Through the pain and fog of migraine, I’ve felt my mind stretch and shrink, widen and change. Each attack collapses and rebuilds my sense of self. I want to document all of that.
Hallucinating dogs, predicting storms, dissociating. Trying to pierce my skull with a corkscrew. Spending 500 days in bed and hundreds more nights awake. Pills, bloods, balance rehab. Writing, painting, creating.
These are some of the things that migraine and I have done together in the seven-and-a-half years that we’ve known each other.
Before I was diagnosed with vestibular migraine in 2015, I didn’t realise that it is so much more than ‘just a headache’. Migraine is the third most common disease in the world and affects one in seven people, but it’s also underfunded and often misunderstood.
This is a complex condition with a wide range of symptoms, often – but not always – including severe head pain. At first, I resisted the migraine diagnosis because not being able to stand up or think straight, combined with sensory chaos, were bigger problems to me than the head pain bit. I had to expand what I thought I knew about migraine, and it’s these other aspects that most find their way into the things that I make.
There’s no test for diagnosing migraine, so it’s a case of ruling out other causes. My situation was complicated by having caught a virus in South America, and getting diagnosed was a protracted process lasting five years.
I saw five GPs, three neurologists, two ear, nose and throat specialists, a rheumatologist and physiotherapists. I also had physical examinations, MRI scans, X-rays, electrocardiograms, countless blood tests, and I ended up in A&E more than once.
Among the possible diagnoses mentioned over the years were a brain bleed, multiple sclerosis, post viral fatigue syndrome, post-traumatic stress disorder, and labyrinthitis.
Messages from my migraine mind
In the five or six months before I was diagnosed, I barely left my flat. The pain was near-constant. Thinking felt like grinding gears, and reading or having a linear conversation were all but impossible. Many times the vertigo that comes with the type of migraine I have was so violent that I couldn’t stand up.
It was isolating and exhausting but the relief of finally naming the beast and getting access to the right treatment was total.
During this time, my migraine mind made things and kept them secret from me until the evidence surfaced: surreal impressions on Post-it notes found down the side of the bed, forgotten geometric fragments, doodles of red-shot brains sunken in baths.
Phrases and images played on loop while my brain was awake and asleep and in between, spilling out onto scraps of paper, tissues and skin.
There was hope in these little messages. They told me I was still in there, trying to get out.
In addition to the things that I don’t remember making, there are those that I now create to close the gap between my experience and others’ understanding of it. Paintings, photos – mostly to bring balance to the ‘headclutcher’ images that so often accompany words about migraine (and, indeed, mental health).
Once, in between migraines and MRIs, a whole novel came out.
Through the sparkling shadows
Somewhere in the brain fog and the memory loss that can carpool with better-known symptoms such as head pain and nausea, I started writing. Three months later, I had the first draft of my debut book ‘The Taste of Blue Light’ – a story told by a 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” – captures how it feels to be separated from yourself by something you can’t control.
The first flicker of inspiration came from looking at some paintings – Rothko’s 'Seagram’ murals – while a migraine was brewing. An attack can be preceded by other neurological symptoms, most often visual disturbances known as aura. Part of the aura I get is called scintillating scotoma, which I call the glimmers or sparkling shadows. The easiest way to describe it is to say it’s like trying to look at a blind spot through heatwaves. It comes with an otherworldly feeling, as if the blind spot might be a portal to somewhere else.
While I was looking through the sparkling shadows to Rothko’s dark red paintings, I had my first brush with synaesthesia – a condition which causes senses to overlap and can be yet another symptom of migraine. The red paint started to vibrate. I could taste it, gritty and metallic. Sounds from next door translated themselves into shapes and even the dimmest light tasted of smoke. This experience became a pivotal scene in ‘The Taste of Blue Light’:
The darks and reds swim as my head fills with blood. The paintings morph into faceless oblong bodies turning inside out, displaying their crimson hearts and bulging arteries to the world. My blood runs hard through my veins… The painting leaks off the edges of the huge canvas in front of me, onto and down the walls, dripping its oily blood on to the floor and down into the metal grates.
While I was writing, I also had a brief, but significant, fixation with snowdrops. It started, as these things often do with me, when someone mentioned them during the aura phase.
These white, winter flowers are a symbol of rebirth. I kept coming back to the promise of their balmy coolness until snowdrops became an important motif in the book. This was way before I had a publication deal but they eventually ended up in the cover designs.
I later learned that galantamine, which is found in snowdrops, is also a chemical that supports brain function. A coincidence, of course, but migraine life is full of the uncanny.
Although what happens to my character Lux is totally different to my own story, I wouldn’t have been able to create her without mining my own life. With pain comes empathy and I need the latter to write. I stitched what I found in myself together with the sparkling shadows, the smell of hospitals, the stretching of language, and made something that’s fictional but feels true to me.
But despite how much inspiration I owe to migraine, the trope that art and pain go hand in hand is one of my least favourite binaries. While studies show the wellbeing benefits of creativity, illness isn’t a choice and shouldn’t be romanticised. It’s also worth noting that The Migraine Trust says there isn’t any evidence that people with migraine are any more creative than anyone else.
For me personally, it’s difficult to divorce my creativity from my migraine. Making things helps me switch the lights back on when I’m in a dark place, while migraine has given me access to parts of myself that I didn’t have before. My aesthetic or voice, or ‘the way I do art’, is threaded with it – from the slightly askew use of language and the sense that things are not quite to be trusted, to the direct translation of experience into words and images.
Reality collapses and rebuilds
As a writer, my identity hinges on having a strong command of language and a broad vocabulary. The jumbled speech and occluded words that come with my illness frustrate me. I’m used to getting blank looks when I say, for example, “sideways holes” instead of “tunnels”, but writing has become a means of rebelling against the way migraine sometimes restricts my use of language. (I learned a new one – Spanish – for the same reason.) It’s also an outlet for my new, lateral appreciation of it.
Committing words to paper or screen is the best form I know for making the nebulous more concrete, for processing. It’s a means of communicating just how strange and awful things can be. As Joan Didion wrote in her essay ‘In Bed’: “That no one dies of migraine seems, to someone deep into an attack, an ambiguous blessing.”
I read with a different lens now, too. ‘Alice’s Adventures in Wonderland’, which is thought to have been inspired by Lewis Carroll’s migraines, is a great example. Here, art has also influenced medicine; Alice in Wonderland Syndrome is the name given to a condition that sometimes accompanies migraine. It causes changes in body image and perceptual distortion in the size or shape of other things. Alice’s predicaments are far less fantastical to me now that I’ve spent nights with migraine feeling as if I was viewing the world through the wrong end of a telescope.
Likewise, Emily Dickinson’s poetry is littered with migraine imagery. Her ‘I felt a Funeral, in my Brain’ is particularly relatable. The poem speaks of mourners carrying a coffin across the soul, a drumming, and bells ringing inside the head leaving the speaker wrecked and falling between worlds. Whether or not Dickinson suffered from migraine, it’s useful to have something ready-made to help articulate what it’s like.
While the commonality in experience is comforting, for me the link between migraine and creativity extends way beyond it. Each migraine attack collapses and rebuilds my perception of reality and my sense of self: show me a creative person who wouldn’t want to try to document that in all its horror and wonder.
About the author
Lydia Ruffles is a writer based in London. Her debut novel, ‘The Taste of Blue Light’, is out now from Hodder. Her second, ‘Colour Me In’, will be published on 9 August 2018. Lydia also writes and talks about creativity, synaesthesia, migraine and mental health for media ranging from BuzzFeed to ‘The Guardian’ and ‘Woman’s Hour’.