How The Bleaching Trend Is Affecting Society

A series of videos, sent to me by a friend regarding the bleaching epidemic and the devastating effects. I don't apologize for so many bleaching posts because it is truly outrageous how much this practice is being abused and the smuggling of illegal products actually has the knock-on effect of making it more difficult for those who actually have medical needs.

See the videos here

Re-Pigmentation During Pregnancy

Since becoming pregnant, I've noticed a definite increase in re-pigmentation on my face and other parts of my body. Again, they are still only the size of little moles but it is adding up over time and it seems that a new one appears daily. At this point, there is nothing I can do to treat them, as I refuse to take any medication or put any chemicals on or in my body for prolonged periods during this time (understandably so). Not to mention that production of melanin increases in all women during pregnancy, so even those who don't have Vitiligo may notice darker areas of skin when expecting. So right now, this is normal.

However, it is making me even more determined to get rid of these marks once and for all once the baby comes. The up and down of re-pigmentation/de-pigmentation has become too much of a roller coaster in the past 2 years, accelerating beyond my wildest imagination and triggered by the slightest change in my lifestyle or mood. Furthermore, I want to know what it feels like to wake up and walk out of the house with some mascara and lipgloss in this hot climate and not have to layer my face with foundation to cover the thirty-something spots of pigment on my face every time. 

What's more, in my line of fashion work, people see me a certain way and believe that how my skin looks with makeup on is also how I look naturally (despite following this blog or my progress with Vitiligo in general) and it seems hard for them to remember to be discreet the one or two times that I have ventured out with my marks showing, only to hear the remark: "Oh, you're breaking out!"

It's not encouraging. No, I am not breaking out. I have the same condition I've always had that you have always known but just forgot to hold your tongue about in your shock that my skin is not flawless or that my feelings may not be affected by such insensitive comments.

Anyway, those are my thoughts for the day. Still struggling with the decision...

Vitiligo and Pregnancy

Forgive my recent absence from the blog as I have been becoming more acquainted with my toilet bowl in the New Year than with my MacBook... due to morning sickness!

Yes, I am very happy to announce that I am expecting my first child this year :) I wasn't sure if I wanted to let such a wide audience of people, who don't know me personally, know about this... but now that I am safely at five months, I believe that the past two years of connecting with people with Vitiligo from around the world served a huge purpose in my life. I see Skinned Alive as a part of my bigger family now and a forum where I can release some of my worries.

This blog post is, however, less about announcing my pregnancy than it is about voicing the thoughts in my head regarding the theory that Vitiligo is hereditary. In my particular case, this is not true, as I am the only one in my family and family history with the condition. However, as it has been explained to me, it is more to do with the presence of a specific gene than the presence of the actual condition. This concerns me deeply when it comes to having children of my own now, understandably so.

In certain regards, my actual journey with Vitiligo, albeit ongoing, was so long ago in my mind (my childhood with changing skin colour) that in some ways I feel I have surpassed those particular trials and tribulations and moved onto a different set of difficulties following my return to Trinidad which now concerns my race and identity.

To imagine my child ever having to go through something that in some ways I have forgotten (for want of a better phrase) or pushed to the back of my mind, is a really hard thing to think about.

I can't deny the possibility that my son or daughter may one day develop the condition. Even if I don't wish to think about it right now, I must accept it and be prepared. The questions running through my head:

• I was strong enough to get through it as a child, but as a woman, do I have what it takes to help my own child get through this? 
• Can I be like my mother; will I have those qualities as a mother (not as someone who has Vitiligo) to guide my child through this, or any condition, with unconditional love and strength and be able to mask how I may be feeling about what they are experiencing in order to get them through it? I know there must have been nights my mother - and father - cried without me knowing, all the while pushing me to be social and live a happy-go-lucky childhood... The thought almost kills me...
• I won't always be there to defend my child in the event that something happens or that they are visibly different to their peers. Will I be able to teach them enough to give them the confidence to step out and face the world when I am not around?
• Even if my children do not develop Vitiligo, they will still need to learn about why their mother looks so different (even to them) - will I raise kids who are strong enough to not let what others say about 'Mummy' affect them, be it in the school playground or on the street?

Of course, I will teach my babies to be tolerant of people from all walks of life and of course they will know all about their mother's condition as they grow older and can process such information. I just hope that the same strength of character that my own parents showed - which I could never understand as a child due to ignorance but today speaks volumes to me with everything that I accomplish thanks to what they did for me and gave to me in terms of personality and drive and passion - is a strength of character that I can find when I need it. 

Even though she is my mother and the closest person to me since birth, she had to watch me grow through something that she could never fully understand due to not having experienced it. And that's gotta be hard if it's your child. If my children experience Vitiligo firsthand, will it be an advantage that I know what they are going through and can relate to them in that sense? Or will I be too emotionally involved in their experiences by recalling my own journey and stumbles and placing it on their shoulders? I'm in two minds about this (and very emotional in front of my computer screen right now!)

At this point, I can only pray for the best and know that the same people who helped me to become who I am, will help me to raise my child to be exactly who he or she was meant to be, Vitiligo or not. When all is said and done, bring it on... 

Bleaching In Jamaica - Part 2

As a followup to my post earlier this week regarding bleaching in Jamaica, please check out this very informative (though sadly so) video describing my previously mentioned points in greater detail...

This is shocking and painful to watch for me...

Retaliation to Skin Bleaching in Jamaica

The latest controversy on my side of the world is all about West Indians, particularly Jamaicans, bleaching their skin... I'm sorry *correction* ruining their skin. This has become even worse with the advocacy of skin bleaching by major dancehall artistes like Vybz Kartel, who has been bleaching his own skin.

To get a better idea of what I'm talking about, check out this article with pictures:

http://newsone.com/entertainment/newsonestaff2/reggae-vybz-kartel-bleaches-skin-cake-soap/

I'm going to try really hard to be tactful and non-judgmental here, so pardon me if I fail miserably, because I am fuming as I write this.

I am appalled. I am disgusted. And I am also really embarrassed. 

Appalled that someone who has nothing physically wrong with their skin (other than a clear sense of self-loathing for its colour) would opt to chemically alter it for no reason other than cosmetic. Why would you risk so much when your skin tone is even and your skin is healthy and blemish-free? We're not talking eliminating a couple of sun spots or freckles here, we're talking about drastically changing the appearance of your skin from head to toe!

For those of you that may not know this, dancehall music is most popular with the less fortunate regions of Jamaica as it often depicts the ways of life found in the ghetto where a lot of people don't know or don't want to know any better, where gang life and violence is rife as well as unprotected sex, rape and teenage pregnancy. For many of the young people in these areas, music is an important form of expression and a lot of these youngsters will blindly follow what they are being told in a song without caring or wanting to know about the repercussions of their actions. These are some of many reasons why dancehall music is often under fire and major scrutiny on a global scale, and why many of the dancehall artistes are often banned from performing in places like Europe and the UK because of the strong lyrical content, which can often be violent, degrading to women and homophobic.

I'm disgusted that an artiste of such fame and high caliber would actually advocate such a ridiculously stupid practice to his fan base (many of whom are children and teenagers!) with so little medical knowledge about what is being done. His comparison of white people tanning is so absolutely pathetic, I wonder if he knows how ridiculous, misinformed and uneducated he sounds (and Vybz Kartel is one of the most educated artistes out there, so I've been told). Tanning (when taken to the extreme) is as unhealthy as bleaching, everybody knows that too much exposure to the sun increases your risk of skin cancer as well as the prolonged use of tanning beds and salons. I would also say that exposure to the sun is a natural occurence and is possible without rubbing any additional creams or chemicals on your skin, but with bleaching you are making a conscious decision to do something completely unnatural to your body's chemistry and DNA makeup. To compare the two is completely ignorant. Not to mention, it looks awful. 

My skin changed naturally and I have gotten comments that I look sick or deathly pale. I can't do anything about something that was not my choice, as much as these comments may bother me. However, if the photo in that article is anything to go by, I would like to think that I look a lot healthier than someone who has made the decision to undergo bleaching their body from head to toe. Does he know the repercussions of ever being in the sun at all after undergoing treatment like this? Not just in the short term but forever?

To each his own may be a fine concept, but when you have a following of so many individuals who will blindly follow what you do and repeat what you say, you have a responsibility to make some smarter decisions about what you preach. Right now, you are basically telling otherwise perfectly healthy people to burn off their skin for absolutely no good reason. As controversial as it may be for me to say this, you are perpetuating the same slave mentality that so many in this world have tried to break away from and rise above.

Vybz Kartel, now that I've seen it for myself, you have embarrassed me. As somebody who never asked for Vitiligo to happen to me or for the emotional and mental distress it brought, and continues to bring into my life and the lives of my family and friends, it is embarrassing to see a fellow West Indian advocating something they know nothing about to young and easily influenced women and children (and some men). It is these types of events and this way of thinking that keeps this region in a "Third World" state and casts a shadow on the way the rest of the world views us, despite the abundance of beauty and wonder that the Caribbean has to offer. 

Frustration

Everytime I think I've got it under control and people have seen enough of me to warrant less ignorance and a little more respect, some toad crawls out from under their rock and makes a totally stupid, indiscreet, completely tactless comment about my skin colour that just makes me so angry by this point. I guess this is partly because of all that I've tried to do in the past year and a half to shed more light on my condition, including hosting the first Walk for Skin in Trinidad, that I'm surprised that such a small country could still have people who haven't paid attention to any of this and opened their minds a little bit.


My partner's neighbour decided the other day to comment to him rather blatantly:


"Aye, we see you bring this white girl home by you sometimes - she's like a vampire man! Where did you find her?"


Which, of course, warranted the string of obscenities my partner couldn't hold back and needless to say, he no longer speaks to his neighbour.


Today, I came home to find a comment on a Facebook photo in which I am tagged (in a friend's album from 2 years ago), where someone I don't know decided to actually press the Submit button and ask:


"Wow!! How is she so white like that?!"


This really rattles my nerves. First of all, because I AM TAGGED in the photo. Which means that you are such a bloody tactless human being that you couldn't even ask your question in a private message to my friend, but instead didn't mind that I saw the extent of your ignorance. Not to mention that were I a weaker person, your comment would make me feel like I was a lesser human being because you felt the need to point out something I have no control over - my skin.


But what really annoys me about these situations is that these are 'my own people', Trinidadians, some of the most ethnically and racially mixed people on earth, making these comments towards ME, one of their own (although admittedly I don't always feel like I belong). Furthermore, sometimes I just wish I could flip the script: how about I call out to a very dark person across the street one day and address them as "Blackie!!" in front of crowds of people? Or how about I comment on a photo about someone's dark skin colour? Do you know how unacceptable (even racist) that would be of me?! 


So how is it any different when it is someone who is "too pale"?! And why do people even feel the need to comment on the obvious? Yes, my skin is white, anyone with half their vision can see that, what contribution did you think you were making to the grand scheme of the world when you chose to point it out?


Answer me that.

Pursuit of Peace of Mind...

So, for the past two months I have been applying a bleaching cream to the brown spots on my face at night when I go to bed. Thankfully, this hasn't had the same reaction as the 14% Triluma that I tried out two years back. My skin actually hasn't changed at all with this new cream, except that in the last few days before the scheduled chemical peel I did notice a slight burn happening whenever I put the cream on (which I assume is a good thing).

On Wednesday (two days ago) I had the deep chemical peel. This is supposed to strip back the layers of skin and expose the fresh skin underneath which will even out my skin tone and reduce the appearance of the brown spots. Let me tell you, I never prayed so hard in my life for those five minutes that the solution was on my face! 'Burn' does not begin to describe it! As I've told my close friends, it felt like millions of red ants were crawling and feasting on my face. After that, I has to keep splashing cold water on my face and then pat it dry. You could see the frosting of my skin (which apparently is a good thing) and after a few minutes, it started to subside and just left my skin very red. Much similar to a roasted tomato.

Right now I am home and out of commission for about a week while the peel works its magic. It's Day Three and my skin is very tight (I feel like calling myself Botox Head) and glossy - much like a bad sunburn, which is exactly what my dermatologist said it would feel like. Of course it feels tighter if I splash water on my face, so I've been given a cream - imagine Vaseline to the power of a thousand - to slather on generously at night to ease the tightness. This makes for very messy pillows, I can tell you that! It also doesn't help if you move a lot in your sleep, and I often find myself waking up to my hand covered in the stuff from touching my face, or hair stuck to my cheek which is quite irritating!

All in all, I'm excited to see what will happen from here. My skin is very red and tender but once the dead skin starts peeling off (which should be by Day Four), I've been told I will have 'baby's skin'... yay me! Of course the pigmented spots will not be completely eliminated by this procedure but they will be greatly reduced. If, in a few months, once my skin is completely healed (with lots of sun protection - I'm on the strictest orders for the next three weeks) from the chemical peel, I feel the need to discuss something more permanent like Benoquin, then I think I will head back to the dermatologist upon my return from London and see how necessary that is. 

For now, I'm just looking forward to not needing to rely on my MAC makeup so much every time I leave the house - it has a tendency to grease up after a few hours of wear, especially in a tropical country like Trinidad! But, thanks to a very special person who thinks I'm "more beautiful without makeup on", I've been feeling a lot more confident, even with my roasted tomato face!

Decisions, Decisions...

I've been contemplating it for weeks now. The little "tip-of-a-pencil" pigment spot on my forearm is now the size of a small mole. How's that for rapid? Not to mention the two little creepers that have appeared un-announced above and below my right eyebrow.


I contacted my dermatologist to discuss my options. Well, the truth is I only really have two options: live with it and see what happens, or de-pigmentation. So I'm making an appointment to discuss de-pigmentation really. No decisions on going through with it after discussion yet.


Scared? Me? To death. It's more the psychological decision that is bothering me - I used to cringe at the thought of someone choosing to bleach their skin, simply because when the option was offered to me at the age of 12, it felt like a rejection of my true identity. I know it's "what's inside that counts", but let's get real, the colour of your skin is a part of your identity as well. I mean, look at what the public did to MJ when I was going through my transformation, how could a decision like that not bother me?


So... I hope I have your support. And I hope nobody else judges me for this decision (especially those who have so ignorantly commented that I am 'rejected by the black community and will never be accepted by the white community'). I'll let you know how the appointment goes... Oh, and I would still want to keep that cute little constellation of three spots forming a triangle on my left cheek. I don't know why, but I like them!

Role Reversal...

I am not a hypocrite. I am not a hypocrite. I am not a hypocrite.


If you only knew how much I find myself freaking out these days when I see new spots of pigment appearing on my skin. They're tiny, unnoticeable, ridiculously small to the untrained, non-Vitiligo-recognizing eye... 


First it was my face... I accepted it, embraced my "freckles", learned to love them (am still learning), and then of course found MAC makeup and my life was transformed by how easily I could camouflage the newcomers, the intruder spots, the invaders who started arriving without warning. The freckles on my face are in constant fluctuation - some grow, some shrink, some fade. I learned to deal with it because I can cover it and it's not much compared to what other people have to go through.


And then, I got one or two little freckles on my shoulders. They're cute, I think they look like sexy little moles when I wear strapless or sleeveless clothing. They are also tiny, beautiful brown spots that I actually don't have a problem with because there's only a few of them and they are very strategically placed on my shoulders to look a little attractive, I think...


And now a week ago, I noticed a tiny, minute, looks-like-the-tip-of-a-pencil spot starting to form on my forearm. And the freaking out begins. In the past year it seems my skin has decided to reverse itself. People will tell me I'm being silly, they are only small dots of colour, it means nothing. But they don't know that's how it all started 20 years ago. Small little dots of white that meant nothing at the time.


I'm getting way ahead of myself and my thoughts are moving faster than my brain. Can I do this? Can I go through this natural ebb and flow of my skin playing tricks on me and deciding when it wants, without any consideration to my life and my wishes and my current state of mind, and how long it took me to get to this point of acceptance? Can I go through this... AGAIN? Another 20 years of my skin reversing itself, very possibly driving me to madness in the process and sending me straight over the edge of yet ANOTHER identity crisis?


Do I reconsider my thoughts on bleaching? And risk being labelled a hypocrite even though everyone should understand that things change, people change, opinions change? And that you never know a person's life until you experience it? Do I wait it out? Do I monitor the situation or take action now? Do I smile and lie to you guys, my readers, and pretend like right now it's fine and I can handle this and if my skin reverses itself, I'm going to hold my head high and go through it publicly like I did before and then be the same person at the end of it all?


I'm not a child anymore. This time is different. There is no bubble of protection like there was before. I have learned to rely on my skin to help me be who I have to be now... if it changes on me again, I'm scared to death that I will change as well...


Rambling thoughts of a crazy person...

A Little Girl's Best Friend...

I never have understood - and never will understand - people who do not like animals nor see the importance of animals in one's life. They are not only a source of comfort and protection but medically, having a pet has proven to do more good for a patient than treatment itself in some cases. I'm not saying that having a pet will bring back your pigmentation in the case of Vitiligo, but it can surely relieve any stress or anxiety that the condition may cause you. 


My Yorkshire Terrier Kaiso is now 16 years old (far beyond his expected life span) and has been on this journey with me since I was 8. The total acceptance and lack of judgment found in this 'best friend' can get you through some truly difficult times. It may sound a little cliché, but seeing the way our animals look up to us and treat us with complete loyalty, acceptance and trust in return for just a little love and acknowledgement gives us quite an example of how we should treat each other. I would most certainly recommend getting a pet for a young child with a medical condition such as Vitiligo - it gives us somewhere to go when everywhere else is too difficult. Just remember that a pet is for life.


Here I am at about 9 or 10 years old. Yes, I was an absolute little nerd :) I even had braces by the time I was 12! You can see the Vitiligo clearly on my forehead, neck and backs of my hands, even inside my ears. Long sleeves were also my comfort zone.

"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

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.

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.

OK... So What?

My first serious relationship happened when I was 17 years old. Until that time, I had accepted that I would never be like my girlfriends in the boys’ eyes. I never had guys falling over themselves for me the way my girlfriends did, so I did the next best thing and made sure I was as good friends with them as I could be instead. Growing up with an older brother in the house meant that I had a knack for being ‘one of the boys’.

Having someone actually interested in me was frightening to say the least. He had approached me on my 17th birthday, as I was on the dancefloor celebrating with my friends, to compliment me on my dance skills and my style. I remember I was wearing a black fedora hat tipped to one side, as always finding ways to mask my face and draw attention to my style and not my skin.

He was 6 years older than me, which at the time was a huge age difference. I couldn’t believe that this man liked me, but he persisted in asking me out for weeks to follow, trying to make a date and I kept refusing, for a number of reasons. Firstly, the age difference played a major part. I had never had a serious boyfriend, so naturally I was afraid that we would not be on the same level of thought. I was afraid of what my parents would say. And most of all, I knew that he hadn’t seen my skin properly because of the hat I’d been wearing. I knew I wouldn’t be able to hide my Vitiligo from him and I didn’t want him to think he was getting a white girl when indeed I was anything but. I was scared to let myself like him.

Weeks passed, and in communicating we found out that we had a lot in common. Conversation was fantastic, he was friendly and outgoing like me and I soon developed a crush. Finally, I agreed to go on a date with him. To this day, that date is the most romantic first date I have ever experienced, perhaps because it was my first real date, or perhaps because he really stepped up to the plate to win me over. He took me out to Aphrodite’s Rock, a well-known landmark in Cyprus. We sat eating ice cream on a cliff overlooking the ocean, where a huge rock stands out of the water near the shore, rumoured to be the birthplace of Aphrodite, the Greek goddess of Love.

Again, because it was night-time - my friend, the Night - I thought he wouldn’t be able to see the spots on my face, and was nervous to tell him about my skin. I told him there was something he needed to know, which played a big part in me not agreeing to go out with him. I told of how my skin used to be dark, and was gradually changing to white over the years and had almost completely changed. I remember my voice was shaking as I imagined him jumping back in the car, taking me home and running away, never wanting to see me or speak to me again. I thought that news like mine would be too much responsibility for someone to take on and much more than they bargained for.

He listened to my story, watching me closely the entire time, and then… he shrugged his shoulders.

He said: “Okay… So what?”

I couldn’t believe what I was hearing.

“Well…” I stuttered. “My skin could change back… or it might not. I don’t know what’s going to happen, and I don’t know if you could handle being seen with me if my skin was patchy? I look strange…”

He looked at me like I was the silliest person in the world (which, at that moment, I felt like as well).

“What if I told you… that I don’t actually care what colour your skin is, or if you have more than one colour visible? And what if I told you that anybody who had anything to say to you about your skin, would have to go through me first?”

The feeling of relief that washed over me was indescribable. No one, much less a boy, had ever said that to me before and in that moment, I finally felt like I had someone on my side who wasn't obligated to defend me like family.

Our wonderfully fulfilling relationship lasted almost three years and we have a friendship that still stands today. And one thing I learned from that night…

Sometimes I let my skin matter to me more than it matters to others.

Think about it. Your Vitiligo is only as important as you choose to make it.

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.

Personal Update

Hi to everybody. 
I know it may seem like I have forgotten you and I'm sorry about that. The truth is that I have been affected by a number of personal blows lately, not least of all being the disaster in Haiti which is very close to my heart, especially as a Caribbean citizen. Please read the end of this message to find out more about how you can help in Haiti.

I've always been determined to show only strength, positivity and factual information or worthwhile opinion for discussion when speaking about my experiences on Skinned Alive because of how much many of you have told me it helps you. However, at the moment I find it hard to write on the blog under a pretence that I am 100% strong, 100% of the time. Like everybody else, I am only human and have my weak moments, so I only ask that you be patient with me until I can continue to write at the standard that Skinned Alive deserves. 

Please feel free to continue sending in your personal messages and questions, I do read and appreciate them all and I have not forgotten you. I will always make the time to reply :)

Be Blessed Always,
Darcel
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In this time of need, it is very important that as many resources get to Haiti as possible. The best thing that you can do right now is donate clothes, shoes and/or non-perishable items such as canned food and bottles of water wherever they are being accepted. I know that Subway outlets worldwide are accepting cans of food in exchange for a sub of your choice.

Unfortunately, with monetary donations, you can never be sure how much of your donation is reaching those who need it. I know that there are a number of websites where donations can be made, as well as numbers you can text to help raise funds. Some of these are scams and I would urge you to be vigilant and do your research. There are a couple of organizations that I personally trust and can vouch for so please feel free to donate via these links, if like me you have been confused as to who can best put my money to use. 

Avaaz.org is an organization that tackles a number of world issues and I had the pleasure of taking part in the Give Peace A Hand 3-mile long handshake and walk for the Dalai Lama's peace talks here in London 2 years ago. They have currently raised over 1 million pounds for Haiti and are still accepting donations at:

https://secure.avaaz.org/en/stand_with_haiti 
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Many members of my United Nations family have been caught in the earthquake. Many of them did not survive and even more are still missing following the collapse of the United Nations Headquarters building. The UN survivors of the earthquake have proudly stuck together and chosen to remain in Haiti to aid relief efforts and recover their mission.

The United Nations Federal Credit Union is accepting cheques from non-members of the UN that can be made payable to the "Relief Fund" and sent to:

Relief Fund
c/o UNFCU
24-01 44th Road
Long Island City
New York 11101
USA

Thank you for any help you can offer!

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…