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‘I am the poet and, too, the poem’ -
Language and Multiple Sclerosis
Scarlett Ward

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'It doesn’t matter how much you read online about your diagnosis, nothing prepares you for the sensation of symptoms that the disease throws at you.'

As I sat down to write this essay this morning, I realised that the peripheral vision in my right eye was reduced to tunnel vision, as though I was looking through a toilet roll tube. The pink blossom of the cherry tree in my partner’s garden was like a closing movie scene before the credits roll, darkness shrinking the focus of the set to a single point. Vision problems are common with Multiple Sclerosis, but it doesn’t matter how much you read online about your diagnosis, nothing prepares you for the sensation of symptoms that the disease throws at you. 

I was concerned that perhaps working too hard had started to take a toll. The previous week I had visited hospital to receive a seven-hour infusion of the life-saving, disease modifying therapy that, although it will never cure my illness, hopes to slow the progression. I then worked my 9-5 throughout the week and wrote poetry during the evenings. Only the previous day I was celebrating with a poet I was publishing through my press, excited about releasing a manuscript we’d worked on for over a year. But this morning felt like an abrupt reminder that no matter how much I feel I’m slaying or girl boss’ing with my nude-coloured Stanley cup and newly purchased stationary, there will always be extra weight I’m having to drag after me in order to reach the point I want to be at. 

 

I walked back to the bedroom, a badly-contained panic curdling into fury, when I spotted the golden glow of the sunrise lighting up the white frames of the bedroom window. It set the brickwork behind the bed into ochre flames. It was still early, and the Spring sunshine breaks at around half six now. The condensation rolling down the glass looked like Swarovski yolk, and the light streamed through in ribbons. This is the epitome of the chronically ill experience: the simultaneous co-existence of despondency and buoyancy; the poetry of seeing the most breathtaking sunrise, and only having a percentage of my vision remaining to see it with. I recognise the absurdity of holding contradictory states: fury and awe, fear and wonder, over and over again. So, of course, my impulse was to write about it.

 

 

 

Sylvia Plath said 'I write because there is a voice within me that will not be still'.  However, since my diagnosis, my sentiment towards my writing compulsion has evolved beyond that. I write because my time will one day run out. It is so for us all, but when you have an incurable and progressive illness, it’s a fact that makes itself rudely known, demands attention, and prickles every hour that I’m not making art. Poetry is my secondary life-long condition, and it was my passion for writing that led me into publishing so that I might act as a sort of midwife, helping others to bring their books into the world. I have spoken in a couple of interviews about the 'writing process' particularly as someone with a disability, but the answer has not varied from before my diagnosis: I write because if I do not, I would lose myself, the self that exists independently of brain tissue and blood cells, the self that my disease cannot get to.

'I write because if I do not, I would lose myself, the self that exists independently of brain tissue and blood cells, the self that my disease cannot get to.'

In 2022 I fell into a coma. Upon waking, the brain damage that my disease inflicted meant that I could no longer walk or talk. I had to learn to read and write again. I spent hours drawing wobbly circles around a Girls Aloud wordsearch and scribbling out a barely legible note which read: 'I can’t stand people thinking I’m dumb.' Nurses spoke to me like I was a little girl despite my wristband clearly stating that I was a 28-year-old woman. I had a house, a dog, a horse. They would kneel and speak to me with an upward tilt to their voice, whilst I silently seethed at being infantilised. Being locked in your body with your mind working as normal is beyond frustrating. Even then, I went back to my literary basics. I would sing my ABC’s all day long, trying my best to make my mouth move to formulate each letter. Even when I thought I might die, there was literacy, there were words; buoys that I clung to in order to navigate my way back to myself. 

 

Image courtesy of author.

'We butt up against another contradiction; chronic illness is full of them. At the end of every day, I am a writer.'
'I describe the kindness I try to afford myself as radical because, against the capitalist grind, I allow myself rest when I need it.'

Memory of my time in hospital post-coma arises in vignettes now, much like the vision in my right eye. Postcards on catheter insertion, feeding tube fitting and speech therapy mosaic in my memory in ways that my therapist calls ‘PTSD’. I would later find out that the finger that flicked the lightswitch in my brain was my own immune system identifying my central nervous system as an attacker. In a valiant, albeit misguided, attempt to protect me, my immune system left me with brain damage and disability. Multiple Sclerosis is classed as an autoimmune inflammatory disease that has no cure and will progress over a lifetime, resulting in physical disability. I was diagnosed with Relapsing and Remitting MS, meaning that I will deteriorate in stages or ‘relapses’ before then recovering, but I will do so a little less each time. 

 

 

 

 

Multiple Sclerosis is not a pathogen or a bacteria; it is almost tempting to describe it as a delirium of state that my own blood cells exist in. They mistakenly identify my brain and spinal cord as attackers. There is no external 'other' I can point to; I am a child with a biro pen defacing my bedroom walls. (I am the bedroom wall. I am the ink-stained fingers. I am the parent who shouts, 'look what you have done to yourself!') My delusional blood cells eat away at the fatty protective layer coating the nerves in my brain, and I try not to think about the parts of me that it digests in its feast. It makes me think about how much I get to keep of myself and how much I will inevitably lose. But it is also comforting to think that if I am ‘eating’ myself, then I’m subject to no real loss. (Undeniably, MS is a thief of many things, but I am both the thief and the mark.) It was easy to go to battle with warfare vocabulary upon first being diagnosed, but now I stumble upon a deeper insidiousness in recognizing that although I am not defined by it, I am my MS;  my MS is me. Or is that less sinister and more of a comfort? Or both? We butt up against another contradiction; chronic illness is full of them. At the end of every day, I am a writer.

In the two years since my coma, I have been training myself in radical kindness - to praise my immunity for trying so hard to keep me safe, even though it is actually slowly destroying me. I describe the kindness I try to afford myself as radical because, against the capitalist grind, I allow myself rest when I need it; it is radical in that it is a thorough process of overhauling the sharpness with which I used to bully myself into doing things. Perhaps this is too much to unpack (I am the bully as well as the bullied). Initially it was soothing to speak in the third person of the body that was failing me so terribly. Perhaps in some subconscious way I hoped to transcend and therefore be redeemed from my disease. Keeping my body at arm’s length allowed me to provide a scapegoat for my fury, for my fear. I had something I could villainise. Those early days were all about survival: a panicked grasping for my basic skills. It is only with some reflection that have I been able to explore beyond that frantic survival instinct in response to illness and discover a language and approach that better help me come to terms with it. When I write about my body, I am trying not to become the villain that the vocabulary I employ implies. Instead, I greet my body with a hesitant and suspicious kindness, a shaking outstretched palm to a beaten stray dog. (I am both the hand and the dog.)

'Writing as an ill person with a progressive disease allows me to freeze time for a perfect moment. The sunrise coming through the window is immortalised; meanwhile, my body cannibalises itself. Despite, despite, despite: I remain a writer.'

 

 

In her book Lovebug, Daisy Lafarge says that she 'wanted to diverge from military metaphor, to refuse to rely on a lazy characterisation of pathogenic life as inherently evil, malevolent and vicious,' and indeed this in an intrinsic part of the radical kindness I practise, to afford my disease and therefore myself a gentleness. My immune system loves me so much it stops at nothing to protect me, and so begins its masochistic flagellation. I think of the quote often attributed to Bukowski: 'find what you love and let it kill you.' (I am at once the loved thing and the lover, as well as the killer and the killed.) I think of the fact that the EBV virus could be associated with the development of Multiple Sclerosis. I think of the fact I picked up the virus in my early teenage years from my first kiss, and the fact that it was nicknamed ‘Scarlet Fever’ and how that connects to my name. The threads of the universe seem to unravel the closer you inspect it. That is not to say that I feel defined by my MS, but as the disease is embedded in the very cells of my body, I become it as much as it becomes me. I think of Megan Falley’s poem about the most beautiful word in the English language being 'stay', and how the MS blood cells stay with me on this sinking ship. The resulting conclusion that I find myself coming to time and time again is this: the more I can offer myself kindness, the more I am able to approach life with the awe and wonder that it deserves. Language is a powerful tool, it allows me to see beyond the mutinous blood cells, exonerate them, break the cycle of self-hatred that is the literal driving power of Multiple Sclerosis. Language becomes my medicine. (I am both the medicine and the medicated. The Doctor and the patient). 

 

Daisy Lafarge writes that 'metaphors are our shared condition,' juxtaposing etymology and microbial disease. Her words make me think of the communities of chronically ill writers who hold a kind of duality in life: the status of a sick person, and that of a writer.

 

 

Lafarge continues to say that [her] 'language shifts from eradication to tolerance, resistance and adaptation' and I feel her words in my soul, in my moth-eaten brain, in my diseased blood. That is not to say that I embrace or romanticise Multiple Sclerosis with any kind of affection, it is a crippling disease that has no cure and follows a progressive model; I am keen to establish this before anyone can accuse me of being flippant. However, I think that, through writing, I am coming to understand that I am both able to negotiate my disease as an 'other,' and also accept it as the same as 'self.' Writing as an ill person with a progressive disease allows me to freeze time for a perfect moment. The sunrise coming through the window is immortalised; meanwhile, my body cannibalises itself. Despite, despite, despite: I remain a writer.  

 

It took me a few months to be able to read and write properly again. On my initial return from hospital, I couldn’t manage to read large chunks of text as my brain was still defrosting. It was like when you look at an artwork which simulates a stroke. My sister had to write out texts and emails for me. It seemed like a Godsend that much poetry is often delivered in short lines and spaced out well. It is as though the whole form was made to help me in my moment of grief at losing the one precious thing in my life: my ability to read. 

 

 

When I was first diagnosed, my poetry lingered on the theme of death, seeing it as the undeniable destination of my journey with an incurable disease. I wasn’t really writing deliberately as an act of catharsis, but subconsciously my work always veered in that direction as I was clearly working through the sudden realisation of my mortality (I was in my twenties, I’d ridden horses at high speed with no hands on the bridle, I’d raved wide-eyed in illegal forest raves, all evidence so far convinced me I was indestructible). It would diminish the chronically ill experience to say that time afforded me kindness and compassion for my body, rather than the immediate abject sense of betrayal, because there are times like today when I am furious that I cannot work on my writing projects because there is a riot occurring within my bloodstream. However, it is true that as years have passed, I have landed on the conclusion that self-compassion and abject wonder at the universe are my only balms. It feels natural to want to fight fire with fire, as the old adage goes, but overworking and causing burnout can lead to flare ups and relapses, periods where my illness will intensify and smoulder away at my brain with renewed ferocity. However, if I give gravity to a different lexicon when approaching my disease, one of radical kindness, I may say that my body is tired from trying its best to protect me from the anonymous intruder it thinks is with us. I say 'thank you' at its de-creation; I say 'what a beautiful job you have done' as I would to a cat bringing me a dead bird, through gritted teeth and an averted eye to the blood all over the kitchen floor. 

'I say 'what a beautiful job you have done' as I would to a cat bringing me a dead bird, through gritted teeth and an averted eye to the blood all over the kitchen floor.

When I cannot write, I meet myself with love. When I cannot see through an eye I’ve carried around for 30 years, I meet myself with love. When Multiple Sclerosis inflames the tissue in my central nervous system, I approach the relationship with a tenderness. Two extreme contradictory elements can and do coexist simultaneously: the part that meets my body with extreme compassion, and the part that 'fears the bite through which a part of me is bitten clean off.' Loving myself radically helps me to accept that I am both the victim of the disease and the disease. In this action I am able to distance myself from the monstrous elements of Multiple Sclerosis. If I anthropomorphise the cells (is it anthropomorphism if the cells make up the person? I am both the cells and the person, the disease and the host,) I might say that their hatred of self is what drives their coup, so loving them in reaction is my act of radicalism. I am a gentle parent that you see on Tiktok, soothing a ferocious toddler. I am a seeing eye guiding the failing eye to the gold of a sunrise. It would be credulous and naively optimistic of me to believe that I will never rage against my disease, but in seeing it as part of myself coloured by the lens of the language I use, I am able to love myself, and break the cycle of destruction.

 

As I finish this essay I notice that my vision has returned; such is the nature of Relapsing Remitting MS. It was just a flare up, not a relapse. I look at the pictures of the sunset with every percentage of my vision and try to write a poem about it. (I am the poet and the poem.)

Bibliography:

  • Daisy LaFarge, Lovebug, Peninsula Press London, 2023

  • Sylvia Plath, Letters Home, Faber, 1975 

  • Megan Falley, ‘The most beautiful word in the English language’, After the Witch Hunt: A Collection of Poems, Write Bloody Books, 2012

About Scarlett Ward 

About Scarlett

Scarlett Ward is a poet and publisher from the Midlands. Her debut collection ‘Ache’ was published by Verve Poetry in 2019, and in 2021 she established her own award-winning publishing house, ‘Fawn Press’. She was shortlisted for the UK’s Women’s Poets Prize by the Rebecca Swift foundation in 2022 and in the name year came in the final 10% of the Bridgeport Poetry Prize. Her recent work has appeared in 14 Poem’s Queer Poetry Anthology, Nine Arches’ ‘Under The Radar’ magazine, and Broken Sleep’s ‘Ecopoetry’ anthology.

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