Being Mutant

In October 2014 I was diagnosed with Ehlers Danlos Syndrome (EDS), a connective tissue disorder caused by a mutation in one or several of the genes responsible for collagen production.

Unless you’re reading this because you or a friend or family member have EDS, it’s likely that you’ve never heard of it before. You’re not alone. The only people I talk to who know about it are those who know someone else with it. This needs to change so that fewer people have to suffer in ignorance, without diagnosis, treatment or understanding from their communities.

So I’ve started this new strand on my website, Being Mutant, to share some of my experiences and knowledge of EDS, in the hope of chipping away – in my tiny way – at this vast damaging ignorance. You can find more information on EDS at the Being Mutant page (just click on the link in the menu at the top of each page) and I”ll keep adding to it as I go through the process of finding out more about the condition in general, as well as my personal experiences of it.

Shunting in reverse through the steps of a dance/nobody else can join in with.

This week I got the news that a poem of mine, ‘Begin’, was chosen as one of the runners-up for this year’s Fish Poetry Prize, judged by Nick Laird.

This is what he says about it –

Begin by Polly Atkin

The poem had impressive, confident turns, and I admired the way its syntax broke across its line endings. It had certain phrases that I liked too – ‘the bluetime when everyone sleeps’.

‘Begin’ will be included in the Fish Anthology, which I’m really pleased about. I wrote it towards the end of my MA year, although I think it changed  a little after some further redrafting in 2008. In many ways the poem is about mistrusting memory, so I’m going to leave this recall vague. For a long time I’d thought of it as being quite essential to the imaginary collection I had put together in my head, but after several years of sending it out to various places and getting it sent back it got superseded. I went back to it this year because it suddenly felt very pertinent again.

The summer I turned fifteen I started to suffer from strange dizzy spells. I remember standing on a famous bridge in Italy rubbing the famous brass nose of a famous statue of a wild boar, and feeling like the world just fell away from me like a piece of stage scenery. Nothing was quite the same after that.

I had tonsillitis for the best part of a year and a half and had my tonsils removed and didn’t get better. I had a lot of tests. I documented ‘feelings of unreality’ in journals. Frightening possibilities were raised, then discounted. I dislocated my knee and fell and broke my elbow and forgot how to sleep. I got sicker and sicker and thinner and thinner. I was sent to CBT and got diverted to an anorexia specialist, because he’d ‘treated thirteen girls with Anorexia from my school’. I went to a nutritionalist who told me to avoid yeast and sugar. I swam. I tried to Be Normal. I got used to seeing the sky as flecks of moving matter. This is what ‘Begin’ tries to approach. The months when I thought I might be dying, or mad, or both.

This summer that summer when it really began is twenty years ago. I still have to tell myself every day to get up, to shake out my limbs, to keep going, that this is – and always is – where it begins. But I know now what all this meant, in a way I didn’t ten years ago when I was trying to face it in small ways for the first time in my poetry. I now know all my mystery symptoms were products of my hypermobile body, of that defect in my collagen that effects how everything works, but which no one recognised. I can’t undo all that time when no one saw me or believed me, including, at times, myself. But I can speak about it.

May is Ehlers Danlos Awareness Month. I’ve been wanting to write something about it – for it? – but couldn’t work out how or what. Do I try and explain what it is like to live with it? Do I try and explain why it’s important to try and explain?

One of the amazing things I’ve found out since my diagnosis is that – for a supposedly rare disease – there are a remarkable number of poets with EDS. I hope that together we might be able to change the narratives on EDS, so that fewer people have to go through the years of misunderstanding and mistreatment that I, and many others, have done.

So I thought I’d share a few others poems I wrote during that MA year, which perhaps express how it has been for me to live in an Ehlers Danlos body in a much clearer way that I feel I can do in prose. I’ve been writing about it much more consciously in the last few years. But it is only looking back at these poems now, knowing what I now know about the breadth of my condition, that I understand how much I was always really writing about it. I didn’t know, for example, the diagnostic significance of my narrow high-arched, over-crowded mouth, how it was directly connected to my long arms, my tumbling knee-caps, my pain – and yet it’s there in the poems. These poem are all in my first pamphlet ‘bone song’.

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The Shuffle Tap Shuffle

She sings a song to bring herself home,
counting the bars to the end of her street,
she moves her feet in time to the music,
dream-scenes the bone-cracking walk as a dance
where shuffle tap shuffle the drag is deliberate,
the thick-blooded leaden-limbs part of the act,
where heel toe sliiiiide the slabs on the pavement
are dance pads with neon touch-sensitive lights,
and she step stamps the beat on them, brushes a pause,
timestep and ball-change she pirouettes, glides
to a note-perfect finish, expertly timed
so the claps start to come as she reaches the door,
fumbles the key in, trips into the hall
and the held last note fills the drum of the house
as she slumps to a rest like a curtsey, a bow,
a puppet unstrung, on the floor.

 

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Tree Dreams

If she holds her twig-brittle finger bones tight
in a fist, her knuckle bones rise up white;
stub-buds of new limbs, pressing her skin.

They hover close, under the surface, wait
for a signal, trigger. They itch for the light
and to move in it, grow to it, drink it all in.

They’re greedy. She glimpses their dreams some nights,
dreams of branches, galaxies wide,
of fruit like planets, seeds like suns.

She frisks herself for gnarls and twists,
reads each bone-knot as a sign, its time
to change, the spring has come;

they shoot from her like splinters, scythes,
leave her skin-split like a pip and rise rise rise

 

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sunday morning

I expect it is only last night’s drinks
taking their sunday morning bow,
this way I feel; almost as though

I’m growing backwards,
shunting in reverse through the steps of a dance
nobody else can join in with.

It is a sad dance, but happy too;
no one could move their feet that way
if they were not glad to be dancing.

I jerk, dip, as the music directs,
travelling the length of the past, the possible,
in strange slow arcs like broken ripples

raising my arms, stroking the ground.
It is sunday morning. Another week gone.
It all will be gone by evening.

 

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Teeth

Her teeth were rows of sarsen stones
fixed in an arc like a half-set sun,
a henge that would fit in the dip of a palm
but heavy, too heavy to carry for long.

He took the weight. She told the hurt
of fissures and fault-lines, sinking earth,
of fractures, loosenings, crumblings apart.
He ran one finger over the curve

and found himself lost amongst cairns and tors,
ruined palaces, mounds of bones:
a thousand things one human mouth
could never hold or own.

Weary, he pressed them back into place
and closed the ground of her face.

 

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Dark Days for White Moss/WWWD.2

White Moss common is once more under threat, as the application to ‘improve’ it into a visitor hub has been renewed with (very minor) adjustments (the cafe is slightly smaller).

You can see the plans here and here.

This comes as the Lake District National Park Authority are also selling off large swathes of the Lake District, including Stickle Tarn, Baneriggs, and Lady Wood, the wood above Town End which William and Dorothy Wordsworth knew as ‘John’s Grove’ after their brother, drowned at sea in 1805, and which is described in the last of the Poems on the Naming of Places, as below. This is one of my favourite Wordsworth poems, and, I think, particularly evocative of Grasmere and the Lake District more generally. IMG_2738

I have been both a listener and leader in walking seminars that have taken students and visitors to The Wordsworth Trust into Lady Wood to hear these words along with that ‘sea-like sound’ coming through the trees. Almost everyone cries, whether they have any interest in poetry or Wordsworth or sailors or woods or not. It’s actually kind of creepy. In my critical work, I argue for the central importance of this poem, and this place to the Wordsworths’ Grasmere, and the Grasmere passed down through their writings.

Grasmere from Lady Wood
Grasmere from Lady Wood

It’s almost as though no one at the LDNP or Lowther or GoLakes paid attention to that excellent protest poem I posted about back in early November. I don’t know what’s wrong with them. Maybe you do, and would like to write to them to tell them.

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The Old Road by Lady Wood, a little clogged with snow, during my first winter in Grasmere.

‘When first I journeyed hither’

 

When first I journeyed hither, to a home
And dwelling of my own, it was a cold
And stormy season, and from week to week
The pathways and the publick roads were clogged
With frequent showers of snow. Upon a hill
At a short distance from my House there stands
A stately fir-grove, wither I was wont
To hasten, for within its shade I found
Commodious harbour, a sequestered nook
Or cloister with an unencumbered floor.
Here is safe covert on the shallow snow,
And sometimes on a speck of visible earth,
The red-breast near me hopped, nor was I loth
To sympathise with vulgar coppice birds
That hither came. A single beech tree grew
Within this grove of firs, and on the fork
Of that one beech there was a thrush’s nest,
A last year’s nest conspicuously built
At such small elevation from the ground
That even an unbreeched Boy might look into it:
Sure sign I thought that they who in that house
Of nature and of love had made their home
Among the fir-trees, all the summer long
Dwelt in a quiet place: and oftentimes
A few sheep, stragglers of a scattered flock,
Were my companions and would look at me
From the remotest outskirts of the grove,
Some nook where they had made their final stand
Huddling together from two fears, the fear
Of me and of the storm. Full many an hour
Here did I lose. But in this grove, the trees
Had by the planter been so crouded each
Upon the other, and whithal had thriven
In such perplexed array that I in vain
Between their stems endeavoured to find out
A length of open space where I might walk
Backwards and forwards long as I had liking
In easy and mechanic thoughtlessness.
And, for this cause, I loved the shady grove
Less than I wished to love a place so sweet.
I have a brother: many times the leaves
Have faded, many times the spring has touched
The heart of bird and beast since from the shores
Of Windermere, from Esthwaite’s cheerful Lake
And her grey cottages, from all the life
And beauty of his native hills he went
To be a Sea-boy on the barren seas.
When we had been divided fourteen years
At length he came to sojourn a short while
Beneath my roof, nor had the sun twice set
Before he made discov’ry of this grove
Whither from that time forward he repaired
With daily visitation. Other haunts
Meanwhile were mine but from the sultry heat
One morning chancing to betake myself
To this forsaken covert, there I found
A hoary pathway traced around the trees
And winding on with such an easy line
Along a natural opening that I stood
Much wondering at my own simplicity
That I myself had ever failed in search
Of what was now so obvious. With a sense
Of lively joy did I behold this path
Beneath the fir-trees, for at once I knew
That by my Brother’s steps it had been traced.
My thoughts were pleased within me to perceive
That hither he had brought a finer eye,
A heart more wakeful: that more loth to part
From place so lovely he had worn the track,
One of his own deep paths! by pacing here
With that habitual restlessness of foot
Wherewith the Sailor measures o’er and o’er
His short domain upon the Vessel’s deck
While she is travelling through the dreary seas.
When thou hadst gone away from Esthwaite’s shore
And taken they first leave of these green hills
And rocks that were the play-ground of thy youth.
Year followed year my Brother! and we two
Conversing not knew little in what mold
Each other’s minds were fashioned, and at length
When once again we met in Grasmere Vale
Between us there was little other bond
Than common feelings of fraternal love.
But thou a School-boy to the Sea hadst carried
Undying recollections, Nature there
Was with thee, she who loved us both, she still
Was with thee, and even so thou didst become
A silent Poet! from the solitude
Of the vast Sea didst bring a watchful heart
Still couchant, an inevitable ear
And an eye practised like a blind man’s touch.
Back to the joyless ocean thou art gone:
And now I call the path-way by thy name
And love the fir-grove with a perfect love.
Thither do I repair when cloudless suns
Shine hot or winds blow troublesome and strong;
And there I sit at evening when the steep
Of Silver-How, and Grasmere’s silent Lake
And one green Island gleam between the stems
Of the close firs, a visionary scene!

And while I gaze upon this spectacle
Of clouded splendour, on this dream-like sight
Of solemn loveliness, I think on thee
My Brother, and on all which thou hast lost.
Nor seldom, if I rightly guess, when Thou,
Muttering the verses which I muttered first
Among the mountains, through the midnight watch
Art pacing to and fro’ the Vessel’s deck
In some far region, here, while o’er my head
At every impulse of the moving breeze
The fir-grove murmurs with a sea-like sound,
Alone I tread this path, for aught I know
Timing my steps to thine, and with a store
Of indistinguishable sympathies
Mingling most earnest wishes for the day
When We, and others whom we love shall meet
A second time in Grasmere’s happy Vale.

 

Composed 1800-4.
Published as ‘When to the Attractions of the busy World’, 1815.
This text from MS. W recalled that ‘The grove was a favourite haunt with us all while we lived at Town-End’ .

Ed. Stephen Gill, William Wordsworth: The Major Works, (Oxford World Classics, 2000) p.220-223.

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What will be found in England’s lost corner?

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Tomorrow I’m making the excessively convoluted journey from Cumbria to Norfolk, for the Cafe Writers Poetry Prize reading. The night before New Year’s Eve I got the news my poem ‘Tiny Glass Horses’ had been placed third, with first prize going to Jonathan Davidson’s paean to ‘Brickwork’, and second to Jo Bell’s take on A Natural History of Selborne, ‘A Nightingale for Gilbert White, April 5, 1768’.  It was great to go into the new year with this news, and knowing my lucky streak, or whatever you might call it, wasn’t quite over.

So I realised this will be the first time I’ve done a poetry reading in East Anglia. It’s been a decade, I think, since I’ve been to Norwich (not because I’ve been living with an Ipswich supporter for the latter half of it – mostly just because of the difficulty in getting there from these far reaches of the North-West). This means I haven’t been to Norfolk since I first read Kazuo Ishiguro’s Never Let Me Go, in which Norfolk is figured, quite compellingly, as ‘England’s lost corner’. I always think of this now when I think of Norfolk, especially when I’m trying to get there via the train network, with it’s refusal of east <–> west:

‘You see, because [Norfolk is] stuck out here on the east, on this hump jutting into the sea, it’s not on the way to anywhere. People going north and south, they bypass it altogether. For that reason, it’s a peaceful corner of England, rather nice. But it’s also something of a lost corner.’

Someone claimed after the lesson that Miss Emily had said Norfolk was England’s ‘lost corner’ because that was were all the lost property found in the country ended up.

Ruth said one evening, looking out at the sunset, that ‘when we lost something precious, and we’d looked and looked and still couldn’t find it, then we didn’t have to be completely heartbroken. We still had that last bit of comfort, thinking one day, when we were grown up, and we were free to travel the country, we could always go and find it again in Norfolk.’
Kazuo Ishiguro, Never Let Me Go

I hear great things about the writing community in Norwich and the surrounding area though so I’m looking forward to seeing a bit of it. And whatever I’ve lost that might reappear. Unfortunately David Morley, who judged the competition, can’t be there because of work commitments, but that does mean there’ll be a decent hearing from the winning and commended poets who can make it.

The next day is the first of my appointments with one of the specialist clinics I’m being sent to to try and help limit the Ehlers Danlos Syndrome damage. This one is for the autonomic problems that come along with it, which are some of the hardest things to deal with on a daily basis. Hopefully the poetry will take my mind off the appointment, and vice versa …

The reading starts at 7.30pm, at Take 5, 17 Tombland, Norwich in the upstairs function room.

The Old Year is Dead

IMG_65722014 seems to have been a year of upheaval and uprising, of extreme highs and lows, tragedies and atrocities, of revelations great and terrible. Natural and/or man-made disasters dominated local and global news. Planes fell from the skies, flood-waters rose, diseases flourished, people around the world were killed for being who they were where they were (students; black men; female; indigenous women; transexual; disabled …). Governments and government agencies were revealed as complicit in crimes against their own people, as well as others. Those in power were revealed as abusing that power. It sometimes seems that each year brings an escalation of violence and intolerance. Does it end? Is this sense of escalation an illusion? Is this how it has always been and always will be? Does it come to a head and subside? Do we learn to live better, with the world, and each other?

My own year has been a peculiar mix of surprising successes, big changes and ongoing difficulties.

Looking at it in terms of what might be termed ‘worldly success’, this has been the best year I’ve ever had.

I started my first full-time academic job in September.
I was granted funding for a Knowledge Exchange project.
I had a great time judging the first Wordpool Poetry Competition, and was delighted to see the winning poem turned into an animation in the Blackpool illuminations.
I won the Wigtown Poetry Prize (with ‘A Short History of the Moon’), the Andrew Waterhouse Prize for Poetry in the Northern Writers’ Awards, third prize in the Poets and Players Competition (for ‘Causeway’), third prize in the Battered Moons Competition (for ‘Heron/Snow’), and was commended in the Hippocrates Prize (for ‘The Test’).
My pamphlet was shortlisted for the Lakeland Book of the Year.

At times this has seemed implausible to me. When I had to turn down appearing at the Battered Moons Awards event at the Swindon Poetry Festival, because it was on the same day as the Wigtown Festival Awards Event, which I had already agreed to be at, I really started to question how this had all arrived at once. I’ve been struggling so much for so long, in so many areas of my life, I didn’t really know how to stop struggling and bask in these moments.

Behind each of these public successes are the picked-over bones of countless private failures. This should go without saying, but it seems too easy to forget how much we don’t see of each others’ lives in this age of social media. There were dozens of jobs I didn’t get; schemes I was rejected for; poems nobody seems to have wanted. I’ve been thinking a lot about this this year, and what it means to really succeed on one’s own terms. Sometimes rejections arrive at the same time as acceptances, and you don’t know how to feel. Sometimes all the seeming successes in the world don’t appear to move you forward, and you can’t work out what is blocking your progression or how you could do anything differently. Sometimes it seems that just being you is what is blocking your progression. Sometimes you may convince yourself that there is One Thing that will change your stars. Eileen Pun and I call this the Monkey Island Hypothesis – that you can do all that is necessary in any order, but if you miss one vital component you will never get to the next level. It’s hard to escape that feeling that you’re falling behind, or under.

As I’ve written before, whenever I feel like that, I remind myself that the work itself is the most important thing. It doesn’t matter if – like some of the poems that have done well for me this year – no one else appreciates that work for years. There’s a kind of pact you make with the work you do.

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The last few years have been very hard for me, in various ways. I’ve had very little income, and what I have had has been very insecure. I have suffered a lot with poor health. I’ve been in constant pain. I’ve been perpetually exhausted, in a way which is hard to explain to a healthy person.

In April I finally discovered that the devastating abdominal pain I’d been living with since November 2012 was a mixture of inflammation of my rib cage, and a broken rib. Through my own persistence, and the persistence and support of my GP and local physiotherapist, I was diagnosed, in October, with Ehlers Danlos Sydrome (EDS). I was also diagnosed with Postural Tachycardia Syndrome (PoTS), which is secondary to the Ehlers Danlos Syndrome, and elements of Marfanoid body habitus. Life in my body, my peculiar body, is beginning to make sense in a way it never has before.

I had to travel down to London and pay to see an expert to get this diagnosis (which effects not only me, but my whole family, as EDS is hereditary). I’m now waiting to go to various clinics which should help me manage some of the symptoms. The diagnosis is both a tremendous relief (to know what it is, and what it is not; to know better how to help and what harms) and a peculiar burden (it is me, or I am it). I am still adjusting to knowing that I have to accept this difference, and its permanence, and all the consequences of that. ‘Normal’ is a lost concept. I will probably always be in some degree of pain. I will injure myself doing ‘ordinary’ things. I will always get more tired than an ‘ordinary’ person does from the same activities. I might never be able to stand still for more than a few moments without getting dizzy and numb and sick, as all the blood in my body sinks away from my head and my brain, and can’t pump itself back up through my too-elastic vessels. My main task for 2015 will be to learn to live with this, in and with my body, now we can see each other for what we are.

I am already learning not to feel guilty about prioritising the things I need to do to do the things I’ve agreed to do (sleep as much as possible; swim as often as possible; don’t be afraid of the judgement of others at the times these are all you can do). Some of you may be familiar with ‘Spoon Theory’. Most days for me at the moment, there is no spoon. I am concentrating on bringing some into being.

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So 2014 for me has been a year in which things have come to pass I hardly thought possible. People I’ve never met have read and enjoyed my poetry. People I greatly admire have read and rated my poetry. I have a steady income going forward for a reasonably steady period. Moreover, I have been given the key to unlocking central mysteries of my own life, and those of my family.

There’s a lot of things I feel I’ve been failing at though. I don’t see my friends enough. I don’t even contact my friends enough. I’m behind with all kinds of writing and behind with all kinds of reading. I don’t get to as many events as I’d like to, and I sleep through a lot of life. Most of the time, I’m barely keeping nose above surface.

I’m going into 2015 with some fear and trepidation (and a persistent chest infection), but also more genuine hope than I’ve been able to admit to for a long time. I’ll do what I can on my part – concentrate on what I believe matters most – and hope – keep hoping – that this concentration matters. I hope for the same for all of you. For your wishes and work to matter. For your wishes to work.

I wrote this poem, ‘Forecast’, on New Year’s Day 2013. In February last year it was engraved on a window of the Globe Inn in Dumfries, another fabulous event in my poetry year, that I have previously written about here. I knew when I wrote it something was shifting, but it took so long, so long to manifest as material change. This New Year’s Day, it hasn’t stopped raining, and all bodies in the house slept peacefully into the dark afternoon. Despite that, I think the forecast works as well today.

Forecast

Last night the barometer predicted CHANGE
the stormy tail of the year passing over.
Midnight threw up stars and a 2/3
moon, scattered as hailstones after.

New year’s day sailed in as a fringe
of spring on a sculling cloud, word
from an unseen sun, blue displacing
blank, as from a vacuum chamber.

One swift shower. One magpie etching
spirals in the lightening air. Now
its partner, binary tail declaring
the arrow’s twitch to Fair.

 

The Old Year is dead. Long live the New Year.

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