I watched this tonight on TLC and was just floored by how simple and effective this documentary was.
For those who haven’t seen it, it’s a documentary about Jonny Kennedy, a man afflicted with epidermylosis bulloma, which is basically a condition in which the person has such fragile skin that it blisters and sloughs away at the slightest touch. Horrible, horrible disease, one of the most painful conditions I can really think of. Jonny developed skin cancer and decided not to have treatment, and he filmed the last months of his life in order to bring light to this condition.
All I can say is that I hope to have the dignity and humour to face death the way he did. Just a beautiful film. You can see some previews and such over at the TLC site for the film.
BTW, I added a spoilers tag just to be safe, I don’t really know if they go on threads like this or not. Sorry if not! And sorry if this sounds jumbled and incomprehensible – I’m fuzzy from Percocets for my oral surgery today.
I saw it and was deeply moved. What an amazing man. To live like that for 36 years . . . seeing him is what could make someone question the existence of God.
I loved the note he left, and the reasons for the designs on his casket.
One thing I didn’t like, and I wrote to TLC about it, is that I don’t think they should have used “boy” in the title. He was a grown man, despite looking like a child. He was a boy once, true; but the film was primarily about the end of his life - and he was a grown-up by that time.
If anyone hasn’t seen it, you should make sure to watch it.
We watched this last night. I’m so glad they are showing actual documentaries once in a while, not slicky produced dumbed down crap with the same footage over and over.
That’s why it was so powerful. It was Jonny telling his own story, as if he was speaking from beyond the grave. Starting the whole thing with his dead body was amazing. The filmmakers did such a good job at letting his story tell itself.
I just about cried when his mom changed his back bandages. I just felt for the poor man so much.
One of the things that got me is when he explained how his father put him in salt water baths as a child, and how once he stripped him of all of his bandages and sat him in the garden – where the flies proceeded to light all over him. I know his father probably didn’t know better and such, but goddamn. The unbearable agony is almost too much to comprehend.
I noted the title, as well, missbunny – I thought perhaps it was referring to his skin falling off as a child, you know? As in his skin fell off and never came back, hence the boy part of the title.
So true, FilmGeek, I love Discovery and wish they’d do more things like this.
It was a Ch4(British TV Station) production AFAIK. Disco most likely just bought the rights to show it. Was this the one with Nell McAndrew with him? Shows of this nature are shown very regularly on UK network TV.
I loved the way he made a bet he could make Nell cry. Little git did it very successfully He was a man of great strength and humour. The docu broke my heart when I saw it a few years ago.
He made the comment, regarding the sitting-in-the-garden incident, something like “that’s when I learned not to like flies.” Just a little sentence that doesn’t mean much - who likes flies anyway? - until you think about what flies would do to a body like that. I can’t remember if that scene happened before or after they showed the state of his skin. I suppose his father was just desperate but the ignorance is astounding.
Yes, so true. It was one of those moments that I had to really, really struggle to be rational and logical and look at it from the viewpoint of the father trying to do what he thought was best – but salt water baths. It hurts to just swish with salt water after dental work, I can’t imagine my entire body basically being an open wound and being soaked in salt water. As a child. By my father. That thought was just so harrowing.
Another part that got me was when how he and his mother were talking about the genetic testing, and they both said that pregnancies that tested positive for EB should be aborted. So true, yet still so hard for a mother to have to say, not to mention Jonny. How must it be to truly wish you had just rather not been born?
I turned off my TV as soon as the title for this show appeared. Something about skin falling off just squicks me out. I can’t imagine going through puberty like that. Was it all of his skin, or could he still spank the monkey and stuff?
You know, it should be obvious from the thread that the story is about a man who suffered a horrible agonizing tortuous life. If you’re going to make jokes, make them somewhere else. Or grow up and move on to the 9th grade. Your comment was in extremely poor taste.
I knew someone in Junior High School who had EB. He barely had any fingers left.
There were terrible rumors about him until one day he did a presentation to our class about his condition. I don’t remember any seventh grader saying anything about his skin for a very long time afterwards.
I could only watch half the documentary because his story was so sad.
He was a man of great strength and humour. The docu broke my heart when I saw it a few years ago.