tellhimfred.com

Over the last week or so, I’ve found it nearly impossible to get to bed before midnight. Last night I was determined to go to sleep before 11.

Nope.

I was in bed at 10:30, when I had a brainstorm. I tried to tell myself “Just wait until tomorrow. Go to sleep.” But I couldn’t. I got up and started messing around in Photoshop, and since I was up, I turned on the T.V. for some background noise.

The TV was left on TLC, and when I heard the title of the show that was coming on, “The Boy Whose Skin Fell Off”, I looked at the T.V. and said “Okay. Go on……”

Rather than background noise, I ended up shutting down thee computer and watching intently. Here’s the idea:

Jonny Kennedy died in 2003 aged 36. He had 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 agonising sores and leading to a final fight against skin cancer.

In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.

Kennedy is frank about his feelings on his upcoming death and practical about the arrangements. “Is it going to be painful? How long will it last? Am I going to drag on and be a dribbling old fart? I’d rather just go to bed, go to sleep, pop me clogs, over with. People, even in this day and age, are still frightened about death. They won’t talk about it-and it’s such a shame because it’s part of life. So, why not organize it like you would organize an anniversary or a birthday? Let’s get it right.”

One of the most amazing things about it is that he’s 36, knows he’s got 4 months to live, and he’s completely okay with that, and has the greatest sense of humor. In one scene, you see him flirting with Nell McAndrew, who ends up kissing him, tearing up, and hugging him. When she leaves, he looks at the camera, and says “The kid’s a pro.” He then makes a fist, blows on his fingers and wipes it on his shirt as to say “I’m on fire.”

The fact that he’s “scheduling” his death is also something that is hard to wrap your mind around. In one scene, he goes to pick out a coffin. He says that on one side, he’d like a tiger. On the other, he wants a painting of the label from Heinz Beans. He tells the coffinmakers “I want people to nudge each other during my funeral and say ‘What’s the significance of the beans label?’” When the coffin maker asks “I was going to ask you the same thing….what is the significance?”

Jonny just looks him in the eye, smiles broadly and says “Nothing!”

In another scene, Jonny sits with a friend and asks him to speak at his funeral. He then goes off on a tangent about what would happen if, after filming, he hadn’t died yet. He talks about how the film crew would say “Don’t give him any water.”

If you get a chance to see this, do it. It’ll make you realize just how good you have it….if only for a day or two.