My migraine and vertigo became a book about love and pain

2010: Lydia Ruffles was 29 and living in Spain when the pain started

Lydia Ruffles: once you’ve experienced pain you can’t forget others are still living with it. It forces the mind open and empathy rushes in

Lydia Ruffles: once you’ve experienced pain you can’t forget others are still living with it. It forces the mind open and empathy rushes in

 

Writers are often asked where we get our ideas from. The truth is that as soon as I switched off the moral ambivalence that many of us develop to cope with life, the universe became abundant with suggestions. Of course something had to happen to activate the switch.

I’m not sure I can pull off calling myself “woke” but my mind is certainly open to things that it wasn’t before I started creative writing – and the catalyst for this was pain.

Throwback to summer 2010. I was 29 and living in Spain having just got back from an amazing couple of months travelling in South America. I was dizzy. Like “can’t stand up, I’m sliding off the planet” dizzy. And my head just didn’t feel right. I remember lying on the sofa texting friends back home saying I knew something was wrong with my brain. Then the head pain started. (I say head pain rather than headache because calling it a headache is like calling a typhoon a shower.) It carpooled with all manner of strange symptoms – jumbled speech, hallucinations, dissociation and derealisation, memory loss, a complicated relationship with light and colour, a pathological hatred of some noises and humid weather, and brain fog worse than I could ever imagine.

I was looking at some paintings when I started to get a migraine. Pain became colour, certain sounds translated themselves into shapes, light began to taste of smoke

Because that’s the thing about invisible illness: it is concrete and sometimes all-consuming in ourselves, yet nebulous and easy to dismiss or disbelieve in others. Writing is a way of closing the gap between our own pain and others’ perception of it. That’s what makes writing and reading stories about connection rather than escape.

Fast forward five years from 2010 to late 2015 – via a surreal trip to Greece where I felt like I was perpetually being tossed about by the sea, the abandonment of a job that I loved (twice), another year in Spain, countless visits to GPs and medical tests by specialists, a couple of misdiagnoses, and years spent on unhelpful medication – when I was finally diagnosed with vestibular migraine and chronic visual vertigo, triggered by a virus I’d caught in South America.

Would I change things if I could? They mean would I un-travel to South America, un-contract the virus that triggered my illness, and, in doing so, un-write my book
Would I change things if I could? They mean would I un-travel to South America, un-contract the virus that triggered my illness, and, in doing so, un-write my book

The relief of that diagnosis was total. At this point, I had barely left my flat for months and was doing my best to isolate myself from everyone. It unlocked something and three months later I had a first draft of my debut novel The Taste of Blue Light.

Somewhere in the middle of those five wilderness years, a seed was planted when the sensory confusion my illness caused took a new turn into chaos. I was looking at some paintings (Rothko’s Seagram Murals – big, bold canvases rich with oppressive reds and darks) when I started to get a migraine. Pain became colour, certain sounds translated themselves into shapes, light began to taste of smoke. (I now know that this was caused by a condition called synaesthesia, which causes senses to overlap and is experienced by some people with migraine.) This event became the basis for a pivotal scene in my book: a story told by a 17-year-old young woman called Lux Langley whose life unravels after she suffers a blackout during her summer internship at an art gallery.

The first line – I will find the old Lux and when I do I will climb back inside her and sew myself into her skin so I never get lost again – was born out of a five-year search to find out what was wrong with me, to get back to my old self. Spoiler alert: although I mined my own experiences, the cause of Lux’s blackout is something else entirely.

Another thing about pain is that, although the body is built to forget some types of it, once you’ve experienced it you can’t forget others are still living with it. It forces the mind open and empathy rushes in. You also don’t forget the kindness of family, friends, colleagues, doctors, strangers. This allowed me to write a book about pain that has love at its core – familial love, friendship, first romantic love, self-love, and love of art.

Something else writers get asked is whether they always wanted to be one. Several teachers suggested to me that I would write a book some day but, until a couple of years ago, I’d all but forgotten their words. I was full-tilt committed to the trajectory I was on; working hard, playing harder, rattling through countries like one-night stands. There was no time for creative writing. After all, there were arbitrary targets to meet: make manager by 25, senior manager by 28, visit 50 countries by 30. I was barrelling through life with limited regard for whatever or whomever was in my way; I hope I wasn’t an unkind person but I am definitely kinder now and that is what will help me keep writing. Ideas can get in now.

So, the reductive answer to where I got the idea from my novel is that it came from looking at paintings with a migraine. The truth of its genesis is convoluted, fragmented and, like pain and love, harder to articulate.

People have started asking me a new question now: would I change things if I could? They mean would I un-travel to South America, un-contract the virus that triggered my illness, and, in doing so, un-write my book. I think my answer disappoints them. Though my condition is just about manageable there isn’t a cure yet so if I could magic my health back I would. But, in the absence of a time machine, this is a happy alternative.
The Taste of Blue Light by Lydia Ruffles is published in hardback by Hachette Ireland, priced €14, and will be reviewed in The Ireish Times on Saturday

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