Hacker Cinema
The Boy Whose Skin Fell Off
2004 · Film · documentary · 50 min
Directed by Patrick Collerton
A year ago, 36-year-old Jonny Kennedy died. 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 agonizing 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, 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.
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The optimum middle is to try to figure out the most achievable pathway to help people to as much health as possible regardless of where they’re at, while accepting where they’re at, and encouraging persistence in searching for achievable steps out of sickness if none are available.
There’s an incredibly sad but inspiring documentary called “The Boy Whose Skin Fell Off” about a man named John Kennedy that died of a genetic skin condition called EB at 36. He did everything within his power to make the most of his life, and was brilliantly dedicated to squeezing as much meaning and good as possible out of his horrible situation.
Failure to attempt moving away from and transcending sickness is itself possibly the worst form of sickness, and something that can be easily cured by just having someone genuinely loyal and rooting for you, even if only your inner self. What sick people need most, more than simple compassion and accommodations for their problems, are people genuinely rooting for health/trying to find solutions or grieving the difficulty in finding any.