living with spots: further thought

some days aren't just my day, just like everybody else feels. but, for me, 'not my day' means additional spots. i found spots here, and then there, and more here, and more there. every morning, i go to the mirror and see my spots' reflection, i ignore my face's reflection because it doesn't matter anymore - i've lost interest on looking at my face months ago. i measure the width of my spots, comparing to my yesterday's spots. same thing i do to the spots on my hands. it's just endless and tiring.

some days, i realize and i know that i need to get better in my head and in my heart, from inside - from the root; so that my outer appearance could improved. but that thought is just temporary, i could't make it stay longer.

currently i'm reading a book, called "restless soul, endless hope"; there are real stories from people living with vitiligo. i was looking for some support groups and self-help books for vitiligo, then i found this book. the stories are almost the 'same' tune, although the timelines are varies; some have it since child, some since teen age, some have it since their 30's. all stories/journeys are going towards the same direction: self acceptance is the key. i reflect it to myself, to my condition, to my thought inside my head, and it's clear: i need to love the way i am, i need to accept the fact that my body is now spotted.

the road to get 'there' is long and scary, the journey is not easy nor straight. it's blurry, ugly, and unpredictable. who knows that a year from now, my face would be half white and half tan. who knows that when my daughter get into her kindergarten, my body are spotted and ugly for people to look at. i am afraid that in the future, my daughter would hate me, that she would hate my appearance, that she would feel ashamed for having me as her mother. that thoughts are just heartbreaking; and i know it is possible to happen.

speaking about my daughter, iola is one now. i thought she doesn't understand the difference between my skin and the 'normal' skin - well, maybe she doesn't. but, a few days ago, she showed me that she know her mother's skin is different (not in a bad way). while we were on a painting session, she tried to paint my white spots on my hand, maybe because she thought that she could make it all the same color. i burst into tears, i hugged her tightly. i didn't know how i should react, or how i should feel. but, that was just so sweet, in a way that she tried to 'fix' me.

there is no cure for vitiligo, that's a highlight that strikes all the vitiligo-sufferers. yes, it is not painful nor harmful, but the social reaction is the biggest fear, it is the one that make it painful. social relationship is the most effected area, it's frightening. because, for everyone out there, being one different human being will create opinions. being different because of the spots in your skin will create bad reactions. people will react, people will comment, and people will give you labels. vitiligo is not contagious, it is just there.. marking the skin of 1% of world population.

i am still struggling.. to accept the new skin. i am not my skin, indeed. i am more than that. i am what's inside me. i am still me, just a little different from the outside.

that's all the thought for now.. hopefully i can get better next time. till then.

xoxo.

0 winds from friends and strangers:

a little wind

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i bake my own bread for breakfast, i craft everything i could think of, i watch arsenal, i dream of alaska, and i befriend old cameras. my world rotates on september.

inspiration.

 

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