Tuesday, June 28, 2005

THE BOY WHOSE SKIN FELL OFF

I was flippin' the channels as usual last night and stopped when I came across the documentary, THE BOY WHOSE SKIN FELL OFF, which was produced by the UK.

I had seen it advertised the night before.

I only watched a few minutes of it.

I will make every effort to never complain about anything ever again.

I journeyed to Albany over the weekend for a Bewitched event at the Regal Cinemas in East Greenbush, NY. I arrived Saturday, left Sunday morning. And did not stop eating. Sunday night, I became quite ill. I took some briosky, and I was fine.

But, again, after watching THE BOY WHOSE SKIN FELL OFF, I will make every effort to never complain about anything ever again.

The young man at the centre of this documentary suffers like no one I've ever seen. His entire body is a LIVING SORE. His ENTIRE body. And he is in constant pain. CONSTANT, unending pain.

Watching only nine minutes of this program changed my life, more than watching 254 episodes of Bewitched (again and again) ever could have.

And yet, for a moment, I thought I was to give up who I am and the love I have for life because of the false guilt that I began to experience when watching THE BOY WHOSE SKIN FELL OFF.

No.

This is not the lesson the beautiful soul at the centre of this program has for us.

He, and others like him (ANYONE who is severely and legitimately suffering), offer us some far more profound:

Appreciate every healthy, happy waking moment. Don't stop being who you are or sharing the beautiful gifts that God has granted you.

After watching THE BOY WHOSE SKIN FELL OFF, my first thought was, "I have to stop writing, singing, dancing, acting. What have I been thinking? Look at this little boy: He is BLEEDING EVERY MOMENT, on EVERY PART of his body. And I'm worried about selling a script today? I need to start worrying about things that really matter."

No.

This is not the way I should be thinking. And this is NOT the lesson THE WHO WHOSE SKIN FELL OFF has to teach us all.

Again, this extraordinary young man, and others like him, is telling us:

Embrace the talents you possess. Live your life as fully as you can. Take your talents and use them for the highest good of all concerned. Don't stop singing. Don't stop dancing. Don't stop acting. Don't stop writing. Don't stop accounting. Don't stop renting apartments. Don't stop teaching. Don't stop fixing cars. Don't stop putting out fires. Don't stop defending. Don't stop marketing. Don't stop public relations. Don't stop selling. Don't stop buying. Don't stop studying. Don't stop, period. As long as what we are doing is good, legal, happy, non-vulgar, and graced with light, don't stop.

Because if we do stop, we will not only be doing ourselves a great disservice, but we will be doing a great disservice to others who will benefit from our talents. Others like THE BOY WHOSE SKIN FELL OFF, who will only suffer more if, for example, someone stops studying medicine.

And medicine is really what we're ALL studying, isn't it?

Each of our talents, however diverse they may be, is a form of medicine. Physicians offer medicine for the body. Phychologists offer medicine for the mind. The clergy offers medicine for the spirit. Lawyers offer medicine for justice. Mechanics offer medicine for cars. Firefighters offer medicine for a burning house. Accountants offer medicine for a burning checkbook. Sellers offer medicine for buyers. Buyers offer medicine for sellers.

Those of us in the entertainment industry offer medicine for each of these areas combined - a medicine for the Soul which, guided by God, runs the body, the mind, the heart.

How could we ever stop doing that? And why would God want us to.

Watch THE BOY WHOSE SKIN FELL OFF (details for which appear below).


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The following information appears exactly as it is written on the website for Channel 4 in the UK regarding THE BOY WHOSE SKIN FELL OFF.



THE BOY WHOSE SKIN FELL OFF
A year ago, 36-year-old Jonny Kennedy died. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) - which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer.
In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.
Astonishingly, The Boy Whose Skin Fell Off captivated nearly 5 million viewers and helped to raise £500,000 for the EB charity DebRA. Six months later, Channel 4 is re-screening the film and re-visiting Jonny's family to see how they have come to terms with his death and the public's reaction to the film.
Jonny was frank about his feelings on his upcoming death and practical about the arrangements. The film featured moving interviews with his friends and family, including his mother Edna, who had been his life-long carer and faced the prospect of Jonny's death with disarming mixed feelings, torn between relief for Jonny and knowing that she would miss him desperately.
But the film, and the reaction it has had from viewers, has had a profound effect. "It's been an unbelievable experience," she says. "Jonny wanted to do the film to get EB and DebRA better known, but it has been so much more than that; the film seems to have touched so many people.”
"Jonny has achieved something amazing and I know that, wherever he is now, he will be jumping with joy at the response the film has had."
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DebRA UKFor more information about DebRA UK - the national charity working on behalf of people with Dystrophic Epidermolysis Bullosa - visit www.debra.org.uk or telephone 01344 771961.If you'd like to make a donation, you can phone 0870 402 0201.

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