD it makes me that a small, multi-cultural island like Trinidad & Tobago can still harbour such ignorance in the youth, because this is my country! How dare you threaten me when I have done nothing to you!

This brings up many racism issues as well as the Vitiligo issue, which like I said we could argue forever, however, this is just to show you a little bit of what my every day life has been like for eighteen years. It never ends. Whether I am black, patchy or white, it never ends and someone always has an issue. I try to be as patient and calm as possible and walk away from the situation, but sometimes, it becomes overwhelming, and I am only human. Like I said, I don't have the answers. But thanks to India Arie for the song that played on the radio on the way home, from which I will borrow a few lines:

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

Tuesday, September 8, 2009

Discretion is a Virtue...

Sometimes in this world, it's not WHAT you say to someone as much as it is HOW you choose to say it.

When I was younger, children were the most brutally honest in their reactions towards me. This, of course, is always a reflection of the way they are being taught by their parents or how they see their parents react to certain things. In Syria, I had people coming up to me to actually rub my skin to see if it would come off... I've also had children asking their parents loudly whilst pointing directly in my face: "Mum! What's wrong with THAT girl? She looks like she has a cow's skin!"... There is not much you can really do to defend yourself at the age of 8 or 9 when that happens, because it's up to the parents of that child to teach them discretion, whilst still remembering that it is a child you are dealing with. The world is a cruel place.

Then there is the polite yet curious child, my favourite kind. In a supermarket in Cyprus, when I was almost 8 yrs old, a little boy of about 5 or 6 was with his dad and said, not too loudly and without pointing, but they were near enough to myself and my mother to be heard: "Daddy, why does that girl's skin look like that?" His dad proceeded to scold him, but it was unnecessary because you could tell that this little boy genuinely was concerned and wanted to know the reason. My mum encouraged me to go up to him and explain. She said to me that sometimes people will say horrible things, but there are some people who will really want to know about my skin and about me, and I should always be ready to answer any of those questions instead of feeling uncomfortable. She said: "It's better that they ask you outright, than stand across the room and point and comment."

After explaining to the little boy that my skin was patchy because I had a condition called Vitiligo etc., I made a friend for the rest of that hour in the supermarket. He apologised if I had been offended (he was incredibly mature for his age, obviously!) and asked if he could walk with my mum and me as we shopped. It turned out to be a positive experience overall, and at the end of the day I much prefer if someone simply asks, instead of assuming they know.

This anecdote brings me to the real purpose of today's post, which is to reply to an email I received early this morning. I wanted to share this with you to show the more tactful individuals who have contacted me that not everyone thinks in the same way, and also to answer the questions I was asked by this particular individual, no matter how it was written.

The original email, unedited except for name omission:

Hi Marcel !
My name is ****** and i recently stumbled upon your biography while researching art online. Needless to say i could not believe it until i saw your photo!
I want to know if you feel like a .......Person? A Black Person? A White Person? Or, perhaps is it more dramatic, like the change of sex when a woman trasforms into a man and vise versa?
Do you lie to yourselfwhen it comes to being black or white?
Can you compare it to changing your looks when an actor applies his(her) makeup he has to play a role?
If all people on Earth would have one skin color and look exactly the same, would there still be any racism left? Do you think that you "act differently" because, technically, you are a white person ?
Ethnically, you look like an Italian or Southern Spanish. Some Finns look like you too, or Swedes

My reply:

Hey ******, thanks for your email.

You asked some very interesting questions although some of them are a little confusing. For example, I do indeed feel like a person, after all, I am a human being so I'm not sure how to feel any otherwise.

As for whether I feel like a black person or a white person, I am mixed race to begin with and so I feel all of these things at once, my skin is merely the visual contact with which other people identify me. I enjoy the fact that people cannot pinpoint where I come from, or what race I truly am, as it entails more than a skin colour, there are facial features, hair characteristics etc. I do not like being categorized or compartmentalized in any case, and believe that my current condition is a positive in the sense that I cross racial and ethnic boundaries with the way I look. I have been asked which box I tick on forms that require Ethnicity details; I refuse to tick "Other" and wish there was a "Mixed" box, however due to my pride of being West Indian, I usually settle for "Black and White Caribbean".

You are the second person to say I look Italian. I get Spanish quite a lot; if my hair is straightened out I may get Eastern European; I currently have bangs which some people say makes me look somewhat Oriental; I have been told I look Turkish as well as Venezuelan; after a few failed attempts, most people do start naming Scandinavian countries in an effort to figure out where I come from. No one has ever said Trinidad.

I think having a skin condition like Vitiligo is a little more serious than an actor having to apply makeup for a role - I will speak for myself when I say that a person with Vitiligo only wishes to be who they are and not play any role to satisfy anyone else. However, we are faced with society's definitions of what we are every day, it requires a lot of strength and fortitude to take a stand and make the world accept you for what you are and not what they want you to be. Unfortunately, not everyone who suffers with a skin condition or disease has that kind of confidence, which is exactly the awareness I am trying to bring to the forefront.

I don't think the Earth was meant to have everyone the same colour, that concept is slightly utopian and unrealistic when you take into consideration climate or even other factors like race (race does not equal skin colour, let's get that straight), nationality, religion or cultural factors which would still set us apart from one another. We've been on the earth for quite some time now and still cannot agree who is right or who is wrong. I doubt erasing all skin colour would solve that problem.

When a child asks me why my skin is so white, I need to be a little tactful with how I put it to them, but I think I have come up with a reasonable explanation that satisfies all parties. I ask if they like to see lots of differently coloured crayons when they open up their crayon box, or would they prefer to have only one colour to use for their colouring books? The answer is always the same - everyone likes to have choice. So I tell them that in the same way a crayon box has a lot of different colours in order to make the prettiest picture, the world was created with people of many different colours so that we would make it a more beautiful and exciting place.

I have to object to your question about "acting differently" because "technically", I am a human being. "Technically", I have DNA like every other Black, White, Indian, Chinese, Spanish or European person in this world. "Technically", I am not a White woman. My heritage and bloodlines say otherwise, as does my original skin colour. I am a mixed race woman, and I don't see that I should "act" a certain way because my race dictates it? Is our behaviour not dictated by our upbringing, our nurturing, our environment and the world we are otherwise exposed to? If someone is physically abused in their youth, might they not act differently to someone of the same skin colour who was not abused? I think you may be touching on the stereotypes of Black or White people that are fed to us through the media - Ebonics or other such factors. Behaviour is not exclusive to race so I'm sorry that I don't know how to answer your question. I doubt I could in any case since I grew up in the Middle East and Mediterranean and was witness to other religions and ways of life, which all contributed to how I behave as a human being and not as a Black or White woman.

I hope my answers helped you, and I hope you don't mind that I allowed other people to see this discussion, as you did touch on some issues that I had planned on bringing up at some point on this blog. Thank you once again for your email. Be safe and blessed always.

Darcel (not Marcel)

Friday, September 4, 2009

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.

Monday, August 31, 2009

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...