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When the Sick Rule the WorldWhen the Sick Rule the World by Dodie Bellamy
My rating: 5 of 5 stars

This is an amazing, shocking, moving and brilliant book. I’ve found myself returning to some of the essays multiple times. I’m slightly obsessed with the essay ‘Phone Home’ in which Bellamy shares the death of her mother through the frame of watching the film E.T.

Bellamy’s sparing use of punctuation and paragraphs can sometimes make the text look dense and impenetrable on the page, but when you get into it, her use of em dashes and commas replicate the experience of racing thoughts and create an immersive experience. I also gained a lot from reading the essays out loud, (to my dog, so I didn’t feel stupid). There’s something about Bellamy’s prose that is given to verbalisation.

A great model for my own essays, and thought provoking in content. Also, a good book to take with you to hospital and doctors appointments to freak out the medical staff. Just look up slyly every so often, with a secret half smile. Keeps them on their toes.

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This article originally appeared on the Alliance of Self-publishing Authors website on 29 November 2017.

In October 2015 when I was forty-one, following months of chronic pain and loss of physical ability, I was diagnosed with a rare, incurable, autoimmune disease called granulomatosis with polyangiitis (GPA). GPA is a type of vasculitis which only affects 500 people in the UK each year, less than 1% of the population. Vasculitis is caused by inflammation of the blood vessels, and the type of vasculitis is defined by which blood vessels are inflamed. In my case, it was the small blood vessels and capillaries.

Rituximab - the chemo drug that saved my life.

In GPA, your immune system targets the sinuses, nerves, joints and blood vessels, attacking and destroying them and causing systemic inflammation. If left unchecked it will then start to attack the kidneys, lungs and heart. After that, it’s Game Over. My immune system destroyed my nerves, leading to the loss of use and sensation in my right hand and foot, a partial loss of use and sensation on the left side, and the destruction of my nasal bridge leading to a ‘saddle nose deformity’.

I had an overwhelming urge to use this awful experience to help others not feel so alone. I wanted to increase understanding about autoimmune conditions, living with an acquired disability, and going through chemotherapy. Issues of identity and self-worth surfaced, and I needed a way to explore them.

As a writer, I only know what I think when I write about it, so I started writing about my experiences. When I began my memoir, I assumed I would be writing a straightforward, chronological narrative about how I became ill, and my steps towards recovery. But as I started working on it, I realised that wasn’t going to work for a variety of reasons. Where would I start the story, for instance? Before or after getting my dream job running an organic market garden, where I became ill? And, more importantly, where would it end? I’m still not at a stable point in my recovery which would feel like a satisfactory endpoint and resolution for a reader.

Physical requirements also affect form. People with chronic illness often find it hard to concentrate on longer narratives due to tiredness and brain fog. Reading books in paperback and hardback is difficult for me, due to the nerve damage in my hands causing weakness and pain when holding a book. I much prefer reading on my tablet, or listening to audiobooks. In this way, my illness has shaped the way I engage with my reading, and it changed my writing processes too.

One of the hand splints I had to help increase my mobility after my wrist drop.

I find that I am much more drawn to reading and writing essays and short fiction which I’m able to break down into manageable chunks. I can still achieve a sense of satisfaction on completion, without struggling through longer narratives.

With these considerations, I decided to use the personal essay form for my memoir, as it seemed more accessible. Instead of the reader having to plough through a chronological narrative, I can offer them ruminations on a wide variety of topics. The reader can be more present with me in each of my experiences and areas of thought. As a writer, I can be more fluid and lyrical in my writing.

The lyric essay form is particularly good at expressing pain, something which eludes capture, as essayists such as Eula Biss and Sonya Huber have explored. More intense pieces can be resolved quicker than they might be within the context of a longer narrative, causing the reader less empathetic discomfort. This avoids the danger of it becoming a misery memoir, or of “wound dwelling”, to quote Leslie Jamison in The Empathy Exams.

By structuring my memoir as a collection of personal essays, a reader can dip in and out, focusing on what resonates with them, but still achieving readerly satisfaction. When you’re chronically ill and suffer from fatigue and pain, small wins like this are important. You feel like you’ve achieved something; a feeling which can be sadly lacking. By creating these shorter pieces of writing, I’m aiming to reduce the isolation which can be experienced when you become ill and/or disabled, and that’s important to me.

My puppy Molly at 12 weeks old, sitting in the basket on the front of my mobility scooter. So cute.

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#100days of writing

A writing challenge started by the fantastic woman and author Jenn Ashworth. Writers are turning up to the page everyday for one hundred days and sharing their progress on social media (fb, insta and twitter) using the hashtag #100daysofwriting.

Most people started on 1 August, but I was late to the party, starting on 5 August. So while everyone else is a quarter of a way through today, I’m celebrating a fifth of the way.

I’m not putting any specific word counts on my daily output, just the practice of turning up to the page (or screen) everyday, even if it’s just scratching out a few words, or adding to my research.

I’m coming up with so many ideas for my memoir / essay collection just through the daily discipline of turning up and working for as long or short as I’m able.

I’ve submitted three of my short short stories for one anthology today (I’m not sure if they qualify as flash fiction or not, but I like calling them short shorts as it makes me think of Daisy Dukes). I’m thinking about my plans for this year’s Chester Literature Festival. I’m planning a piece on Wool and Wellness for Wovember. I’m working on my Self-ish essay, and have started note gathering for a new essay, loosely called Callous, which has arisen from my reading and writing as part of this challenge. The Video Games essay and the Drag essay are also floating around, occasionally calling for my attention.

I feel productive. This is good.

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The Women’s Quilt project

Calling all my crafty people, can you help with The Women’s Quilt project?

“598 women were killed by a current or former partner in the UK between 2009 and 2015. That’s approximately 2 a week. The plan is to create a quilt made of patches with their names on, ideally for IWD on the 8th of March, this means patches need to be finished before March.”

There’s a facebook group which is co-ordinating the quilt project: The Women’s Quilt. In it you’ll find a pinned post with all the details and a list of the names which still need making.

Please share amongst your networks, and I know we can help them complete it for IWD!

Here are some of the patches which the project has received so far (photo by Roxanne Ellis in The Women’s Quilt Facebook Group).

Finished patches for The Women's Quilt project.

 

Lisa Margreet | designer | writer | author | image

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Pain is transformative. I’ve spent months crying on the floor, raw as an exposed nerve as my body destroys itself. There were months when I couldn’t sleep, and now months where I can do nothing but sleep.

In the pain place I moan animalistic, like a woman in labour. At the end, at least she gets to hold her baby. I have nothing except more nerve damage, or another hole in my nose. When I emerge, I’m bleached white like the bones of long forgotten warriors, my body occasionally ticking like a car bonnet as it cools down. No tablet can contain that pain, it’s too big, too all-encompassing. My dignity can’t contain it either.

As I lay on my hospital bed feeling the pain build, I knew the pain song would come as surely as the tide coming in. A voice joined in with mine, moaning in unison, but isolated in her own pain place. I cried and moaned, shaking my hands and feet. I swallowed tablets that the pain laughed at as it possessed my body. I closed my eyes and opened them again to the pale faces and wide eyes of my loved ones. The blank, unsmiling but not unkindly faces of the doctors and nurses. Expressions that told you it was bad, but also that you were “making a scene”, making them feel uncomfortable.

This night, when the new woman they wheeled in had joined her pain song to mine, both of us were as oblivious to the restraining looks as two wolves howling at the moon.

Afterwards, when my pain started to diminish and I slowly returned to myself, I became aware that day had turned into night. I reached out a tentative toe to see if this gentle movement would send sparks of pain fireworking through my nerves, but it had passed for now.

Outside the sphere of my pain, my senses started to return. The new woman was keeping up her lone litany. Voices and words started to form meaning again. “It won’t be long now,” a dour-faced doctor said to the concerned husband and son.

Embarrassment prickled my insides. I’d been lost in my pain place howling at the moon, not bothering to hide my pain, while she lay dying beside me. Of course I’d been dying too, that’s why we were all there. But so well internalised were these feelings of keeping it all tucked up inside, with subsuming myself for the comfort of others, that my return to sanity brought with it the ingrained rules of female decorum in a public place.

I lay exhausted, face down in my hospital bed, my hospital nightie constricting my shoulders where I’d thrashed and turned, burning out my own nerves. I kept still and let the acidic pins and needles, ever present in my hands and feet these past few months, pulse their beat of life. Or was it death. Or was it all the same?

My bed neighbour sang her last note, alone.

As my pain ebbed and I dipped in and out of sleep, I heard movements from behind the curtain. Her husband appeared and said “She’s gone” to the nurse. She nodded and went into the curtained bay with him.

Drifting in and out of the exhausted place on the other side of pain and painkillers, I felt bad that their last memories of their wife and mother would be sound-tracked by my song of pain.

Fragments of conversation drifted over from behind the curtain.

“No, only her wedding ring…”
“Only two choices then… Finger… Hack it off…”
“Or hack the ring off…”

“What’s he talking about?” Said a voice close to my ear.

I opened my eyes. I couldn’t see anyone, but the tone of voice was one I recognised from my pain song. She was still here, confused as to why her husband was talking about hacking off her wedding ring, or worse.

Consciousness was fading away from me but instinctively I reached out my mind and heart to where I imagined she was and wrapped her in white light. I sent her feelings of love, safety and happiness. I told her it was okay to let go and move on. As I tuned out to nothing I used my dissipating thoughts to push her on, with love. It was an instinct that only comes in those true moments of living. The white points between Life and Death. The In Between.

When I next woke up it was at the urgent insistence of the acidic pins and needles turning up the volume to Eleven and fitting a bear clamp on my right calf muscle. I realised that I’d had my only ever words of wisdom from “The Great Beyond”. The Other Side had a message for me and it was: “What’s he talking about?” It seemed somehow appropriate.

*****

This is extracted from my memoir “Transformations” which I’m currently writing about my recent diagnosis with a rare autoimmune condition, granulamatosis with polyangiitis (GPA), a type of vasculitis, my subsequent disability and my recovery journey. 

My new best friends. My gold zimmer and sparkly granny slippers.  All my octogenarian ward mates are well jealous! The other day, Lena from the bed next door borrowed it and forgot to give it back. Then she got annoyed with me when I asked for it back and

Lisa Margreet | designer | writer | teacher | farmer | image 

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