The Fear

I am part-way through the second draft of a long piece of writing. It’s book length, non-fiction, and that’s all I want to share. The fear has got hold of me, fear of if it’s any good, if anyone will want to read it, if I want anyone to read it. Perhaps I just needed to write it, and it doesn’t matter if no one reads it. Perhaps, once this second draft is complete, I’ll rest it, not look at it for a while, or never look at it again. I might just destroy it – a passing thought. I know I won’t do that.

I have written a paragraph to summarise the book, the kind of thing that might appear as a blurb, on the back cover. There I am, calling it a book, as if that might happen. Ha! I am drawn back to my MA class when Patricia, my tutor, would say, ‘What is it about?’ when we were discussing texts, or workshopping one another’s writing. And I find that the book is not just about what I set out to write. It’s also about loss, about grief, it’s about the toll that trauma takes on the body.

I wrote the first draft in two months, which is the fastest I have ever written anything of that length. I wrote a little every day, scared that if I missed a day, I wouldn’t return to it. Some days I wrote only two hundred words, others much more. I found that the gingerbread man timer I usually set to stop my wrists and back from hurting, if I type too long, had been ignored, and my wrists and back were indeed hurting when I stopped writing and noticed things other than the words on the screen, on the printed page.

Some things were hard to write, having held onto them in silence for so long, some for forty-five years. I felt better for speaking them, for writing them, but sometimes I don’t, and today is one of those times.

I didn’t plan this book before I wrote it, just wrote scenes and chapters as they occurred to me. I thought I could sort out the order later. And I find that they do make sense in the order in which they came. There is only one chapter that I might place elsewhere, or maybe cut it all together. I wrote it as light relief, as a positive story about that time, about myself. There are a few stories like that in the book. It’s good to remember those fun times as well as the trauma. Light relief for the reader as well as the writer. The reader! There it is again, the thought that someone might read it. Maybe they will, maybe it will go out into the world as a book. Maybe it will help others who have been through the same kind of things.

Early in the writing process, I wrote a dedication: For those that have not yet spoken, and for those that have. I must remember that, when the fear takes hold, why I wrote it. For myself and for others.

The ending is set on a day in March of this year, when I went in search of a tree to climb, in memory of my friend Karan, on the anniversary of her death. It’s a remembrance of loss, but also of hope, as the book will be. A memoir of grief, loss, hope, and understanding. Here is an extract, a reminder of facing the fear:

We slide down the muddy slope. It’s incline is one I would normally attempt, with a tree to hold onto on the first couple of steps down, then nothing to halt the slip and run towards the bottom. Bob goes first. He says, ‘Just go for it,’ and the rush of the last few steps is liberating, even though there is a risk of falling. How seldom we do this as older adults, just go for it, see what happens, risk falling on your face or your arse, and would that matter, after all?

I size up the horizontal branch. It takes a few attempts to pull myself onto it. I worry that I can’t do it. I just don’t have the upper body strength. Then I think of my granddaughter on a climbing frame at a playground a few weeks before. She tells herself that she can, when at first she thinks she can’t, when attempting scary climbs, or anything scary. I am doing this for Karan, to regain that childhood feeling, and I haul myself onto the branch, straddle it like a horse, and I am grinning, laughing. The seat of my jeans is damp and slimy where the mist has clung to the bark. My coat is splattered with mud. I am ten years old again.

When truth is denied

Jane spoke without looking at me, without mentioning my name. ‘I think there is a personality disorder,’ she said. The meeting had been called to discuss the problems with the project I worked on, the clashing ideologies of the the national charity that employed me and the social services department where I was based. But mainly to address the concerns I had about how my volunteers were being treated, concerns that the volunteers had raised with me, which I had passed on to Jane, the social worker, her assistant Pat, and my manager at the national charity. Instead of discussing how these concerns might be addressed, I was being accused of causing trouble due to having ‘a personality disorder’.

My role was recruiting, placing and supporting young, full-time volunteers, in partnership with a scheme run by the social services department of a London borough. The scheme was based in a former children’s home. A couple of the rooms had been retained as bedrooms, as off-duty accommodation for the volunteers. While ‘on duty’, the volunteers lived in with a severely learning disabled person. There was supposed to be a paid carer at each project as well as a volunteer. The scheme was supposed to provide a positive experience for the volunteers as well as enable people with disabilities to live in their own homes, many having come from long stay residential care, at a time when Care in the Community was a new thing.

It soon became apparent to me that the volunteers were being exploited. Where there were insufficient paid carers and volunteers, sole volunteers were left at on duty for several days without relief. Also, the off-duty bedrooms were not exclusive to one person. Whichever bed was available was used, with no change of sheets, and there was nowhere for the volunteers to permanently keep their possessions. They were effectively living out of a suitcase. There was a volunteers’ house, too, given to the scheme by the council. It was ramshackle and tatty, and was infested with rats.

I thought that if I spoke the truth, if I tackled these problems directly with Jane and Pat, then they would be addressed. Instead, there was a kind of war against me, waged by Pat. Some of these skirmishes were direct – angry phone calls to my home on the days I wasn’t working. Others were sly, and difficult to deal with. Piles of jumble were left on my desk, paint pots and brushes piled behind my chair when the office I shared with Pat was being painted (she moved them there; they had been against a wall away from any desks). Pat complained that the name plates on our office door should be reversed in order: mine was above hers, purely because my surname came before hers in the alphabet. Instead of taking any responsibility for the volunteers’ poor living conditions, both Jane and Pat blamed these young people for being lazy and dirty. And I was blamed for not supplying the scheme with enough volunteers.

Whilst I was believed by my manager, who stated that she was very concerned about me working in those circumstances, and about the volunteers, nothing changed in that scheme. The charity did not withdraw from supplying volunteers (which I suspect was due to them not wanting to lose the funding), Jane and Pat did not make any improvements to the volunteers’ living conditions, and I continued to be targeted by Pat in her petty war. The only thing I could do, for my own wellbeing, was leave the job.

The reason for recounting this story is to show that telling the truth, speaking out, is not always received gratefully, or dealt with as it should be. It’s something I have been thinking of recently, of times where I have spoken out and told to keep quiet, incurred the wrath of others, or had my truth denied.

In the early days of my illness I was disbelieved by my GP. He put all my symptoms down to depression. This went on for two years, his blinkered view not open to the fact that the various symptoms I had might add up to other diagnoses. I was telling my truth and my truth was ignored, discounted. I felt I was going mad; not being believed makes you feel like that. Sure enough, when I changed GP I received a proper and full diagnosis.

Over the years, I have had skirmishes with the DWP over my disability benefits, and each of these has been due to me not being believed. This year, I was assessed for Personal Independence Payments (PIP), which is replacing Disability Living Allowance, a benefit I received for 20 years as an indefinite award. My husband and I filled in the form together, gathered evidence from professionals involved in my care and a friend who could account for how my disabilities affect me. My account and all the evidence were disregarded by the assessor. She spent less than an hour with me, and decided that most of what I said, what was written on the form, was not true. Because she said so.

It was not just the loss of benefit that affected me, it was not being believed. I did not exaggerate my difficulties, in fact it was really hard for me to put across how badly I function on most days, to address the truth of how limited my life has become. I contested the decision, asked the DWP to look again via a Mandatory Reconsideration. The letter that came (12 weeks later) ignored all my points, again ignored the supporting the evidence, and upheld the original decision. So I appealed to the independent tribunal service, expecting to wait a year until my case was heard. Imagine my surprise, a month later, when the DWP (not the tribunal service) wrote to say that they had reconsidered the original decision and the Mandatory Reconsideration. They were awarding me PIP at the highest rate. Although this is wonderful news, I have had trouble accepting it. First I was disbelieved, then disbelieved again, then all of a sudden believed! I am half-expecting another letter to say they are taking it away.

Truth -telling and how it is received … it is too big a subject for a short blog. Especially at a time when liars and deniers hold power in the White House and in Downing Street. Globally, truth and evidence are ignored in favour of what people choose to believe. Personally, individuals will always be ignored or vilified for speaking their truth, will be made to feel like they are going mad. 

*Jane and Pat’s names have been changed.

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