Shadow Dispatches

There is currently a campaign running to seek Plastic Free Community status for Grasmere, the village in the English Lake District where I live.

The campaign largely follows the guidelines laid out by Surfers against Sewage, who have an accreditation scheme which asks communities to aim for 5 objectives:

2018 was my first full calendar year of freelancing, an implausible dream when I decided, after my academic contract ended in August 2017, to try it for six months and see how far I could get. Just before the close of 2017 I found out I’d been chosen as one of the writers to be mentored in the second year of Penguin Random House’s WriteNow programme, to help me work on a prose book about living with chronic illness. I began the year thinking that I’d just concentrate on trying to write the book, but it filled up in unexpected, lovely ways, and turned into a year of readings, discussions, and workshops, of meeting new people and catching up with old friends.

This is a brief digest of the year and what it held for me, where it took me to.

My year began with a series of needle biopsies of an awkward but apparently unimportant nodule in my thyroid, which wasn’t the most pleasant start, but improved with a trip to Aberdeen to meet members of the Aberdeen University Swing Dance Society and write a poem about them, for a project co-organised by Voluntary Arts Scotland and the Scottish Poetry Library. Dance was one of my great loves as a child, but also one of the first things I was forced to give up because of joint problems when I was still in primary school. I was worried in lots of nebulous ways about this trip and the commission. Could I even do it? Would it be too upsetting? But the group were amazing. I learnt dance steps, a lot about why dance is important to people, didn’t pay too much for it, and got the beginnings of the poem stepped out during the trip.

February was the month I lived in a library. I wrote a short account of the month for the Gladstone’s Library blog which I hope gives some sense of what a disconcerting, productive and social time it was. It was the first time I’ve become emotionally attached to a desk, and I still daydream about my corner in the library. The residency also gave a validation to my gamble on forgoing regular paid work to give more energy to writing. On the way to Hawarden I stopped off at Lancaster Royal Infirmary to have my first venesection for a while, after a problem communicating with my consultant. Not the normal way to begin a residency, but it was at least on topic for what I was writing about when I was there.

Early March always means StAnza to me now, and it was a delight to be there for the whole festival, and reading from Basic Nest Architecture. Some of us even dipped in the sea at castle rock (literally a dip for me – far too cold to put shoulders in safely) which in over twenty years of visiting is the first time I’ve more than paddled there.

The following weekend I raced against the mini-Beast-from-the-East to get to Leeds for my event with Zaffar Kunial at Wildlines festival. The snow fell thickly as we sat in Leeds Library discussing poetry and the world around us. It was amazing to come out to find a deep swathe of it over the city.

The next week held the first big London meet up for WriteNow, which was both encouraging and slightly terrifying. By the time I caught the train home I realised I had a kidney infection, which had been building up since StAnza, and would take the rest of the Spring to get over properly.

I was kept busy with the first couple of my Read Regional readings (Hebden Bridge and Hartlepool Libraries), and finalising the text for my new pamphlet, With Invisible Rain. I had another venesection which finally brought me properly into ‘maintenance’, the zone where our iron stores are considered low enough to need monitoring, not constant treatment. I would only need one more this year, in July, to keep my levels low.

May held another Read Regional reading (Hexham Book Festival), a delayed and long-awaited trip to London to see Hamilton, and the launch of With Invisible Rain (New Walk) at Five Leaves Books in Nottingham.

May is always one of my favourite times of year in the Lakes. Bluebell season, the first warmer swimming days. This May two of my favourite swimming companions visited at the same time, just as the weather started to turn hot, to coincide with the Pavilion Poets reading at The Wordsworth Trust.

Blissful!

Maise, Emily & I being ‘otters’ according to our friend’s mum watching from the bank

Emily Hasler reading from ‘The Built Environment’ (Pavilion) at The Wordsworth Trust

I was back in Nottingham again at the end of the month for a conference, at which I gave a paper about environmental writing, ecopoetry and ableism for the first time. I started to have B12 injections and realised how much my low B12 levels as a teenagers must have contributed to my fatigue and deep lethargy. They don’t by any means take away the pain and fatigue, but they do reduce it, and it’s impact. The frustration I felt thinking about how much difference it would have made to me back in 1997 was counterbalanced by the relief at finding something that does actually help.

June began with my last Read Regional event (Keighley), continued with some schools workshops around Cumbria for National Writing Day and a talk at Keswick Mountain Festival about disability and outdoor writing for Waymaking, and ended with a trip to Vancouver Island for the biennial ALECC conference.

A Solstice Dip with Elizabeth-Jane Burnett, with Heron Flypast

We squeezed in a few days at the end of the conference on Salt Spring Island, where we had stayed in a cabin next to a lake, surrounded by Hummingbirds. It was genuinely magical and I can’t stop thinking about it, about those hummingbirds, about how amazing it would be to have time to sit at a table like that with them flitting about you and just write.

On the way home we had to dash between ferries with our cases and I pulled something out in my elbow which didn’t click back into place for two and a half weeks, during which time I couldn’t straighten it properly, incase you thought I was having too much fun.

We came back to the beginnings of the infamous heat wave, and a request that I step in and run a workshop for the Rural Writing Institute, after the programmed poet had to pull out for personal reasons. This turned into a real highlight of the year. I spent the day on the farm with the participants and came away so full of ideas and passion.

I also began working with the Wordsworth Trust’s Outreach programme, running a workshop with West Cumbria Carers. To prepare, I joined in on one of their Poetry and Paint workshops run by Cumbrian artist Alison Critchlow: a whole Saturday once a month of experimenting with ink and paint. Getting to know the group, and being given the space to do something creative that wasn’t work, made this one of the highlights of my year too.

I had set aside July as a writing month, knowing I didn’t have much paid work booked in, and hoping I could get a first draft of my nonfiction book finished. The first half of the month was scorching – two full weeks of blue skies. It was hot couldn’t drink my coffee unless I iced it. It was even hot in the house. I swam through clouds of damselflies. I know the heat wave had devastating effects for some animal and insect populations, but in Grasmere everything seemed to thrive. I’ve never seen so many insects, including this blue which I’ve not seen here before.

Inevitably, it took me twice as long to finish my draft (like any building project), and I sent it off to my mentor at the beginning of September. But I did it – 74, 000 words at that point.

Meanwhile, the rains had started, I’d spent my birthday driving to Stirling to meet with a scientist, Blaise Martay, who I was collaborating with for the Magma Climate Change issue, done a guest reading at the delightful Garsdale Retreat and caught up with my old friend Rhian Edwards in the first time in a decade, and gone back up to St. Andrews for a family gathering. I took myself off to Spain and wrote 12, 000 words in a week and went almost entirely nocturnal. I came back to find I’d received a grant from the Society of Authors to help me finish the book, which would allow me to go on some research trips, and also support me over the coming months.

September began with Kendal Poetry Festival, followed by a visit by Jackie Morris to Grasmere, which was another implausible joy. I bought a wetsuit in the sales with the determination to swim all winter. I took on the design and teaching of a Creative Nonfiction course at Cumbria University, and Will and I went back to Canada to follow up with some author and publisher interviews in Toronto, and for a conference he was speaking at in Ottawa. We managed to get to Toronto just in time for Word on the Street, and I was so impressed by such a large literary festival, with author talks and readings, and craft talks, all free to attend.

Lake Ontario

Monarchs at the beaches

At the beginning of October we had Whitney Brown in Grasmere reading from her memoir Between Stone and Sky, and I got to interview James Rebanks on stage at Borderlines book festival as a last minute stand-in for Hunter Davies, when he was taken ill.

The following weekend held the Edinburgh launch of Spark: Poetry and Arts Inspired by the Novels of Muriel Spark, one of several anthologies I was really proud to have work in this year.

Then on the 20^th I travelled over to Stockton to perform a piece on in/visibility, disability and shadow portraits for the Deranged Poetesses series run by Apples and Snakes North, on Crones.

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

Before the end of October I managed to squeeze in my research trip to Rathlin Island and the Antrim Coast – my Haemochromatosis road trip – following the trail of ancient holders of the same mutations that make me overload my body with iron. It was a stormy week, and I ended up with the B&B to myself on Rathlin for two days when my hosts couldn’t make the crossing. Visiting in October meant that for those two days, I seemed to be the only tourist on the island. When I walked to Rue Point to see the seals I passed no other human on the road or the paths. I’d like to go back in Puffin season and see Rathlin busy and bustling, and get a glimpse of the fabulous birds, but I know I’ll miss being the only person on the path.

Travelling by yourself with chronic illnesses is always a bit frightening – what if something goes wrong? What if I need help or can’t get home? I took things slowly and factored in rest time, and was lucky that nothing went awry. I kept wondering why I hadn’t done this journey before – it was so easy to drive through Dumfries and Galloway to get the ferry – and the coast was so beautiful – then reminded myself. I was only able to do it because of the grant I’d received. The ferry crossing was convenient and simple, but astoundingly expensive, especially when compared to the crossings we’d taken in BC earlier in the year. I was left baffled as to how people who have to commute regularly manage it. It was a privilege in many ways to make the trip.

November was another month of schools workshops and literature festivals, beginning with  Poetry in Aldeburgh (after which I was lucky enough to get to swim in Emily Hasler’s beloved river with her), via a research trip to Creswell Crags, then a trip to London for another WriteNow meet up, a reading in Grasmere by prize-winning local novelist Amy Arnold, launches of the new Cumbrian poetry anthology This Place I Know and the Waymaking anthology at Kendal Mountain Festival, and the new Beautiful Dragons anthology Watch the Birdie, culminating in a poetry reading at Bookcase in Hebden Bridge.

Emily Hasler in the sea at Aldeburgh

In the sea at Aldeburgh

In Emily’s river.

Emily in the river.

December followed on in a similar pattern, with schools workshops and reading events, including a visit to talk to Creative Writing students at Leicester University, and a guest slot on Radio Cumbria’s Arty Show. We came to the end of the first full year of the ‘Discover Poetry’ reading group, which runs once a month in Dove Cottage. I finally managed to see orthopaedics about a problem with my left foot I’ve had since breaking my toe last year, which means that January will once again be a month of needles and further tests, but we made it through (if it’s not tempting fate to say it too soon). There we are – or here we are – another year over.

I’ve written the first draft of a difficult prose book, a great deal towards a second poetry collection, published a pamphlet I didn’t think anyone would consider, and got better at talking openly about things I’m afraid people might not want to hear. In doing so, I’ve found communities and kindness I’m unspeakably grateful for, and I’m going into the next year a little less afraid.

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.

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.

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:

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.

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.

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.

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 …

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.

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.