I might have been a better artist if I had been well, it is a myth that suffering makes you creative'
Leon Botha is a local artist. The 24-year-old looks like a shiny new pin, sharp and as durable as his Timberland boots. He has a pixie-like aspect - in Victorian literature, people with Progeria were often thought to be elves with watchful and magical qualities.
He is wearing camouflage trousers and boots and an armoury of jewellery; silver earrings decorate the lobes of his ears and his hands are heavily ringed.
He has a high voice like a fork struck against crystal and a giggle like sharp grit. His eyes are the clear blue eyes of a baby, but Leon is not a baby and an acuteness lies within those eyes, partly born from stubbornness, but mostly, I suspect, because he is just Leon.
He is sick of being identified by his condition. "I might have been a better artist if I had been well," he says, "it is a myth that suffering makes you creative."
He lives in Brackenfell, Cape Town, within a closely knit family and has two brothers and is challenging, bright and takes no prisoners. In a way he is lucky because he needs to fool no one, least of all himself, and he is one of the few people I have met who I would hate to argue with. I know I would lose.
Progeria is a rare genetic disease where the process of ageing gallops along seven times faster than in other human beings. It affects approximately one in eight-million children and, although Progeria sufferers might be frail, their brains are normal.
Many die before they are 20, but now more sophisticated technology allows them to live longer. The triple-bypass operation Leon underwent four years ago has given him new life.
Leon has collaborated with photographer Gordon Clark to produce photographs for an exhibition called Who Am I? Gordon is a successful maker of commercials, dealing as he says, "with supermodels and soap powders", who has just returned to South Africa after living in Hollywood for 24 years.
"The idea of an artistic collaboration came from Leon," he tells me. "He wanted to play with the idea of mortality."
"From a young age," says Leon, "death has been part of my thinking. We think we have a certain amount of time as human beings and we try to fit our notion of destiny into this idea. We forget that life passes quickly."
In one of the photographs, entitled Between Life and Death, Leon is perched on the edge of a grave.
Alert to clichés, he says: "This might sound like a corny idea, but visually it is a lot better, more subtle."
He has always been able to laugh at himself. There is a photograph of him on the Net and, when someone pointed at it and said, "Is that a man in the middle?" Leon answered, "No, go back to sleep."
He has dealt with life with a sense of proportion and a sense of humour. "Gordon," he informs me, "doesn't believe in sugar, but I love my Coke. I said to him the other day, 'Just give me a Coke, even if it takes five minutes off my life.'"
Although a successful artist in his own right, Leon has never collaborated with anyone before. I wondered whether he would not need to be careful that he was not being exploited for someone else's art.
"That is true," he replies, "but there are other things like creative intention. It can easily crash if you have different visions; it can be very difficult.
"For me it was a case of showcasing myself. I wanted to break down barriers and all the preconceived perceptions."
Gordon emphasises this: "There were things he wanted to do that were really scary. He frequently asked: 'Am I challenging you or are you challenging me?'"
Leon interrupts, "As we became friends, the work took on another shape that for me has been really cool."
"We started off," says Gordon, "thinking of a documentary format, but we realised it was never going to work. It would just be this guy with Progeria hanging out in normality."
Leon says this is something he would never have considered. " I have always stayed out of the media. I have only given one interview in my entire life and my terms were that it should be about my work as an artist."
It was Leon who came up with the theatrical idea of metaphorical images set within a highly styled context, to which people could respond in their own way.
Some of the results rattle the central nervous system. For example, there is a shot of Leon and South African actress Tanit Phoenix, lying in a forest as Adam and Eve.
"This image really challenges people's expectations of me," says Leon. "It makes people feel uncomfortable to see me lying with a young woman. But why wouldn't I consider myself in that position? Why can't I be lying with a beautiful girl?
"People think I am weak, but I have a lot of upper-body strength. It's a chance to show them the truth, instead of people deciding for me what the truth is. There has always been a sense of people taking power from me."
The picture he feels best reveals his inner core is the one where he is fighting a real wolf. "What interests me," says Leon, "is the way one can shape one's own reality. You can choose how you act in any given circumstance. There is always an opposite thought to the one you are thinking. If you are feeling lonely for instance, you can choose to see it not as loneliness but as independence. It all boils down to attitude."
He has his own ideas on beauty.
"Real beauty is deep. You might think that I would think that way because of the position I am in, but I am not just saying it. I have experienced it.
"I have seen people I think are beautiful, but when I get to know them, I find there is nothing there, nothing."
Leon and Gordon spent months driving around the Cape Peninsula until they found the right locations. "From the start," says Leon ruefully, "the problem was how we were going to achieve it more than the thing itself."
"It was a real collaboration," says Gordon. "There wasn't one shot that we didn't agree on together."
Much of Leon's daily life was more disturbing to Gordon than to Leon.
"Wherever we went," he says, "people surrounded him, snapping away on their cellphones. "I don't mind them taking pictures, but I do like them to ask," says Leon. "It is such an intrusion of privacy."
Gordon tells of the time they went to a children's party and a child screamed, "I don't want a goblin at my party, take him away."
But they both agree that the project has been lots of fun and Leon loves fun. He works as a DJ a few nights a week, plays a bit of basketball and is up for partying like any 24-year-old guy.
"I am a night person. I like to paint through the night. There is something about the night that really attracts and excites me. Time seems to pass in a different way during the night."
The nature of time is very much on Leon's mind. "Nothing is still, things change all the time. I don't fear death, but I do fear what is going to happen between then and now, but I have faith in an energy that will provide. There are around 300 basic religions in the world but it never occurs to anyone that prayers are answered."
As one of the longest survivors of Progeria, Leon knows what he is talking about and, whatever happens in the future, he will remain alive to the world and its energy.
He might have a rare disease, but more than that, he is a rare human being. If his body is beyond his 24 years, so is his mind.
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