Polly Atkin

shadow dispatches

Tag: EDS Awareness Month

May

I’m really pleased to have three poems in the Spring 2016 edition of The Lonely Crowd, as well as an essay on the composition of the poems and recordings of them online.

There are several readings planned to showcase the issue – one has already taken place (unfortunately on the same night I was reading for Brewery Poets), but I should be reading at one later in the summer.

Composition Notes: Polly Atkin

Notes on ‘Sister Running’; ‘Strength in Winter’; ‘Perihelion’.

On the surface, the thing that most strongly links these three poems is that they have a lot of weather in them; a lot of sky. One of the things I most love about Grasmere is the sky: its ever-changing moods; the complexity of its little-lit darkness; the long summer light; the sharpness and excess of stars on a crisp night, when you can see the milky way. They are all also in some way about friendship, the ways we relate to our loved ones, and a sense of shared understanding. […]

I did the recordings whilst I was staying at the Watford Mercure for a three-week pain rehab programme run by The Royal National Orthopaedic Hospital at Stanmore. It’s the only course of it’s kind in the UK, and the only dedicated programme offered to people with EDS (if you’re fortunate enough to be referred, as I was). Not everyone who does the course has EDS, and it was originally designed with spinal patients in mind, but has been adapted as Stanmore has grown as a specialist centre for EDS. I wouldn’t recommend the Watford Mercure to anyone (although their ability to cock up every dinner for three weeks in new and amazing ways was spectacular in a way) but the rehab programme was definitely worth it.

As ever, I came home to an enormous impossible backlog of admin and marking, and I haven’t had a chance yet to properly process everything I learnt, or to reflect back on the three weeks. What I can say, is that I now feel I have more of the tools and knowledge I need to help myself in the future, and to avoid the downward spirals of injury and de-conditioning that have made me more ill in the past. Also, that looking after myself needs to be a priority, not an afterthought. May is EDS awareness month, and though I’ve been talking to a lot of people about my experiences, I thought it would be useful to write something too, even if it is brief.

I was very nervous before starting the course. Like most people with EDS, and indeed, many people with chronic conditions, I’ve had a lot of bad experiences with healthcare professionals. I try not to expect the worst, but it’s hard not to worry, especially when it is such a large chunk away from your usual life. I read a few accounts of the course on blogs and facebook groups to try and find out what to expect, as we weren’t given much information before hand, and they all seemed to say the same thing: the course is great if you’re willing to change the way you live, and awful if you’re not ready to think about that.

One of the best things about the course was the group of women I was with. We should have been in a group of eight, but one didn’t show, and the seventh sadly had to leave early because of complications. The six of us who were left bonded really well, which made the difference (as we often spoke of, mid dinner-disaster) between spending the weeks crying in our rooms, homesick and in pain, and crying with laughter together. I got the giggles so badly one day during our ‘water-based exercise session’ that I was crying into the over-treated water. We all remarked on how relieving it was to be around people who – whilst they might not understand the particularity of your personal pain – understood you were in pain, and could recognise when you were struggling, without you having to articulate it. I feel very lucky to have met them all.

The Watford Mercure is a remarkably ugly and poorly laid-out hotel: a post-war labyrinth of broken ceiling tiles and unnecessary steps. It is on a bypass road, and benefits from being completely unreachable by public transport. Our group in our various states of fatigue and pain felt very trapped there, with the disastrous food, the malfunctioning coffee-machines, and the world’s slowest stair-lift between our chair-using group member and the lobby. We joked about feeling like we were in Girl Interrupted. Although there was something about the whole thing that made me think of school too (not just the giggling and the crumbling building). It felt like a low security prison crossed with a summer camp for mutants with unhelpful powers. By the second week, we’d realised the only thing we could reach by foot was a McDonald’s  right next door, which could at least supply us with snacks and drinks. When I broke out one morning through the permanently propped-open fire exit, and stalked across the needle-strewn car-park, I found a horse tethered on the patch of grass between the hotel and the drive-thru.

IMG_0296

One of my fellow internees wrote a blog post about the programme a few weeks ago, which says pretty much what I wanted to say. The days were a mixture of groups activities and talks, and one-to-one physio and occupational therapy sessions. The PTs and OTs were humane, human, and helpful (on the whole). This shouldn’t be an unusual combination, but all of us had experienced otherwise in the past. As I’ve said before, this is one of the most important things to remember about people with an under-diagnosed condition like EDS – we have all been written-off, gas-lighted and insulted by medical professionals at some point in the past, if not continually, for decades. We’re the rescue-cats of patients. It’s no good telling us anecdotes about patients having different views of their treatment to their doctor, and expecting us to side with the doctor (no names mentioned!).

Apart from meeting the others, the physiotherapy was the most useful part of the course for me. We all went away with physio programmes tailored to our needs, and I certainly felt the difference immediately. It is up to us to keep working on what we have learnt. The most important thing the programme teaches, however, is around the tricky idea of acceptance. We were all there because we have chronic conditions that cause pain. We weren’t there to eliminate pain from our lives, or to reprogram our genes like neolutionists. We were there to learn to turn huge peaks and troughs of pain and activity into rolling hills  or gentle waves – to live more comfortably – not to ‘get better’. A lot of what we talked about was how we can change our lives to make them less disabling, and to remove factors from them which make us more ill than we need to be.

There is a lot more I could say about this in relation to trying to function in academia with chronic health issues, and the insidious ableism of Academe, in a week when many friends and colleagues are striking for better pay and working conditions. Instead, I need to get back to my marking, to pace it a bit better than usual, and try and not let it hurt me too much.

 

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’.

IMG_3400_2

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.

 

IMG_7815
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

 

woods
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.

 

IMG_2023.JPG
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.

 

IMG_2638