Losing My Color, Not My Spirit
One woman comes to terms with her vitiligo
“Excuse me miss, you have some milk on your face,” is the usual comment I get about the white circular patch on the corner of my mouth. I hear this often; get upset; breathe and begin to educate the onlooker about my pigment disorder, vitiligo (vi-ta-lie-go).
The National Vitiligo Foundation defines vitiligo as “a disease characterized by the loss of pigmentation and the development of white spots on the skin. The spots occur when pigment cells, called melanocytes, are destroyed and the pigment, called melanin, can no longer be produced.”
Commonly referred to as the “Michael Jackson’s Disease” for its most famous sufferer, vitiligo is more noticeable on people of darker pigmentation than those that have fair to white skin.
I first noticed the unusual white patches on my fingers. I thought the sun irritated my skin and that my color would return. It didn’t. In panic mode, I phoned my mom. She calmly said, “Oh, your grandmom’s cousin had that, don’t worry. You’ll live. It’s not terminal, but you will turn all white.”
I thought, “Heck no, I can’t lose my beautiful honey brown color. It won’t look right. This is terrible.”
Sixteen years later, my hands, arms, breasts, underarms, feet, ears and private areas had blotchy white patches. I suffered low self-esteem, depression and battled intimate insecurities. My pigment was fading away and my soul was fading with it. No more happy-go-lucky me. I’m slowly mourning my brown as the mirror reminds me of my new pigment loss daily. This transformation remains unsettling, yet my personality adjusts.
I don’t hide the white spots on my face and body by using makeup. I don’t like the feeling of hiding myself. I do wear loose face powder, but not cover-up foundations, because I can’t find the right match for my skin. My hands are impossible to conceal, due to constant washing and the embarrassment of makeup rubbing off on others during a handshake or a hug.
I’ve tried light therapy, which regenerates pigment by standing in tanning beds and exposing my skin to ultraviolet light. The procedure is pricey and isn’t a cure.
In the summer, I use SPF 50 while exposing my vitiligo in short sleeves, skirts, shorts and sandals. In spite of the lifelong stares and comments, I choose comfort over covering up my white patches.
I’m a victor, not a victim. My role model, Daisaku Ikeda, says, ”An unbeatable spirit is what supplies the power to press ahead.” I press ahead to inspire others to not feel ashamed about vitiligo. I’m losing my color, but my spirit remains colorful!
Pictured above: Maia La Ville
Tagged as: health and vitiligo
Written by Maia La Ville
Comments (14)
ROSALYN BLAYLOCK Posted on 09:12, Aug 4th 2011
We love you Maia. Your fabulous spirit is contagious. Stay wonderfully exotic,unique and beautiful!
VELMA HUGHES (TRUCKIE) Posted on 10:49, Aug 4th 2011
You're an awesome and beautiful woman of God! Continue to be encouraged and positive.
CARL MCCORMICK Posted on 01:26, Aug 5th 2011
The feed back received, when in your presence, is that of a positive loving person. You are precious and a joyful blessing to us all. That trumps everything, especially the small stuff. Thanks for the enlightenment.
OGO Posted on 01:49, Aug 6th 2011
Nice one Maia, thanks for sharing, thanks for bringing it on, this must have encouraged someone. Good one
ADELE Posted on 12:07, Aug 7th 2011
Thank you so much for this article. As a vitiligo sufferer myself, seeing you and articles like these give me hope, courage, and faith to continue on, showing my face to the world. You are so gorgeous, Maia, keep doing you're thing!
PAT Posted on 11:06, Aug 9th 2011
I celebrate your spirit and I am inspired. I have vitiligo too. I thank you for speaking out. The beauty inside shines through and enhances your outer beauty.
KIMBERLY THOMPSON-LAMB Posted on 13:05, Aug 10th 2011
Maia is a customer of my resteraunt(Brother Tims)she has such a pleasant spirit it's easy to overlook the discooration of her skin once you get to know her. I beleive this happened to such a beautiful sister so that others can see it is still possible to shine despite the stares people may take.
CARL MANLEY Posted on 02:32, Aug 12th 2011
Dear Maia, I just wanted to tell you that I know exactly what you went thru, I have had Vitiligo for almost 30 years now and the same remarks about the milk is what I have been going thru since 1983 I just wanted to tell you that I love your spirit and your energy and like you I choose comfort over covering my white patches. your story is very interesting and motivational keep being that strong sister and educating those people who may be ignorant of our situation I applaud you much love and respect always
SONYA RAYFORD CAGE Posted on 14:41, Aug 17th 2011
Dear Maia, I'm so glad you wrote this article and understand your struggles. I've had Vitiligo for almost 30 years. For the first 22 years, I had the white patches all over my body and experienced the stares. It was very difficult. I refused to wear makeup to cover it up. I felt this was my opportunity to educate people on the disease and often used Michael Jackson as a reference. Now, all my beautiful chocolate color is gone. People often ask me, "Where are you from?" I finally learned they don't know what city I'm from but my ethnicity. Praise God you have not lost your spirit and for inspiring others who have this disease.
MAIA Posted on 13:32, Aug 21st 2011
Thank you TCW readers for your wonderful and kind comments about this article. My words and feelings are from the heart. Your comments touched not only my heart but I am sure that of others living with vitiligo and those close to them. For those that know little about vitiligo, thank you for reading and I hope your curiosity moves you to learn more and continue to embrace not only people with vitiligo but ANYONE who appears different in their physical and mental health. Thank you to the staff of TCW for their forward thinking and compassionate embrace of diversity!!
TOM Posted on 14:33, Aug 27th 2011
Maia,I met you at Sears. It was my pleasure to meet such a nice,upbeat and cheerful lady !
CATHERINE LOCKE TEVERBAUGH Posted on 19:28, Aug 31st 2011
What a beautiful article for a beautiful person...inside and out. We miss you at Iona's.
INDRIANA Posted on 02:09, Nov 7th 2011
i like ur article maia, its can cure of my spirit and its help when i was feel sad coz of my vitiligo..may i share it?..thx
TOYA WOULLARD Posted on 23:05, Aug 3rd 2011
I love you spirit...I hate that you went through a slight phase of low-self esteem. I am glad that you realize that you are a beautiful person inside and out...Love ya girlie!