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Poems
Vitiligo Protocol
Nov 2013
ACT I: Collecting Jigsaw Puzzles
My life has been a series of jigsaw puzzles, the first as pretty a picture as you could wish to see. It never occurred to anyone that anything could mar the image of a bonny baby in all her glorious honey-hued, gurgling perfection.
They never found out who crept into the playroom and stole the first piece. It was only one little piece – the size of a sixpence on the baby’s left ankle. Hardly noticeable. A pity though that such a pretty puzzle should be incomplete.
The next piece to vanish left a leaf-shaped hole in the baby’s back. Did someone accidentally knock over the board? Perhaps the lost pieces are on the floor or down the back of the sofa.
But if that is so, why could they find no trace? Surely it had to be the work of a thief because it did not end there.
The next puzzle was a toddler. How strange that the same pieces were missing here too. Not only that, but a third and fourth piece had gone – the other ankle this time and now a tiny gap at one corner of the child’s mouth. Why would anyone want to remove random pieces of the puzzle? And how did they do it without getting caught?
No one had any answers.
Successive puzzles depicting a panda-eyed schoolgirl, a shy adolescent, a carefully groomed young woman – all plundered by unseen hands – revealed more and more of the blank surface beneath and ever less of the subject herself.
One day I opened a new box and asked myself “Is this puzzle half here or half gone?”
There comes a point when a puzzle ceases to be a picture with gaps and becomes a blank space strewn with fragments like the excavated remnants of an ancient mosaic.
Would some archaeologist dig me up and fill in the blanks to show posterity what I once looked like?
The jigsaw of a woman in her 40s would have been quick to complete, since so few of the pieces actually connected. Scattered across the board, it was impossible to decide if they, or the space between them, were the real object of the exercise.
I suppose it all depends on how you look at it.
Over the course of 50 years my unplanned jigsaw collection progressed from Bonny-Baby to Can-You-Tell-What-It-Is-Yet? What would the next puzzle be called… The-Invisible-Woman perhaps?
If you think jigsaws are frustrating, try my next hobby…
ACT II: Painting by Numbers
Number 1 was the original skin tone, a light golden beige, my favourite pigment.
Number 2 was the colour of nettle rash, mottled and roughly textured.
This was closely followed by number 3, a stark white, applied almost symmetrically in random patterns, some clearly delineated, others splashed carelessly across the canvas like spilt milk. (No sense in crying over it. There is no cure. It won't **** you.)
There’s nothing quite like summer for bringing out the colours of a painting. A hat and long sleeves were no match for the persistent sun and by the time the picture was finished, the numbered paints ranged from 1 to 20 with a different abstract brush stroke to go with each one. My canvas contained a tortoiseshell patchwork of shades from brilliant white to violet, golden ochre, burnt sienna, chestnut and scarlet.
And yet this was the height of my blue period.
I had to paint by numbers for 50 summers before I could enjoy my third (and final?) pastime…
ACT III: Joining the Dots
By sheer fluke, at the age of 51, I discovered the secret of the missing jigsaw puzzle pieces. They were there all along – just not visible to the naked eye.
They had been starved into transparency but, as I began to feed them, atoms of them materialised like specks of golden ink on blotting paper. Tiny dots like pixels on a grainy satellite image, jostling, overlapping and joining together until they looked something like the missing jigsaw pieces - if a little mottled with mildew.
And gradually the mildew has faded - along with the sense of loss - to reveal glorious, even colour.
Of all the activities I ever found in the playroom of my life, the most cherished, the most miraculous, the most deeply longed-for and appreciated has been this game of Join the Dots - an unremarkable pastime, you may think (if you have never walked in my shoes), but one which has brought me on a return journey along a jigsaw road from
Almost-Invisible
via Can-You-Tell-What-It-Is-Yet?
past Half-Here-Or-Half-Gone?
by way of A-Pity-That-It’s-Incomplete
and finally – if not quite back to Bonny-Baby – then at least back home to a grateful woman of a certain age who can look in the mirror and smile to see her whole self.
Vitiligo: A Play(room) in 3 Acts © August 2013 Vitiligo Protocol
My life has been a series of jigsaw puzzles, the first as pretty a picture as you could wish to see. It never occurred to anyone that anything could mar the image of a bonny baby in all her glorious honey-hued, gurgling perfection.
They never found out who crept into the playroom and stole the first piece. It was only one little piece – the size of a sixpence on the baby’s left ankle. Hardly noticeable. A pity though that such a pretty puzzle should be incomplete.
The next piece to vanish left a leaf-shaped hole in the baby’s back. Did someone accidentally knock over the board? Perhaps the lost pieces are on the floor or down the back of the sofa.
But if that is so, why could they find no trace? Surely it had to be the work of a thief because it did not end there.
The next puzzle was a toddler. How strange that the same pieces were missing here too. Not only that, but a third and fourth piece had gone – the other ankle this time and now a tiny gap at one corner of the child’s mouth. Why would anyone want to remove random pieces of the puzzle? And how did they do it without getting caught?
No one had any answers.
Successive puzzles depicting a panda-eyed schoolgirl, a shy adolescent, a carefully groomed young woman – all plundered by unseen hands – revealed more and more of the blank surface beneath and ever less of the subject herself.
One day I opened a new box and asked myself “Is this puzzle half here or half gone?”
There comes a point when a puzzle ceases to be a picture with gaps and becomes a blank space strewn with fragments like the excavated remnants of an ancient mosaic.
Would some archaeologist dig me up and fill in the blanks to show posterity what I once looked like?
The jigsaw of a woman in her 40s would have been quick to complete, since so few of the pieces actually connected. Scattered across the board, it was impossible to decide if they, or the space between them, were the real object of the exercise.
I suppose it all depends on how you look at it.
Over the course of 50 years my unplanned jigsaw collection progressed from Bonny-Baby to Can-You-Tell-What-It-Is-Yet? What would the next puzzle be called… The-Invisible-Woman perhaps?
If you think jigsaws are frustrating, try my next hobby…
ACT II: Painting by Numbers
Number 1 was the original skin tone, a light golden beige, my favourite pigment.
Number 2 was the colour of nettle rash, mottled and roughly textured.
This was closely followed by number 3, a stark white, applied almost symmetrically in random patterns, some clearly delineated, others splashed carelessly across the canvas like spilt milk. (No sense in crying over it. There is no cure. It won't **** you.)
There’s nothing quite like summer for bringing out the colours of a painting. A hat and long sleeves were no match for the persistent sun and by the time the picture was finished, the numbered paints ranged from 1 to 20 with a different abstract brush stroke to go with each one. My canvas contained a tortoiseshell patchwork of shades from brilliant white to violet, golden ochre, burnt sienna, chestnut and scarlet.
And yet this was the height of my blue period.
I had to paint by numbers for 50 summers before I could enjoy my third (and final?) pastime…
ACT III: Joining the Dots
By sheer fluke, at the age of 51, I discovered the secret of the missing jigsaw puzzle pieces. They were there all along – just not visible to the naked eye.
They had been starved into transparency but, as I began to feed them, atoms of them materialised like specks of golden ink on blotting paper. Tiny dots like pixels on a grainy satellite image, jostling, overlapping and joining together until they looked something like the missing jigsaw pieces - if a little mottled with mildew.
And gradually the mildew has faded - along with the sense of loss - to reveal glorious, even colour.
Of all the activities I ever found in the playroom of my life, the most cherished, the most miraculous, the most deeply longed-for and appreciated has been this game of Join the Dots - an unremarkable pastime, you may think (if you have never walked in my shoes), but one which has brought me on a return journey along a jigsaw road from
Almost-Invisible
via Can-You-Tell-What-It-Is-Yet?
past Half-Here-Or-Half-Gone?
by way of A-Pity-That-It’s-Incomplete
and finally – if not quite back to Bonny-Baby – then at least back home to a grateful woman of a certain age who can look in the mirror and smile to see her whole self.
Vitiligo: A Play(room) in 3 Acts © August 2013 Vitiligo Protocol
I wrote this poem in the summer of 2013, about three and a half years after starting to re-pigment. It might baffle some readers but I think that anyone who has had widespread vitiligo will recognise the feelings of consternation, powerlessness and loss of identity that accompany the progression of this condition. But I hope that the relief and delight I have tried to convey at the return of my pigment will give others hope that this is not necessarily a one-way journey :)
luz maria Sep 2021
my life with vitiligo.
luz maria
Sep 2021
what's it like living with vitiligo?
it's a devastating nightmare that comes with constant stares and ugly looks. what is much worse is what they say about you. i once had a partner that every time we fought he would call me awful names. he'd say i was a disgusting creature and that i should be embarrassed to be me. he would always tell me to put on my makeup with people came around, and me, rushing to go put it on so that they wouldn't stare or ask what was wrong. he would say that i'm an embarrassment to be around, that he was only with me because he felt sorry. he'd repeatedly cheat on me with much prettier girls and rub it in my face, and say i'm never going to be just as beautiful as them no matter how hard i try. in all honesty though, i would have preferred that he was like the other people. in my opinion, pretending to love somebody is much worse than being treated differently. i let him fill me up with emotional and sometimes physical pain until i finally exploded. i thought i've finally found the one that truly loved me for who i really was, with this skin condition and all. however some of it is my fault too. i wasn't completely honest in the beginning, i should've told you about my condition. now it's something i tell anyone i'm about to get close to. i wish you would've left if you weren't going to love me the way you said, and i wish i was strong enough to leave before you cause me any damage. i stare in the mirror everyday and hate what i see. some days i'd be happier if there was a way i could peel off this skin. i haven't taught my self how love the skin i'm in, and i'm scared that if i don't start my son will turn out to be the same way his father was.
so if anyone ask, that's what it's like living with vitiligo. there's my truth. it's something i wouldn't recommend for anyone who isn't comfortable in their skin. love yourself first, fill yourself with so much love that you overfill and no matter how much people about you, your cup will never be empty.
it's a devastating nightmare that comes with constant stares and ugly looks. what is much worse is what they say about you. i once had a partner that every time we fought he would call me awful names. he'd say i was a disgusting creature and that i should be embarrassed to be me. he would always tell me to put on my makeup with people came around, and me, rushing to go put it on so that they wouldn't stare or ask what was wrong. he would say that i'm an embarrassment to be around, that he was only with me because he felt sorry. he'd repeatedly cheat on me with much prettier girls and rub it in my face, and say i'm never going to be just as beautiful as them no matter how hard i try. in all honesty though, i would have preferred that he was like the other people. in my opinion, pretending to love somebody is much worse than being treated differently. i let him fill me up with emotional and sometimes physical pain until i finally exploded. i thought i've finally found the one that truly loved me for who i really was, with this skin condition and all. however some of it is my fault too. i wasn't completely honest in the beginning, i should've told you about my condition. now it's something i tell anyone i'm about to get close to. i wish you would've left if you weren't going to love me the way you said, and i wish i was strong enough to leave before you cause me any damage. i stare in the mirror everyday and hate what i see. some days i'd be happier if there was a way i could peel off this skin. i haven't taught my self how love the skin i'm in, and i'm scared that if i don't start my son will turn out to be the same way his father was.
so if anyone ask, that's what it's like living with vitiligo. there's my truth. it's something i wouldn't recommend for anyone who isn't comfortable in their skin. love yourself first, fill yourself with so much love that you overfill and no matter how much people about you, your cup will never be empty.
Vitiligo Protocol Nov 2013
Vitiligo
Vitiligo Protocol
Nov 2013
For years, longing long years
I mourned my smooth, young honey-hued, freckle-filled summers.
My tears, pander-eyed tears
Trickled down the furtive, long-sleeved, camouflaged decades.
I hoped hopeless hopes
That the pallid,white-lashed jig-saw stranger in the mirror should leave.
My fears, shadowy fears
Multiplied, forming stark splashes across the carefree canvas of my psyche.
Resigned, and re-designed
The pattern of my life became cheery-faced denial-by-self-tan.
And there, just where despair
Had me in its mottled, stubborn, white-knuckled, piebald grip
The long, long, longed-for thing
Occurred – showering my bleached body and soul with golden shards of joy.
The white, bright white
Which blighted my confidence and leached the tones from my being
Is going, going, gone
And I am once again becoming who I always so secretly and subcutaneously was.
I’m me… I’m free
And blissfully, gratefully, ecstatically aware that the final letters of my life’s curse are…
... "I GO"
Vitiligo © October 2011 Vitiligo Protocol
I mourned my smooth, young honey-hued, freckle-filled summers.
My tears, pander-eyed tears
Trickled down the furtive, long-sleeved, camouflaged decades.
I hoped hopeless hopes
That the pallid,white-lashed jig-saw stranger in the mirror should leave.
My fears, shadowy fears
Multiplied, forming stark splashes across the carefree canvas of my psyche.
Resigned, and re-designed
The pattern of my life became cheery-faced denial-by-self-tan.
And there, just where despair
Had me in its mottled, stubborn, white-knuckled, piebald grip
The long, long, longed-for thing
Occurred – showering my bleached body and soul with golden shards of joy.
The white, bright white
Which blighted my confidence and leached the tones from my being
Is going, going, gone
And I am once again becoming who I always so secretly and subcutaneously was.
I’m me… I’m free
And blissfully, gratefully, ecstatically aware that the final letters of my life’s curse are…
... "I GO"
Vitiligo © October 2011 Vitiligo Protocol
I wrote this about a year and a half after my re-pigmentation process began. It was the first time in my life that I actually felt the desire to explore my feelings about vitiligo. Until then I had tried to pretend it didn't exist. The process was therapeutic - I highly recommend it!