Monday, October 24, 2005

Don't Stop Me Now

Earworm number 347, courtesy of QUEEN and last night's entertainment on TLC.

The show was called "The Boy Whose Skin Fell Off." I had no idea that I was soon to become a blubbering blob of jello on the couch.

As the show opened, a rather high-pitched voice began introducing the pictures, of a stange-looking boy in a wheelchair. He wore bandages all the way down his arms, covering oddly-shaped stumps at the ends, a constant hat, and a bemused expression on his face. His little voice sounded so sweet. Pre-pubescent even. Then I listened as it was revealed that this sweet little boy was 36 years old, and had been suffering since before birth with a disease I haven't checked the spelling on yet, called EB, which caused his current terminal skin cancer, and he was planning his own funeral.

This show was more than one of those "look at poor me who suffers while you smug innocents look on" types. He narrated his own death. This man suffered, really really suffered, his entire life, from a genetic skin disorder that kept his skin from ' binding' to his body properly. The first tears came while his mum talked about how difficult emotionally it was to try to cuddle him as a newborn, knowing that EVERY TIME she TOUCHED him, his skin would blister horribly, and painfully. Nearly every day, his body was 75% covered in bandages. Horrendous, constant pain. He was born with NO SKIN covering one of his legs from the knee down, presumably from friction in utero.

And Yet, no pity party for Mr Kennedy. All of Alnwick, England, was invited to celebrate life with him. The sense of humor was immense. I laughed mightily as an English Starlet, spokesperson for the UK Charity, DEbRA, started crying whilst talking to him, and after she left to get him his autographed picture, he turned to the camera, grinned mischeviously, made a 'chalk one up for me' sign in the air, and chuckled. He also mentioned, as an aside, that he could see right down her shirt as she had leant down to hug him.

The earworm came, and WILL.NOT. LEAVE. His funeral was completely planned out. He chose his coffin carefully, made sure it was carved with tigers on the side, and an image of a can of Heinz57 beans. Why? So people would look at each other at the funeral and wonder "Why the beans?" He figured they would have something to talk about then.

Near the end, I began sobbing as the camera closed in on his mum, as she was mouthing the words to his chosen funereal soundtrack: Don't Stop Me Now by Queen. His favorite song. She lip-synched along through her tears. And then I could no longer see the screen.

I'm having such a good time. I'm havin' a ball.

7 comments:

Cristin said...

Hi! Thanks for stopping by my blog. Can I just say that I CAN NOT BELIEVE that you're name is spelled this way!!! I guess you're parents were punishing you too LOL! Has anyone EVER spelled your name right?! This is so funny. I met someone once that had this same spelling and that was it.

I watched the same show. I thought he was amazing and I was also disturbed by it. It was so sad and he was so brave.

Well, I'm glad to meet another "cristn" It's so weird seeing your/my name on your blog LOL.

Elizabeth said...

Hi, I'm a stranger to your blog... I saw that movie, too. It was great and I also ended up a blubbering mess. I must say, though, that I really enjoyed his refreshing perspective on life!!
~Elizabeth
P.S. Feel free to peruse my blog as I discovered yours!

Amanda B. said...

Oh man, I watched that show a few months ago too. It touched me on a level I can't even explain, but since you've seen it too, you know what I mean.

http://www.amanda.veryzen.com/index.php?s=for+jonny

LadyBug said...

Just stopping by to wish you and yours a Very Merry Christmas, Cristin.

God bless you,
LadyBug

mrtl said...

Merriest of Christmases to you, Cristin! May you not eat too many cookies that you get sick!

C said...

I posted about that show a few months ago too-I cried like a baby! It was unbelieveable how much pain and suffering he had to go through yet he was pretty positive about it all. By the way, I found your blog through Carol at The Second Half. Love the chicken/sex non-joke!

Lucy said...

I saw that show a few months ago as well and cried my eyes out. I was super inspired by his attitude through it all. I would be bitter. I am bitter about much lesser things.