the boy whose skin fell off

i watched this documentary on tlc a few years ago (not by choice, really; my friend wanted to watch it) and it pops into my head every now and then out of nowhere. i haven't looked hard enough to find it on video/dvd, but here it is in five different YouTube presentations.

fyi: it's the story of a 36-year-old--who looks about 15--with a rare disease that causes his skin to fall off when touched. it documents the man's last few months of life as he plans his own funeral. you really have to love the guy's attitude about life, and about death. the story is a bit unusual, and the clips may seem long (keep in mind its original format was for tv), but the story is one i will never forget. and jonny has some great one-liners. (a few comments are a bit crude, but i think that should be allowed, considering...)

the third clip is difficult to watch because he is in so much pain. (just a warning...) also, how do you feel about the possibility of abortion in the face of such a disease, as discussed in clip 3?

tlc played a post-documentary commentary portion when i watched it the first time, which included some great comments from jonny. i haven't looked for it hard enough yet.