To give you a taste of why I started the book and what it’s all about, I thought I would publish the introduction online for all to see. Here goes…
Never did I think I would actually need to re-write my dissertation for an introduction of a book. So to start off with: wow, this is crazy! Thank you to every single backer of my kickstarter campaign, who has made this dream a reality, and to every storyteller (including the ones who aren’t in the 100 stories). Thank you for taking the time to write out your story and share it with all the eyes that will see this book.
For those of you who don’t know, this project started towards the end of my Graphic Communication Design degree at Central Saint Martins in January 2019. But these ideas started before then, so let me explain my story.
After studying A-level Fine Art, Photography and Textiles, I went on to an Art Foundation at Central Saint Martins. I ticked the wrong box on the application form so ended up on the Graphic Design pathway (a happy mistake). It turned out that Graphic Design was perfect for me – it mixed all the things I love doing: image making and storytelling.
At the time, I was having panic attacks in the night after seeing my father have epileptic fits – my father has two cancerous brain tumours which cause his epilepsy.
So for one of the modules I created a film about epilepsy, I tried to tackle the scary monster head on and visualise it through my art. It turned out that the decision to scrutinise was powerful and that it was better for my mental health than all six of my previous counsellors. It was cathartic and self-healing. Then a few years later (by this time studying on the degree course at Saint Martins), I found myself creating a similar animation, but about ADHD. I was diagnosed with Attention Deficit Hyperactive Disorder a few years previously and always found it fascinating that when I told people about it, they wouldn’t believe me. The majority said, ‘But you’re not hyperactive’. By contrast, my boyfriend, Bernard, had been told his whole life by friends, ‘Oh you are so ADHD, you can’t sit still’ – but he was not diagnosed until recently. So I animated this difference and, to my amazement, it helped a few people.
That’s when it clicked; what if, through my art, I could break down stigmas by telling stories in an honest way? A few weeks later I decided to base my final major project on the ‘Big-C’.
Creating 100 Stories of Cancer
My initial research was based on cancer stories in the public eye. I thought that many adverts/films/articles were not presented in an honest way. So my aim was to tell cancer stories and spark open discussion. Then I needed my own stories to tell.
I reached out to a family friend, Vix (story number 100). In our initial interview, Vix told me about the charity Cancer On Board. And what a great idea the charity is: a small item, a badge, that encourages open conversation amongst commuters. Wearers are often approached to ask why they wear it and what it means. This was especially the case for Vix, because she never lost her hair and still wore badass heels to work in central London in between her chemotherapy cycles. A few weeks later, I met James, the founder of Cancer On Board and he told me his story. I asked if I could use his badge and symbol as part of my project.
I created social media accounts (originally @TheCancerChapter) and James helped me spread the word to collect stories and make portraits. James was my main ally – he knew the power of #CancerTwitter (as he likes to call it) and I didn’t. So to my surprise, within a month or so, I had conducted 15 face-to-face interviews, emailed over 200 peoples and made 123 portraits.
I was amazed by the sheer number of stories and moved by the trust people showed in talking to me. They had no idea what I was going to create.
From the filmed interviews, I had 5 hours 38 minutes and 17 seconds of footage… way too much. I spent days listening back to each interview and trying to make a storyline out of the dialogue. The topics covered included: people who ‘get it’, people who don’t get it, children’s reactions, community, diagnosis, doctors’ language, emotions, normalising the conversation, open conversation, remission, social media, side-effects and preconceptions. We also discussed the struggle to arrive at a clear picture of cancer because it comes in so many different forms (over 200), so, for many people, the all important question is: ‘What does cancer look like?’.
As you can see, it was impossible to make this into a single storyline and then animate it (it would have to be the length of a blockbuster film). So I decided instead to animate just one story: Martino Sclavi. This was the story that resonated with my own the most. Martino is a film director and, in 2011, was diagnosed with grade four glioblastoma – an aggressive form of brain tumour. He underwent surgery immediately in LA, soon after the diagnosis and then had a second operation back home in Rome six months later. The second surgery initially left him unable to speak, read or write. Martino relearnt his three languages and started to use technology to read text out for him. Before I met him, I found it hard to believe he couldn’t actually read. But when I went to visit him, he produced eight packets of tea and asked me to identify which of them was English Breakfast.
He is still unable to read but managed to write an entire book about his story through touch typing. What is remarkable is that his muscle memory remembered how to touch type. His book, The Finch In My Brain, explains his life before and after being diagnosed with a brain tumour. My favourite part is where he explains that, when he looked at the hole in his brain, he saw a bird, a finch, and from then onwards, he created a relationship with the bird. I cannot recommend his book enough (and if you are a Russell Brand fan, you might be interested in reading about Martino’s friendship with him).
I am extremely grateful to Piers Townley at The Brain Tumour Charity for introducing me to Martino. And to Martino, who welcomed me into his home for an interview and has continued to inspire my work ever since. He was the first person I have met who has similar mannerisms to my father. These things include subtle movements and an emphasis on certain words, things that others might not notice. However for me, this was quite bizarre and touching.
Now, skipping forward a few months, I had finished the book and the animation (which included hand painting roughly 300 frames) and it was displayed at the Central Saint Martins degree show. All the storytellers were invited to the show and I was delighted to see about twenty of them throughout the week. A lot of them asked when they would be able to read all the stories and one lady even sat down and read 52 stories in one go! So I knew I wanted to continue with the project and here we are.
This is how I ended up with a 452 page book. A book, which I hope, can help many people. And maybe it actually encloses 101 stories – because one of them is mine.