Thursday, January 6, 2011

Face the Enemy



There’s an old Polaroid photo of me taken on a beach in the 60s, in which, as a two year old, I had the poise and foresight of striking a pose that would not only later inspire a poem, but inform a life. The original photograph now lives in Box 99 at the Berg Collection in the New York Public Library among some manuscripts and ephemera gathered as part of a program I had the good fortune to collide with in the 90s, an initiative to collect the “papers” of young unknown poets before they became collectible, as it were.  The burden of distinguishing myself sufficiently to make this investment of the curator’s faith and money worthwhile aside, it amuses me to think that when I turned my head away from my mother’s camera that day, this image would take on such life, and make such a journey. They say our ends are visible in our beginnings, and in a way, everything I ever needed to know about my life’s direction was burned into that small piece of photographic paper.  Here’s my poem, published in 1994 by Poetry, my first acceptance as a poet, and they paid by the line!

The Poet at Two Rejects the Beach

I stood before immeasurable shore
entrenched as a toy shovel,
open handle needle eye
to unthreadable blue.
Toes clenched,
head bent down,
I sifted sand for details,
laid my plastic bucket down
to catch incoming tide.
All I wanted was enough
to drown imperfect castles
in the shadow of my brother's.
He had the knack,
knew where to find
the right kind of sand.
Mine never held.
I packed too hard.
They cracked and fell,
fragile as lies
parents tell a little girl
with oceans in her eyes,
whose ear is small as a shell
shaped to hold
only the sound of undertow.
All afternoon I built and undermined.
The air tasted of tears.
Determined not to show
my face to cameras,
I only let myself be caught
as I turned away,
recognized on second thought.

But this post is not about how the effects of sibling rivalry, or in my case more like sibling tyranny, followed me from childhood well into adulthood. It’s not about how a shy little girl becomes a poet and photographer, how someone terrified and humbled by the prospect of participating in life becomes instead one of its keen and engaged observers and recorders. It’s about why I am still determined not to show my face to cameras.

  
I have an autoimmune disorder called vitiligo. Briefly described, this means that for reasons unknown, my immune system is on a special mission to destroy cells that contain and maintain the pigment in my skin. It’s not so much malfunction, as hyperfunction.  Think soldiers so trigger happy they will shoot anything that gets near them, friend or foe.  As afflictions go, this one isn’t bad, and is often considered merely superficial, not receiving a lot of attention or funding, as much because it isn’t as urgent (or prestigious) for the scientific community to cure as something like cancer, as that its sufferers are more likely to conceal it out of shame than boldly demand a remedy. To be fair, it won’t kill you, but it is an extra drain on a system that has all sorts of regular work to do to keep the body free of infections and conduct daily repairs, and in addition to minor complications like various allergies and hypersensitivities to light and sound and social situations, it does often appear alongside other worse autoimmune and inflammatory conditions like thyroidism, rheumatoid arthritis and lupus. As vitiligo victims go, in one way, I’m lucky. I’ve had it for 25 years, its progression has been slow, and I am otherwise generally healthy. In another way, I’m unlucky. When vitiligo first entered my life, it appeared in the one place that could not easily be hidden from a world that often exclusively and superficially judges you by that very feature : my face. And when your face begins to disappear, who are you?


From what little they do know about vitiligo thanks to case studies, it does seem to appear during or after periods of stress, and quite often at a site on the body where some surface damage has recently occurred. For me, a previous summer’s bad sunburn and the death of my grandmother were my likely triggers in 1985. First I developed a white mask across my nose and cheeks that made me resemble a raccoon. Then parallel white lines appeared on my brow making me seem perpetually worried. Then the area around my mouth started to blanch in a pattern reminiscent of clown makeup. Each new afflicted area seemed perversely determined to remain isolated and oddly shaped the better to call attention to itself, and make me look foolish or freakish or both.  Next to be affected were my hands knees elbows and feet, particularly susceptible for their thin skin and likelihood of being accidentally cut or scraped.  As if scars were not enough to remind me of every misstep my body takes to bring it into harm’s way, I will also bear a white ghost image at the site, which will everafter be defenseless against the sun, like some kind of heightened haunting memory that aches when exposed to the light.


Vitiligo may be the true reason I held off getting tattoos for so long. I wasn’t sure I could commit to the money time and pain only to see the artists’ work destroyed by whitened areas. But I obviously eventually got over it. I learned that tattoo artists will tattoo over just about anything, pigment variations and scar irregularities included. Then it became my way of saying to the gawking world “you wanna look at something funny? Here’s something to look at!” Tattoos helped me reclaim my skin and my appearance. If I was going to be a fool or a freak, it would be on my terms, it would be artwork I chose to wear, not the ravages of a disorder I can’t control.


In the early days, I tried the many concealing makeups on the market, which took too long to apply, felt bad and eventually had to come off in a big reveal, so why not just go natural and get it over with? I got to the point where I decided not to wear any makeup at all, concealing or decorative, and walked around with the confidence of denial, because from my point of view, looking out from this unusual visage, I acted in perfect oblivion to what it might look like to people on the other side. One summer afternoon a grown man with white spots on his dark skin and tears in his eyes stopped me on the street and in broken English said “you – you have it too! How do you bear it? I don’t want to leave the house I am so ashamed!” I almost didn’t realize what he was talking about. My answer was simply that I try not to think about it or let it inhibit my life. Of course this doesn’t take into account the occasional shop window, the bathroom mirror in the morning, the staring and sometimes daring to point and ask passersby on the street, and, oh yes, CAMERAS, always ready to shatter my illusions of a whole face.


I still flinch when I see the few photos of myself I allow to be or can’t prevent being taken, especially those taken in summer when my Mediterranean skin, even with industrial strength sunscreen, and a hat and sunglasses, still picks up deep brown tones after an hour outdoors, or at least the skin that still has tanning cells intact. Meantime the depigmented skin stays lily white and my face becomes a study in contrasts akin to those black and white cookies they sell in old fashioned bakeries, or Lokai and Bele in that episode of Star Trek (Geek Reference Alert!)  For me, summer is a time to see where all the new sites of whitening from the past year’s damage have been hiding, when the healthy skin surrounding them tans again. I get to check the progress of my disorder, new areas afflicted, percentage of coverage. Sometimes a white spot actually decreases, meaning a new colony of tanning cells may be attempting to overtake the dead zone. Good nutrition, regular exercise, and a low-toxin low-stress lifestyle have resulted in some reversals over the years, but the one place with the most obvious and extensive damage remains my face. 


I used to look for fellow sufferers on the street.  Now that I’ve stopped, I seem to meet one every few months. Perhaps we are not hiding anymore. Perhaps the number of sufferers is on the rise. There are support groups and associations online. They put out newsletters with information about new experimental treatments and studies and hold annual conventions. But I shy away from this group as I would from any other. I do not want to be known by and for this feature, anymore than I want to be pigeonholed as an Italian American Writer or a New York Artist or a Tattooed Lady. I am everything that I am, even if the irregular color of my skin is often the first thing people notice about me.  I once explained to a little girl on the street, not much older than I was in that beach photo, when she pointed at me and asked boldly as children do “what’s wrong with your face?” that it was like some animals being all one color, and others having stripes and spots.  When I told her I was a spotted cat, she seemed a little awestruck - reeeeeally??? But for every inspired moment like that, there is another of shaken confidence, as when my dentist recently asked me the very same question during an exam, and as I gave him a brief medical history, it was all I could do not to cry, or punch him, or both.

 Fade to white...

The photo shoot I did today to provide images for this post was one of the most difficult and necessary I have ever done. I don’t do portraits. I certainly don’t do self-portraits, except occasionally as a shadow, from behind, with a camera in front of my face, or a distant or partial view. I’ve spent my whole life only able to face the world by not thinking about the face I present to it (even more tempting in the blogosphere!), so my face has never seemed something tangible or worthwhile, and certainly not beautiful as an artistic subject. It was a little easier to release these photos publicly given the blessing that my face doesn’t get much sun in winter and my condition is the least obvious in these months. If one of the missions of a good artist is to go where they haven’t gone before, especially a place that makes them a little nervous and afraid, consider this a mission perhaps not accomplished, but begun. Expect more where that came from this year! 

Happy New Year to all and good luck facing your enemies, whoever and whatever they may be.


48 comments:

  1. Gabriella, you have touched my heart once again. I think you are a brave woman for facing yourself and for doing it with love.

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  2. Ah, Luis - it's easy to be brave when I'm surrounded by such a community of artists like yourself who inspire and sustain me every day with their talents and their kindness.

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  3. For all your claims to the contrary I have only two words for this: Beautiful. Perfect.

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  4. Yeh, well I used to hang out with all these awesome prose writers, you see, and maybe some of that has finally sunk in. Wow, could this one actually shake Z's stance on the literary merits of CNF? Nahhh...

    Um, and thanks.

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  5. hey, G.
    I have two friends with vitiligo.......i understand what you've been through and not because of them. I was born with no enamel on my teeth. One in a million. I didn't smile with my mouth open for years. I can feel your pain. Yours was probably much more painful than mine because I could keep my mouth closed but kids were certainly cruel to me and I carried it for many, many years. I got crowns in my twenties ....i was very lucky.
    You are inspiring to come out with your story. Don't be afraid to take your picture!! You are a beautiful woman inside and out.
    Oh....and btw....your tattoos rock!!!
    xo

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  6. Wow. Years ago I didn't know ANYONE with vit, now it seems to be everywhere. I do wonder whether it's on the rise (we've poisoned the planet and now it is poisoning us) or people are just being more open about it, and about everything that ails them. Thanks for sharing your own story, M, and the too-kind words! Don't worry, there will be more self-portraits now I've broken through!

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  7. Brave, beautiful and inspiring! Encouraging others to speak their truth...you are a blessing.
    Karen

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  8. Thanks, "Anonymous" K! It's a strange concept to me that I could ever inspire or encourage anyone by my example, but if this is so, it's only fair, after having so many others do that for me with the truths they've lived and shared. Maybe we can all create a better world? Or at least improve our little corner of it. One can dream.

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  9. Gabriella,
    yes, you crossed a bridge, and is already on the other side!
    very courageous in facing the enemy! Brava!
    speaking, we are free, exorcise the matter, we are lighter! everything you said, just proves how much sensitivity you have ...
    is such, that is visible in their own skin ...
    We are pure chemistry and spirit - the question is finding the balance and let the brain work in its original configuration ...

    ... and your tattoos are great
    and make up your identity!
    Sei una bella donna, in l'anima e l'aspetto!!
    mille baci!

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  10. Cara Denise, mille grazie - I read your comment and know you understand me and that makes me smile! I will try to live my life by your words and always be "una bella donna in l'anima e l'aspetto" - to be called this - what more could I ask for?

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  11. Good enjoyment to read your writing.
    Happy Friday to you.

    Wong

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  12. Gabriella, i have been drawn to you by your writing and your art and now like the five who have commented before me the words bravery and beautiful comes to mind.

    for you it is the time for you to come out, to free yourself. how we should all come out when the time is right for us. i feel blessed to be a very small part of your celebration.

    lasciate che l'amore del tuo viso splendente
    piovere sulle nostre proprie fratture
    così possiamo vedere la luce.

    ~robert

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  13. Wong, thank you! You have such a good eye and heart I always appreciate that you enjoy my posts!

    Robert. I thought I had resolved this issue already, but like so many things, it took one more look and final push to really break through. How good that it could happen in such good company, how good that it feels more like a sign of future growth than past closure! And thank you for the Italian words. They always sing to me more deeply than English even if I can't carry on a conversation in Italian. That word - lasciate - even more than l'amore - has such resonance for me, for readers of Dante especially. But it means so much more than any English equivalent. Abandon is how it is always rendered. But it's more about setting aside, letting go. Thank you, my friend. Best to you, caro.

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  14. Dear Gabriella,
    I have been reading your post, going through all kind of emotions, it made me very quiet.
    Brave, courageous, yes certainly.
    And yes all the imperfections we have can be used to bring good things, they make one to dig deeper, find other ways, go to the bottom and search for a way to get out again. It's hard but enriching, coming to places unknown to many of us.


    I know, meeting someone new we all look at the persons outside. But that image changes when I get to know someone better, no matter looks, someone can become very beautiful in my eyes because the inside is soo important. The way a person makes you feel, in the end, has nothing to do with looks. But for some people it takes a lifetime to see this and some keep holding on to only the outside 'till the end.(that are not really the ones i want to spend my time with)

    To me you are a very talented, beautiful woman, you have interesting things to say and I like your sense of humor and the photos in this post are special and beautiful. Love renilde

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  15. Thanks for opening up and sharing this. This post might really help someone who is struggling with some of the issues that you've delt with and continue to deal with.
    My wife used to go to a Lupus support group in the 1990's but she said that it just turned into a big "pity party" after a while.

    You really are a good poet and photographer and that's for keeps, but even the most flawless faces out there are going to deteriorate sooner or later. :)

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  16. G! You're confidence and sense of yourself, even as it grows and changes is such an inspiration! If we cannot be ourselves and trust that there are others who will always be true to us, no matter who we are....well, what's the point! This will be the year for you! And that poem is quite beautiful too! Thank you, once again, for a post straight from your heart and your gut...always an inspiration to so many of us.

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  17. Renilde, thank you for your words - I think it's true, sometimes the things that drive us inside ourselves turn out to be great blessings and help us develop inner strength, which is so much more important than a pretty face! And yes, I've noticed too that the people I love, I don't really see how they look anymore, because when I look at them I see everything they are on the inside and everything they make me feel.

    James, that would be great if this post could help someone get past some of the shame and self-consciousness and be their beautiful selves! Yes, sometimes support groups help, but other times it seems to me they isolate you even further. I'd rather find a way to comfortably and proudly be in the world than another place to hide and be comforted by others who are also "different." Sorry to hear about your wife's illness. I hope she's doing okay?

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  18. Patti - like everything else, this is an ongoing journey, but I like where I am right now - definitely further to go, but a lot of bad road behind me, the worst of it over and done! The flinch factor when I see my own image has definitely declined over the years. At this point it may not be the face I'd like to see, but what can I do about it? In the past, loved ones have told me that after a while they don't even see it anymore, that I see it and care about it a lot more than they do! It's good to have people like that in my life, who see with their hearts. Many thanks for your comment, my friend. Be well.

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  19. the confidence of denial...so interesting put that way. I have done this, though had no words for it.

    Your photo shoot reminds me of an art exhibit I once saw. A photographer had taken a full length nude photos of herself once a year for 40 years. Same front pose. Same side pose. Same woman. Aging. I thought how brave to be so transparent, and how it allowed gravity to become beautiful and artful.

    You have done the same thing here, with pigment. Thank you.

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  20. WW - I was hoping to get across that denial can be put to good use sometimes, if the only way to move forward past some inner or outer obstacle is to temporarily suspend belief in it! I absolutely love the art exhibit you describe! An aging woman is beautiful - but they know that in Europe, it's America that has this obsession with the perfect ageless woman!
    Thanks for your comment, always good to see you here!

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  21. Gabriella.
    I am afraid that my English is not good enough
    to explain you only in a few words, that I am
    looking up to you!
    I have read all comments from your friends and
    everyone is saying this in a different way.

    You are a very brave and so intelligent woman.
    Yes, writing about a health problem is a kind
    of a cure!

    With all my love to you,
    Monika

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  22. Monika, I always understand you perfectly! Thank you so much for your words, and for making the effort to write in English when it is not your best language! I do appreciate it. I send my love to you from far away!

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  23. i rarely read long posts on blogs (come to that, i rarely read) but your post kept me hooked as i walked in your life by your side... you have a beautiful face... i should know, i spend most of my time looking at them and beyond;)

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  24. Thank you so much, Rahina! I'm glad you enjoyed this post and that it kept you engaged! Your comment does mean a lot coming from someone with such great experience and talent at capturing both the inner and outer beauty of faces! Be well.

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  25. I really love that you've turned your vitiligo into art. Now that I am in my sixties, I find that I don't care much what people think. If I had vitiligo I might be tempted to have a lot of pictures of my face put on a T shirt with the contrast emphasized. Most things in the material world are artifice anyway.

    I think you are beautiful.

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  26. Dear Gabriella,

    your writings are so intense and all your posts touch my heart every time. Again and again. Thank you for being so open,for telling us about facing your enemy, it's so inspiring.
    Your self-portraits are beautiful!! And i notice you have the neck of a ballerina. :-)
    Maybe you can check the blog: the body, nothing else. It's about female artists, telling about their changing bodies. I think Ria (who started this blog) will be happy with your story/input.

    I didn't want to, but i'm blablaing too much. Because i think after this great post, these inspiring words there's only one answer; Silence and respect.

    Sweet greetz and kisses for you, Monica

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  27. Kass, I like your t-shirt idea! Not caring as much what people think is one of the best things about getting older!

    Dear Monica! To be able to touch your heart with my writings makes me very very happy. I will check out the blog you mention. Hah! I think my neck is probably the only part of my body like a ballerina! Kisses for you too, sweet one.

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  28. Hi G/TT - as ever, your post stopped me in my tracks and I had to come back a day later - I went away to ponder, as is my want. Skin colour or lack thereof, poses one of our biggest challenges to seeing humanity and its an extra tough call when your face starts messing with you. Somehow, like all the others I think the best of us go beyond the surface and see the person. But the less than best of us don't and that must have made your journey very sad and difficult at times. My sense is that you are well and truly out the other side of the tunnel - and I am happy to celebrate and share that with you, although I honour your path through the tunnel. Go well, be well.

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  29. Gsbriella, I can only mention i have also some scars in my body that led me many times to depression first and to anger later. The worst was they were produced because of some other people´s supidity. Anyway, like if my memories of my youth and childhood weren´t bad enough, i had to deal with such horrible scars across my body surface. Until one day someone told me about cristal and swords. The first has to be handled with care and affection, they are fragile and fall to pieces easily. The swords are born at the fire of the furnace and the iron of the hammer. They are forged on a hostile cradle. Cristal are kept inside a show case, they break easily into crumbles. Swords can become invencible, they were made for winning in battle and for being admired. I admire you, powerful yet sensitive and poetic sword, with a big heart.
    My warmest regards and a big hug Gabriella.

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  30. Hi Fiona - yes, I've often thought of the similarities and differences between others being judged by their skin color, and me by my lack thereof! The big difference, I suppose, is that being denied a place in society is a lot worse than getting funny looks on the street. Still, I have a keen awareness of what it feels like to worry that someone will alter their opinion of you once they get a good look at you. But you're right - I'm out the end of the tunnel! Many thanks for your taking to heart and spending time thinking about what I write! Be well.

    Alberto - I am sorry to hear about the scars you bear. We all have damage on the inside, but it is hard to have it outside for all to see. It's strange you mention swords. The first tattoo I got, and the beginning of my reclaiming my body as something to be proud of, scars, discolorations and all, was of a raised sword! Many thanks for your kind words.

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  31. Gabriella this post gives hope and healing to anyone and everyone, no matter the affliction...thank you. You accept what you cannot change and move on with your life. You are a brave and beautiful lady...inside and out.
    Your poem was so beautiful. Again, I thank you for sharing it with us.
    My grand-son is a tattoo artist and I marvel at the detail and beauty in the designs and colors that he creates.
    I visited your blog through William's posting so I would like to thank him too.

    All the Best,
    Jan

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  32. Gabriella,
    Your work, your words and now your honesty totally inspire.

    You are appreciated :)

    Your artistic comrade,
    Douglas

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  33. well I know about auto immune disorders, I have one also, mine is just not as visible as yours. personally, I think you look beautiful and these photos prove it! ciao bella!

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  34. JAN - many thanks for the kind words and for following me all the way here from William's blog, which is as good a referral as it gets! I have such great respect for tattoo artists like your grandson! The human body, even in great shape and with its owner being very well-behaved, is not an easy canvas to work on! All the best to you.

    DOUGLAS - Comrade! So glad to be appreciated. Sure took long enough, but better late than never!

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  35. DOLCE VITA- Welcome to my blog! So good of you to visit, and many thanks for the compliments! I am sorry to hear you have an autoimmune disorder too. I hope it doesn't interfere too much with your life - it obviously hasn't dampened your spirit! Be well.

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  36. I think that the most important thing in our life is to have a healthy, open soul!
    Everything else is not very important as soon as you can manage ( in a way) the situation. And I trully believe that somehow we all have something to hide outside or deep inside and it is not fair!
    I am amazet about your courage and I want to congratulate you ( sorry for my english)
    My compliments, my friend!
    My best regards from Romania!

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  37. Greetings, Wind! Thank you for visiting me. Everything you say is so true, your words mean a lot to me. I just looked at your blog and the first photo from your Jan 7th posting reminds me of a window image I once took, the view from the inside out, as it were, a very rich theme to explore! I like your work very much! Be well.

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  38. Thank you, Two Tigers!
    I wish you a great week !
    Best of my thoughts from Romania!

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  39. Gabriela, your writing here is stunning. Work like this is one of the reasons I love to blog. We meet the most amazing people. Your affliction is also your strength, all credit goes to you for dealing with it as you do.

    I'm new here via a blog friend on FB, most likely someone like Two Tigers, sometimes I just follow threads where they lead. It's such a treat. thank you for this extraordinary 'self-portrait'.

    Of course it's only half the story. there's so much more to you than your face, but how preoccupying our faces become, they are our first point of contact with the world.

    Thanks.

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  40. Thank you so much, Elisabeth! Your blog too inspires me with the positive possibilities of the medium!

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  41. "Pale hands I loved so well" from Coil is floating trough my head while reading your words just as one flower is opening in front of my eyes to a brand new beautiful flower,you, Gabriela!
    Hi,my name is Aleksandra and Im not so brave as you are,I think!
    Pleased to meet you ( via Mr.Michaelian) :O) and learn of your many talents,and pardon my language cause Im still learning English!
    Have a wonderful week,loads of good love and smiling smiles!
    Aleksandra
    Ciao!

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  42. I'm so sorry that on this post, I am late ...

    I was away for Christmas by my parents and my partner and I disconnected totally from the Internet er 2 weeks ...

    I lost many things here in our blog world, like your book (which I plan to go further calmly) that I saw posted on the blog of Caio,

    are increasingly happy to have known you and I admire the way you are

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  43. Hello, Aleksandra! It was so good of William to tell about me on his blog and send his friends to visit! Your English is very good! I am always so grateful and impressed when people still learning English make comments here and do their best to use my language! I may be brave, but I'm not brave enough to try to leave a message for you in YOUR language! Many thanks for your kind words. Have a great week!

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  44. LAURA! I'm so glad you're back from your holidays! I hope you had a wonderful time. I can't imagine how much catching up you have to do on Blogger after 2 weeks! If I stay away 2 days it's like an avalanche of messages to dig out from! I am so happy you came here to visit me and leave such kind words. All the best to you!

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  45. I can't belive that i lost a post of yours again .
    wow !!! this is really something.
    to read this post is a battle by itself . Incredible . It is becoming so common in the world today , I bet the researches , with were better done , would prove that in the global life style something is cousing this . Maybe some product we have consimed , or wat to treat water , or ar.... who knows. as it isn't genetic infectious.
    well , you hace tree sking , the natural one , the spoted one and the tattoed one . 3 levels and even so your souls is visible to everyone !
    simcerely , i liked to see your face , it is the first time i see it well... you are pretty .
    Brian Brian ..... lucky guy.
    I liked the poem , it is direct , i have apreciated your style .
    well... thank you for this master-piece-post , again ! your blog is with no doubt one of the more intences and better to read .
    kisses !

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  46. Hi Caio! I was wondering where you were! Thanks for the kind words, I'm glad you enjoyed this. I guess we are all starting the year off in a big way, you with your baptism, and me with my first intense post of 2011! Artists must always be ready, willing and able to take a big step in life, one that is a declaration and celebration of the new life to come, whether it is a spiritual or a personal rite of passage. All the best to you, my friend!

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  47. You're beautiful, inside and out, but truly, it's the inside that matters most - the most. I applaude your post and bravery in facing issues that have been hard for you - some never do this their whole life.

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  48. T - if you had told me years ago that one day I would publicly post explicit photos of my skin condition online and be called both brave and beautiful, I'd have never believed it! This has been quite an experience, and possibly a whole new direction and philosophy for my work. It's good to have the support and inspiring influence of so many good artists. Many thanks for your comment!

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