Category: Chronic illness

When is it right to write? When is it right to share?

In the early years of my writing life, which began in 2000, a year into major life changes due to illness, a friend suggested that I should write about the experience. Maybe a magazine article; people might be interested. At the time I was writing poems full of self-pity and anguish. I couldn’t physically write for long, and the thought of a long article mining my pain and difficulties was beyond me. More than that, I wasn’t ready to write it. When you’re in the maelstrom it’s enough to cling on to the wreckage, to survive, without processing what’s going on and turning it into art.

Some eight years into the illness, my then partner, now husband, set up a website for me, an earlier version of this one, and I started blogging about living with chronic fatigue syndrome. There was a lot reaction to the posts, not all of them welcome. Let’s just say that I am allergic to offers of miracle cures, and if one more person suggests a drop of lavender on my pillow as a cure to the sleep problems I have endured for 14 years… There were also snide comments on how I seemed to be doing a lot for someone who is supposedly ill, as if I were making it up. I don’t need to justify or explain, but whilst it may appear that I am doing a lot, I work in small chunks of time, often only 20 minutes a day, and take rest in between.

When my site was updated about a year ago I decided to ditch the chronic fatigue page, to make the site more about my poetry and stories, and blogging on whatever took my fancy. Living with chronic fatigue syndrome has only come up once, when I wrote a post on living through the harder days.

14 years after my friend’s suggestion to write an article, I wrote the script for a talk I gave to Kent Writing and Wellbeing Network. A member of the group looked it over, and thought it was publishable, so I pitched it to a couple of magazines. It was taken up by Writing in Education, the journal of the National Association of Writing in Education, and published in Spring 2014.

Here is an extract:

It was a time of great loss – of work, health, relationships, financially and most of all a loss of place in the world. I had defined myself by my work, particularly during the years that my marriage was not fulfilling me, and that was gone.

There was a paring down of friendships. Some had liked the Maria who danced at the front when we went to gigs; they could not cope with who I had become, and neither could I cope with having lively, chatty people around me. Visits and phone calls exhausted me. My voice was weak, and even holding a phone was too tiring.

One of the greatest losses was that of words. I couldn’t read for long, or watch a film without losing concentration or falling asleep. I struggled for the right words to describe things I saw – everyday words.

It felt risky, particularly exposing the rifts between me, members of my family and close friends from whom I decided to separate during my illness. I took shelter in the fact that none of them were likely to read the article or hear me speak on the subject.

Maria prepares for her talk: ‘Low Energy High Creativity: Discovering Writing through Illness’ in the yurt at A Few Wise Words

In April 2014, I gave a talk at the Few Wise Words festival in Canterbury. The angle was how discovering writing has helped me to survive the enormous changes in my life as a result of my illness, and how, without exaggerating, writing saved my life. The audience was invited to ask questions, to share their own experiences and to engage in writing exercises. By revealing ourselves we make ourselves vulnerable, and my story liberated others to share theirs.

As the talk ended, a queue formed in front of the small dais where I sat. I felt like some kind of guru as people revealed their own experiences of illness and family difficulties. The most poignant was a woman who asked if writing would help her terminally ill daughter-in-law. She had so much anger, I was told, and was struggling to express it.

Sharing this kind of thing comes with responsibilities, to the people around me affected by my illness, by my decisions to separate from family and friends. If I had written too soon, I would have been full of blame, and I am not blameless. I wrote letters, told people just what I thought of them and why I didn’t want to see them. I was not tactful. I discovered that most people would prefer not to be told ‘the truth’ as I saw it. There was a time when I felt ashamed of those letters. In my defence, I was chronically sleep-deprived: 18 months of sleeping no more than 3 or 4 hours a day – it sends you crazy; you can’t tell the difference between waking and dreams; I was verging on mania. Someone who had been through mental health difficulties said to me, ‘Those letters saved your life.’ That’s probably true. I do, however, accept responsibility for the hurt they caused. Apologies were sometimes as unwelcome as the letters. For many, things are better left unsaid. I can understand that, but for me leaving things unsaid, unwritten, means illness and living an inauthentic life. But what I have learned is: you don’t have to share what you write; the act of writing is enough in itself.

Back to the queue of people waiting to talk to me after the Few Wise Words event, there was a responsibility for me to listen, to empathise, but not offer advice. My way through was messy, unplanned. My way may not be another person’s way. Who knows if the terminally ill daughter-in-law would find writing helped her deal with her anger? All I could say was that writing is not for everyone, but if she did write, she might want to decide what would happen to her journal after she died. The mother-in-law could offer to do as the woman wished with it, to destroy it, if that’s what she wanted. The writer must be free to write without awareness of a reader.

There is also a responsibility to myself, to be authentic in my writing, whether I share it or not, and to protect myself from others’ reactions to my story. To be empathetic, but not to listen too long and take on the emotional baggage of other people’s stories. To recognise that I need to protect my health, my limited energy, to repel those that offer miracle cures. To remember those things that help me and those things that don’t. And to keep writing.

Wordsworth described poetry as ’emotion recalled in tranquility’; the same goes for writing an article, preparing a talk, sharing experiences. Written too early, shared too early, the anger and blame of my letters and poems showed through and hurt others. 15 years on, experience is filtered through self-knowledge and seeing things from other people’s viewpoints. There are still some people I would not like to read the article I wrote; nonetheless, I had it published. Here is a writing prompt from the article:

I would like to write about…

But I am afraid to because…

Nevertheless I shall…

 

Getting through the harder days – remembering what helps

When I updated this website a few months ago, I decided to remove my blog page on living with Chronic Fatigue Syndrome. I don’t want to be defined by my illness – I am a writer who happens to have an illness. The writing is the most important part. But today, I have been struggling. I am perhaps still recovering from an event last Saturday where, ironically, I spoke about writing my way through chronic illness.

At this talk, I spoke of often failing to follow my own good advice on managing the illness. Have I done that this week? Whether or not this is the case, I am just feeling plain fed up of having to manage it at all. As someone said to me this week, someone who also has a debilitating illness, ‘In my own head, I think I can rule the world,’ but we can’t, and it’s bloody frustrating.

The temptation is to do nothing, but doing nothing just makes my back hurt and makes me feel depressed. So I try to do something, and to remember what helps. Today, that was getting out for a little while with my husband, for a coffee and a brief look in a couple of charity shops, but not being tempted to stay out too long. I was rewarded with a cute new pair of blue suede shoes (£5), which will be just right for a couple of new outfits, one of which is a silk dress I bought for a fiver on another such trip. Then, on the way back home, I had a craving for fruit, so nipped into Sainsbury’s for one of those ready-prepared pots of exotic fruit. I don’t usually buy fruit this way, but a quick fruit hit was needed. Sometimes the guilt of hurting the planet by buying things with too much packaging has to be outweighed by helping myself.

I laid down on the sofa as soon as we got home, and asked my husband to get the lunch, battling my usual urge to soldier on, unpack the shopping, unload the washing machine etc. We had good food, when junk food would have given me a quick rush and then a crash, so I was thinking well. And then, a sleep under a duvet on the sofa, the cat curled up at my side, followed by writing this post.

All those things have helped – getting out, being in company, not overdoing it, small treats, asking for help, eating well, rest, but most of all the writing of this post. There, I’ve shared it. It’s out of my head and onto the page, and now I don’t feel so bad.

Another thing that has cheered me is  Pauline Masurel’s review of As Long as it Takes for The Short Review, which you can read here.

I shall go back to resting now – promise!

A Few Wise Words, and in praise of short stories

I am giving a talk … in a yurt! I am wildly excited about this, having experienced the Wise Words’ yurt as a punter last year.  A Few Wise Words is a mini-festival of words, music and film on the weekend of 4-6 April 2014, with most events taking place in a yurt in Greyfriars Franciscan Gardens, Canterbury.

My talk is Low Energy, High Creativity – discovering writing through chronic illness. It takes place on Saturday 5 April at 11.00 a.m. Find out more and book tickets at £5 on the Wise Words website.

I was at the Save As Awards in Canterbury on Sunday, and was pleased to come away with 3rd prize in the prose awards for my story ‘How Beautiful’. This is available to read on Writers’ Hub. All the shortlisted stories and poems were of a high standard and truly diverse. It was a happy evening, listening to the other writers, plus readings from judges Sonia Overall and Abegail Morley.

I was, however, surprised to hear a comment to the writer of one of the shortlisted stories, ‘I hope you are going to develop this into a novel’. A short story and a novel – you might as well compare an elephant to a pencil sharpener. Short stories are not novel extracts, or the beginnings of novels; they are complete in themselves.

In many ways, writing short stories is harder than novel-writing (this is me speaking as someone who has tried and given up on novel-writing, so I am sure novelists will put me straight). I share below some quotes on the short story, which I gathered for a workshop I delivered on the short story at the Canterbury Festival in 2013.

‘A story is a way to say something that can’t be said in any other way, and it takes every word in the story to say what the meaning is.’ Flannery O’Connor

A short story is ‘fundamentally about character. The plot of a short story is nothing more than an unfolding of character, or perhaps the unfolding of a couple of characters. That’s the beauty of the form, the terrific sense of intimacy it can offer us.’ Alison Macleod, from ‘Writing and risk-taking’, Short Circuit, a Guide to the Art of the Short Story (Salt Publishing, 2009)

‘In his essay “A Short History of the Short Story”, William Boyd suggests that its defining feature – namely its length – is the source of its curious appeal. Its virtue is its brevity and its pull. There is no time for the gentle build; the writer’s chance to display his or her gift is as brief as that of the TV talent show contestant … [Boyd] likens Woolf’s comment about the deceptive ability of a photograph to enhance the picture of life to the short story’s capacity to enlarge our view of the world. “This gives us, I think, a clue to the enduring power and appeal of the short story – they are snapshots of the human condition and of human nature and, when they work well, and work on us, we are given the rare chance to see in them more than in real life.”’ Mariella Frostrup in The Guardian, 21 September 2013

I’d also like to add a few words about how a good piece of writing differs from a short story.

A short story has: A BEGINNING, A MIDDLE, and AN END. It TELLS something: it has a point  – why the story is being told.

A short story has a SHAPE – it starts with CONFLICT, builds up via a series of complications to a CRISIS, then a RESOLUTION and a falling away.

Watch this wonderful video on You Tube – Kurt Vonnegut on story shapes.

Join the mailing lists of Thresholds and of Short Stops who are ‘getting excited about short stories in the UK and Ireland’.

Morning pages may not be the artist’s way

I’ve been writing morning pages for several years, using Julia Cameron’s guidelines in The Artist’s Way: write first thing in the morning; three A4 pages (though I use an A5 notebook, and three pages of that is enough for me); and whatever comes out of your head goes on to the page. Then I went to a journalling session with poet John Siddique at the Wise Words festival in Canterbury. This was a chance to get together with other writers in a coffee shop. John led the session with a short talk, then we all wrote in our journals for half an hour or so.

John’s talk turned my thinking about morning pages right around. He had followed Julia Cameron’s advice and had pages of negativity, covering the same ground over and over again. I too have notebooks mostly full of negative and angry stuff as a result of tipping anything in my head onto the page. I look back on these notebooks and wonder who this angry person is. I can do nothing with this material. It does not bring me on creatively.

John went on to talk about how he had been journalling around the book The Seven Habits of Highly Effective People by Steven Covey. How he journals about the roles in his life, and how well he is fulfilling them. Some of my roles are mother, wife, friend, sister, grandmother, stepmother, writer, editor etc.

John’s talk changed my thinking and my life. I got hold of the book, read it, and began using my journal in this way. No more negativity or covering old hurts again and again. I spoke to my counsellor about it, and she wondered whether the early morning negativity is to do with the bad thoughts that can invade if you are awake for long periods in the night. I have long-term sleep problems, and regularly battle with this problem. Maybe by writing first thing, these night demons are still around.

I felt angry with Julia Cameron for pushing her way as the best way. As well as the ‘write anything at all’ commandment, there are the write by hand and for three A4 pages commandments. I don’t think my writer friend with severe cerebral palsy would be able to follow this advice, as she can only write using a keyboard. Those of us with fatigue can perhaps write a page, or half a page on bad days.

I have been using my journal in the way suggested by John Siddique for four months now, and there has been a big change in my mental health. This may be coincidental, but I don’t think so.

I recommend The Seven Habits of Highly Effective People. It’s mainly offered as a business book, but has a lot of significance for everyone. It has changed the way I interact with people too.

I have added a lot more non-fiction to my reading, and find many of these books spark my creativity in a way that reading other people’s poetry and fiction may not. For example Daring Greatly by Brene Brown. You can watch her TED talk on the power of vulnerability here.

Maybe it’s the recovering Catholic in me – I don’t do dogma. Julia Cameron’s way is not this artist’s way. 

 

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