in bed with Joan Didion

Chronic migraine, creative routine and how I want my body to feel

girlboss routine

I am lying in bed with Joan Didion; the curtains are drawn, the room is dark and it still feels like the warmest room in the world. On either side of the bed is a small table with silhouettes of various objects lying on it; opened paracetamol packets, cold compression masks, empty glasses of water and an even emptier plate. We are both turned away from each other, pressing ourselves against the soft pillow to alleviate the pressure coming from the inside of our heads. We can’t sleep, we barely talk and all we want is for this migraine to go away.

I have had chronic migraine since I was about 11; after multiple doctors visits and over a decade later, I probably spend around half of my week, every week with a squeezing pain in my head. I’ve been on and off medications which now have contributed, through overuse, to what feels like a worsened condition. At times, it makes me feel as though I’ve failed my body.

Chronic illness is not uncommon. However, it feels as though it is not commonly spoken about. Even now, with a rise in long-covid, a chronic illness in itself, the notion of these illnesses is rarely spoken about, especially migraine. Even I doubt whether I have it or whether I just bring it on myself; there are things I can do for myself to help deter it but at times, it is inevitable. It’s how my body is made, and how parts of it were passed down from my grandma who only stopped having migraines in her late 70s and my mum now; it’s not their fault, it’s not mine either. The notion of it being uncommonly spoken about is because it is mostly invisible.

I first read Joan Didion’s essay In Bed after a recommendation from my partner Sadie. Didion describes the experience of migraine accurately, concisely and personally; even decades later with advancements in treatment and prevention, there are still common themes that I find extremely relatable. Although migraines are passed down through generations, ‘no one knows precisely what it is that is inherited’. It is ambiguous and difficult to avoid, creating the assumption then that any uncertainty is automatically unsafe. If I have a pint with my dinner, will I get a migraine? If I go to bed at 11pm instead of 10pm, will I get a migraine? Etc. etc.

You become hyper focused on your body, transforming it into an unsafe thing, something out of your control, when, in reality just because things are out of your control doesn’t make them unsafe. At times I have been able to go a week without any pain whilst others I have had a constant ache for two weeks on a fluctuating basis. I have had it for so long that I try to move with it, instead of fighting it but during times when they are so constant, it becomes a drag to the point where you feel divorced from your own body, haunting your own bones and muscles. My symptoms have changed over time too; I used to work as a glass collector in a pub when I was 16. If I went in with a migraine, I would often drop glasses, bump into people and be vaguely unaware of my surroundings all for £3.87 an hour. I still work in a pub but when I have a migraine, I don’t drop glasses; instead I feel more sick, more depressed than I used to and become more irritable with others. It seems to grow with me.

Routine is a cornerstone to both migraine prevention and cause; it just depends on what your routine is. Thinking about routines that work and those that don’t feels particularly notable scrolling through Instagram reels; the repeated narrative that social media reflects a ‘false’ life is quietened when you see how much some people are able to supposedly achieve within 24 hours. Waking up at 5am, working out, stretching in yoga, meditating, journaling are all completed before I wake up myself. The feeling that you are failing your body is only exacerbated by this and so I have tried most, if not all of these ‘millionaire mindset’ routines but these have mainly been accommodated by also taking prescribed painkillers such as triptans. Doing them all is overkill and the stress of staying disciplined to an extreme routine whilst dealing with a chronic illness only seemed to exacerbate it’s symptoms.

Whilst doomscrolling, I have also come across a page called @one.perfect.frame dedicated to sharing the art of smear frames. Smear frames are used in animation to ‘simulate motion blur’ and when focused on, look better than either side of the motion they are trying to convey; in giving characters extra arms, legs and eyes, they also offer a sense of the in-between. Blurred lines become an unfixed state in the body; not knowing which way it is going, where it is going or when it is going, their fluctuation feel like an accurate depiction of migraine.

Smear frame from an anonymous Looney Toons episode

Cartoon characters are drawn so expressively, as though they are turned inside out and everything both internally and externally is revealed. Everything that was once invisible becomes visible, as though it is pushing out of the body; when I’m ‘ill’, my eyes get droopy and teary, my face appears sluggish and movements become a lot slower and quieter than usual. When faced with a migraine, I lose all my animation and become stuck in one frame, unable to smear into the next. I want to feel that changing, that motion.

In lieu of the creative routine, Didion talks about the ‘migraine personality’ that was apparent for doctors in the 60s and could be considered now too:

… that personality tends to be ambitious, inward, intolerant of error, rather rigidly organised, perfectionist …

These do not feel like personalities that produce migraines but personalities that are instead produced from having migraines. When I wake up with a pain in the side of my head, my nose feeling as though it is being pinched from the inside, I get up and I try anything to get rid of it. I eat as fast as I can, stretch as fast as I can, exercise as fast as I can and drink gallons of water (you guessed it) as fast as I can. Everything is at speed because I feel as though I have to get through a million things as fast as possible in order to get rid of the migraine as a fast as possible, catching it off guard before it can grow anymore. It is a feeling of uncertainty where I don’t know how painful it will get, how long it will go on for, what symptoms I’m going to get. It is predictable in its unpredictability and I feel as though, even with a slight pain in my head, the day is ‘ruined’ because of this which I suppose is being a perfectionist.

Some writers, lesser known for migraine because of it’s apparent invisibility, are now championed in articles for their symptoms; Lewis Carroll’s Alice’s Adventures in Wonderland has been suggested as being influenced by his experience of migraines, paralleling his symptoms of aura with the psychedelic visions found in his work. It has actually lead to research into migraines symptoms that centres around these visions Alice experienced in the book. Now known as ‘Alice in Wonderland syndrome’, the research was shared at the 2020 Migraine World Summit by author Andrew Levy:

The most interesting example, and possibly the most mysterious example, is Lewis Carroll, the author of Alice in Wonderland, of course, who left all sorts of symptoms described in his journals, who had drawings which suggested that sometimes he would only see about half of what he was seeing in front of him the way you might with a migraine aura — and for whom Alice in Wonderland, for anyone who reads it and has a migraine condition, is just checking all these boxes in terms of symptoms rendered into a kind of an amazing, symbolic world. ...

At the start of Alice in Wonderland, she's got the little cake that says, 'Eat me,' and the little bottle that says, 'Drink me.' And she partakes of both and she becomes super big and then she becomes super small, or perhaps the other way around. In any case, people have that. They're actually things that people have, that kind of neurological disruption, where they suddenly either feel like they're looking down on everything or that they're looking up at everything."

At times, art and its creator can be used as a means of real research, analysing the connection between the two to make the invisibility of people’s lives into something visible. This could be people’s feelings of isolation, their individual experiences or the way they interact with the world being the same as a character in a book. This acknowledgement of the individual is as important as real medical research such as these links drawn from Alice’s Adventures in Wonderland to discover ‘Alice in Wonderland Syndrome’. However, it feels as though art, as I mentioned in my article last week, can inaccurately acknowledge the individual, reducing the context of people’s lives as a way of charging the value of their work, contextualising a Monet painting of water lilies into a glorification of the painter’s migraines. It is less about championing it as a quality that benefits the creative more than not having it and more about realising it for what it is; a migraine. In ‘championing’ it, we avoid the accuracy that Didion describes in ‘In Bed’ and end up on the same extremes of demonisation that she shares from her doctor:

"You don't look like a migraine personality," a doctor once said to me. "Your hair's messy. But I suppose you're a compulsive housekeeper." Actually my house is kept even more negligently than my hair …

It’s glorification becomes a branded part of a person, something that you should be grateful for as it shape shifts into an accessory for creativity; with that in mind, this is the first time I have ever made work about migraines and in doing so, I hope for it to be the last but we’ll see. I’m sure Lewis Carroll didn’t see his migraines as an accessory to his novel, he was probably just more bothered about how he was going to get rid of the pain. I wonder if they had any millionaire mindset routines in the 1800s that could help him get rid of them?

A couple of years ago, I watched the Joan Didion documentary The Center will not hold on Netflix before I read of any of her work. Like going to a concert before you’ve listened to the band, it only enhances experiencing their work after. In the film, her routine is described; waking up late, coming down wearing sunglasses and silently taking a coke bottle from the fridge before going off to write for the day. She would smoke, which isn’t recommended for people with migraines but then again none of these things I have just mentioned are recommended for people with migraines. Some websites suggest caffeine, others advise against. Some websites suggest sleeping more, others advise against. In that case, what is recommended? What do you do when something lives inside of you but is also out of your control?

It seems you learn to live with it, just like the rest of your body; to know parts of yourself through experimentation, experiencing things that work and those that don’t. It speeds up a process of self-discovery and introspection because you feel as though this is the only true prevention. Routines become unpredictable in an interesting way rather than a doomed one. I couldn’t say what works for you because a lot of the time, I barely know what works for me.

Drink the Coca Cola, smoke the cigarettes, wake up late with sunglasses on and lie in bed all day, it’s going to happen anyway.