The Boy Whose Skin Fell Off

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Did anyone catch this documentary on TLC last night? I stumbled across it in the middle of the night and for the first 10 minutes or so, was convinced I'd gone insane. *Really* surreal but v v moving. Here's TLC's summary:

"Thirty-six-year-old Jonny Kennedy was born with 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 agonizing sores and leading to his final fight against terminal skin cancer.

In his last months, Jonny decided to work with a filmmaker to document his life and death. The result is a film that tells the uplifting, confounding and provocatively humorous story of an amazing man on a mission to make his final days on earth memorable. Even at his very final moments, Jonny was still working desperately to raise awareness of this debilitating condition and to help find a cure. Jonny was also frank about his feelings on his upcoming death and practical about the arrangements. We join him as he chooses his coffin and has the symbols of his life etched into it. Not shying away from the grim reality of a terminal condition, this film is a celebration of a life lived to the very brim."

― feverdream, Monday, 22 August 2005 14:33 (twenty years ago)

... and not in the least a film for rubbernecking ghouls to gawp at

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 14:37 (twenty years ago)

I saw the title and backed away slowly, hands raised in a placating gesture as I inched towards the safety of the living room door.

― The Ghost of Black Elegance (Dan Perry), Monday, 22 August 2005 14:42 (twenty years ago)

Does anyone remember the quote from Jonny at the end of the Channel 4 ad for this, ages ago? It's been driving us senseless.

― Huey (Huey), Monday, 22 August 2005 14:52 (twenty years ago)

I saw a little bit of this. Too sad for words. :-(

― nathalie starts to cry each time we meet (stevie nixed), Monday, 22 August 2005 14:54 (twenty years ago)

I definitely have some reservations about the way it was sold (TLC is frequently guilty of this sort of thing..."The Face Eating Tumour" followed the program under discussion here) but I don't think you can entirely reduce the whole thing to freakshow exploitation worthy of your sophisticated disdain.

I mean, given the subject matter, wouldn't *any* telling of his story carry some appeal to 'rubbernecking ghouls'? Should it not then be told?

― feverdream, Monday, 22 August 2005 14:54 (twenty years ago)

I think it should - this sort of thing is a sobering and fascinating view into just what our unpredicatble bodies can do to us.

― Trayce (trayce), Monday, 22 August 2005 15:05 (twenty years ago)

Horses for courses. Personally, I have no interest in seeing "just what our unpredicatble bodies can do to us". But, whatever floats you boat...

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 15:07 (twenty years ago)

I saw this a while ago. It was heartbreaking, but he was such a character hitting on Nell McAndrew! A truly inspiring individual.

― Panther Pink (Pinkpanther), Monday, 22 August 2005 15:07 (twenty years ago)

I'm a bit morbid I admit, and have great fascination with the body and its grody workings... that guy that did the corpse plastination, I thought that was very interesting.

― Trayce (trayce), Monday, 22 August 2005 15:09 (twenty years ago)

And there I was thinking he was a sinister charlatan in charge of a travelling freak show!

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 15:13 (twenty years ago)

it was *his* title, he made the film and it wasn't exploitative in the slightest. he made the film he wanted to make and was quite a mischievous dude with a very dark sense of humour. you don't have to worry about how it was "sold"

― stelf)xxx, Monday, 22 August 2005 15:14 (twenty years ago)

I'm sure the people who made it did so with the best of intentions (and, no, I'm not being sarcastic (for a change))

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 15:17 (twenty years ago)

I thought they dodged the cliches of the genre farily successfully. They didn't go out of their way to portray him as Tireless Monk Awaiting His End With Dignity--the scene wherein his mother changes his bandages is awfully hard to watch for this reason. Between sobs and a conspicuously runny nose, he snaps at her for pulling too quickly, though it's obvious she's as patient as she can be with him. In another clip, she states quite unabashedly that she would've aborted without reservation, had pre-natal tests for the illness been available at the time she was pregnant with him. This isn't consistent with the usual formula, I think.

― feverdream, Monday, 22 August 2005 15:19 (twenty years ago)

to stelf)xx: my comment in:re 'sold' was about TLC's handling of it...i think you'd agree that 'the face eating tumour' wasn't nearly as subtle or well done, which damages their credibility with me somewhat. Anyway, I'm with you on the film iteself.

― feverdream, Monday, 22 August 2005 15:24 (twenty years ago)

(TLC is frequently guilty of this sort of thing..."The Face Eating Tumour" followed the program under discussion here)

That's misleading too. It was more like a face hiding tumor.

― Dr. Glen Y. Abreu (dr g), Monday, 22 August 2005 16:13 (twenty years ago)

"The Face Hiding Tumour" doesn't put the willies up you like "The Face Eating Tumour" does tho

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 16:20 (twenty years ago)

Yeah, a tumor that leaps from face to face shouting "PEEK-A-BOO!" is much less frightening mental image than a tumor with big teeth that leaps from face to face shouting "NUM NUM MORE NOSES!" and chomping away.

I don't even know on what level I'm being sarcastic here.

― The Ghost of Black Elegance (Dan Perry), Monday, 22 August 2005 16:27 (twenty years ago)

"The Face Hiding Tumour" doesn't put the willies up you like "The Face Eating Tumour" does tho

May I suggest "The Boy Who Had a Hippopotamus Face" ?

― Dr. Glen Y. Abreu (dr g), Monday, 22 August 2005 16:33 (twenty years ago)

Can't you get 5 to 15 for putting willies up someone? And how did it get more than one?

― The Ghost of Belated Obvious Jokes WAHEY (Dan Perry), Monday, 22 August 2005 16:35 (twenty years ago)

If they'd called it "The Face Hiding Tumour", they could have called their next documentary: "The TLC Documentary Makers Whose Ratings Fell Off"

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 16:37 (twenty years ago)

http://www.edenagain.org/publications/pdfs/images/comedian.jpg

― Dr. Glen Y. Abreu (dr g), Monday, 22 August 2005 16:38 (twenty years ago)

http://www.tzuchi.org/global/news/articles/images/20040405_2.jpg

― feverdream, Monday, 22 August 2005 16:45 (twenty years ago)

still from 'face eating tumour', obv. it appears his lower lip was deemed NSFW.

― feverdream, Monday, 22 August 2005 16:47 (twenty years ago)

That is horrifying.

― The Ghost of Black Elegance (Dan Perry), Monday, 22 August 2005 16:48 (twenty years ago)

Yes, thanks ever so much for posting it

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 16:53 (twenty years ago)

it is. the tumors are apparently an outgrowth of dental mineral, and so are as hard as teeth. some very talented taiwanese surgeons (and i was pleased this didn't turn out to be another 'rescued by white people' story, though they did interview a minnesota surgeon) did a pretty good job in reducing them, restoring his eyesight and reducing the pressure on his airways.

― feverdream, Monday, 22 August 2005 16:54 (twenty years ago)

Why are you telling us this exactly?

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 16:57 (twenty years ago)

And what does that have to do with his lower lip being NSFW?

― The Ghost of Black Elegance (Dan Perry), Monday, 22 August 2005 16:58 (twenty years ago)

It's naturally pixelated.

― Jarlr'mai (jarlrmai), Monday, 22 August 2005 17:00 (twenty years ago)

And how does your great medical science explain this, kimo sabe?

http://www.premiereradio.com/vimage/2005/07/81_news_view.jpg

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 17:01 (twenty years ago)

i don't know why his lip is deemed NSFW! i'm not the one who pixelated the photo, christ.

diddyismus: your tone on this thread is a bit disquieting. you object to what you characterize as the 'rubbernecking' appeal of these types of stories, but it seems you'd have us instead ignore them entirely, so that you aren't put off your lunch.

― feverdream, Monday, 22 August 2005 17:02 (twenty years ago)

Well, do you enjoy being put off your lunch? I don't know, maybe you do......

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 17:03 (twenty years ago)

This is how the nazis got started, people not wanting to be put off lunch.

― Jarlr'mai (jarlrmai), Monday, 22 August 2005 17:04 (twenty years ago)

On the contrary the Nazis believed in strong stomachs - the stronger the better!

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 17:06 (twenty years ago)

it doesn't have that precise effect on me, actually. perhaps being a medical student i have something of an obvious interest in it, but i didn't know it would be out of bounds to discuss here.

― feverdream, Monday, 22 August 2005 17:08 (twenty years ago)

It's not out of bounds. Lame trolling is all... perhaps Diddyismus also lost his skin?

― Dr. Glen Y. Abreu (dr g), Monday, 22 August 2005 17:29 (twenty years ago)

Foreskin maybe?

― Dr. Glen Y. Abreu (dr g), Monday, 22 August 2005 17:29 (twenty years ago)

Like you lost your sense of humour you mean?

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 17:29 (twenty years ago)

You should watch the documentary at some point. It's not exactly funny.

― Dr. Glen Y. Abreu (dr g), Monday, 22 August 2005 17:31 (twenty years ago)

You don't say? Well well, I'd never have guessed that! That's put me straight then...

― Diddyismus the Blind (of Alexandria) (Dada), Monday, 22 August 2005 17:32 (twenty years ago)

back on the lurk, i guess.

― feverdream, Monday, 22 August 2005 17:56 (twenty years ago)

Don't, fever! Dada's just fucking w you, and you seem nice.

― LeCoq (LeCoq), Monday, 22 August 2005 17:59 (twenty years ago)

Yeah, if you're deterred by bad jokes and nazi sympathizers, then you might as well sign off from the internet forever.

― Dr. Glen Y. Abreu (dr g), Monday, 22 August 2005 18:08 (twenty years ago)

to glen abreau, md: sorry, i misread your earlier response. i thought the 'trolling' was a ref. to my original post.

lecoq: hey you're my longtime fave ilxor! maybe i'll stick around after all!

i apologize if anyone got illed out by my the link upthread. if someone wants to remove it, have at it!

― feverdream, Monday, 22 August 2005 18:21 (twenty years ago)

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