Levi Hawkins, the Nek Minnit guy on how that viral video changed his life

To more than a million people who watched a YouTube video clip many years ago, 'Nek Minnit' is just a punchline.

To Levi Hawken it signals the moment that defined him. Speaking for the first time in a new documentary, the man who became a meme recalls the joke that birthed a viral catchphrase and turned him into an internet caricature.

Hawken originally featured in a skateboarding video. In 2011 the now-famous clip in which he joked about leaving a scooter outside the dairy ("nek minnit" he found his scooter in pieces) was uploaded to YouTube.

By the end of the year, the clip had been viewed 1.6 million times and "nek minnit" was New Zealand's sixth-most-searched term on Google. As Hawken told Canvas magazine, it didn't stop there.

"I've met so many people and it's made a lot of people happy. But you know what it's like, you see famous people and you think they're happy and they're not."

In the Loading Docs short documentary MEME Me, Hawken goes back to the beginning, confronting the video that started it all and the price it had on a young skateboarder and artist living with a rare genetic condition.

Only one in 7000 people worldwide have Ectodermal Dysplasia, which affects sufferers' physical appearance.

Hawken has hardly any sweat glands, so his skin looks discoloured. Thanks to the disorder, he has also lost his hair and his teeth are crooked.

As the clip was exchanged around the world, internet users with no knowledge of his medical background speculated carelessly and often cruelly about his appearance. Some thought he had leukaemia, others claimed he was "retarded" or had a meth problem.

Hawken had already been bullied about his appearance at school and having to deal with that on a global stage was hurtful.

The other problem, as he told Canvas, was that he lost control of a reputation built up over two decades of absolute dedication to his craft of skateboarding.

"It was upsetting. It wasn't so much that it was out of my control, it was that all these other people were controlling it and using it. I was really worried about what I was going to have my persona and my credibility assigned to."

Hawken has accepted a number of commercial jobs that play on the meme, including NZTA's Dilemmas drink-drive ad, in which he is referred to as "The Nek Minnit". He owns the relevant trademarks, "not so much so I can do things with it but just actually for my own protection. I've just had to focus on who I am and going back to what I do."

The documentary is directed by Hawken's old friend Stjohn Milgrew, who has been photographing Hawken and his friends since they were teenagers together in Aotea Square.

The New Zealand Herald is showing MEME Me and another Loading Docs short documentary, He Hekenga Tūhura, the last interview of master waka carver and celestial navigator Sir Hector Busby. Both can be watched at nzherald.co.nz/loadingdocs