Synaesthesia: The brain condition I didn’t know I had

My name is Katie and I have a brain condition called synaesthesia. It’s incurable, it’s inescapable and it affected me every day for nineteen years before I even knew I had it.

It sounds crazy, doesn’t it, to think I had a brain condition I knew nothing about. Almost as crazy as it sounds to my friends when I tell them that Wednesday is green, and that their name is yellow, purple or blue. It turns out not everyone sees letters and numbers in colour. Apparently most people just see them as black, or – even more incomprehensibly to me – nothing at all.

But apparently I’m the unusual one. Apparently I’m one of the 4% of the population who see the world in a different way to most through a mixing up of the senses.

And apparently, it’s genetic.

Dinner times at home have always been a hilarious battlefield. Regularly my father, my sisters and I erupt into heated discussions as to whether the letter A is red, green or orange. “You’re sooo wrong,” my sister will yell across the table. “A is most definitely green.” “No, it’s 100% orange,” the other will argue back. No one backs down; each of us convinced our way of seeing the world is the right one, and that everyone else is mad. The next week, we’ll try again.

My mother, meanwhile, is convinced she’s the victim of some kind of family joke. How can we be so sure that seven is green? she asks. It’s just a number. She laughs at our assertiveness, at our determination that our colour is the right one. And we laugh back, at the unimaginable thought of the bland, colourless world our poor mother must live in.

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It was just two years ago that I discovered there was a word for our madness. Sitting in the university library, a friend began to explain the latest topic she and her psychology friends were revising: a neurological condition in which stimulation of one sense leads to automatic, involuntary experiences in a second sense. Its most common form, she went on, involves an association of letters with colour.

“I have that!” I remarked – and in that moment everything changed.

Suddenly I realised there was a scientific explanation behind my obsessive use of colour in revision notes, my OCD with presentation, my love of Fridays and my hatred of Thursdays. After digging deeper into the behavioural traits of synaesthetes, I realised it might even be the explanation behind other, non-colour-related personality traits of mine. Like my love of words, my recurring nightmare of falling into a swirl of strange colours and textures, and my deep-rooted, unexplainable anger when a loud car growls behind me.

As my interest in my own form of the condition deepened, so too did my fascination in discovering its different forms. Six months later and I’m on the phone to James Wannerton, president of the UK Synaesthesia Association (it turns out there are annual conferences about this thing) – a man famous for his ability to TASTE words. To me, A might look red, but to James it tastes of semolina. Now there’s an intrusive form if ever there was one.

“It’s like eating all day,” he tells me. “Even when I dream”.

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This condition is becoming more fascinating by the day. I’m hooked.

James suggests I join the ‘I’m not a freak, I’m a synaesthete’ Facebook group (a name so apt I considered it as a headline) – and boy am I glad I did. On it I find a thousand people like me, eager to tell their stories and compare notes of awkward encounters, funny conversations and everyday experiences. It’s a treasure-trove of information, articles, latest research, and all 28 of the UK’s synaesthesia researchers interacting with ordinary synaesthetes from around the world.

And my discovery of the group is just the beginning. By now it’s March-time, and my masters tutor demands I pick a topic for my final project of the year. An easy decision. Never have I been so excited to know more about a subject. Never has a topic been so close to my heart. Over the next few months I speak to dozens of synaesthetes from around the world – an artist from New York who paints what she hears, a student from Glasgow who gets blinded by club music, a lady in Lisbon who feels other people’s pain.

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In one of my more surreal encounters, I find myself in pyjamas on Skype to a professor in Washington who once lost his synaesthesia from the trauma of an earthquake.

But it wasn’t just those with the condition I wanted to speak to. It turns out there are 28 researchers in the UK who study synaesthesia for a living. I meet Natalie Bowling at Goldsmiths University and watch her experiments into a rare form of synaesthesia known as mirror-touch. I meet Jamie Ward, a psychologist at Sussex University, who is conducting the first piece of research into synaesthesia amongst the elderly. I even meet horticulturalist Sarah Wilson, whose synaesthesia garden is to be displayed at the Hampton Court Flower Show.

Then the general election arrives, and that’s when things get really exciting. James tells me he’s working with an artist in Scotland to create posters showing what each of the political parties taste like. David Cameron tastes of hard toffee, macaroons and blue ink, apparently. Is this taking it too far, I ask myself. Will the papers think I’m bonkers when I ring up to pitch them a story about Plaid Cymru tasting of cucumber? Bravely, and somewhat deludedly, I decide to give it a try.

The next day, election day, and my Guardian article has been shared 5,451 times on social media. ‘Articles like this make me proud I work for the Guardian’, one journalist Tweeted. ‘Best story I’ve seen on #ElectionDay so far’, another Twitter user wrote. I’m astounded. Of course, there were critics, too. ‘Possibly the strangest election article ever’, was a widely shared view on social media. But whether people thought it ‘weird’ or ‘amazing’, I didn’t care. What mattered was that people were talking about synaesthesia. And on the same day that three major party leaders stepped down, and the Tories defied polls and achieved the ‘impossible’ in winning an overall majority.

It was a historical day – and for me, for different reasons to most.

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A week later a friend in the pub tells me about this fascinating article he read on Election Day, not realising it was mine. I was amazed. To how many people had I introduced the topic of Synaesthesia, I began to wonder. To how many readers had my article been the first time the word had crossed their lips? And how many of those readers had gone on to the pub to talk about it with their friends?

I was determined to join James in his mission of raising awareness of the condition. After all, how many kids like James were out there riding the tube, overwhelmed by tastes, sounds, smells or colours, yet misunderstood by the world around them? How many parents were out there, unknowing their child had a condition that hindered their concentration in school? 4% of the population. This thing was big. Very big. And I had only just lifted the lid…

Fast-forward four months and, aside from a feature in The Tab, I’ve achieved disappointedly little in my perhaps overly-ambitious mission to educate the remaining 96%. It turns out synaesthesia isn’t a topic that’s all-too familiar or important to your regular, sleep-deprived news editor. Begin to explain the gist of the condition and most of the time you realise the other and of the phone line has gone dead.

But it’s not me I feel sorry for. It’s only been two years since I heard the word, and already it’s brought me a hell of a lot more than just a good mark in my final project. I’ve met ordinary people with extraordinary experiences, I’ve witnessed cutting-edge research, and above all, I’ve learnt a whole lot about myself in the process.

It’s to the other 96% I feel pity. After all, as an 8-year-old synaesthete on Facebook so neatly put it, everyone else is ‘colour-deaf’. Most of them just don’t know it yet.

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