Sep 11 2010

A Firsthand Account of Living With Universal Vitiligo: From an MJ Fan-mily Sister

Category: Humanitarian,Justice,PhotosSeven @ 4:55 am

Michael

Michael

A couple of days ago, I wrote again about a subject I cover here often: Vitiligo.

A frequent visitor to this site, and MJ fan-mily sister sent me an email with additional resources and a personal story about her own struggles with the disease. Joyce also has universal vitiligo or ‘vitiligo totalis‘ ie: almost her entire body has turned snow white due to this disease.

She shared her story with ‘Voices Education Project‘ and related how having the same disease as Michael – to the same extent as Michael – felt to her and how she profoundly understood the pain he endured with this disease. Joyce felt timid about sharing her experience but the people at ‘Voices‘ encouraged her, Rev. Kaufmann particularly, and I’m glad they did because it’s important that people understand this disease, not only for Michael’s sake, but for Joyce’s, and all those who suffer from it. The psychological effects of such disfiguring diseases is devastating. People affected by it don’t need emotional and verbal assault on top of it – whether they are Michael Jackson, or anyone else, and whether it is intentionally malicious or simply based in ignorance.

People have often wondered why Michael, if he had this disease, didn’t do more to promote awareness of it. It turns out, based on a CNNHealth piece done a while back, that Michael did in fact plan to hold a symposium on vitiligo at Neverland but alas, it never happened. Michael was always very shy and private about these things, and furthermore, the media would have certainly found a way to twist it to the negative, possibly asserting that Michael was holding the symposium only to help himself.

Joyce also says that she gets comments from people who don’t believe it’s possible to turn completely white from vitiligo. These are similar to the comment I mentioned in my previous piece on the subject. But Joyce, like Michael, knows. It happened to her too. She is now completely depigmented except for a few freckles. This happened over many years. Stress increases the process and the spread of the disease. Consider how much stress Michael was in over his lifetime with all the trials and tribulations foisted upon him. Certainly this helped accelerate the disease for him, too.

Another great support organization that Joyce mentioned is ‘National Vitiligo Foundation‘. Please visit and share the site with anyone who can benefit from it, whether they have the disease or want to learn more about it.

I mentioned ‘Voices Education Project‘. You might wonder what that is. Well, let me introduce you to ‘Voices Education Project‘:

Mission
Amplify the voices of veterans and civilian witnesses to war, in order to heal the wounds of war and lay the basis for a more peaceful world.

Vision
Acknowledging that conflict is inevitable, we envision a world in which nations, communities, and individuals move beyond polarization and destruction, instead viewing conflict as an opportunity to create understanding, empathy and positive change. Through education, the arts, and self-expression, Voices aims to transform how we respond to, engage in, and recover from conflict. By working directly with instructors and students we strive to model pedagogical methods and social processes that challenge and enrich the arts, humanities and social science curricula.

Their latest education packet ‘Words and Violence‘ is considered a work in progress. What you see there is the first incarnation of a curriculum designed for students of all ages. With a few revisions or adaptations, the curriculum may be tweaked for students of any age.

The packet is filled with individual activities helping students understand the power of words and the responsibility attached to using them. There are provocative articles on the press, tabloid journalism, and words used as mass destruction–all of these practices leading to potential violence. With over ten case studies, numerous quotes and poems related to the importance of words, “Words and Violence” is ideal for use with middle through high school. In addition, the “In Depth Reflective Articles” are geared for college classes.

This work is dedicated to the memory of Michael Joseph Jackson and Lady Diana Spencer…who both worked in the service of humanity.

White As Fallen Snow

White As Fallen Snow

Below, I’ll share with you some excerpts from the piece Joyce wrote, called ‘White as New Fallen Snow: How Vitiligo and Michael Taught Me Compassion‘.

Please read the ENTIRE PIECE and my previous one here and share them with anyone who needs support or information about the condition:

. . .

There are emotional valleys for the person adjusting to the diagnosis of Vitiligo. Over time Vitiligo spreads and is not easy to hide in those stages. My face, hands, arms, and legs became covered with white patches and were a source of embarrassment for me. But the day came when I decided that I was not going to wear long sleeves and pants for the rest of my life! I did need to protect my skin however, because the depigmented skin has no protection from the sun. I found out the hard way how badly burned one can get from the sun if not extra careful. I sometimes think I alone keep the sunscreen industry in business. There are days I wish for a vat to dip myself into to decrease the time it takes to apply sunscreen and protect my skin because it’s necessary if I am going to continue the outdoor activities I love and enjoy. The evening is a better time for me to do things when the sun is not so intense and I forego things scheduled for daytime when the sun is bright. It does require lifestyle adjustments.

. . . I did need to learn to deal with people staring and making comments especially during the summer months when my pigmented skin was darker in color and I was more exposed wearing summer clothes. I have heard some very bizarre, sometimes funny and occasionally hurtful comments.

I don’t think people intend to be mean but are surprised by someone’s (mine) appearance and don’t think before they speak. I imagine that I did look odd with white spots all over my skin. Children wanted to know if I was “like a leopard” or was I “part zebra?” Adults thought I had been burned and would ask “is it painful” or “is it contagious?” I think I actually liked it better when someone would actually speak to me about their curiosity and ask questions rather than just staring or worse yet snickering or whispering to their friends. Explanations had to be necessarily lengthy and that took up my time when I might have preferred to spend it in some other way.

I will never forget one of the saddest encounters I can remember with a woman who was from India who stopped me one day in a parking lot:

“I noticed the patches on your skin. Do you have Vitiligo?”

“Yes, I do. Are you familiar with it?”

“Yes. My sister who lives in India will never be able to marry because she has Vitiligo. There is a taboo surrounding it in that culture and no man would consider marrying a woman with the disease and whose appearance is marred and undesirable. When it comes to women, India places a lot of emphasis on beauty.”

. . .

I realized too, that I was fortunate to be a white person with Vitiligo. I met several black people with Vitiligo at the NVF conferences I attended and learned how much more devastating it is for them. I was a white person who was turning whiter. They were black people who were becoming white. Not only did they have to deal with the physical changes, but they had to deal with feeling a loss of their race and identity. I cannot speak to this but I can certainly empathize with how much more difficult that must be to lose your ethnic roots, identity or race and to not only question your own identity, but have all that questioned by others.

. . .

There were those in both the black and the white communities who turned against him simply because of his changing appearance. Hurtful words can be more painful than a physical attack. Michael endured far too many hateful, hurtful words. Many in the “media” claim that even with Vitiligo Michael would not have naturally turned so completely white. Well, I can verify that it is very possible. My Vitiligo started with me being mostly tan colored with white patches and spots, and gradually progressed to my appearing mostly white with tan spots to now being almost completely white except for a very few tiny tan spots.

Not only is a morphing appearance unavoidable with Vitiligo, but it is inevitable. Now that the antibodies have finished with my skin, they are starting on my hair. I have huge white patches in my hair, eyebrows and eyelashes. It is a cruel joke that the hair on my legs remains as dark as ever which looks even worse against the stark white skin! I can’t throw out that razor yet. And I now get stares and lots of questions about my hair.

Most people actually think I just have beautiful white skin now. I am sure Michael could have experienced a similar evolution of his appearance. He reportedly used the depigmentation therapy to help even out his skin color so he would not have to wear so much makeup. It is all so easy to understand if people were only not so quick to make hateful judgments or believe everything the tabloid media spews about celebrities.

I wish I could have understood better what Michael Jackson went through while he was still with us. I regret not letting Michael know in some way that I understood at least in part what he went through dealing with this disease. I regret not speaking up more then. I have now become a major defender of Michael Jackson promising myself that I will not let hateful words stand! I think too and I sincerely hope, that I have become more accepting of people’s differences because of my own personal struggles with appearance and acceptance. I try really hard to not make judgments about people without learning more about them. Without the challenge of Vitiligo in my life, and my connection to Michael Jackson I might not have that understanding; I might be a different person. Vitiligo and Michael Jackson taught me about compassion.

– Joyce Frame

Finally, I want to share with you an excerpt from a wonderful interview Allforloveblog did with David Nordahl, Michael’s personal artist, about vitiligo. The disease had progressed in Michael quite a bit even as early as 1988.

Nordahl talks about this, and about how Michael never complained about the disease or asked ‘why me?‘, but at the same time, he thought of himself as very ugly. Nordahl relates that the vitiligo didn’t seem to weaken Michael’s own sense of identity but it was other people such as the public and the media who need reminding that Michael Jackson was, regardless of this disease and paper-white skin because of it, a black man who was very proud of his heritage and his race.

I’ve mentioned before in my previous piece that it wasn’t Michael who ‘hated being black‘ at all – but rather it was other people, specifically those accusing him of it, who themselves hated his blackness. This interview with Mr. Nordahl bears out my assertion.

Also mentioned is perhaps another reason Michael never fully carried out the plans to hold a symposium at Neverland about vitiligo. Maybe he simply had bigger plans and a bigger message for the world.

. . .

He also remembers his friend Michael Jackson as someone who “never complained,” despite the cruel hand he had been dealt with his skin disease, vitiligo. We talked about that somewhat because I was curious after having read Nordahl’s USA Today interview where he mentioned that Michael’s vitiligo was already in a very advanced state when he first met him-in 1988!

At that time, in 1988, he described Michael as someone whose face was already splotched like a cow, and that the effects of the disease were plainly visible on his body. I was very interested to know more about this, because to the world, Michael Jackson in 1988 still looked relatively “normal.” Yes, we could tell he was getting lighter. But it was not yet blatantly obvious that something drastic was going on.

“So you’re saying, as early as 1988, he was already splotched over a large percentage of his body, including his face?”

“Oh yes. Yes. When I met him, it was already all the way down the right side of his neck. And on his right hand, as far as I could see, going all the way up his arm.” But he did note it was hard to know how much further the disease had progressed up his arm, “since he always wore those long-sleeved, corduroy shirts.” Those, of course, were the well known (mostly red; occasionally blue) long-sleeved shirts that he began wearing in the late 80′s and early 90′s. The shirts came in handy for concealing his condition.

“Of course, as he developed more blotches, he had to go with lighter and lighter makeup to cover it.”

We discussed how vitiligo completely robs the skin of pigment. I mentioned how even Oprah Winfrey had said that looking at Michael’s skin was “like looking at someone who was transluscent; you could see all the way through to the blue veins.”

He said that Oprah’s assessment was true. That’s what it was like.

It was never a case of Michael wanting to be white. “White people have pigment,” he said, which is something I have also said on many occasions when I still run across those who think Michael bleached his skin. “Look at your skin, and look at mine. But now…look at that piece of paper there.” He pointed to the sheet of typing paper I was jotting my notes on. “That sheet of paper right there…imagine someone whose skin is as white as that paper.”

“Michael always considered himself very ugly,” he said.

I said I found it so hard to believe why. “He was beautiful,” I said.

“But he never saw it that way. He thought he was extremely ugly. He was always wanting to look like what he called “normal people.”

You would think that a disease like vitiligo would have completely crushed such a fragile self-esteem. But it didn’t.

“I never once heard him complain. He never said, ‘Why me?’

The impression left by our conversation was of a man who quietly carried the cross he had been dealt in life, and who did so with dignity, grace and fortitude. He did not complain, and did not wallow in self-pity. He continued to work, to create, to enjoy life, and to strive for his vision of making the world a better place. Perhaps, I finally came away with a better understanding of why Michael never elected to become a spokesperson for the disease. Michael had a much bigger plan, and much bigger vision, for what he hoped to accomplish with his life and with the platform he had been given.

Vitiligo was just an annoying gnat that he was determined wasn’t going to slow him down, or stop him. That is why I added in the subtitle of this article, “survivor.” Because David’s words painted a picture of just that.

For twenty years, David saw his friend fight the ravages of this disease, along with all of the misunderstanding and ridicule that came with it. “He always knew who he was, he knew he was black.”

Apparently, it was the rest of the world that needed reminding of that fact. Not Michael.

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18 Responses to “A Firsthand Account of Living With Universal Vitiligo: From an MJ Fan-mily Sister”

  1. Simona says:

    This is something we all should keep talking about, just as much and as long (no – more and longer!) as the medialoid have been trashing our sweet angel and torturing him instead of showing empathy, compassion and understanding.

    Thank you Seven and thank you Joyce (your piece in Words and violence is beautiful, really!) for sharing with us.

    I was reading an entry on AllforLove blog this morning – an interview with David Nordhal – whom we’ve come to know a lot about also from you, Seven. Well he says at a certain point, discussing how vitiligo was already very apparent on Michael’s face, neck and hands (as far as he could see – Michael was already in the habit of wearing long slevved shirts to cover as much of his body as he could, poor baby) –
    Mr. Nordhal said “Michael always tought he was extremely ugly”.

    Nothing more to say.

  2. appleh says:

    Hi Seven, thank you very much again for that article. Michael was always aware of the media because of the bad experience he had with them. I agree that they twisted every word he said or everything he did and they even didn´t stop after his death. I felt very sorry, that Michael saw himself as ugly. For me he was never ugly, his beauty from
    the inside, his compassion, caring made him one of the most beautiful persons, despite of what others say.

  3. Lauren says:

    Of all the many lies and demeaning statements about Michael,
    this topic, to me, is one of the most egregious and telling
    as far as the media is concerned. In spite of confirmation
    by dermatologists and the LA Coroner, not to mention Michael’s
    own painful revelation in 1993, there are still those
    who doubt and question his supposed ‘wanting to be white’.

    There is no doubt that he suffered from vitiligo; media knew
    this and persisted in their skewering of Michael for the
    almighty dollar. So, this begs the question of what else, what other lies were perpetrated for years about Michael that have no basis in fact.

    The personal story from Voices Education is poignant and
    significant. I’d like to encourage others to take a deeper
    look into other facets of that work. Smart and revealing
    content that speaks to the horror of what happened to Michael
    and Diana and what we must change going into the future.

  4. Jan says:

    Thank you for providing a link and drawing attention to the Voices Education Project “Words and Violence”. There are many heartrending case studies included within the curriculum. Joyce’s story is wonderful and draws attention to the psychological damage such an illness has on its victims. Cosmetic difference or handicap is not tolerated in our societies. Michael was so much affected by that. The curriculum’s inspiration by and dedication to Michael Jackson and Lady Diana Spencer speak so clearly to the purpose and aim of the curriculum. It was conceived in that L.O.V.E. that Michael spoke so freely about. I was grateful to have been involved in one small part of the curriculum (The Caricature) and it is my prayer that this curriculum will be a springboard for people to use language with more care and concern for those within hearing. Not only were the dedicatees damaged by the words hurled at them without mercy, but the human family has been damaged, steeped in hate and intolerance with those words. It’s time to stop the madness. May this curriculum be a first step in that direction. Amen.
    Jan

  5. Joyce says:

    Wow, I read the entire David Nordahl interview on the “Allforloveblog”. It is wonderful! I just love reading stories and interviews from those who knew Michael so well. What an incredible relationship they must have shared built on mutual trust and respect! There are wonderful pictures of some of David Nordahl’s special artwork that he did for Michael in the “Opus”. They are simply gorgeous. Leave it to ignorant, hateful people to try to make something “dirty” out of something so innocent and beautiful! David’s description and thoughts about the lowlife scum Bashir are perfect!!
    Michaels strength, dignity and grace in dealing with his Vitiligo and everything that the world threw at him never ceases to amaze and inspire me!
    Thanks Seven!

  6. budsgirl11954 says:

    This is just one of the issues that our beloved Michael had to endure. Not only was he inflicted with a disease he had no control over, he was judged, defamed, ridiculed and called names for 25 years by a biased and malicious media. MJJJusticeProject is coalition of united world voices who want to see change in the reporting of Michael Jackson. We are asking the media to stop the distortions, falsehoods, and sensationalism that they continue to print about him, and Instead research the man. His true legacy of love for all humanity, his Guiness records of charitable works, and his concern for the environment way before it became a popular issue are just some of the positive things the media have failed to represent. His musical genius was only one small manifestation of his greatness.

    He had a outer ‘light” and with that inner beauty deep in his soul, he served humanity. God most graciously allowed us all to see it, and within that light lay the heart of a noble and honorable man. God Bless you Michael, much love always.

  7. Cherry says:

    Vitiligo…for some reason I never got into this topic very much, I just accepted it that he had this disease. And I understand why he didn’t really speak about it publicly or became a spokesperson for it, I think for that the issue was too sensitive and private for him. And, I’m going to admit it, one of the things that fascinate me about him is that he was first black and then white and no matter what color he was, people loved him and he was very very very successful! Nobody else in history ever looked the way he did or did the things he did. So to me, I can see it all as part of the big magic and mystery that Michael created for us. But it really hurts me inside and for him that he thought he was extremely ugly and wanted to look like “normal” people. But I guess nothing happens without a reason and it all makes sense in the divine order of things that his life and all the circumstances and people within it were supposed to be the way they were….

    Thank you for your wonderful blog, Seven, I come here every day.

  8. maria odette says:

    i too have this disease. I am 57 years old and a white woman. I know i cannot do anything about it so i am resolved to live with it.
    Sharing this disease with Michael makes me feel closer to him. I love you Michael… M

  9. Lauren says:

    Cherry, sometimes I think about that same issue. Michael
    did not receive his gifts by accident. He also did not
    receive his life challenges by chance. Everything he was…
    was designed for a greater purpose. He was black and white,
    and did find acceptance by all races; he WAS the message;
    he possessed talent and beauty and charisma to attract
    attention so his message would be heard. Some of us ‘got it’
    some not yet. His short years with us and sudden passing
    may also be part of this grand and perfect plan. Perhaps timing
    is perfect and hearts were ready for the shock, grief and
    awareness of the love Michael left for us.

  10. Dialdancer says:

    Seven,

    After seeing a few pictures of a young Michael of the J5 era showing signs of his condition I believe part of the problem with Michael being comfortable enough stop the bleaching to become white stories was the fear that many would reported or believed it was contagious. That would have been death to an entertainer. As he became older he was more withdrawn about his personal matters. Every time he tried to talk to the Media about his feelings they mocked and labeled him. Those pictures also made a lie out of a certain line in a song addressed to Michael. Any who were close to him had to know.

    That many member of the Media had a bias against Michael long before any scandal speaks volumes. Many entertainers with medical conditions have come forward and spoken of their struggles, and advocated programs for research and cures. All have been applauded and reported as brave to have the condition and fight for it while trying to live with it. All except Michael. He is seen as self-serving. That is the power of bad journalism.

  11. Bella Jackson says:

    This is just great Seven. A number of us understood the disease and knew what the poor sweetheart had to endure, but most people never knew about the disease or just didn’t believe it. I just wish that someone like Oprah would use this article and do something so that people would become aware of it and lift all the false stories about MJ. Thank you again Seven, and thank you Joyce and David.

  12. FF says:

    Of course he had vitiligo and he suffered because of it. I can’t remember exactly when I noticed but at some point it occurred to me, that for such a beautiful man and global heartthrob Michael was one incredibly covered up young man. He always had high collars and long sleeves on.

    And yet people think he lied about it! Why would he? More to the point which lies had he been caught out telling that led people to believe he was always lying to the public.

    I always find that most everything about Michael makes sense when you take him at his word.

    I used to fear so much that he kept a large part of his pain to himself because it seemed people just used his sensitivity against him – and yet it’s this sensitivity that made him the world’s greatest artist!

  13. Xidi says:

    Seven,
    Thank you so much for your wonderful article. I personally have some other type of skin disease, and I totally understood how Michael must have felt. Thinking about that I as a “normal” person would never, ever talk about my condition in public, unless it is absolutely necessary, it is so obvious that Michael, as a person who had to endure the scrutinizing of the public every minute of his life, would not discuss it openly, just as he would not discuss his private life with the media. He was a gentleman. It breaks my heart to think that he thought himself “extremely ugly”, while the whole world thought him as the most beautiful person that had ever lived. R.I.P, Michael.

  14. Inga says:

    Thank you Seven for this piece too.
    With the following link and those pictures I have learned about the desease Michael suffered from:

    http://www.jackson.ch/html/vitiligo.html

    There were quack doctors (ones like Dr. Murray seems to be),
    which told lies of skin-bleeching etc. They should have known better! But again and again “everything for money”!
    It is sad, that Michael felt ugly. I suppose, he thought , he was
    not attractive without make-up for the desease and maybe the accident he had in 1984.
    But he was a complete wonderful and attractive Black Man with a
    desease. Filthy press made him insecure.
    But all the people who hurt him, took advantage of him or wanted to harm him, they all loaded their karma.
    Michael can not be hurt anymore, he appreciates our love now.
    Inga from germany

  15. BlueLotus says:

    -Michael thought he was very ugly…
    This makes me cry…how cruel, insensitive words of a family member can cut through your heart and make such a permanent impression in your brain…that it becomes impossible to like your face/body no matter how good looking you are. All I can say God forgive Joe Jackson for what he did to Michael’s psyche.

    Love you Michael. You are a warrior of light. I love you more.

  16. TL says:

    Hi Seven,

    I just noticed on the MSN Canada homepage http://ca.msn.com/, there is an article that talks about Michael’s skin condition, under the Did You Know section. Just wanted to share with you…hopefully more and more people can become educated about this condition and what Michael went through.

  17. Seven says:

    TL,

    That’s good news! I hope that people will become educated about this disease! I’m so sick of the ignorance!

  18. Simona says:

    Seven, I came across this short video on YT today and there’s something I don’t think I EVER heard on video before –

    the video is about Michael’s photoshoot for the Thriller 25th anniversary EBONY Cover – (hum, seems I can’t copy/paste a link in here)

    around 0:30 the reporter says “you can see him having makeup applied to his HANDS“.

    There you have it – why should anyone apply makeup on their hands other than to conceal the effects of vitiligo, poor angel. A lot of people really can’t seem to be able to add 2+2 even to this day, and that’s sad.

    I’ve heard so many times people saying “I want to remember him as he looked in the Thriller era, that was our TRUE BLACK MJ”. Well, what those people never noticed is that Thriller’s Michael was actually blacker that he ever was, and why was that? HA! Makeup, tons of it all over his beautiful face, to conceal the patches and even up the tone – only, the shade he went for at the time was even TOO dark, darker than his original mocha. So, people don’t even know what they’re looking at most of the time.

    Sorry for ranting about this so much, but I will never stop fighting for this particular truth about him to be fully acknowledged. It’s unthinkable what was done to a suffering man.

    L.O.V.E.

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