Jersey Festival of Words, Day One: Sensory Perception

It’s the third year of Jersey Festival of Words and the third time I’ve been invited. This year I’m delighted at the broadening of the program which is more inclusive and representative than in previous years. Just after I finish writing this, I’m going to see national treasure Clare Balding do an event for 500 school children. On Saturday, I’m chairing a panel which includes dystopian thriller writer Felicia Yap, which is followed by an event with trans woman, Rhyannon Styles. On Sunday, the romantic comedy author Ayisha Malik is here.

My time at this year’s festival begins with a panel event focused on books where the protagonist/the writer has difficulty communicating. The panel consists of Penny Joelson, author of YA thriller I Have No Secrets; Vanessa Potter, author of the non-fiction book Patient H69: The Story of My Second Sight, and Jem Lester, author of the novel Shtum. The panel’s chaired by broadcaster Sara Palmer.

I’ll briefly mention Lester because, as you know, I don’t cover books by male writers. Shtum is a novel about ten-year-old Jonah who’s profoundly autistic and doesn’t speak. While Lester says the father isn’t based on him, the son is based on his own child. I love his reading and what he has to say so much that I buy the book.

Joelson’s novel tells the story of Jemma, a 14-year-old with cerebral palsy who is unable to move or communicate. She is told the identity of a murderer but is unable to tell anyone else. In keeping with the theme of the panel, Joelson reads from two sections of the book which highlight what daily life is like for Jemma and the frustrations when a new carer assumes she isn’t intelligent because she can’t communicate.

Palmer asks how Joelson ensured Jemma’s voice in the novel was authentic. Joelson explains that she worked with children with disabilities although not specifically with cerebral palsy. She got feedback on her manuscript from people with cerebral palsy, people who communicate using alternative means, and from families of people with cerebral palsy. She says the feedback suggested that it did reflect the experience of people with similar difficulties to Jemma.

An audience member asks about the cover and she says she really likes it, it’s a striking image. [I agree, it’s great.] The same person asks if there’s anything that was left out of the book she really wanted to include. Joelson says that there was so much editing, she’d had enough by the end so hadn’t really considered it!

When asked what impact she hopes the novel will have, Joelsen says that she hopes it will help the carers who work with people with communication difficulties to understand their patients better. She also talks about an entire industry based around communication technology she didn’t know existed and hopes more people will discover it. There’s research and technology that desperately needs more funding and she hopes someone will come forward to help.

Potter’s book tells her own story of the day she woke up in October 2012 to discover that her sight had begun to blur and there was a numbness in the middle finger of her right hand. The numbness began to spread, her vision deteriorated and in three days she was blind and paralysed with no idea why. As a television producer used to being in control, she began to record a diary to document her experiences. The book is based on the recordings, the blog she began to write as her sight returned, and interactions with Cambridge scientists who tried to help her understand what had happened to her. She says, ‘If it was going to take something away from me – it wiped out my career – it was going to give me something back’. Her vision returned in layers which she describes as a ‘misty fog’ moving to lines which appeared to be moving around to contrasts to colours. She describes it as ‘like having David Hockney inside your head sketching things back in’. She experienced synaesthesia, describing the colour blue as fizzing and spitting.

Palmer asks about the use of humour in dark times and Potter tells of the stories that were told, retold and expanded during the sixteen days she spent in the hospital. They were needed in the middle of a desperate situation. She goes on to say that the situation she was facing when she returned home meant that roles within the family were reversed and her daughter became her carer. Her children pushed her though. Potter was walking with a stick and if she put it down, they would steal it to force her to walk unaided. Her daughter also made Potter feed her, in order to use her muscles in her hand to grip the cutlery. ‘They were little sods!’

Unusually, Potter designed her own book cover which is based on the Snellen eye chart. She came up with it after spending a lot of time squinting at the bottom letters. In terms of what was left out of the book, she says 90% of what happened isn’t in it and a lot of the science was left out.

She had a lot of dealings with the NHS and says that documenting and writing about her experience has been useful for rehab and neurological specialists as the condition she had affects 0.0004% of people. ‘The NHS was amazing but they were scratching their heads.’

An audience member asks if she misses anything about the experience and she says the acquired synaesthesia. She says the exploding blues were ‘the most incredible, frightening, curious experience. So unique and very much mine’.

The panel was so fascinating that I kept forgetting to take notes and I bought all three writers’ books after the event (which I very rarely do).

The second event of the evening, I was much more sceptical about. Prior to it, all I knew about Deliciously Ella came from her association with the clean eating movement which I think is joyless, dangerous bullshit (and I’ve been vegetarian for almost twenty-five years).

Ella describes her success as ‘an amazing accident’. She had no interest in cooking and was ‘a complete sugar monster’. However, at the end of her second year of university she was diagnosed with a condition which meant she was unable to control her heart rate. This led to problems with her digestion, chronic fatigue and her immune system. Bedbound while her university friends were out enjoying themselves, she began to take some responsibility for herself starting with reading the stories of others online who’d successfully gained some control over their health by changing their diet. [Now, this I do have time for: my best friend’s husband has Crohn’s Disease and changing his diet has made huge improvements to his life. However, as someone who can eat what they choose – lucky me – his diet looks utterly joyless to me and not something you would choose out of anything other than necessity.] Ella started cooking as a hobby, thinking she had nothing to lose and it might help her both physically and mentally. In early 2012 a friend suggested she set up a blog. In 2013, she opened an Instagram account. She replied to everyone who commented and built a community which has translated into a business.

‘I wanted to turn a negative into a positive.’ She wanted to build something useful with a social conscience and says the community element is the most important part. She still personally replies to comments and emails.

Paul Bisson, who’s chairing the event, asks whether the blog had a definite voice from the start. Ella says that English was her worst subject and that she achieved a U in her first piece of GCSE coursework, which her brother then rewrote for her and achieved an A. However, she loved art and thinks this translated to the way she communicates through Instagram. She says she brought herself completely to it. Her mum commented on how often she uses the word ‘awesome’ and the number of exclamation marks. She says her style was very colloquial and she overused superlatives. She describes it as a ‘very open and transparent brand’.

Bisson asks about the BBC documentary she took part in and her association with the clean eating movement. Ella says she wants to be honest. ‘I believe in food, I believe in the power of it.’ She goes on to say that nothing in life should be that conflicted and that we need to elevate broccoli, cauliflower, lentils but not at the expense of pizza and so on. ‘We’ve got to make broccoli cool.’ Bisson says that vegetables are her passion and she replies, ‘How sad does that sound?’ She says there’s a stigma related to healthy eating which is linked to diets and calories and bland food. She says she wants to move us ‘totally away from that rabbit food scenario’ to delicious food presented in an interesting and exciting way. ‘If we’re ever going to get people eating fruit and vegetables we need to make it part of our lives.’

Ella discusses the style of her cookbooks saying they describe and celebrate ingredients and flavours. She makes them as accessible and friendly as possible, avoiding a sense of ‘If you don’t do it like this, you are doing it wrong’. She repeatedly mentions that no one has to commit to this way of eating full time. ‘Take, adapt and include in your life. Dip in and out.’

I leave without being won over but agreeing with more than I thought I would. I do think we should eat a balanced diet and that eating one should be accessible to everyone. I do think making vegetables tasty is relatively easy and we should do more to make them delicious and interesting. However, you’re not going to find me rejecting processed foods in their entirety: coconut oil for butter? Only if it’s really going to make a difference to your health.

I Have No Secrets – Penny Joelson

Patient H69 – Victoria Potter

Deliciously Ella with Friends – Ella Mills

4 thoughts on “Jersey Festival of Words, Day One: Sensory Perception

  1. I’m really interested in Patient H69; I know her publisher has submitted it for the Wellcome Prize, so I hope I’ll have a chance to read it in advance of that shortlist.

    You’ve experienced a great variety of books already!

    • I was thinking about exactly the same prize as I was listening to Potter’s story. I’m really looking forward to reading the book.

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