Why this photographer documented his own death on Instagram

A powerful new short film captures the remarkable wisdom of fashion photographer Jonathan Waiter as he underwent treatment for terminal cancer – watch it here

Jonathan Waiter’s Instagram wasn’t like other fashion photographers’. Amongst the expressive portraits and famous faces – Rick Owens and Xiao Wen Ju make appearances – were shots taken from hospital bedsides, of phials of blood on counter tops, pictures of needles and IV drips. Waiter had spent two years battling Non-Hodgkin lymphoma with intense chemotherapy and two bone marrow transplants, documenting it all on his Instagram until the disease finally took his life in early 2015. 

After meeting him through the app, photographer Lina Scheynius showed her then-partner David Sauvage Waiter’s profile – they decided together to create a film, interviewing him about his illness and philosophical outlook on life and death, accompanying his voice with clips from his own feed. It’s a poignant reminder of how we experience death in the digital age, and a memento of a remarkable person who left the world behind. Here Scheynius and Sauvage present the film for the first time, and discuss the lessons they learned from Waiter.

What was Jonathan’s story – where did he come from, how would you sum up his vision artistically?

Lina Scheynius: The truth is, I didn’t know Jonathan very well. I knew him primarily through his work. I can tell you he came from California but lived in New York. He was busy doing fashion photography in New York when he discovered a tumour in his chest. His fashion work can still be seen here. He was a sweetheart, but quite provocative. The first cancer-related image he uploaded on Instagram was a terrifying picture of him looking very ill. And then he just kept documenting his illness and sharing it. We only knew each other for six months, and I could only see him when I was in New York, but he instantly felt like a close friend. 

What did you first think about his decision to document his illness so publicly?

Lina Scheynius: I thought it was so brave, and inspiring.

David Sauvage: I thought it was strangely normal. We document everything nowadays. Jonathan just extended that principle to cancer. ‘Uncanny’ is how I feel about it.

Did illness give Jonathan a different perspective on life?

Lina Scheynius: I’m stealing a quote from his Instagram feed to answer this: “I’m lucky because I’m surrounded by so many beautiful souls. These last two years have been beautiful despite having cancer. I’m willing to say I have never been happier. But there is that darkness that looms and it’s like the entire spectrum of emotion demands to be felt at once. Everything is violent and everything is bright. I think it was always like this, I just couldn't see it with such clarity. I certainly do now, and now everything is painful and beautiful at the same time.”

“These last two years have been beautiful despite having cancer. I’m willing to say I have never been happier. But there is that darkness that looms and it’s like the entire spectrum of emotion demands to be felt at once. Everything is violent and everything is bright. I think it was always like this, I just couldn't see it with such clarity” – Jonathan Waiter

David Sauvage: No, I don’t think cancer changed his perspective radically. And I think that’s what’s extraordinary about it. The cliché is that dying is transformative. In Jonathan’s case, it wasn’t. Dying didn’t make him any less cynical. In some ways it made him more cynical. Yeah, he enjoyed his friends more. But I think what mattered to him most, before cancer and up until he died, was creating beautiful imagery – and creating work that was true to him.

How do you think social media has changed the way we interact with death and grief?

David Sauvage: The digital tombstone is an entirely new phenomenon. The dead have Facebook pages and Instagram accounts that are much more visited than any grave. Social media has made dying more public. Now everyone can come to the funeral. And I think that’s a good thing.

Has making the film been a mourning process for you?

Lina Scheynius: I remember leaving his flat when we were done and David saying “I think he is going to survive.” But then he died. And one of my first thoughts was that we need to finish the film now! I was a little manic in the editing process. It was all I could do and think about. I went straight into work mode, and didn’t take time to be sad or feel anything. It took weeks before it hit me that someone important in my life was forever gone and I could cry about it.

For people who never met Jonathan, what do you hope they get from seeing the film?

David Sauvage: Jonathan turned death into a performance. He imbued it with beauty and irony. But underneath that beauty and irony, there’s the sense that it’s just death. It doesn’t have to be a big deal.

Lina Scheynius: I want to introduce people to someone whose work I love.

What did he teach you?

David Sauvage: That there are no limits to entertainment. Death is the ultimate reality show.

Lina Scheynius: That there can be many sides to dying of cancer, even positive ones. It doesn’t have to be a 100% dark experience.