Book of Hours An Almanac for The Seasons of the Soul by Letty McHugh
The Darkest Part of the Night In the beginning there was a black hole. It was smaller than the head of a pin, and when I moved my eye it floated sluggishly around my field of vision, with a white comet tail following behind. Comets are notoriously bad omens. The Venerable Saint Bede wrote that they signify great calamity. Halley’s Comet is depicted in the Bayeux Tapestry blazing over Harold’s coronation, indisputable evidence that even God was picking up on Harold’s bad vibes. I didn’t need a mystic to interpret my own internal celestial events. I had seen this type of comet before. I knew exactly what it meant. I was having an MS relapse. My immune system was attacking my central nervous system. I didn’t need to panic. This had happened before. I had 3 different emergency numbers to ring. I worked through the list: they all rang out, so I left messages. No one got back to me. It was early April 2020. I wouldn’t know it for months, but all the nurses who would usually answer those emergency phones had been reassigned to COVID wards. In preparation for the coming calamity, I moved temporarily into the spare room at my parents’ house. The anomalies in my left eye merrily multiplied and it was more and more painful for me to look at the light. I had a constant throbbing headache, the nerves in the left side of my face were sporadically burning and my left knee had started moving on its own. A week in, I was sleeping for anything up to 20 hours a day, spending all my time in bed with the curtains closed. There’s something that happens when you are sick in bed alone for days on end. The world falls away. Everything gets blurry. Sleep is heavy like an anchor, pulling you down into some other place you’re fighting to get out. All you want to do is wake up, then you do wake up and it hurts and you’re frightened and all you want to do is go back to sleep but you can’t. The thing about being alone in the darkness for long stretches of time is that you are alone with yourself. With your own mind, and all the truths you’ve shoved out of sight. That’s the worst of it really
o fill the spaces in your empty head.
’s how it was for me, right in the middle of April 2020, in the t of it. It was the middle of the night, and I’d been asleep e 5pm because it hurt too much to be awake, and I’d woken back up use it hurt too much to be asleep. I was the only person in the e world awake, I couldn’t put the radio on because they kept ing about COVID death counts, and my brain wouldn’t focus on my obook, so I was alone with the truth of an incurable degenerative ess, alone with the vast indifferent universe. Stuck in this one r-ending moment, I couldn’t see past the edges of it.
dn’t want to die. I just didn’t know how I would ever survive, I faith that there would ever be anything else. And I found myself king that I could bear it if there was just something to entrate on that wasn’t my unravelling body or the unravelling d. That’s when I remembered Books of Hours - medieval prayer s with customised prayers for every hour of the day, every day of year. I remembered them vaguely from my Catholic childhood, I had eling I’d seen one on a trip to Edinburgh castle when I was 17. -remembering, half-imagining I pictured a gold-embroidered cover I hadn’t paid enough attention in RE to think of the text that t be inside.
there my mind slid sideways to Saint Aidan, or Saint Cuthbert, y Christian hermits I could never keep straight. One of them ded Lindisfarne, an isolated monastery on a tidal island in humbria, and the other decided it wasn’t isolated enough and went e an even more isolated hermit, on a more isolated island off the t of Lindisfarne.
ught they must have understood some profound truth that I didn’t have s to, to bear the isolation, to choose it, and I thought maybe it was hing to do with having faith, real proper faith. I wished I had that of faith in anything. The kind of faith that gives you forbearance. I d someone would make a Book of Hours for people like me, miscreant ts that end every sentence with a question mark. I swore to myself, to ert or Aidan, on the comets inside my closed eyes, that if I ever made the other side of this moment I would be a monk, but with art instead sus. Making this book would be my holy quest.
r that I was on the beach at Lindisfarne just as it was on the ly holidays of my childhood. It was an overcast day, I could l the sea. I was living in one of the huts made from upturned s that are used for storage in the harbour, and I was sewing the bead onto the cover of my book.
cover had an inlay in the centre, lines of embroidered text. I was so satisfied sewing that last bead on because I knew the pages of my fat beautiful book contained a profound truth. In my time living on Lindisfarne, years and years away from my bed in 2020, I had figured out the secret to living with suffering and written it down in beautiful calligraphic letters. What follows is my best attempt to make that book a reality.
Sometimes people will ask me if I believe in God, am I allowed to say I have no idea? Am I allowed to say I don’t think what I believe is important. I’m just one person, I get things wrong all the time, last week I had my cardigan inside-out for three days. When I fly, I always say Hail Marys in my head on the balance of probability if I’m going to die, I’d rather do it while saying a Hail Mary. I can’t make myself believe planes can fly.
I was six years old, I bit off half my nail. I panicked. I didn’t to die. I prayed, then nothing was wrong. A miracle. What if yone alive only gets one miracle?
ce read about a Monk who fell from Tynemouth Priory three times survived twice. I bet he wished he’d saved a miracle for that d time he hit the ground. You can imagine how much I wished I ’t wasted my miracle on a fingernail when I was diagnosed with an rable illness.
ew up Catholic. I’m still figuring out what that means to me as an t. In 1997 it meant I went to Mass on Wednesday’s with school and wondering why the Corinthians never wrote back to Saint Paul.
s diagnosed with Multiple Sclerosis in 2012 after I lost feeling y left leg for a week. I only rang NHS Direct to appease my er. They said “Can you make your own way to the hospital? We can an ambulance”, I said “I’ll just ring a taxi.” I was 20, and really taking anything seriously yet. When I was admitted and my nd had to leave me, I asked her to look up the patron saint of . I didn’t have a smart phone then. I knew the patron saint of was Lucy, a martyr who had her eyes plucked out, but I didn’t any idea about the patron saint of legs. She said, “You don’t ly believe in all that though, you don’t think it will make a erence?”. I paused and then said “Probably not but, look anyway”. Saint Servatius if you ever need to know.
got a stone on my windowsill, with three perfect holes clean ugh it. When you hold it on its side it looks like a cartoon t. I call it Ghost Rock. I picked it up on the stoney beach at isfarne when I was a teenager. It would have been Easter. Or maybe ember. Either way the wind was blowing in a direction that carried mournful cries of the seal colonies across from Outer Farne. I was ing myself a story about selkies. I was trying to remember thing someone once told me about seals being the re-incarnated s of sailors lost at sea. That’s when I found Ghost Rock, it was -comic and half-profound, exactly how I like things. So I kept it. as a talisman, half as a joke.
see what’s happening here. I’m explaining myself. This is the onal case. A woman, brought up on a diet of Catholicism and family days to the northeast coast is shut in a room for three weeks and ures an image stitched together from things that have brought her ort in the past.
not believe I had a vision in April 2020. I do not believe I ssed a profound truth.
And yet. And yet. Part of me still yearns for that kind of faith. I’ve always wanted the kind of faith that Indiana Jones has in The Last Crusade at the leap from the lions head. That Joyce Butterfield had when she wrote a letter to be read aloud at her funeral and ended it with the words ‘I’ll see you all soon’. Having MS made me believe in souls. It made me doubt my body, made me feel like this fleshy spacesuit is a Judas; unreliable, betrayer, nothing to do with who I am. I feel certain I have a soul, or a mind, an essential me-ness that’s who I really am. I am to my body what a driver is to a car, a jockey to a horse. The way I feel certain that my body isn’t me, I wish I could feel that certain about anything else. A religion. A lottery ticket. Anything at all. We still live in a society that runs off faith, in ways we’ve learnt not to see. As a 17 year old with no understanding of economics, the 2008 crash felt like a crisis of faith. From my perspective one day people believed in the market and everything was fine, the next day people lost their faith and everything tumbled down. The anti-vax crisis can be viewed as a crisis of faith in medical science. So many things in our world only work because we believe in them together: train timetables, the rules of a football game, traffic safety. I was in a car crash a few weeks ago, the roads are terrifying right now. I’ve lost my faith that other cars can pass mine with out calamity. Consider time. Not real time, the tide, the pull of the moon, the earth spinning round the sun. Clock time, calendar time, made up time. In ancient Greece the nights had four hours and days had 12. In Britain the new year was in April until we changed our minds. In 1752 as the British Isles moved from the Julian to the Gregorian calendar we skipped 11 days, so people went to bed on the 2nd of September and woke up on the 14th. Creativity runs on faith. Writing and making art is a kind of magic trick, just like flying in Neverland, Wile E. Coyote running past the edge of a cartoon cliff, the second you start to doubt you start to fall. I can suffer with horrible creative block, and it’s all rooted in doubt. I spend weeks deleting every word I write, unpicking every stitch. It’s not that I can’t make anything, it’s that I don’t believe what I’m making is any good.
Despair is a storm-swept sea, all of us are shipwreck victims tossing and tumbling in the water. It doesn’t matter what we cling to a bit of mast or a plastic crate God or love or art. What matters is finding the strength to cling.
Faith as in the opposite of doubt. Sitting down in front of a blank page. Faith as in the breath Simone Biles takes before attempting a world record-breaking difficulty score. Casting on a first stitch. A trousseau drawer. Faith as in patience, winter gardening, enduring suffering putting lobster pots out at low tide. watching someone precious go out of your sight. Trusting they’ll return.
e is a downside to faith. I was diagnosed with an incurable ess a decade ago and this treacherous part of my brain just will stop believing that I’m going to somehow be cured.
out meaning to, I daydream about getting better. What would my look like if I was better? I picture it like a montage scene in lm:
one buys me a plant and it’s tired and neglected looking, I’m d and neglected looking too, hair stringy, bags under my eyes. I the plant on my kitchen windowsill and I say “Oh how can I keep plant alive when I can’t even keep myself alive?”. The plantr just looks knowingly, the way wise people do in films.
time speeds up like those YouTube videos showing plants moving rds the sun. We see the plant developing and growing, and lights of me bustling around the kitchen, slowing to show key nts – while watering the plant I talk on the phone saying, “Yes, love to have a show at the Tate”. Until the plant is thriving, y with blooms and I’m thriving too. The plant-giver is back, ing on the kitchen counter. “I haven’t even thought about MS in months” I tell them, and the plant-giver goes “I guess all you ed was a bit of faith.” These are the kinds of fantasies I have eed from my soul like dandelions, persistent little bastards that ys come back.
ou don’t live with a chronic illness this might seem harmless. ’t we supposed to have a positive mental attitude, isn’t a little of hope healthy? We are told constantly that we can ‘beat’ ess by being a ‘fighter’ who ‘never gives up hope'. But here’s truth: if you have an incurable illness, faith in a cure is on. It’s an oil spill that will spread until it contaminates your e world.
ou have faith that you might get better, then the danger is that start waiting to feel better. You put things off for when you’re ing well enough. I’ll write my book when I feel well enough, I’ll my friends when I feel well enough, I’ll leave the house when I better. That’s the way to lose years of your life.
constantly having to uproot the faith that one day I’ll get er. I’ll plant in its place this far fetched, impossible idea I can live a good life and still be sick.
Feast day March 20th Saint Cuthbert was maybe a Briton or maybe a Saxon. He could have been a shepherd or a soldier who fought the Mercian’s or both. We know he had a vision that told him to go to Lindisfarne. We know he was a famous hermit in his lifetime, and even more famous after his death. The oldest book in Britain is Cuthbert’s bible, it says ‘Cuthbert’s book that fell into the sea’, on the opening page. He named his horse Comrade and shared meals with it. His best miracle – Cuthbert stepped on to land after walking ankle deep in sea water, and two sea otters voluntarily used their fur to dry his feet. Cuthbert protected all the eider ducks on the Inner Farne Islands when he was Bishop of Lindisfarne and allowed them to nest inside the priory. In the northeast eider ducks are still known as Cuddy ducks after the Saint. As a kid on holiday on Lindisfarne, I was baffled how someone could live in the quietest most peaceful place on earth and think, ‘you know what this place could use? More windswept isolation’. I used to think there must have been a monk on Lindisfarne with my personality, some over the top chatterbox who could talk anyone further and further out to sea. “Hey Brother Cuddy – what do you think of my new vestments? Too much? I was talking to Brother John in the brewery just now – particularly good batch of mead on at the moment FYI. Anyway he said ‘those vestments look a bit much. Could do with being itchier’, he said. ‘you know, more mortifying?’ I said listen buddy, some of us can itch in style and – wait. Cuddy – where are you rowing to? Cuddy? There’s nothing on that island”. Reading about him now as an adult, I get it, he wanted a quiet life alone with his ducks.
You were a capable soldier, you had a vision of a dying saint Aidan told you to live a life of solitude and piety. So you did and you were good at it and when people noticed they started to seek you out. They wanted to get in on your good piety thing. In your quest for solitude you moved to a cave, a tidal island, a smaller tidal island. All the way out to the Outer Farne. With only eider ducks and kittiwakes for company. You built yourself a cell. Built a door for the cell and you locked it. Still, they came to be blessed through the window. You died and they were still after you, pestering for miracles and intercession. 200 years after you set off to die as a hermit, they used your coffin to lead an army.
looking Brown’s Point in Cullercoats Bay there’s this information . It talks about the 90 Fathom Gap, a crack between two tectonic es that runs across the bay. No one knows how deep it is. In my it goes down forever.
ink we all have a version of the Gap at Brown’s Point somewhere r the surface. We go about our lives eating ice creams, visiting riums and leaning into the gaudy distractions of a seaside town. o everything we can to avoid thinking about those deep unsettling ures that run between the tectonic plates of our souls.
member the first time that I read the information sign, I felt ely unsettled. Well, I guess this is a new thing to be worried t for the rest of my life. I’ve watched people swimming across bay and wondered if they knew that the 90 Fathom Gap was there, they were swimming over an endless abyss. I can’t help but ure them being sucked down into the fissure, and through to some r place.
’s how it sometimes feels living with chronic illness, like I’m at bottom of the Gap at Brown’s Point, and everyone else is still ming in the bay.
member reading that when James Cameron went to the bottom of the ana Trench he found a tin of Spam. No matter how deep I go, who’s ing in wait when I get there? Me and all my detritus.
I’m alone in the dark for a long stretch of time, like the pse I had in 2020, it feels like all the truths I’ve ever shoved the Gap at Brown’s Point come seeping out like an oil spill to aminate the rest of the water.
ting in the blackened ocean with me is the knowledge of my ess, the knowledge that it’s incurable and degenerative. Worrying what it will take from me in the future - my dexterity, my sight, ower of speech. Questions about how my life would have looked out MS. Could I have moved to Berlin? Made more friends? Taken lovers? Would I already be published? Showing in major galleries? d I be able to open the curtains? On and on and on. It’s amazing. after 10 years I can always find an interesting new way to be sad t MS alone at the bottom of the Gap at Brown’s Point.
– now available in Canadian Ham. The Gap at Brown’s Point is a gateway to another universe. A dark, cavernous part of yourself where everything echoes and distorts.
A forgotten date in May 2020
n your world has shrunk this much.”
w this line on Twitter today and my first thought was you have no , you have no idea. I’m sick of seeing people complain about down and isolation, about the new raw struggle of things that are and familiar for me.
it’s not fair of me to think this because I know absolutely ing about this stranger’s life. Maybe she spent seven years on an rig. Maybe she’s just got back from a stint on the world’s last ed lighthouse. Maybe she’s that old knight guarding the Holy Grail he Last Crusade and she’s been alone with her shrinking world for ousand years.
just that when my world shrunk this much nobody was interested. I ’t have 30 people to like my tweets.
st want to write something that isn’t about my illness. I keep ng, but it always sneaks up on the inside rail.
Midnight Body in May 2020, brain in the future In the new world I am going to have adventures. I am going to travel to new places and conquer kingdoms. Have adventures. Fight lions. Learn a language. Take exotic lovers. I’m going to go to boxing classes. See new things. Go to Berlin. Go to Oslo. Go to New York. Go to every art gallery in Europe like I put on my list of things to do before I was 30. Go to the weird brutalist greenhouse at the Barbican Centre that I’ve always wanted to go to. I might even get completely wild and sit on a park bench and eat an ice cream, go inside a shop, catch a bus to my local swimming pool. Hug my Grandma if we are both still alive.
The Still Dark of the Early Morning
as early March 2020 and I was laying on the bathroom floor. I d a lot of time on the floor of the bathroom in my tiny back-tomill cottage, and there isn’t really room to lay out fully. If my is clearing the toilet pedestal my feet stick out onto the ing. The brand of immunosuppressants I take leaves me particularly erable to stomach bugs. This one was rough. I hadn’t been able to solid food for a week at this point.
’d checked my phone I would have seen a string of encouraging s from the nurse who over sees my MS care. “I hope you’re ing”… “Please see your GP if you still can’t keep food down”… t focus on getting better”.
s focused, but not on getting better. The second I felt well gh to stand I took three wobbly steps back to my desk to carry on ing.
I was struck down by this God-awful mystery virus I was on a t deadline. As the last hurrah of an artists’ development program been taking part in for the past 12 months, I was about to over Tate Exchange London with five other emerging artists. The important event of my career to date. I didn’t have time to be I had 300 origami boats to fold and I was in-charge of conating and editing the group catalogue. We had 48 hours to make print deadline. In my head everyone was counting on me.
s counting on me. This event meant everything. In my mind it was a ce at redemption. Previously, any time I had made progress in my er it had been over-shadowed by my arch nemesis Multiple rosis. This time though, I was going to work so hard and be so MS would never catch up to me. I put my entire heart and soul my project ‘Seaworthy Vessel’. In January 2020, getting the train to London to plan the event, I felt so exhilarated and alive. was finally, finally happening. I was about to be a real artist.
sn’t really paying any attention to the news, or the world outside ouse. There was only vomiting and work.
was going to stop me getting to this event. No way would I let my world fall apart again. Nothing, that is except, a national lockdown.
Feast day September 21st
t Hieu lived in the 7th Century, rising to the giddy heights of ss in Hartlepool. Hieu followed the teachings of Aidan of isfarne, “Be kind to the poor, cruel to yourself.” Some scholars ulate that she’s the same person as Saint Bega. As Bega she was an h noble woman, promised in marriage to a Norwegian King. She ’t that into him, so she fled and pledged herself to Christ. ng alone in the Northumbria woodland as a self-styled anchoress, only company was the small birds who brought her meals.
ieu, there’s this prayer for her carved in a wall in Tadcaster’s stery, ‘O Abbess Hieu, thou didst shine with the virtues of ticism and humility. Pray that we also may follow the example of great teacher, the Hierarch Aidan, and live lives of spiritual ggle that our souls may be saved.’ When I first read that prayer I mber feeling vaguely horrified. Who wants to suffer? Who would te it?
the months that followed I started to notice that idea ywhere. Instagram posts cheerfully encouraging me to ‘Grow through I go through’. Gym adverts that scream ‘No pain, no gain’. A orting friend in a time of struggle patting you on the arm and ng “if it was easy to get it wouldn’t be worth having”.
re completely obsessed with suffering. Take a moment to reflect on ity fund raisers. Why isn’t it enough to hear about the worthy e to get our wallets out, why do we need Kevin Sinfield to run 101 s in a day, or Olivia Coleman to appear on telly with no make-up or a mate to give up booze for Dry January? Physical suffering, eived humiliation, denial of temptation. That’s what we want to when we sponsor someone.
ascetical theology that Aidan and Cuthbert were following on isfarne proposes that a good Christian should practice the virtues overty, chastity, obedience, humility and mortification. Those s, about how to be a good person, about how to truly dedicate self to anything, are still with us.
a moment to reflect on sports coverage. I can see the oduction of the BBC’s Olympic gymnastic coverage, a black-ande shot of a male gymnast winding a bandage round his hand. A ts reporter interviewing Katarina Johnson-Thompson before her , “Can you tell us about overcoming your injuries in training?”,
nails in marathon training, the image of a ballerina bleeding into her pointe shoes. We love a starving artist in a garret too. I remember doing Vincent Van Gough in primary school, the Dutch bloke who painted sunflowers and cut his ear off. We love to hear about artists driven mad by their singular visions of genius, destroying themselves and everyone around them. I didn’t invent the idea that great artists should live like monks or anchoresses. I think I absorbed it. I’d been at art school all of two weeks when a tutor, in all seriousness, discussed the ‘central wound’ with a room of impressionable 18-year-olds. This is the idea that all artists have some deep psychological damage, and that we’re driven to make art to heal it. Another tutor told me I was too polite to ever be a great artist. Artists are supposed to be damaged and bastards to everyone around us, and the world at large puts up with it only to be illuminated by our art. I remember this one assignment; we were supposed to have an experience and then make a piece of work about it. The choices were wild. One person tried to stay awake for 72 hours, another walked round for a week with no shoes. Nobody picked a nice experience. No one decided to have a lovely afternoon nap or eat a strawberry bon bon. Every time I read about a monk or a nun bricking themselves into a cell for three years, taking a vow of silence, giving up all food but hard bread and water, I feel like I know these people. If Saint Cuthbert or Saint Hieu were around in 2020 they wouldn’t be in the church, they’d be contemporary artists. Art is our higher calling, and we are supposed to be prepared to destroy our physical bodies and our personal lives to serve it. In 2001, the artist Tom Price spent three days licking the walls of an art gallery for his piece ‘Licked’. In the first hour, his tongue started to bleed, so he painted the walls with his own blood. 20 years old and creatively stifled by a happy childhood and amicable break ups, sat in hospital the day I was diagnosed with MS, I remember thinking “Well, at least I’ll have something real to make art about now”. I’ve spent the last two years thinking about suffering, and the people who
osopher, it’s that, to a greater or lesser degree, all humans er. We are all going to lose someone we love, we are all going to our bodies will break down, we’ll know pain, and sooner or later l visit the illness place.
re looking for that suffering to mean something. We still make and ume so much art about suffering because that’s the thing we need ake sense of.
45 minutes into her attempt to insert a cannula the duty nurse tells me this would probably be easier If I’d just let my body relax. I start to wonder if some of this isn’t karma for the period in the mid 90’s when I ran a lady bird hospital from the under-seat compartment of my blue and red ride-on car. The medication that is going to make me feel a lot worse before I feel anything like better. The occupational therapist who can’t support my plan to leave my parents’ house and live alone. All of it conjured by lines and lines of tissue paper beds. How carefully I used to help my patients remove their pretty red coats so they could sleep comfortably. Cannula in place, the nurse injects contrast dye, you’ll probably feel a burning. Don’t be alarmed if you start to cry and your tears are yellow. Don’t be surprised if you can’t think clearly for the next few days. Such benevolent well-intentioned violence. I always helped them to get dressed again when their convalescence was over. Here’s your coat back, little ladybird, why won’t you fly?
s Martin was a Canadian-born painter. Living in New York in the s she had a successful career as an artist until she gave her rials away and disappeared. Martin was ‘missing’ for 18 months. spent that time in the New Mexico desert, building a new studio by elf from scratch.
story around Martin’s disappearance, and the time she spent in the rt, could be the origin story for many of the hermits and orites I’ve been reading about over the last few months. Feeling a , following it, building a cell.
I first learned about anchorites and anchoresses I was completely inated by them. I latched on to the most extreme version of the : men and women who seal themselves inside a cell in a church.
did sometimes happen, but the reality was usually less extreme. orites and anchoresses were religious scholars or mystics hored’ to a church. They did usually have a cell, an ‘anchorage’, all spiritual safe harbour to work from. Some people were brickedor years at a time, some came and went as they pleased. They lly had some kind of window, like a confessional, so they could with the community and offer help and guidance. Some even had r own gardens. In Thomas Dixon’s Radio 4 show A Short History of tude: Retreat, he talks about three anchoresses who had their s set up facing each other so they could chat, and a shared pet
ou offered a real-life anchorage out as an artists’ residency you d be inundated with applications.
e’s a particularly strong correlation between anchorites then and sts now. For me there’s something in the contradiction, the way an orage was built so the inhabitant could be isolated from but also ected to the community. This lines up so perfectly with the ‘Look e, look at me, oh God why are you looking at me’ dialogue that s in the brain of every artist I’ve ever known.
ider Tracey Emin’s Exorcism of the Last Painting I Ever Made, e she lived and worked naked in a Stockholm Gallery for three s.
a Swinton spending 8 hours a day, for a week, in a glass box in Serpentine Gallery for The Maybe, an installation she created with elia Parker.
one of his 7,227 belongings. This is the exact kind of art I always wanted to make. I wanted to be an endurance artist. To make the kind of work where you push yourself, abandon your body, exist only as a conduit for connection. When I imagined making a Book of Hours on that afternoon in April, I was imagining myself doing it as a kind of anchoress. Living in one of those upside-down boat sheds on the beach at Lindisfarne. Enduring that romanticised suffering I imagined would make me transcend to a higher plane, living as a great artist filled with inner peace. Over the course of 2020 I put together a series of unsuccessful funding bids to travel to Lindisfarne and live as an anchoress. I was going for three months, a month, a fortnight, a week. When I arrived I would be a great artist, dedicated and disciplined. Never sad about my MS again. I would be productive if I could see the sea. If I could be an anchoress, a monk. I just needed to get to Lindisfarne and everything would be fine.
illness place is the deepest part of the ocean that the sunlight r reaches. It’s the farthest edge of a universe that is always nding. It only exists inside your brain. You can only go there your body is such a terrible place to be that you need to send mind as far away from it as you possibly can. It’s the opposite indfulness. Your mind is real and your body is imaginary. Your ciousness is a spaceship hurtling into the indifferent void of e, your coordinates are set to “away, away, away”. You have been ling for decades and you have gone past Mars, past Jupiter, past Pluto who no longer even gets to call himself a planet. You’ve past the nice things, you’ve run out of stories to tell yourself you’ve spent the memory of the pound your Grandad gave you in ange for the rusty nail found at the bottom of the garden under a tiful weeping willow cut down in the late ‘90s. Podcasts can’t h you and Jane Austen audiobooks can’t reach you. You’ve had to out the stars, the shining was hurting your eyes.
there is out here are things too terrible to look in the eye.
ce heard this thing about the International Space Station. The est problems are the ones we take with us. It was about how ecrafts start out sterile but the astronauts take all these aminants with them, all kinds of bacteria and other assorted obial junk, and it creates all these problems with mould.
the tin of Spam at the bottom of the Mariana trench all over n.
ider Saint Cuthbert. He’s set himself up on a remote island off coast, of a tidal island, off the coast of a larger island in the ntic Sea. He’s near a monastic community, and it’s the golden age orthumbria so everything he needs is catered for. The Vikings t even start raiding for 140 years. There’s a degree of toil, use even though he has a holy well it is harder to get your water a well than it is from a tap. He went to the island to suffer, use he thought things had got a bit bougie on Lindisfarne and he’s owing those ‘we pray for lives of spiritual struggle’ teachings. as going to suffer himself.
biggest torments were the ones that he took with him.
member this one particular night. April 2020. Fifty chronic ess years into my relapse. I didn’t look at the clock but it was
lamp on. I know F. Scott Fitzgerald said “In the long dark night of the soul it is always three am”, but I’m pretty sure this really was 3 am. I was feeling the illness place feelings. Somewhere out past Pluto. I was looking at the ceiling of the spare room of my Mum and Dad’s house. They have this bumpy Anaglypta wallpaper and in the dark it looks like someone hand-knit the ceiling. I was trying to find something to focus on. At home there’s this bump that (to me) looks like Jane Austen smoking a cigar (no one else can see the resemblance). I focus on it sometimes, and sometimes I imagine it giving me little pep talks (whatever it takes to get you through the night). I couldn’t find anything like that on the knitted ceiling but I noticed this weird blotchy shadow and I couldn’t figure out what was casting it. I didn’t think the light was strong enough for that type of shadow so I looked left at the window and the shadow was still there, now on the curtains. I felt a spike of panic and wondered for an irrational instant if there was somehow something alive in front of my face. I swotted with my hand, and the shadow was there again this time in the centre of my palm, and then I knew with horrible clarity that it wasn’t a shadow at all. This was an internal problem. Most likely a side effect of my uveitis flaring up. Most likely it was a little pool of blood on the inside of my eye. I started to cry a bit then, and my over sensitive nerves reacted like the tears were boiling water. Sometimes people who aren’t chronically ill ask me how I bear it. They mean, I think, the whole of it, they want to know how you bear a life that contains suffering. All life contains suffering. If they don’t know that yet they’ll soon find out. My life isn’t hard to bear. I’ve wasted so much time trying to convince them that there is always also joy, but they are too distracted by the suffering. Life isn’t hard to bear because there’s always sticking your thumb into a perfectly ripe clementine, there’s always sloppy kisses off your niece and a horse unexpectedly rushing past you in a field like it has a train to catch. It’s not the life, and it’s not the years, it’s not the months, it’s not even the days. I’ve never known a day without something, without a cat waiting at the top of the stairs to rub her cheek on your cheek, without a sky-blue bedsheet, the actual sky, the clouds that will never be that shape again, the preposterous stars. The moments though, my God the moments. The right question is how do you bear the moments and I don’t have a good answer. I once heard we know the universe can’t be infinitely big and infinitely old, because if it was the sky would be white, the light
astics. The pain is infinitely big and infinitely old. It is the moment, it has no edge and it’s always growing
night of the shadow I found myself imagining that I wasn’t alone y suffering. I pictured someone else hurtling through space in a eship riddled with mould. I imagined that they were suffering as as I was, more even, and I found I wanted to do something to that person. I wanted to look the darkness in the eye and to it looking back and come through the other side with some tiny e of wisdom, some hard won insight so I could offer some solace, hope maybe.
hat moment I sort of loved that other person. I knew I had to ive to build them a lighthouse, so they could find their way .
M A Tuesday in April 2021
up still groggy from a migraine two days ago, made a coffee, outside with no shoes on. I felt grateful for the cold, rang physiotherapist to make an appointment for him to look at my lder because oh God it hurts, and I just can’t wait six hs for six sessions in Seacroft! His name is David he thinks an help me but first he wants to know – “How does your MS ct you?”. Jesus David, what an opening question. How is it ible for the universe to have no edge and also be constantly nding? How deep is the Gap at Brown’s Point? I don’t bloody David, some things are too big for words.
r on, fatigue rolling in like a sea fret, I try to claw back victories from this spilt milk of a day. The bees have made iumphant return to my lavender bush and this is a cause for . I rearrange all the furniture in my living room, decide I d it better how it was and put it back. I submit a poem for ication for the first time and remember that tomorrow a film ine is being screened and tickets sold out before I could buy I have a little cry because my favourite take-away place has ped delivering to my house, then I track it down on another ite. That’s the secret in this life, sometimes you just have ind another way around.
10 AM Always, always, always It’s Spring. While I’m obsessively reading about anchoresses Sarah Edvard disappears. I can’t look away from the coverage. The same week I read about Ruth Williams, strangled with a dressing gown cord in her own home. After pleading guilty to manslaughter her husband is sentenced to just five years in prison. When I google the case to verify details, four other cases of women being strangled with dressing gown cords come up. This week doesn’t feel difficult to understand why a woman would choose to spend her life in a sealed brick cell with just a cat for company.
At First Bird Song
une 2021 I was given the opportunity to go on an artist’s retreat indisfarne. A real-life pilgrimage to find inner peace, solve the tered jigsaw of my contradictory belief system and finally become oper artist. I wasn’t putting any pressure on the trip.
romise begins immediately when accommodation on Lindisfarne itself navailable until at least 2023, so I stay in Seahouses. There a ant view of Lindisfarne if you leave the house and walk to the end he street.
l, I am resolved that for the week I will live as a monk:
ll keep to the schedule of the Monks of Lindisfarne and pray at 8 watches throughout the day. Only this is modern and secular, so…
define praying as this - anything that opens my mind up to my t. Anything that opens my heart up to the hectic beauty of the ess universe.
ll only do things that are edifying and disciplined. The following gs count – blind drawing, writing, looking at the sea, sky or life, reading poetry or creative non fiction, and yoga, which I never done.
ll not read fast-paced fantasy novels. I will not fall down pedia wormholes. I will not spend hours scrolling social media. I not watch reality television. a monk.
quester myself in a former fisherman’s cottage, with a pretty door on a rubbly little road that falls away into the harbour. I pots of tea and Google the fish and chip shop opening times.
he first day I write four times and do yoga twice. I don’t do any d drawing. I don’t read any poetry. I do read the guest book and up daft little stories for myself about other people’s holidays.
he second day I write twice but in longer stints. Better I think
stuff for tea; pancakes, bacon, sausages, strawberries. The monks treat themselves with a bit of mead or whatever after a hard day of being pious. I am being very disciplined. In the evening I watch swallows flitting about the telegraph wires. I spend three hours reading about swallows’ migratory patterns. I’m convinced there’s an excellent metaphor for faith in this. On The Real Housewives of Beverly Hills Richards have an argument about glam squads.
On the third day I write once in the morning, proper stuff about faith and feelings. I do write again in the afternoon but I accidentally start something about a guttersnipe in Victorian Yorkshire who can steal shadows and weave them into illusions, and that’s not very edifying or disciplined, so I don’t count it in my official tally. I don’t do yoga, blind drawing or read poetry. In the evening I watch a boat bringing the National Trust staff from the Inner Farne, remember an episode of the seminal ITV murder mystery series Vera is set on the Inner Farne and try to decide who would be the killer amongst the current group based solely on their wellies. On The Real Housewives of Beverly Hills, Crystal and Sutton get into an argument that ends with Sutton screaming, “Jealous of what, your ugly leather pants?” across Kathy Hilton’s perfectly manicured lawn. On the fourth day I don’t write, draw, do yoga, or read poetry. I set out to walk across the rocks to a small tidal island adjacent to Seahouses harbour that has a small stone hut on it. I’ve spent nearly twenty years convinced this was St Cuthbert’s hermit cell. As I’m scrambling up the final cluster of rocks, I start with migraine symptoms and have to turn back. In the cottage I Google the little hut and learn it was never a hermit cell. It was a powder house used for storing gunpowder away from the harbour. Slightly loopy with my acute medication I read about a campaign to restore the powder house, and a campaign to put a plaque on the powder house in honour of the woman who led the campaign to restore the powder house. I spend three hours reading the blog of a man who is visiting every island off the coast of Britain and Ireland. On The Real Housewives of Beverly Hills, Erica Girardi breaks down while telling Kyle Richards about her divorce. Erica Girardi is famously cold, it’s unusual for her to display emotion on camera like this. I read several fan blogs that theorise she wore non-waterproof mascara deliberately to make her tears more visible and garner sympathy from viewers.
ws and orphans. Erica’s assets are frozen. With no sense of irony, a sits by the private pool of her three-bedroom house complaining t how hard up she is. She’s using the third bedroom as a closet. hardly big enough for her clothes.
he fifth day I didn’t write, or draw, or read poetry, or do yoga. ad about the Monks of Lindisfarne and this beautiful, blue glass s set that academics theorise is evidence of trade with the ngs pre-dating the first Viking raids.
t Cuthbert first moved to Lindisfarne during the golden age of humbria. Second sons of Lords and Kings went into the church use no one else had a use for them. They brought land and silver them. The Monks of Lindisfarne had a pretty cushy time. That’s Cuthbert kept moving out to smaller and harsher places. The Monks indesfarne couldn’t get the simple life of poverty and chastity t.
he golden age of Northumbria, that blue glass chess set was worth uch as anything in Erica Girardi’s pre- separation, pre -assetsure mansion.
he fifth day I visit the Bamburgh bones. Ancient bones found in a al site in the sand dunes by the beach, which have been studied then reinterred in the crypt at Saint Aidan’s Church.
bones show all this evidence about the golden age of Northumbria, h was starting when Aidan founded Lindisfarne and ended with the ng raids. The people were in good health, the bones of normal ing people show no evidence of malnutrition. People were tall, le lived to good ages, people were well fed. There’s bones of ellers, coming from as far as the Mediterranean and Africa for and on pilgrimage. Ancient tourists. When Cuthbert lived in humbria it wasn’t gruelling and isolated. It was busy, thriving, perous. I noticed the small corner of an original gravestone in crypt. It had wool shears carved into it. They were almost stinguishable from the ‘snips’ in my Mum’s sewing box, the ones uses for trimming threads one-handed when she’s sewing something
el this moment of calm and connection, this oneness with the le inside the neat lead boxes I can see in the crypt. I know how that we are exactly the same in a fundamental way. Just people g our best to take care of ourselves and the people we love, and a bit of meaning to make sense of our existence. It’s like I’m nds away from understanding something profound when my traitorous
back out into the June sun. Aidan founded the Saxon church that stood on this site. He died leaning against the wall in prayer. I can’t even concentrate for five minutes. If I was a monk I wouldn’t be Aidan or Cuthbert, I would be overdoing it on mead. I’d be showing off my Christ-themed bling and giving Vikings all kinds of ideas. Lindisfarne On the sixth day I actually go to Lindisfarne. I go in the early evening, just after the tidal causeway has reopened. I take a picnic and forget to eat it. As I’m walking up from the car park easily 100 people are streaming in the opposite direction. I go past a row of Portaloos and an ice cream van to the upside-down boat sheds. The ones I imagined when I had my bad week, the place I’d put my anchorage. There’s a dead seal on the beach, and small dogs keep coming over to sniff its corpse. It’s beautiful, and peaceful in that special windswept Northumbria air. I’m really trying to feel something, the kind of thing I’ve felt on Lindisfarne before, but I wore the wrong shoes and they keep filling up with dry sand. The sunset is golden and perfect, I can’t walk towards it, the low sun is hurting my stupid damaged eyes. I can only look up when I’m walking away from the sun. Walking back the other way, I have to look aggressively down at my own feet so I don’t start with migraine. I sit on a bench looking out to sea, beating myself up for not feeling changed. I’ve been waiting for this for so long. Why aren’t I inspired? Why aren’t I becoming a better person? I think about the golden age, the mead and the ancient holy tourists, driving Cuthbert further and further into the sea for a minute alone. What is it about me that finds this so disappointing? I realise that I want it to be real and true that suffering makes you a better artist. A better, wiser, more noble person. I don’t want hermits and anchorites to be normal people struggling to dedicate their life to a cause.I want my dedication to my work to be so strong and pure that my suffering can’t even touch me, like I imagined was true for
everyone I’ve ever put on a pedestal. Saints and painters and poets. It’s never as straightforward as you want it to be. They weren’t that special. They were just people, striving for something and often falling short. You need faith in something to navigate through the pain, but you can’t believe in anything so hard that you don’t feel the pain at all.
in. Just the faith itself. The meaning it would give me.
Monks of Lindisfarne were just people creating impossibly high ards for themselves and constantly, inevitably, falling short. I have s been the Monks of Lindisfarne.
on a flawed quest. I thought I could make my suffering mean something art. I thought I could believe in whatever meaning I chose, believe enough to never really feel the suffering. You can find things in this that will make the hard times easier, but there’s nothing that will the hard times easy.
member, of all the ridiculous things, watching Trisha Godard’s show when I was off school with glandular fever for weeks on In one episode, Trisha is advising a man whose girlfriend had him. He was hurt, because he’d rescued this woman from thing, helped her through hard times, and he can’t understand why isn’t grateful, why that gratitude isn’t enough for her to stay. don’t need the thing that saves us when the emergency is over” ha told him “that’s why you don’t see anyone walking round the rmarket still wearing a life ring around their waist”.
, in an emergency, I had this idea and it saved me, but now I’ve ived the night maybe it’s time to try and let it go.
uffering means nothing at all. It’s not part of some cosmic plan. not making me a better person or a better artist. It’s not hing me anything. That’s a wonderful thing. This way my suffering mean anything at all, whatever I need it to mean on any given In the night I can tell myself it’s creative fuel, and in the ing I can tell myself surviving made me wiser. The trick is in ing that meaning go if it starts to hurt instead of helping.
summer evenings spent drawing on the beach with the wrong end of pade, the satisfaction of watching the waves wash them away.
ider the dinosaurs, and all the ways we’ve collectively been g about them. The dinosaurs of my 90s childhood were fierce death rds, all Jurassic Park or Walking With Dinosaurs. That dinosaurs scaly and green was presented to me alongside lions having manes n unequivocal fact.
history of humans and dinosaurs is a history of half-truths, g guesses that get replaced with slightly less wrong ses. We thought they were dragons and giants’ bones. We d them upright when they should crouch over. We thought er nails were noses. Brontosaurus existed, then didn’t exist
Since the 90s: Geri Halliwell left the Spice Girls and re-joined, the internet happened, and new fossil evidence tells us dinosaurs are massive birds. Most of them had feathers. Some of them had feathers that glitter. Modern dinosaurs are style icons. The thing I love about dinosaurs’ daring rebrand is this: dinosaurs were fabulous death peacocks the entire time. A truth existed fossilised somewhere, and it was real, and the entire time we believed a different thing was true. Nothing anyone believed about those fossils could physically alter them. That’s how it is with profound truth, nothing can touch its trueness. Nothing I believe in, or don’t believe in actually matters, because the reality, the real reality, I can’t touch it or change it. I can believe in God in a morning and fairy magic in an afternoon. All that matters is whether it’s helping me or not. Whether it brings me solace. Months after my retreat to Seahouses, where I sat on the harbour wall everyday and wasn’t even slightly productive, I’m still convinced I could finish all my writing if I just had an uninterrupted view of the sea.
Feast day January 16th
t Henry of Coquet was a Danish hermit who lived on a small island the coast of Northumbria, land in the gift of the Monks of mouth. He built himself a small cell and tried to lead a pious . His problem was he could never reach his own standards of piety. as always falling short, and putting stricter conditions in place. g from eating bread and cheese to just bread, to bread every other
e’s records of the caretaker of Coquet Island complaining about y’s over-the-top regime, how he refused to put ointment on a nasty wound. “Lad, your gammy leg getting worse isn’t helping Jesus”, I ine the caretaker said.
y got letters from his family I imagine his Mum writing, “There’s ty of Islands off the coast of Denmark love, can’t you be a hermit t closer to home?”.
y ignored these letters. Henry was trying to be good enough to his visions from God, which he seemed to view as something of a ance. One vision, a miracle, saved the life of another monk who over-indulged on mead and needed the 1120s equivalent of bundling a taxi.
student in halls, I had the bedroom next to the loo. Some ends I would listen to my housemate who hadn’t invited me on her t out vomiting untold quantities of cherry sours, weighing how ty I would feel if she choked on her sick and died against my re to sleep. I understand Henry’s predicament.
I read about Henry’s time on Coquet Island, I get it he’s just a doing his best and striving to be better. He’s just a human.
A day is a decade when you spend it at the bottom of the Gap at Brown’s Point. I usually get food cravings when I’m 20 years into a 30-year sentence. I haven’t eaten for so long all my memories of food feel imaginary, I’m seasick and I can’t face eating, and even if I could there’s stairs between me and food, and with my spinning head and rubber legs my box spiral staircase I might as well be descending Mount Everest. Statistically more climbers die on the descent. This is when I get cravings, and the thing I crave is always croutons. I become convinced that croutons are the only substance in the known universe that I will be able to eat without vomiting. More than that, I’m convinced that if I could only get my hands on some croutons and ingest them all my pain would end. Probably, once I’ve had the croutons I’ll feel well enough to do a bit of work. Probably when I’ve eaten the croutons I’ll feel well enough to go outside, and when I get out there it will be a lovely day with just a bit of that misty rain Yorkshire is so good at. I’ll probably walk down to the river, sit on the side of the stone bridge and think of something profound to write about, probably the most important writing of my entire career. In that moment there is nothing I believe in more than the power of croutons; I believe in croutons so completely that I am exactly 30 seconds away from getting up to make them. Still in bed in my darkened room, right on the brink of mustering the energy to get up, I start planning my descent through the death zone. I picture pulling back my duvet. It’s cream with bees on to remind me of the outside world. I can feel the wool carpet under my feet as I step out of bed. The room is tiny and I cross it by leaning on the wall. I go extra slowly down the stairs, allowing for the fact my cat will try and herd me back to bed and almost trip me up. I think about the cold kitchen floor under my bare feet and I try to remember whether or not the frying pan is clean and brace myself for the fact I might need to wash it. I imagine opening the bread bin, debating how many slices of bread I’ll be needing exactly, three I think, because I want enough for a whole bowl of croutons. I imagine turning on the hob, frontright second knob, getting the chopping board while the pan gets hot, grabbing butter out the fridge, melting plenty, a little more than I actually need. I imagine slicing the bread into chunky cubes, and I can hear them start to sizzle when they hit the pan, smell that glorious frying butter smell. I think about adding a twist of salt and black pepper, pouring them into a bowl once they get golden and crispy. By the time I’m sitting in my armchair and feeling the satisfying crunch of the first crouton between my teeth this version
the ones my Mum used to make with fresh soup in the school days.
or six years later when I wake back up, and I’m feeling strong gh to physically get out of bed and eat in this plane of reality. n’t want croutons. I haven’t wanted croutons in the real world for og years.
ting for the fish shop to open, June 2021.
a while I started wearing a magnetic bracelet. I’ve been having 3 aines a week since my relapse last April and I read wearing a etic bracelet is supposed to help. It doesn’t help, I’m always ing for something to help. I guess I’ve still got dandelions to . That’s the thing about chronic illness. Nothing can cure you of hope.
oogle search history reads like the prayer of a pilgrim.
le grant me a cure for my migraine, ability to spot quackery, the sense to put my phone down.
5PM The day of the failed Powder House walk, June 2021 In fairness to me, I doubt that if St Cuthbert had a choice between silent contemplation and a pivotal The Real Housewives of Beverly Hill’s episode he'd choose the silent contemplation. No one is picking divine connection over Erica Girardi 's first group event since she announced she was filing for divorce. I keep finding this out. Whenever you look into people who allegedly lived lives of simple dedication it always turns out to be a sham or at least an oversimplification. It’s impossible for people to stop being people and we need things. We need chats and distractions, we need each other, little cats coming to visit, little treats like mead to keep our spirits up. Even in the most trying of circumstances people create pleasant distractions, people make comfort and find joy wherever they can. Maybe I should be making art about that.
your 4th vaccine. k your registered for high-risk treatments. mber if you test positive it’s an emergency.
on’t expect you to live as a hermit.
ould expect it to be quite bad if you got COVID. mber you have a weakened immune system.
mber you need to start living your life. back out there.
ys wear a mask. d spaces where people aren’t wearing masks. d large crowds. to stay by an open window if you are using public transport.
e isn’t any official advice now. could be as safe as it’s going to get.
still need to be careful.
need to be getting out of the house. need to be living your life.
The Full Light of Day
eptember 2020, I went for a walk and noticed a perfect red rose ing in a neglected corner of a field near my home. I was very n with the rose the day I saw it, it felt like a blessing, a et gift tucked away in plain sight, just waiting for me or anyone who took a moment to stop and look. ‘These roses felt like the ect metaphor for the unexpected mad joys life can throw up when find yourself off-track’, I wrote in the caption accompanying the o of the rose that I posted to Instagram that day.
he next few weeks, I started noticing more and more unexpected ers; another rose, pink this time, deep inside the hedge of the memorial. A clump of mystery wildflowers growing in a gateway. delicate tiny white flowers pushing up through a crack in the ment. Once I started looking for them, wildflowers were ywhere.
been thinking about them a lot this week. I’m writing this in mber 2021, the shortest day. It’s always dark, I’m hardly going ide, and when I do nothing is flowering, or at least nothing I’ve ced. There’s that quote, I can’t properly remember it, about how should be kinder to yourself because nothing in nature blooms all round.
’s the thing I’ve been thinking about the roses. I go past the doned field all the time, the roses must have been growing there years, I just never noticed. It’s not a feeling of sadness or hing though. I like that my not looking had no impact on the tence of the roses. I’m not the centre of existence after all, k God.
arted to photograph flowers whenever I saw them, and saved them folder on my phone called ‘Joy in Unexpected Places’. Daisies ing through cracks in pavements, roses in hedges, some unknown ty pink thing springing up at the edge of a gate.
in the most inclement of conditions, joy finds a way of pushing ugh.
sky was a perfect blue, a few clouds ‘whisped’ about with no threat of rain. The blossom was out and I was sitting on a bench in my Dad’s gardening fleece, drinking tea from a battered red enamel cup and chatting with my family when we heard the first cuckoo of the year singing its arrival. I felt so happy that afternoon, just not being in pain felt like a true miracle. Maybe I hadn’t wasted my miracle after all. As a child I believed in fairies and magic. Like really believed, to a point that was maybe slightly embarrassing. I had a journal, mercifully lost, in which I would record evidence of fairy activity. It was quite full. I loved magic books like the Chronicles of Narnia and The Northern Lights trilogy. Anything where a plucky young girl stumbles into adventure, especially if that adventure takes place in another magical world. I used to sit behind my Mum’s shed and say out-loud “Nothing interesting ever happens to me. I wish I could have an adventure”, just in case any eavesdropping magical creatures needed a bit of encouragement to whisk me away. When I was 12, I was sick for weeks with glandular fever. Laying on the sofa I saw fairies flying past my mums living room window, dragonfly wings, clothes stitched together from Autumn leaves. I can remember seeing them as clearly as I can remember visiting my uncle with my mum that same afternoon, listening to the mixtape she had in the car. I know I was probably seeing leaves blowing off the trees while slightly delirious with fever. The magic and joy of it still feels real. In the summer of 2021, I noticed a hatched robin’s egg under the lavender bush in my garden. I got down on my hands and knees to reach it, to save and show my niece. Once I was down, I could see a tenpound note tangled in the bush, one of the new plastic ones, with two snails clinging to the surface. I picked it up thinking ‘well, this is clearly a fairy deal’. I knew it wasn’t real. Of course I permission to see magic wherever I can.
There’s been a big increase in the number of snails in my garden this summer, but I never salt them, or throw them next door. They paid fairly Ten pounds is a lot of money for a snail to raise. I hate that we live in a world where it’s a cliché to find a sunset beautiful and stop to take a photograph. I hate that we live in a world that is so obsessed with the distinction between real and imaginary
e staring off into space and just letting my mind wander.
had dreams that made me feel like a different person, that had equences in my real life. Once I lost my keys and couldn’t find anywhere for three weeks. I was just at the point of phoning my lord and paying the eye-watering charge to get a new set. I had a m in which someone said “in the pocket of your blue coat in the robe”, I got up and checked and there they were.
not that I think I’m psychic. It’s more like a part of my brain where the keys were, and I couldn’t access that when I was awake I found it in my sleep.
oesn’t need to be a real experience to be an important experience.
r the relapse I had in 2020 I had a huge increase in my number of aine days, for all of 2020 and most of 2021 I was spending three our days a week in bed with the curtains shut. Usually listening n audiobook or a podcast. My Audible stats at the end of 2020 rfully told me I spent over 2000 hours listening to audiobooks. ’s nearly three months.
thought of all that wasted time made me feel so miserable. I could see it as empty, time stolen from my ‘real life’. Just today as I editing this I noticed for the first time all these space rences - when did I learn all this stuff about space?
those months laid in the dark listening to random podcasts, some science sections, looks like something stuck.
r he destroyed all his belongings for Break Down, Michael Landy ved into the kind of artist who makes delicate drawings of weeds. developed an appreciation of weeds as well, they’re just flowers a rebel spirit. A dandelion is a problem in your garden path, but he right context: it’s the flavour in your salad, a diuretic, a for the afternoon. Those dandelion hopes turn out to have tical uses. Completely against my better judgment I keep searching migraine treatments to experiment with, there are lots of ures, but small wins too. I’m down from 4 migraine days a week to ot a cure but a huge improvement.
I was in Seahouses I thought the lesson I needed to learn was there’s nothing special about illness. That suffering doesn’t you access to some profound truth. Then I came home and I read t Alan Garner spending a long time sick in bed and coming to the ound realisation that there is no such thing as now. Listened to
get clean so she could share it with the world. Seeing Tracey Emin posting on Instagram about how her time in bed recovering from bladder cancer gave her a profound new perspective on her own work. Over and over again I’ve read about hermits and monks and artists and philosophers stretched across thousands of years who credit their time in the illness place with a profound change in their thinking. People get sick and have visions. People get sick and understand new truths. Maybe there is something special in the illness place. Here’s the catch: those visions aren’t the voice of God. It’s not The Muse talking to you. It’s the Spam at the bottom of the Mariana trench. The mould in the space capsule. Cuthbert on Lindisfarne pulling torment from his holy well. We get out what we take in. We get the blame for the bad stuff. We get the credit for the good stuff too. Those beautiful, earth-shattering, life-altering truths we built them in our own brains, and they belong exclusively to us. We are the magic. We are the miracle. We always have been.
Feast day May 13th
an of Norwich was a mystic and religious writer. Important things should know. She was a woman. A woman called Julian. She lived ugh the plague, the actual plague we are talking about when we about ‘The Plague’. She witnessed the plague that killed half population of Norwich, including, according to some historians, husband and children.
nd the age of 30 Julian suffered through a terrible illness, it bad enough that she thought she would die, bad enough that they her the last rites. Only she didn’t die. Over the course of her ess she had a series of revelations, she called them ‘Showings’. spent the rest of her life writing about them, she was one of the t people to write about the idea of a loving God. Where Cuthbert ed to practise the virtues of poverty, chastity, obedience, lity and mortification, and Hieu was inviting spiritual struggle, an said “…we are so preciously loved by God that we cannot even rehend it”.
014 I made a project called ‘How do You Sleep at Night?’, where le sent me the phrases they repeat to soothe themselves when they unable to sleep and I embroidered them onto white bedding. I mber this beautiful sentence someone sent in that really stuck me. I sometimes say it to myself when I’m deep in the Gap at n’s Point. It goes ‘All will be well, and all will be well, and manner of things will be well’. Julian of Norwich wrote that in anchorage in the 14th century.
tried to read some of her showings, they are loopy and beautiful mostly beyond me. There’s this one about a hazelnut – when she sick she could see the hazelnut in her mind, and she understood God made this tiny, perfect hazelnut and that he must love it, use creation is an act of love. Something like that. I didn’t y understand the God-logic parts. In places it’s like a licated maths problem I can’t wrap my head around. The same way never been able to wrap my mind around complicated equations use I can’t get myself to believe the number 3 is a thing that ts.
though I don’t get the God stuff, I feel like I get Julian of ich, I feel like Julian of Norwich would get me. I feel like
place. We understand the things you can only understand when you’ve spent time lost in the endless sea of sickness. We know what it’s like to be alone, staring out into the void for so long you start to feel the void is staring back. We get it. It is a thing I hope you never have to get. I feel seen by Julian’s writing, the same way I feel seen in a Louise Bourgeois painting or in an Emily Dickinson poem. That’s the miracle of art, the connection and intimacy you can share with another human across centuries. I’ve arrived in a place where I’m struggling to understand the urge to suffer. But, I understand this: “If there is anywhere on earth a lover of God who is always kept safe, I know nothing of it, for it was not shown to me. But this was shown: that in falling and rising again we are always kept in that same precious love”. I get the rising and the falling. I get the love. Julian of Norwich went into the illness place, and she came back with her showings. She came back with this revelation about God’s creation. I went into the illness place, and I came back with this revelation about creating. Through those awful weeks in April 2020, I found myself imagining that I wasn’t alone in my suffering. I pictured someone else, pulled through the Gap at Brown’s Point into the illness place, in a spaceship, out past Pluto, hurtling through space alone. I imagined that they were suffering as much as I was, more even, and I found I wanted to do something to help that person. I wanted to look the darkness in the eye and to bear it looking back, and come through the other side with some tiny piece of wisdom, some hard-won insight so I could offer some solace, some hope maybe. In that moment I loved that other person. I knew I had to survive to build them a lighthouse, so they could find their way home.
e end of The Lion, The Witch and The Wardrobe, the children have lived lives in Narnia. They are adults, kings and queens, with only hazy ies of their lives in the ‘real’ world when they fall through the obe and turn back into children again. The aftermath of this is never y dealt with in the stories, we don’t see Lucy and Susan huddled her over breakfast going, ‘Wait - do we have to have our periods for first time again?’. Can you imagine having to do your life over from hood knowing everything you know as an adult? What a nightmare. What a .
moves differently in magical worlds, that’s a well-established fact. e are forever spending a single night under the hill with the fairies, to discover it’s been 100 years in the mortal world and everyone they is gone. It can feel like this when you’ve been in the illness place; e been places, you’ve seen things, you’re changed but nothing of ficance happened, in reality you’ve never been anywhere expect in your ead.
e it when people talk about Jane Austen and they say “How did she write ll about marriage when she was single all her life?”, or they’ll talk Emily Dickinson and say “How did she write such profound poetry when ived such a small life?”. What they are forgetting is that people can rich inner lives even in restrictive environments, even people we don’t t to have them, like women and the sick. Jane Austen and Emily nson had whole universes to explore inside themselves. So do I. So do
going back to the illness place. This is the problem with telling a about chronic illness, with a normal illness narrative I’d get better tay better, or I’d die. Instead, I’ll get better, then get worse, then r again, then worse again. I may one day get worse without getting r. I will never get better without getting worse. So I know one day be going back to the illness place and I know it will be hard.
the earth moving around the sun that gives us seasons. When it’s spring el like we’ve come full-circle from last year, like we are back in the place we started. The reality is more complicated. The earth is in ly the same place relative to the sun, but the sun is in a different of its orbit round the black hole at the centre of the galaxy, and the y has spun into a different part of the ever-expanding universe. We’re in the same place twice, it’s just an illusion.
ike to think I’ll store up enough good stuff to make it easy when the times come back. I know I can’t. But I might be able to store up enough stuff to make it easier. I’ve spent too much time in my life aiming for
people find revelation in sickness is because it’s the only time we stop and really listen to what our minds have to say. At the moment I’m trying to think of the Gap at Brown’s Point as a kind of portal, like the cracks in the wall in the Matt Smith era Doctor Who. It doesn’t have to be oblivion on the other side though, it could be anything. I’m telling myself the illness place is just one universe in a vast multiverse I can visit inside myself. Some of them are dark and scary, but some of them are bluebell filled woods on May afternoons, some are polluted waters, some are light-soaked and made of love. Today believing this is helping me, and if it isn’t tomorrow then I’ll try to let it go. As part of this whole journey I’ve been on since 2020 I’ve built my own anchorage. It’s a fabric version of the upside-down boat huts on Lindisfarne, and it plays a sound installation. The idea is that I’m inside, isolated, beaming attempts at connection out into the world. Making it helped me understand something, I didn’t need to set out to be a hermit, or a monk or an anchoress, I always was one. MS was my tidal island, connection through art was the thing I believed in. It was already the thing that got me through the darkest part of the night. I just couldn’t see it, because I thought real proper faith would make it easy to cling to the bit of driftwood in a storm-swept sea. I always had the strength to cling.
A Sunday I shouldn’t be working on, October 2021
d a work call this evening, it only lasted about 40 minutes, it took 2 days of planning to get my brain in a fit state for o show up. I needed 20 hours of sleep, 3 cups of coffee, 2 s of industrial-strength painkillers. A complicated equation of and drink consumed at the exact right times so the energy ed is offsetting the energy lost to digestion.
such a complicated balancing act for me to get my energy ls and pain management right to be on a Zoom call with you. My the work that goes into me being present, and coherent, and to even look at a screen. For so much of my life I’ve been med of that, always hyper-aware of how much less I have to give use of that process.
this one time I’d like to take a minute to be proud of myself, he demons I slay and the miracles I perform to claim space in room.
11AM A mid-weekday, November 2021 I have the alarm on my phone set to an artificial dawn chorus. It’s supposed to help to have bird song wake you up in the morning instead of terrible blaring alarm noise. I’m not sure of the science behind it, but it’s cheerful and I believe in doing anything that is harmless and helps you get through the night. I once read that birds sing at dawn to let their mates know that they have survived the night. Birds aren’t daft - they navigate the world - swallows flying every summer from Africa. Birds know is that it’s hard to get through the night. It’s hard to get through the night if you’re a tiny songbird. It’s also hard to get through the night if you’re a person. Hard to get through to metaphorical night, the dark times in our lives. I think that we should learn from the birds and when we do something miraculous, like surviving to see another dawn, we should celebrate that miracle. I can’t actually sing, but this is what I’m doing instead. Making this recording, making this piece of art, to let you know that I made it to see another day. And to let you know that I think you can make it too.
My neighbours cat hitting the door mat with his eclectic plunder A bag of chips from the fish shop A book of Farm Foods vouchers A single glove My Grandma cutting the buttons off her blouses Stashing them in an old sweet tin in the loft alongside Twenty suitcases of assorted fabric she brought home when she worked on the market You never know what might come in for something I’m saving up tiny joys the way a bear fattens up for the coming winter A patchwork quilt of ordinary leftover happiness to keep me warm through the darkest part of the night.
Disability Arts Online as part of their Associate Artists Programme. This project was also supported DaDa and Attenborough Arts