Category: Chronic illness

A violin with a rose on the tailpiece

The smell of rosin takes me back to being eight years old, when I started to learn the violin. The rosin is a hard amber lump, wrapped in cloth inside a dark red box. I tighten the bow by turning the screw on the heel, rub the rosin up and down the taut hairs, testing the bounce on my hand before playing.

The violin has new strings; the old ones were in a bad state. The instrument hasn’t been out of its case for years. I tune the strings: A D G E. The intervals are ingrained in my memory, from when Miss Moss would hit A on the piano. We tuned that string first, then the others by ear: A D G E, the highest-pitched string last. Karen Jewell had pitch pipes, one for each note: A D G E. I had a recorder at home, to blow an A with two fingers on the top holes, thumb over the hole at the back.

There were six of us that started together at St Joseph’s school – Karen Jewell, Sharon Corr, Kevin O’Doherty and me. The names of the others escape me. We hired three-quarter sized instruments at first. Then came the time to buy a violin. There was a bus ride to Ashtead from Epsom, with my mum, then a walk down several streets until we reached an ordinary-looking house. A man showed us to an upstairs room where there were violins for sale and waiting to be repaired. The one I chose had a small rose on the tailpiece with an inset of mother of pearl. 

I practised in the bedroom, alone. I cried because it sounded horrible. I couldn’t get it right. The tears flowed freely in my hormonal teens. Practising for grade exams, year on year, at which I got steadily worse: Merit, Pass, Pass, Fail. I sat in the waiting room to take my grade exams, a low-ceilinged, wood-panelled room. My mum was with me, but then I had to go in alone. There were prepared pieces to play, sight-reading, scales, an interval sung (or was it played?) by the examiner, which I had to name. A third – While Shepherds Watched. A fifth – Baa Baa Black Sheep. No reaction from the examiner. One was a lanky man who remained side-on to me throughout the exam. He didn’t look at me at all. His chair was tipped back, his feet on the desk, he barely acknowledged that I was there. I remember the shape of that man, his trousers with turn-ups, his feet crossed on the desk. I see my fingers on the strings, the bow moving up and down.

Then the wait, the brown envelope with the results. The marks for different pieces, sight-reading, aural tests, the overall result: Grade 1, Merit; Grade 2, Pass; Grade 3, Pass; Grade 4, Fail.

Miss Moss saw me through all those exams, up to Grade 4, except she rarely turned up for lessons in the two terms before my last exam. She had married that year, and the story my mother told was that Miss Moss couldn’t be bothered, was more interested in her husband. She could have been ill; but we were never told. She didn’t return at all the term after I failed Grade 4. There was a man in her place when I went for my lesson. I didn’t take to him, found him scary. ‘I wouldn’t have put you in for Grade 4 if you weren’t ready,’ he said. In retrospect, a reasonable comment, but I wasn’t used to failure. That shameful word on the folded paper, ‘Fail’, was enough to tell me that I was no good and should give up playing.

I was in a Maths lesson when the music teacher hauled me out of class. She seemed angry. ‘What do you think you’re doing, giving up the violin?’ she said. I mumbled something about getting a job in Woolworth’s after school. Said nothing about my developing interest in boys – no time for the violin. She looked furious, turned away in disgust, stomped off down the corridor. I think she was trying to tell me that I was good at the violin, not to give up on music. But people didn’t say that kind of thing in the 1970s. No one ever said it at home, that I played well. It was years later, maybe twenty years, that my mother said, ‘We used to listen to you downstairs. It sounded lovely.’ One word of encouragement might have saved me from giving away my violin to my brother, who had started learning by then.

The violin I play today belongs to my daughter. It’s still hers, if she wants to claim it. She used to practise in her room, but also downstairs, in front of me and her sister. She had lessons until she was 18, the summer before she left for University.

I manage some scales. A few off-key notes, but the fingers of my left hand remember where to go on the strings; the fingers of my right on top of the bow, by the heel, the thumb beneath. My wrists tire quickly. Chronic Fatigue does that to wrists. I pack the violin into its case, loosen the hairs on the bow and tuck it into the slots in the top of the case before clicking it shut. The violin is staying downstairs, to be played a little a few times a week. I won’t be playing alone, shut up in a bedroom.  I shall play along to records, find folk tunes to practise. I won’t be taking any grades.

Sew it goes, embracing wonkiness

When I began these posts in the theme of Little Big Steps, little did I know how small my steps would become, how small the majority of our steps would be. A few days before lockdown, I took the risk of going to my oldest friend’s funeral. The advice on social distancing, at that time, was less stringent. And the sorrow we all felt at losing one of the kindest, loveliest people I have ever known led to grabs of hands, consoling hugs. Then, within days, a brother fell ill, then my husband, then me. Nearly 5 weeks into (probable) COVID-19, little steps are all I can take, still plagued by breathlessness and fatigue caused by the virus piling an extra bag of sticks onto the heavy bundle I always carry due to twenty years of Chronic Fatigue Syndrome.

This is the longest thing I have written in five weeks. I have had little energy and little desire to write. Some days, all I have written in my journal is the day and the date, trying to keep track of some measure of normality, to know where I am.

My creativity has gone in another direction, towards sewing, a little bit at a time, using remnants given to me just before lockdown, stored in a box that I received from my eldest daughter for Mother’s Day, when we went for a socially-distanced walk along the banks of the River Medway. My last proper outing before self-isolating.

I didn’t learn sewing at home. My mother was a furious knitter, clicking at speed in her armchair whilst simultaneously watching telly. I never got the hang of it, the tension either too loose or too tight, stitches dropped, wonky ‘squares’ abandoned on the needles. But I did like sewing, beginning with cross stitch on those stiff oblongs of fabric with large holes in them, at primary school, appliquéing a felt seahorse onto fabric that became a swimming bag when I was in top class.

Grammar school knocked some of the enjoyment of sewing out of me. Excellence, striving for perfection, that was how it was, for all topics, and I soon learned that you only got help with things if you were already really good at them. Why support the girl who was struggling with sewing in straight lines, the girl who managed to stitch the skirt she was making to the skirt she was wearing? Why help me when there was the brilliant sewer who was performing miracles with an embroidered, ruched bodice and puffed sleeves? That other girl could get an A in O-Level Needlework, whilst I would have the subject removed from my school timetable as exam year approached, along with Music, which I also loved. I would do much better in languages, was forced to do Latin to help with my French and German. After all, at Rosebery County Grammar School for Girls results were everything.

Whilst I had no help at school, rather stern looks and disappointment from the teacher, I took a full-length skirt I was making to Mrs Field, my church choir mistress, who lived in a ‘big house’ and not only had a sewing machine but a sewing room! Mrs Field and her daughter Rosemary spent hours with me, showing me how to convert yards and yards of material into a ruffle to go on the bottom of my maxi-skirt. Long stitches and careful and even gathering made a floor-sweeping triumph when I wore it to the next Irish dance at Surbiton Assembly Rooms. They had patience with me, gave me one-to-one attention, and never made me feel inept and stupid, like I did in Mrs Whatshername’s class at school.

I took up sewing again when my daughters were small. I left them in a crèche at South Greenwich Adult Education Institute whilst I joined a sewing class. I was in my early twenties, and most of the other women were in their forties, fifties and upwards. I learned a lot about the menopause in that class. But, mostly, I learned how to make clothes for my children, complicated soft toys (my Mickey Mouse was a great success, once I unpicked the tail I had mistakenly sewn on his front and placed it on his bum) and made patchwork panels, which were added to quilts that were raffled at the end of each term, a panel or two by each class member stitched together.

Sewing became my sanity and insanity. After the girls were in bed, I would work on ‘just one more square’ of a patchwork bedspread, which led to another, and saw me sitting up into the night. I still have that bedspread, some 35 years on, now a picnic blanket.

These days, my sewing has taken on a free-form aspect. From the years of accurate pattern-following and precision-cutting and stitching of formal patchwork, I have discovered crazy patchwork (quick and easy by machine) and folded patchwork (takes longer by hand, but it is forgiving to inaccuracy and mistakes).

A couple of months ago, I found a book in Oxfam, The Coats Book of Embroidery, from 1978. This is where I discovered folded patchwork, and I am learning new embroidery stitches, techniques like whipping and interlacing, adding different colours to the base stitches. I look at the diagrams, skim-read instructions, make my own wonky way, deciding on what I am making and how to make it, with what, long after I join the first two pieces of fabric. It is a lot like the way I write, never plotting or planning, not knowing how it will end. But it’s a heck of a lot less frustrating than writing. There are no abandoned drafts, though there has been some unpicking and restitching, much like editing a piece of writing. I now feel I can just enjoy sewing without Mrs Whatshername looking down her long nose, over the top of her glasses, when I was in Class 3M at Rosebery. As for making an embroidered, ruched bodice, I don’t care for it, actually. I am making a folded patchwork rainbow with wonky embroidery and experimenting with inlay appliqué, thank you very much. No-one will be marking it or inspecting it for faults. It will soon be hanging in my front window, along with the other rainbows and hearts in the street.

The importance of rituals, candles and dogs

I was raised Catholic, as was my best friend Karan. I loved the rituals of a Catholic service, the ‘smells and bells’, and the sung Latin Mass. I knew the meaning of the words long before I learned Latin, translations from the English prayers that we chanted each Sunday and at primary school on a daily basis. The chanting meant that we didn’t appreciate the meaning of the prayers, and this was highlighted for me once, when I went to Mass in Ireland, and the service was garbled by the priest and congregation in double-quick time. It felt like everyone had done their duty, and could then get on with cooking the Sunday lunch or whatever.

In my teens, I started to skip church, choosing to spend an hour with my boyfriend instead. Until I was discovered passionately kissing my boyfriend goodbye at a bus stop. Caught by my father, he said nothing at the time, or at any other time. It was passed to my mother to deal with the embarrassing incident. ‘Snogging’ was the word she used, with a facial expression of disdain, so that I have associated the word with ‘a bad thing’ ever since. So back to church I went. When I reached 15 and had a different boyfriend, I was not allowed to see him on a Sunday unless I had gone to Mass and eaten a roast dinner at home first. Mass meant nothing to me by then, and hadn’t done for some years, and when I turned 16, I stopped going to church.

What I have held onto, though, is the ritual of lighting a candle, either in a church, a cathedral, or at home, and ‘praying’, in my own way, for friends and relatives who I feel need positive thoughts. I have other rituals, too, of my own making. Whether these help the person concerned or myself I don’t know. Perhaps they are something I perform for my own benefit. I do feel that rituals and ways of marking change are important.

My mother died two years ago. We had been estranged for many years, and I did not feel I wanted or needed to go to her funeral. To put it plainly, the thought of doing so filled me with great anxiety. I knew that I would only be going to put on a show, to please those who thought I should be there. Grief is hard for everyone, but it is a strange thing when you have been estranged. I discovered that there has been some research on ‘disenfranchised grief’, where it feels, or other people feel, that you have no right to be bereaved. This can happen when an ex-spouse dies, for example. I did feel  alone in my grief, and different from my siblings who had remained in touch with our very difficult mother, and indeed cared for her in her later years. I decided to hold my own wake for Mum. A few friends attended, I read something I had written about my mum, others read poems and sang songs. There was food and drink. Although none of these people knew my mum (except my husband, who had met her briefly), it was tremendously supportive, and I did feel that I had made my own ritual to mark Mum’s death. I also lit a candle while her funeral service was happening, when I was at home.

Karan, my best friend from my childhood years, died this week. It had been expected for the past 10 months, but is nevertheless a huge blow. During her treatment for a brain tumour, I sent her a Dog of the Week every Saturday. Karan loved dogs, and it was a way of keeping things light, but letting her know that I was thinking of her. The rules I made were that each dog must be able to fit in an envelope and must be posted on a Saturday morning. Each week I searched for dogs in card and gift shops, or made my own – I made an origami dog, found a wooden key ring at a craft fair, and a small felt dog in a gift shop on Brownsea Island. In the cards I sent each week, I would make up a name for the dog and a little story about them, and repeat the same text every week at the bottom of the card: ‘Dog of the Week is brought to you, dear Karan, to cheer you on and cheer you up during treatment, by your old mate, Cookie.’ Cookie was a childhood nickname, which only Karan and my two brothers still used. Now there are only two people in this world that call me Cookie.

I sent the last Dog of the Week on a Friday rather than Saturday. Karan died 6 days before her 61st birthday, and I had already made a card with a patchwork dog on the cover. I decided to send it to her family, with a note. I shall miss the ritual of finding, making and naming dogs, of going to the postbox each Saturday to send them. I have been lighting candles at home for Karan all week. Soon, that ritual will end, too.

Invicted – a guest post by SM Jenkin

I invited SM Jenkin to share her poem ‘Invicted’, as it lends itself to the theme of Little Big Steps. I know SM as Sarah – we were sister Medway Mermaids, part of a women’s writing group, and also share the experiences of being second-generation Irish women and living in the Medway Towns.

‘Invicted’ appears in her debut poetry collection Fire in the Head, published last year by Wordsmithery. It was also published in the anthology Please Hear What I’m Not Saying, edited by Isabelle Kenyon, a fundraiser for the UK mental health charity Mind, and runner up for Best Anthology at the Saboteur Awards, 2018.

Invicted

Victory
is getting out of bed, even though
it is past noon and everyone walking past
has seen that your curtains are
still closed

Victory
is having curtains in the first place,
and a net behind them, and
space to put them up and
keeping them there

Victory
is those sharp clean teeth and that cereal
that you swallow down and keep down
and the milk that is still OK to drink,
today

Victory
is remembering that above those sharp
teeth are lips that kiss, that shape
soft words:
you are allowed

Victory
is those clothes that keep you warm,
and those matching yellow socks
that remind you of
summer beaches

Victory
is making it beyond the chipped
front door today, and staying put
when they walk past, and see
right through you

Victory
is not telling them to go
fuck themselves, because really.
Who knows what their victory looks like;
is it anything like yours?

Victory
is going to bed and staying there,
not knowing if tomorrow is going to
be a victory day and
doing it anyway

____________

Over to Sarah, to tell us how she came to write ‘Invicted’:

‘Invicted’ was written as I reached one of the lowest points of my life, a culmination of what felt like a relentless conga-line of hurt and humiliations, large and small, and a couple of major health scares. It became difficult to get out of bed, to have any kind of energy at all; I didn’t want to do anything or go anywhere. It became hard to find anything to celebrate when it seemed like everyone else was surging ahead in their lives, and posting such happy pictures online. I was isolated and not meeting anyone. My life seemed small and grey in comparison. So, to compensate, I wrote myself a checklist for myself of the things I was able to do and why this was important. It started off more as a way of reassuring myself that I was managing to do something, to remind myself that I was doing something. That, yes, getting out of bed was an achievement. Yes, staying in the outside world once you managed to get there was an achievement. Yes, now that you’ve seen this you can celebrate and recognise that this is, after all, a common and shared life experience. That we do not know what other people’s victories look like.

I wrote that poem because shaping the words helped me to shape my understanding, and how important it is to recognise those small steps of achievement. Writing that poem became an achievement for me, and sometimes, when the bad days return, I can say to myself, Victory is getting out of bed. There’s still a hangover that any talk about weakness is not the done thing. I’m a poet. I’m not always going to stick to the done thing, especially now.

It was important to me to make a reference to HMS Victory, the ship built at Chatham dockyard, where my dad worked.

It feels to me that there is still a macho hangover in some parts of Medway. An idea that a victory is something that has a very narrow definition,  only applying to “wins” such as a conflict (large or small), a business win, a football match.  I wanted to explore and expand that definition for myself. That winning mindset is hard to shake off.

SM Jenkin is a second-generation Irish writer, a lover of science fiction and an editorial advisor for Confluence magazine. A former chair of the Medway Mermaids writing group, chair and founder member of the Medway St Patrick’s day committee, SM Jenkin is a regular performer on the Kent Live Lit scene. She has performed internationally, and has been published in numerous literary anthologies and magazines. Her debut poetry collection Fire in the Head was published by Wordsmithery in 2018.

Social media: @sajenks42  https://www.facebook.com/SMJenkinWriter

Little Big Steps, taking the first step

Since my last post, I have come up with a name for my project, which celebrates small achievements as good things in themselves, or as steps on the road to bigger things. The name is Little Big Steps – so far so good.

I had thought that this could become a book, or that I could start a new blog – something big. But the whole idea is to celebrate the small. So I am choosing not to follow one of the habits of highly effective people, as outlined by Steven Covey: ‘Begin with the end in mind’. (From The 7 Habits of Highly Effective People). Starting with something big in mind might mean that you never get started at all. It all becomes too daunting.

I have been thinking about how I get started on my writing, how I got started in the first place, nearly 20 years ago, when I was very ill and had severely limited energy. It started with a notebook, a gift from a friend. I wrote a little poetry in the notebook each day, typed it up the next day, edited it another day. Twenty minutes at a time was all I could manage. The writing was enough in itself, without thinking where it might lead to.

There are Boats on the Orchard, my latest publication, was not the result of starting with the end in mind. I was living in a house that backed onto a disused orchard, in a village that had been a major fruit-growing area; the orchards now disappearing or in decline. I had finished a story collection, which I had been writing for five years (also not started with a book in mind – a pair of stories sharing characters, which accidentally grew). I was not sure what to do with myself. I had a quote pinned above my desk, about when you finish a long writing project, it is as if you are falling from a tree, hitting off every branch as you come down.

It was a kind of bereavement, after living with those characters for so long. And after a bereavement, you have to carry on every day, putting one foot in front of the other. Putting new words on the page, even if they seem slight, even if it seems they won’t lead anywhere. So I wrote about what I could see from the window of my writing shed, and things I noticed as I walked the local orchards. Over time, those poems grew into something bigger – a commission for Wandering Words followed, and eventually a pamphlet, working with Sara Fletcher to produce images to illustrate the poems. It had long been an ambition of mine, to collaborate with an artist, and all this grew from seemingly slight scribblings in a notebook.

I guess the point of this is, you don’t have to begin with the end in mind. Just take a step and see where it leads you. For the time being, I have a name – Little Big Steps – and I have begun a new notebook, one that I have been saving for a while. I am jotting ideas, copying quotations from books and articles, and I have already asked a guest writer if she would like to share a poem of hers on this website, which fits the theme. More soon…

A well-turned ankle – thinking about feet and walking

I have just finished reading Baggage, A Book of Leavings, by Victoria Field. A memoir of walking the Camino de Santiago as a way of reflecting on and recovering from the end of a marriage. Earlier this year, a friend rang to say that he was going to be walking the Camino, or part of it, as he only he had two weeks in which to do so. ‘Are you going to find yourself?’ I asked, only half joking. This friend had been through a major health scare in the previous year, as well as his wife’s treatment for breast cancer the year before. He needed this trip. I followed his progress on Facebook, recognising the pain of blisters and fatigue, but also with envy. I couldn’t ‘do’ the Camino, unless someone offered to carry me in a sedan chair or on the back of a motorbike.

I realised that I had to make changes, make my own pilgrimage. And I keenly felt my inability to walk far, how I still miss going out for a trek 19 years into an illness that ‘put a halt to my gallop’, as my mother used to say. My mother died earlier this year. One of those things that makes you stop and reflect on your life. In the past two years, I have moved house, my husband had a heart attack, and I have lost a friend of a similar age to me. Lost as in died: let’s not sugarcoat it. I also lost the ability to write for a long time – now happily returning to me like an old friend whose company I have missed, but who often annoys the hell out of me.

Whilst reading Victoria Field’s book, I have thought a lot about feet as well as walking. There is a pilgrim with boots made especially from a mould taken of their feet, who nonetheless finds himself in excruciating pain. There are blisters, feet with flayed skin, and an account of a man who devotes himself, unpaid, to tending the feet of pilgrims by the side of the road. Before her pilgrimage, Victoria decides on a pair of ‘cheap and nasty’ boots that she has been wearing long before her trip, rather than shell out hundreds of pounds on a ‘good pair’, and these boots serve her well.

Maria at college, in her walking days

I have been writing recently about the difficulty of finding physical and psychological space, living in a large family in a small house when I was growing up. And I realised that I found that space when walking. It was always with a purpose, rather than going out for a stroll – to work; my Saturday job in Woolworth’s, or to college when I decided to leave the grammar school and go to an FE college to take my A-Levels. The school was yards from my house, and I had never experienced the bus journeys to school of my classmates, having also lived within a short walk of my primary school. When I told my mum that I was leaving the sixth form, during the first weeks of term, she firmly said that she would not pay my bus fares to college, so I walked at least one way every day – some three miles. I did this in plimsolls or flip-flops when it was warm enough to wear them. I had never had fitted or expensive shoes, and there was no question of buying good walking boots.

I got a certain rhythm whilst walking, and would pride myself on how far along the road I got before a bus passed me. Neighbours would often say that they had seen me ‘going hell for leather’ as they had passed on a bus. It was the only space I had to myself, between home and work, home and college, and I often walked late at night, coming back from parties or nights out. I was only ever bothered once, during these late walks, by some lads at the hot dog stand in town, and when one came over to me, I just mentioned my older brother’s name, hoping that they might know him, and was left alone to continue my journey.

Into my twenties and thirties, I continued to walk with a purpose, and found, after my marriage had broken up, that walking by the river and across the Rochester Bridge would help me to sort out things in my head. My body would loosen, my mood lift, and more often than not, something I had been trying to figure out would resolve itself as I walked.

Then illness struck and, slowed to a snail’s pace, I still walked until I reached a point of near collapse, like when marathon runners hit a wall, except the distance I covered was minimal. I was deprived of my way of creating space for myself, solving problems, feeling better. I dreamed of it still, of running for a bus, of walking, jumping, skipping.

I am treating my toenails at present. Stripped of their summer clothes of brightly-coloured varnish, I am tackling the thick and discoloured nails with a twice-daily lotion, applied like nail varnish with a brush. I have noticed that the nails on my right foot grow faster than those on my left. I have noticed the stripes on my feet from wearing the same sandals all summer: two broad white strips across the lightly tanned skin. The second toe on each foot is longer than the big toe. Someone once told me this is a sign of being psychic. My feet are quite long and slender, and I like the look of them. I think of the phrase ‘a well-turned ankle’. I think it was used at a time when women showed little of their legs, and a flash of an ankle could drive a man, or woman, to desire.

My ankle was well-turned in a fall down the steps of the house I used to live in. I sprained the ligaments in my left foot, which swelled up and turned from black to blue to yellow as the bruising progressed. This was some fifteen years ago, and I still get pain in that foot, that ankle, from time to time.

I no longer wear plimsolls or flip-flops. A year ago, I decided to take better care of that foot and ankle, and to buy better shoes. I spent £80 on a pair of comfortable yet stylish shoes, which are serving me well. My feet deserve it.

As for a pilgrimage, walking the Camino is not for me, but I am going to do some travelling in my sixtieth year. By train, mainly. I never had a gap year as a teenager, never went interrailing or grape-picking, and have seen little of the world. My aim, as part of my Sixty Firsts, is to ‘travel fearlessly’. The trips may be short and not as ambitious as others might undertake, but I shall be broadening my world, flexing my feet, and showing a well-turned ankle..

Anatomised – a life changed forever by Lyme Disease

A few years ago, I heard Andrew McGuinness read a story at the University of Kent. It was a funny tale, and his delivery owed much to stand-up comedy. McGuinness taught creative writing at the university, and at Christchurch, the other university in Canterbury. I saw him at many events, reading his own work, interviewing writers and hosting panels. And then I didn’t.

Anatomised coverLike Jack Mann (a stand-up comedian and the protagonist of Andrew McGuinness’s new novel, Anatomised), Andrew McGuinness was struck with a mysterious illness. I don’t like to assume that all of Jack Mann’s experiences reflect those of Andrew McGuinness. This is a work of fiction. However, my guess is that the research that has gone into Anatomised is borne of hard personal experience. The medical details, the intricacies of test results, and the psychological effects of having a life-changing illness that no-one can explain. Jack Mann is thrown from a comfortable life (albeit with family and bereavement issues in his background), having just relocated to the Kent coast, to a Kafkaesque nightmare of weird symptoms, hospital admissions and doctors who can’t see beyond their own specialties – stroke, MS – to alternative therapists who advocate positive thinking when the tinctures they give Mann don’t work.

I nearly stopped reading Anatomised, as Jack Mann’s experiences reflect some of my own as a person misdiagnosed, mistreated, disbelieved and ignored, both in the early days of my own chronic illness, and even several years on. The falling away of friends and relatives, the isolation, the unexplainedness of it all, the grief, the suicidal thoughts. Jack Mann, in a darkly comic scene, fails to throw himself on the right railway track, watching the train (which he has timed from hearing it pass at the end of his garden) speed past on the opposite track as he lays there, awaiting oblivion. My own (lack of) attempts were less dramatic. I walked by the river Medway several times a week, past some steps that descended into the water. I imagined stepping down and down to a watery grave. I never even took the first step down, but my dreams, when they came amidst years of barely sleeping, were of drowning, then a hand pulling me out at the last moment.

This isn’t a review. More of a reflection on lives that once were, altered forever – mine, Jack Mann’s, and Andrew McGuinness’s. And how writers can process their experience through fiction rather than memoir. McGuinness’s novel is not perfect – I felt the author’s anger at his mistreatment channelled through Jack Mann and his wife Alice. It was a little too noticeable at times. Would a reader who doesn’t know McGuinness’s story notice this as much as I did? Or a reader who hasn’t been through that kind of anger themselves, sometimes channelling it through poems and stories, which would have been better left until some of that anger had subsided? Perhaps a fictionalised account is the best one can do, given the closeness of the material, the pain. It gives the writer a distance from the awfulness of it all.

Anatomised has stayed with me, and given me a great deal of cause for thought. I read a lot, but needed a week before beginning another book, to process Jack Mann’s story, Andrew McGuinness’s personal story, and my own. I thought of it as I walked with my husband Bob on a recent holiday. Bob has only known me with my illness, as we met when I was some seven years into it. On this holiday, as I do in my daily life, I could only manage a couple of hours out everyday, then I slept and rested for the remainder of the day. ‘I’d understand if you wanted a wife who could walk further,’ I said, as I took Bob’s arm, struggling to walk back to the house where we were staying. ‘Nah,’ he said, ‘Think of all the bother of divorcing you.’ We laughed, but I thought of how holidays used to be, before all these years of illness; a third of my life lived like this.

I’m glad I didn’t take that walk down the steps into the river, because life is good, in spite of my limitations. I’m glad that Andrew McGuinness was able to recover enough, to fight enough, to give us Anatomised. It is lyrical and thought-provoking. I would particularly recommend the last few chapters, where … but I don’t want to give the game away.

Anatomised by A.F. McGuinness is published by  Red Sail Press and costs £12.99. A proportion of income from sales of the book will go to Lyme Disease charities.

 

Now there are more than Fifty Ways to Leave

We’ve all had break-ups. There’s the ‘It’s not you, it’s me’ scenario; there is often blame and recriminations of the other party, sometimes self-blame, whereby we examine what we have done wrong. There is usually some discussion, argument, sorting out of stuff – who owns the CDs, who gets custody of children and pets, a splitting of finances.

But what about friendships? In these days of social media, cut-offs can be swift and devastating. How easy it is to ‘unfriend’, to ‘block’ without discussion, leaving things unsaid, things unsorted.

When I think of friends I’ve left behind, they fall into different camps. We have moved apart physically, geographically, changed jobs, changed schools, just don’t get the chance to hang out anymore. I had my children when I was young, and lost many friends who were getting started on their careers whilst I was negotiating nappies. Natural progressions, my former mental health nurse called it when I mourned people I was losing at a time of great change, when chronic illness came into my life. I used to find it harder to let go than I do now.

There are friendships that end in a row. In hindsight, there were things wrong with those friendships from the start. I’ve examined why those people and I became involved. Was it that circumstances pushed us together when we had little in common? Were those things we had in common harmful?

Some friendships end with confusion. A friend I had been close to for many years suddenly starved me of contact. My emails, phone calls and texts all went unanswered. There was no incident before this, no indication of what was to come. Six or so years after she broke contact, I remain baffled as to what I might have done. It was painful for a long time, then I became angry. It was cruel to treat a friend that way. I deserved an explanation.

I am an explainer. I broke up with a very long term friend once. He had been around for so long, I accepted how things were between us, until new friends said, ‘Why do you let him treat you that way?’ I’d shrugged off some very unacceptable behaviour in the past, but when I came to look at your relationship, I actually didn’t like having him around. So I wrote to him and effectively ‘broke-up’ with him. He was hurt and didn’t see what he had done wrong, but there was no other way to do it.

Recently, I ‘unfriended’ someone on Facebook. Someone I have been fond of, but their comments on my threads were so much in opposition to my own thinking I couldn’t tolerate them anymore. Attempts at discussion went nowhere. It helps that I rarely see this person in real life; I know it will be awkward when I do.

I have been ‘unfriended’ twice in recent weeks, each time without discussion, though I can guess at the reasons. Both ‘unfriends’ are people I know very well, in whom I have confided in real life, and they have confided in me. These are acts of hurt and anger, which feel irreparable. In days gone by, they might have slammed doors or slammed down phones, or perhaps not spoken of their hurts. They might have kept away for a while; we would have made it up. But there is something final about wondering where your friend has gone, the friend that always ‘Liked’ or commented on your Facebook posts, only to discover that you have been ‘unfriended’, even blocked.

I can psychologise here. Perhaps these people grew up in atmospheres where it was not safe to discuss things openly. Perhaps there is a family history of cutting people off. Indeed, this is the case in my own family – aunts not spoken to for twenty years, people ignored in the street. It’s a strategy I have used, a learned strategy. Self-protection was an issue in some instances; in others, a lack of self-awareness as to what I was doing. It’s never to late to say sorry, I have found, and some of my previously cut off relationships have been restored, years after a break. True friends forgive.

Paul Simon wrote ‘There are fifty ways to leave your lover’. With social media and texts, there are even more. Separation and divorce involve a painful division of possessions, shared space, shared bodies. Friendship break-ups could, perhaps, go through the same process. It would help with the grief, allow people to eventually pass in the street, to think that was someone I was once close to, to wave and move on.

Walking, walking; writing, writing

On a cold Valentine’s evening, in a room above a pub where the old sash windows didn’t quite close, I heard Katherine Pierpoint and John Gallas read poetry. The week before, I went to the University of Kent to hear Katharine Norbury read from The Fish Ladder, her superb memoir, which was one of my favourite reads of 2015. What links all three, and got me thinking, is that travelling inspires their writing.

Katherine Pierpoint talked about winning a Somerset Maugham Award, which had to be spent on travelling, then read some poems, and recounted some tales, from her trips to India and Egypt. John Gallas – well, he just keeps moving, and the poems he read ranged from New Zealand to The Alphabet of Ugly Animals, which he wrote after seeing an exhibition at the Turner Contemporary, Margate. He has also worked on a book of translated poems from around the world, The Song Atlas, and read one from Tanzania.

Katharine Norbury walked and walked from the sea to the source of water. Will Self, he’s another one: walking, walking; writing, writing. And I wondered if there was something missing from my experiences, from my writing, because I haven’t been very far at all.

My writing came from enforced inactivity. It started a year into my illness, at a time where I hardly left the house. Journeys were short, and the I was only able to be away from the house for an hour or two. This is still the case, sixteen years on. I haven’t spent a night away from home in a year. I nearly did – to go away to a wedding – but I crashed the day before, and knew I couldn’t make the journey.

Yesterday, I went on a short trip alone. A ten minute walk to the station, a train ride of less than half an hour, and a wander round Rochester, where I used to live. It’s familiar, yet changing. The shops change ownership, a cafe where I used to write every Sunday morning has changed names twice since I moved away, and has knocked through to the next shop. Even the railway station has moved a few hundred yards from the old one, which stands strangely empty as we roll towards the new one, the waiting rooms and shelters levelled, just a sign saying ‘Do Not Alight Here’.

The wild orchards near Newington

I am not alone often when I go out, but felt the need to undertake this bold expedition by myself. I notice things more when I am not in company. The wild orchards that border the track between Newington and Rainham; the passenger waiting on the platform in a thick puffa jacket, glasses tinted black on a bitterly cold day; a little girl in the next toilet stall with her mum, telling on Leah, who had ‘pulled all the tissue out and just thrown it on the floor, and that was a waste of tissue, wasn’t in Nanna?’ Nanna was in the next stall along from her. The small child in the Oxfam shop, who declared she was going to ‘inspect stuff’: ‘Hmm, this a very comfy chair’. How different the Cathedral looks from the platform of the new station, the perspex and metal shelters on the opposite platform obscuring the view. How cold the fingers of my right hand, texting my husband to ask him to pick me up at the station on the way home.

At the weekend, I’d heard Guy Garvey on the radio, at the BBC 6 Music festival, talking about living in New York for a year, and how being away had fed his songwriting. Again, the importance of travel to an artist. I listened to Guy Garvey’s solo album on my iPod on the way back from Rochester. I’d heard it a few times at home, whilst on my computer, my phone, reading, talking to my husband. I hadn’t really heard it at all. On the train, it was just me and Guy and the music, and staring out of the train window.

Perhaps it’s being alone that creates the experience, and travelling doesn’t need to be that far. My orchard poems, on Wandering Words, and new ones being written, started when I felt bereft after finishing my story collection. I wrote about what I could see from the window of my writing shed, as a filler-in thing, till the next writing project found me. They became that project. Like the shops and cafes of Rochester, the orchards are changing, disappearing. Here is a new poem – or perhaps two, about the boats that are docked on the orchard that backs on to our garden.

Dry Dock

A catamaran

upturned on trestles

a milk jug draining

ii

And now there are three

hour     minute     second     hands

stilled round the dead tree

 

Photo by Stephen Palmer

On a car ride from Faversham to home, I was shocked to see that most of an old cherry orchard had been chopped down; the second such orchard that has disappeared in the last two years. Last summer, we bought cherries from a stall in that orchard. A young woman was selling them, her toddler in a playpen under a tree, and a babe in arms, just ten days old. We asked what kind of cherries we bought each time – Napoleon Biggereau, Sunburst, Merton Glory. We bought some on the very last day the stall was open, on my way to an event where I read my poem ‘Know your cherries’. I used them as a prop, then shared them with my granddaughter. She accepted them silently, seriously, while the other poets read. The juice dripped down her chin.

Bring your own tent? Why I’m taking a break from the literary world

Three months ago, overwhelmed by many things, I resolved to take a break from public readings. I had got into a habit of saying yes to every invitation to read, perform and organise literary events, and felt obliged to go along and support others in their artistic endeavours. I had become jaded with it all, and while some invitations to read were beautifully hosted, the last straw was when I was invited to read at an outdoor event. I had kept the date free, which was on a bank holiday weekend. Given my health problems, a ten to twenty minute spot in the afternoon meant that I had to keep the whole day free, resting before and afterwards.

A few days before, I checked with the person who had invited me to read – the organising committee had changed the time of the reading to much later in the afternoon, without telling me, and two reading spots had become one. He then said I could bring my tent along in the morning, set it up, and sit there all afternoon alongside my books. I made it clear that I had been invited to do this reading and expected tent, table, chair and PA system to be made available to me, and that I would only be there for the reading. I was grumpy throughout the afternoon, and though I did deliver a reading (alongside another grumpy poet who had been similarly treated), I didn’t enjoy it and wondered why I had turned up at all.

Filling up journals is the way to go

Filling up journals is the way to go

So I stopped readings altogether, and also held back on submitting my writing to magazines and e-zines. After winning the Tom-Gallon Trust Award in the summer, I hadn’t been able to place a thing. Rejection after humbling rejection arrived. The high of publication and awards is short-lived, and only leaves me craving more, so I reminded myself of why I began writing. As a way of dealing with a life-changing and devastating illness. So I have gone back to writing as nurturing, sharing my words mostly with my journal, only attending writing events that add to my own wellbeing.

I am learning to not feel guilty about declining or ignoring invitations to others’ literary events. Facebook is a demon for this – I find it easier to ignore a notification telling me I have 15 event invitations rather than to pick through them, responding with apologies and explanations.

After a while comes the temptation to start it all again – in fact, I have had new ideas for adding more into my literary and organising life. This is old stuff for me: over-commitment, getting excited by new projects without regard to the consequences to my health. I have to remind myself that the break from it all is doing me good, whilst not being an absolutist. I am the child of an alcoholic – we tend to have an all or nothing approach. I have made a small submission for publication this month, and shall wait to see if it is accepted. I have also agreed to review a new poetry book, which is something I do rarely, and I am looking forward to doing that.

Although I have enough material now for a second collection of poetry, I am holding back on planning publication, and working instead on a collaboration with an artist. We have no funding for this, nor any goals or end in mind; we are just exchanging work-in-progress by snail mail and seeing what happens.

If you are interested in writing and wellbeing and live in the Canterbury area, there are poetry workshops with Vicky Field and journalling sessions with Canterbury laureate John Siddique starting in January with Wise Words. Read their latest newsletter here. Many events are free.

Read my article: Low energy high creativity – discovering writing through chronic illness, originally published in Writing in Education, 62, Spring 2014.

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