‘This is an invisible epidemic. I wrote my book in the hope of making it more visible. I wanted you to feel what I feel.
I’m 25 and I never got to have a youth. It passed by without me, beyond my bedroom window. Instead, when puberty began, I became possessed – as though by a demon in some medieval morality play – by pain. A constant, meaningless, incurable pain at the core of my muscles, that weakened me into a fog without memories or focus – a pain that confined me to a parallel word, the world of the sick – where being whipped until my blood spilled out would feel like a pleasure in comparison.
The pain, like any other kind of demon, eroded away everything of me – my identity, my resolve, my hope – until I was a vacuum with no voice. It felt like being eaten alive.
For a decade I was defenseless. Modern medicine offered no solutions, and eventually abandoned me. Like so many others in agony – with no support network, no money, no home – I fed on it as it had fed on me, and named the novel after this kind of flesh-eating: ‘Carnivore’.
People are said to have ‘battles’ with cancer. You can win, you can lose. But with my illness, you cannot win. The fight lasts until you are too weary even to concede defeat. That is one of its deepest tortures – you cannot get used to it. Every day you wake to the pain as if for the first time. You are constantly waiting for an end that never comes.
My illness has been given many names: fibromyalgia, Lyme disease, myalgic encephaloyeletis (ME), and, insultingly, chronic fatigue syndrome (CFS). Around 2% of all adults have it. But we don’t know how it starts, we don’t know how it works, we don’t know how to treat it. There is no test. In a 2015 study comparing the quality of life of twenty chronic illnesses – including schizophrenia, cancer, arthritis and heart failure – ME/CFS scored the lowest by far. It is in an abyss of its own.
Getting this disease feels like being passed over by society. There’s barely any public awareness, barely any research funding. That’s why Dr Nancy Klimas, one of the world’s foremost experts in both HIV and ME/CFs, said in 2009: ‘I split my clinical time between the two illnesses, and I can tell you if I had to choose between them, I would rather have HIV.’
This is an invisible epidemic. I wrote my book in the hope of making it more visible. I wanted you to feel what I feel.
But also, I wanted to transform my horror into ecstasy. Pain gave me synesthesia, and my book was written in all its colours. I used those colours to tell a coming of age story inside a thriller – celebrating sexuality in the age of fluidity. It became a revenge tragedy that was itself a revenge – on the demon inside me. It’s a scream on behalf of anyone who’s been ill to long – and, for everyone else, it’s a warning.
Jonathan Lyon was born in 1991 in London. He studied at Oxford University, graduating in 2013 with the Gibbs Prize. He moved to Berlin in the same year. He has had a chronic illness for over a decade. He is a self-made demon.
Carnivore is his debut novel.
Connect with Jonathan on Instagram here
24th August 2017
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