Polly Atkin

shadow dispatches

Test your metal

June 4-10th 2018 is World Haemochromatosis Awareness Week. 

Haemochromatosis is the (slightly misleading) name for Iron Overload, whereby iron builds up in the body to toxic levels, and is stored in the organs, leading to long-term and eventually irreversible damage.

The genetic form – known in the UK as Genetic Haemochromatosis (GH) and elsewhere as Hereditary H[a]emochromatosis (HH) – is caused by a number of genetic mutations, which have a prevalence in the UK of around 1 in 200 people. That’s pretty common for something most people have never heard of.

If you read the title of this post and thought ‘she’s got her metals and mettles muddled’, two things:

  1. It’s a pun, and an instruction. You don’t have to like it, but you do have to think about it.
  2. Metal and Mettle were once variant spellings for the same thing, it’s just we began to separate their usage: ‘metal’ to refer to the non-human material, ‘mettle’ to refer to the human, your character, what you are made of.

    But what if testing your metal is also testing your mettle? Do you know what you’re made of?

    I used to think I did, as much as we ever do, but then I found out I’m stacked full of metal which shouldn’t be there. I’m like a human scrap yard, full of rusting machinery, slowly poisoning the land and water.

One of the things I’m trying to do since my long-delayed diagnosis with Haemochromatosis in 2016 is talk about it as often as I can, as well as writing about it. My hope is that the more people know about it, the fewer will have to wait years for a diagnosis like I did, and the greater understanding there will be of the condition both by the general public and by medical professionals.

A lot of the barriers to diagnosis at the moment in UK actually centre around lack of information for medical professionals: not realising how common it is, the many various and vague ways in which it can show itself symptomatically, the fact it doesn’t just effect older people and post-menopausal women as has long been taught, but people of all ages. The fact it is not just a ‘liver disease’ but can affect any or every organ. The blood markers are raised ferritin levels and/or raised transferrin saturation – two of the many different ways of measuring iron levels in the body – neither of which are tested routinely in the UK. If they are tested, the results are often not understood as indicating GH, especially in the early stages of loading.

So much emphasis is put on making sure you keep iron levels up to avoid iron-deficient anaemia, that very little thought is given to Iron Overload, and that the symptoms – pain and fatigue – might look very similar on the surface, and also look like a lot of other conditions. In some ways, GH is a chameleon condition – because it can affect any and all of the body’s workings, it can show itself in many strange and different ways that  look baffling to most doctors. If you come in with itchy skin, an unseasonable tan, fatigue, mood changes, a sore toe, and absent periods or erectile dysfunction, and no apparent abnormalities in your test results, what average GP is going to put that together and say “aha! GH!” My hope is that in the future, this will be something every GP considers when they are presented with a patient who has multiple seemingly unconnected symptoms.

The lack of awareness of GH and its presentation is one of the many reasons I find the guidance and push towards using Medically Unexplained Symptoms as a ‘diagnosis’ deeply dangerous. You have to be absolutely 100% sure you’ve asked all the right questions if you’re going to sign people’s lives away under ‘no answer’.

At the moment I’m working on non-fiction book under the Penguin Random House WriteNow scheme which explores living with chronic conditions and chronic pain, reflecting on my experiences of living with hEDS and GH, both pre and post diagnosis.

I’ve also been experimenting with different ways to explore chronic illness in my poetry, especially ways to talk about pain and the repetition involved in chronicity. My new pamphlet With Invisible Rain shows some of the ways I’ve been tackling about it, and I hope a lot of this will feed into my second collection.

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With Invisible Rain includes three poems from a sequence I’ve been working on called ‘v/s’, which is the shorthand for venesection: the opening of the vein to, in this case, take blood.

In order to get rid of our excess iron, people with GH have to have pints of blood taken out. It is the only treatment for GH, and essential to save us from further problems down the line. The idea is that this makes our body release the iron stored in our organs to make new red blood cells. In some cases it can reverse organ damage if done early enough.

It can be a long and arduous process. Some people feel fine after venesection, others feel really ill and take days to recover. Some people get their pints out weekly, or even twice a week. I got mine taken monthly, because my recovery time was slow due to the autonomic dysfunction I have as a co-morbidity with EDS, including PoTS. This is treated by trying to keep blood volume as high as possible, as well as changing activities to avoid blood-pooling (eg. not standing still, not showering, especially in the morning, doing counter-manoeuvres like pumping your calf-muscles when you go from lying to sitting to standing). Mostly this means drinking a lot of water and eating a lot of salt, so you can see why having regular pints of blood taken out is a problem. I spend all this time trying to put liquid in, and they take out a huge chunk – probably 1/9th of my total blood volume – all at once. After the first horrific month, where my autonomic symptoms were back to the worst they were pre-diagnosis, I started having a pint of saline put in one arm as the blood comes out the other. This doesn’t erase the problem, but it helps.

I finally reached ‘maintenance’ – the state where the iron is low enough to just keep an eye on, or ‘maintain’ – in April, over two years after I started venesection. Now I get to see how quickly I reload, and if any symptoms vanish or change.

Two of my ‘v/s’ poems have been published this month in Gush: Menstrual Manifestos for Our Times from Frontenac Press in Canada, and one was on And Other Poems last year, so they’re getting out there.

My GH was picked up during a run of tests by the gastroenterologist I saw when I was first diagnosed with EDS. Without her, I still wouldn’t know. I’d still be getting sicker and sicker and not know why; would still, most likely, be being told that it was nothing, or not real, or that I was imagining it all or creating it myself through my patterns of thought or behaviour. This is how many people with multi-systemic conditions are treated, and women, and especially women from black or ethnic minorities, queer women and trans women are even more likely to be dismissed as creating or imagining their symptoms. There are some excellent books about how gendered  (and racist and classist) these responses can be coming out of the states at the moment, and I’d recommend reading:

Michele Lent Hirsch’s Invisible 

Maya Dusenbery’s Doing Harm

Abby Norman’s Ask Me About My Uterus 

Porochista Khakpour’s Sick

This is my plea to you for World Haemochromatosis Week.

If you think something is wrong, trust yourself. You know your body. Keep asking. Keep questioning. Don’t take ‘medically unexplained’ as an answer. It’s not an answer. It’s a muzzle. It’s state-sanctioned gaslighting.

If you’re a medical professional and you have patients you’d class as experiencing Medically Unexplained Symptoms … don’t. Look harder. What are you missing? I’m sorry, but you are missing something. Think outside your biases and your teaching. Keep learning. Don’t be afraid to admit you don’t know. Don’t give up on your patients. They need you to believe in them. Your belief will save lives.

Diagnosis matters.

Pass it on.

And test your metal/mettle.

news

In the next few months I have work coming out in two shiny new mixed-genre anthologies, and a new poetry pamphlet.

The first of the anthologies is Gush: Menstrual Manifestos for our Times, which is edited by Ariel Gordon, Tanis MacDonald, and Rosanna Deerchild, and published by Frontenac House in Calgary. My contribution is a couple of venesection poems, from a sequence called ‘v/s’ (the shorthand for venesection) which I began writing back in January 2016 when I started treatment. One of the things that delayed my diagnosis with Haemochromatosis (genetic iron-overload) is the misconception that women don’t begin to load iron until after the menopause, because menstruation manages it. It should be needless to say that not all women menstruate (regularly, much, or at all) for a variety of reasons – one of which, ironically enough, is iron-overload – so it’s particularly frustrating to me that many medical professionals keep hanging onto this outdated belief. The anthology includes prose, poetry, flash, non-fiction, graphic memoir and more. And it looks like this, which is amazing:

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The second anthology is similarly multi-genre, and will be published by Vertebrate in the autumn. Waymaking: an anthology of women’s adventure writing and art seeks to redress the gender imbalance in published nature and adventure writing. There is a domination of the field by able-bodied white men, and there is a lot of work to do in bringing more voices forward. The poem of mine that is included comes from a really bad time pre-diagnosis, when my world had shrunk and shrunk down to the house and a few metres around it that I could just about get to and from.

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I find the ableism implicit in a lot of outdoor and landscape writing really excluding. When it does address health issues or disability, it tends to do so from a ‘nature-cure’ angle, which is as problematic as the focus on ‘summiting’ and extreme activities. It’s great to celebrate the achievements of the body, and particularly to re-centre some women’s ability and drive to push their bodies to excel, but it’s also really important to remember that some bodies are being pushed to and beyond their limits by really basic things, like making a drink, or going to the toilet. I don’t need any more challenge, thank you very much. I’d like to just lie on a squishy mossy knoll in the sun, and listen to the birds.  To me it’s really important that in addressing the gender imbalance in outdoor writing we don’t just recreate the same imbalances, but with women too.  The full list of contributors gives a hint of the variety of perspectives and approaches that will be included in Waymaking, and I hope it will go towards helping to widen the field: 

Jean Atkin | Polly Atkin | Camilla Barnard | Hazel Barnard | Sandy Bennett-Haber | Jen Benson | Judith Brown | Claire Carter | Genevieve Carver | Imogen Cassels | Maria Coffey | Lee Craigie | Joanna Croston | Lizzy Dalton | Nick Davies | Heather Dawe | Cath Drake | Paula Dunn | Lily Dyu | Caroline Eustace | Hazel Findlay | Paula Flach | Anna Fleming | Nikki Frumkin | Claire Giordano | Alison Grant | Geraldine Green | Lilace Mellin Guignard | Alyson Hallett | Melissa Harrison | Leslie Hsu Oh | Kathryn Hummel | Katie Ives | Kathleen Jones | Mab Jones | Solana Joy | Dr Judy Kendall | Anja Konig | Tami Knight | Tara Kramer | Dr Alexandra Lewis | Tessa Lyons | Bernadette McDonald | Anna McNuff | Helen Mort | Evelyn O’Malley | Sarah Outen | Kari Nielsen | Libby Peter | Jen Randall | Penelope Shuttle | Ruth Wiggins | Allison Williams | Pam Williamson | Deziree Wilson | Krystle Wright

There is a kickstarter for Waymaking through which you can support the project, and all royalties will be split between the John Muir Trust and Rape Crisis.

I’m aware all of this looks like I’ve been really busy, and in some ways I have: I’ve been doing a lot of readings, and I’ve been working on new poems for a second collection (which I hope won’t take too long to emerge into the world) and on the non-fiction book I am being mentored for through WriteNow. I almost forgot to mention one of the really fun things  I’ve done over the last few months – visiting Aberdeen University Swing Dance Society to write a poem about why they dance and what it means to them for My Time – a project devised by Voluntary Arts Scotland with poets from St. Mungo’s Mirrorball. I was really nervous about visiting the group, for many reasons, largely to do with my own complicated history with dance and disability, but they were so welcoming, and so enthusiastic. I learnt a lot, and not just dance steps. All the poems from the project have been put together in a pamphlet and will be shown in exhibitions around Scotland this year.

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Photo by Adam MacMaster

The two above anthologies have both taken much longer than initially expected to come together, and it’s a coincidence that they’re coming out within a few months of each other. My new pamphlet, on the other hand, has happened at superspeed as far as most things in poetry go, accelerating from first talks in February to launching next month.

With Invisible Rain is being published by New Walk Press, in parallel with a new pamphlet from Alan Jenkins. We’re having a launch at Five Leaves Books in Nottingham on May 22nd, so do come along if you’re in the area.

I’m especially delighted to have a cover image by Kim Tillyer, whose cyanotypes using the Lake district landscape, light and foliage seem particularly appropriate. There is a lot of found work in the pamphlet, equals parts Lake District rain to bodily pain, a few deer, and some blood.

 

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Meanwhile, people have been asking me questions, and I’ve been trying to come up with coherent and useful answers. Arusa Qureshi interviewed me amongst a cohort of amazing female poets involved with this year’s StAnza; Richard Smyth asked me some questions about nature writing ahead of the Wildlines festival in Leeds for The State of the Arts, and Chrissy Williams included me in a fascinating series of interviews about first collections.

One of the features of having memory problems that I really hate is not being able to think of the names of things/people on the spot, no matter how much they matter to me, so it was good to be able to spend a bit of slow time thinking about the answers to these, especially the ‘who are you reading now’ type questions. In live-time, my mind goes completely blank when someone asks me this, as I was reminded in both a job interview and a poetry reading recently.

As the year goes on I’ll be doing more readings both from Basic Nest Architecture, and from With Invisible Rain, and talking about different aspects of writing, the Lake District and Chronic Illness at a couple of conferences. In May, I’m talking on ‘We Must Learn to Speak of What we are Made Of: Writing at the Intersection of Pathography and Place’ at Orientations in Nottingham, and in June at ALECC 2018 in Victoria, Vancouver Island, I’ll be talking on ‘Dorothy’s Rain: Findings in Dorothy Wordsworth’s Unpublished ‘Late’ Journals’, which links directly to With Invisible Rain.

After the summer I don’t have much planned though, and I’m open to suggestion …

 

 

Keep on discovering poetry all through the year …

For poetry-lovers and the poetry curious in and around the Lakes, the good news is that the Discover Poetry reading group I’ve been facilitating at the Wordsworth Trust since the autumn has been given the green light to continue. Thanks to everyone who has come along, whether for a single session when you’ve been visiting the area or for as many as you could make – it’s your enthusiasm which is allowing us to continue.

The sessions are free, and take place in Dove Cottage by the fireside on the first Thursday of every month. In March we even had a canine attendee, who was pleased to find a portrait of a distant relative on the wall.

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As – hopefully – we come out of the snowy season, we may even hold some sessions in the cottage garden. That seems a distant dream on a dreich day like today, but I’m assured that Spring can’t be that far behind all this Winter.

The bad news is that by the time we got the go-ahead, I was already booked up for a Read Regional event which clashes with the April session. The good news is that Eileen Pun has agreed to stand in this month as a special guest, so if you can come along on Thursday April 5th you get the double joy of Aprilish poems and Eileen.

Amongst many other accolades, Eileen is a fellow of The Complete Works, won a Northern Writer’s Award in 2015, and is also an accomplished martial artist and maker. Local people may have attended some of her fantastic Taiji and Journalling workshops at The Wordsworth Trust in Summer 2017.

You can find out more about Eileen and her work here and here.

You can find out more about Discover Poetry and read the poems month by month here.

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Happy Birthday, little book.

Basic Nest Architecture is one year old today, or hereabouts. Hasn’t it grown? And what a lot of teeth.

Way back before I ever held it in my arms, I said I’d share my BNA playlist, so I thought it was about time.

As with all my playlists, the basic rules are just that they have to be made from songs I already have. Some of the songs here actually appear in some way or other in the poems, but some are quite oblique connections that probably only really make sense to me. There’s a couple where I couldn’t choose one song over another eg. ‘Strength in Winter’ has Basia Bulat’s ‘Once more for the dollshouse’, which was instrumental (boom boom) in the writing of it, and used to give it its epigraph until it got squished off the page, but also ‘Lion with me’, which I can’t separate from it since Jenn played it at the book launch. Some are cheating slightly: two of the rabbit poems have a variant mix of one song, not because I don’t have other rabbity songs in my music banks, but because that song and those poems are really wrapped around each other for me.

There are a lot of repeats of artists here, just like there a lot of people I listen to a lot, and were listening to a lot during the writing of the book, who don’t appear. I had difficult decisions to make over for eg. which songs I love that feature deer to choose. It probably says something about the collection and/or how I think about it that the playlist is strummy and a bit melancholy on the whole.

 

Colony Collapse Disorder – To the Country, Laura Veirs

Buzz Pollination  – Honey, Tori Amos

The New Path  – The Wrong Side, Thea Gilmore

Jack Daw –  Magpie to the Morning, Neko Case

A short history of the moon  –  Calling the Moon, Dar Williams

Heron/Snow  – Follow the Heron, Karine Polwart

Kindling – Cloud on my tongue, Tori Amos

Stay Apparatus – White Horses, Jenn Grant

Roadkill Season – Pheasant feather, Josh Rouse

Miracles of Light – Woman King, Iron & Wine

Lake Fever – Lake Fever, The Tragically Hip

When I lived alone  – Sound and Vision, David Bowie

Sister, Running – Run, Basia Bulat

Rabbit in morning – Rabbit Heart, Florence + The Machine

Athena Glaukopis  –  This Tornado Loves You, Neko Case

Illustrations of Grasmere Church  – The Bell, First Aid Kit

Potnia Theron  – Crystal Creek, Dar Williams

Waking the Well – Cool water, Laura Veirs

A history of flooding  – The Water, Feist  // Flood, Rae Spoon

In the city I was born in – Field Below, Regina Spektor

Moon Salutation – I wish I was the Moon, Neko Case

Strength in Winter – Lion with Me, Jenn Grant // Once More for the Dollshouse, Basia Bulat

Moving – If it Rains, Basia Bulat

Dreams – In My Dreams, Jenn Grant

Tiny Glass Horses – Tiny Glass Houses, Amelia Curran

Rabbit in Twilight – Evening, Wilderness of Manitoba

Other People Dream of Foxes – Portions for Foxes, Rilo Kiley

 Fox Confessor Brings the Flood, Neko Case

Fox in the Snow, Belle and Sebastian

Foxes Mate for Life, Born Ruffians

Doll Parts –  Doll Parts, Hole

Perihelion – Night Still Comes, Neko Case

Dreaming the Organ – Playing to the Firmament, Dar Williams

Gloria – Paradise Mountain, Jenn Grant

Sky, falling – Heavy Ceiling, Said The Whale

Solistitial – Summer Fires, Wilderness of Manitoba

Begin – In the Blue Moonlight, Joel Plaskett

The Centre – Mtn Song, Evening Hymns

Rabbit in hiding – Rabbit Heart (Jamie T and Ben Bones remix)

Cannulation – Adventures in Solitude, The New Pornographers

Causeway – On My Way Back, Tony Dekker

Imaging – Heavy Ghost, Kashka

Fog/Fox  – Red Fox, The Choir Practice

The Glorious Fellowship of Migraineurs – Pray Headaches away, Diane Cluck

Free Night – Galaxies, Jenn Grant

The Test – When Under Ether, PJ Harvey

With Feathers – Heart of my own, Basia Bulat

The Canon of Proportions – Man, Neko Case

The Invisible – Leave My Body, Florence + The Machine

Untethering – The Fighter, Jenn Grant

Hope Cove – The Cape, Martha Tilston

Basic Nest Architecture – Wasps of Rain, Laura Veirs

Year of Libraries

2018 seems to be panning out as a year of libraries for me. I’m gearing up for my month at Gladstone’s Library in February, and can now reveal that Basic Nest Architecture was chosen as one of New Writing North’s Read Regional books for 2018. The Read Regional scheme pays for writers to do events in libraries around the North, bringing talks and workshops into communities.

I’ll be doing several events, mostly with this year’s other Read Regional poet, Anthony Dunn:

Hebden Bridge Library, Cheetham Street, Hebden Bridge, HX7 8EP
Thursday 29 March, 7.30pm (Exploring Poetry Workshop at 6.30pm)

Community Hub Central, 124 York Road, Hartlepool, TS26 9DE
Thursday 5 April, 5.30pm (Exploring Poetry Workshop at 4pm)

Robinson-Gay Art Gallery, 3A Market Street, Hexham, NE46 3NS
Wednesday 2 May, 1pm (Part of Hexham Book Festival)

Keighley Library, North Street, Keighley, Bradford, BD21 3SX
Saturday 2 June, 3pm (Exploring Poetry Workshop at 2pm)

The range of books chosen is fantastic, and I really enjoyed hearing about them when we all met up in the Autumn: from crime to historical fiction, nature writing, innovative children’s fiction, a superb feminist picture book, and poetry of course. I’d highly recommend getting to some of the events if you can. Sadly, the fabulous Jenn Ashworth couldn’t be there on the day we all gathered at the Lit and Phil in Newcastle. I think someone should photoshop her into this group shot.

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I’m also doing an event in Leeds Library on March 17th, as part of Wildlines @ Leeds Library. Though Wildlines is not directly to do with Read Regional, its linked by association, as it’s being organised and hosted by one of my fellow Read Regional authors, Richard Smyth. I’ll be reading with Zaffar Kunial on the Saturday evening, but the whole three days of events looks fantastic, asking questions like ‘Who gets to write about nature, and why? Is there a place for politics in nature writing? Does the North have the nature-writing it deserves? And why does nature writing matter?’