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The Boy Whose Skin Fell Off


"That's me in the box."

Ever since I met my wife, she's randomly delivered that phrase to me in a high-pitched British accent. The line caught on, and we've been uttering it to one another for years now. This week, I finally acquainted myself with its origin. And because the movie is unavailable anywhere else, we huddled over my laptop and watched the British documentary The Boy Whose Skin Fell Off in five 10-minute segments on YouTube.

You heard the title right. The 2004 film follows the final four months of Jonny Kennedy, a 36-year-old man suffering from dystrophic epidermolysis bullosa, a disease that made his skin peel from only the slightest touch. Rather than give in to the accompanying cancer, Kennedy opted to film his remaining days, which included selecting a coffin, attending charity benefit functions and hosting a housewarming party.

Let me say, this is not an easy watch. In addition to witnessing the pint-sized tricenarian with the boyish pipes wail with pain, we also witness his mother change the bandages on his back, a procedure as graphic as anything you'll see on the Discovery Health channel. Knowing the film will end with Kennedy's demise makes his tale even more macabre, but the guy possesses an endearing mixture of grandfatherly sarcastic wit and childlike innocence. He makes references to the inherent danger of someone with his condition "wanking" and swears on occasion.

Despite commenting on her deceased husband's inability to ever cope with their son's condition, Kennedy's ever-present mom--who doubles as his caretaker--is interviewed many times, and her candid assessments help humanize what could otherwise have been a very detached look at a stranger's life and death. She admits to anticipating a sort of freedom once Kennedy has passed away, and the guilt that will accompany the feeling. Many of Kennedy's family and friends confess they'll miss him when he's gone, despite experiencing relief that a life filled with constant pain will finally conclude.

Our favorite Kennedy-ism, played during the film's first few moments, was recorded several months before the corresponding shot depicts his lifeless body housed in a pine coffin. He knew he'd be in that enclosure soon, but he still sounded cheerful.

Having succumbed to tears at least twice before finishing the film, I could easily feel guilty for quoting the man for a chuckle. But given his propensity for humor and his uncanny ability to face death head-on--and with a half-smile to boot--I think The Boy Whose Skin Fell Off would be OK with me resuscitating one of his more memorable lines.