mental health – Falling Awake to Life – Through Story, Myth and Mindfulness

ALL YOU NEED IS LOVE

Why can’t we just love one another?

The Guardian Newspaper at one stage years ago, offered the big questions for readers to respond to. One of them was ‘Why can’t we just love one another?’

Various answers came in – someone in Newcastle replied, ‘because some people come from Sunderland.’

What would you reply? Because some people are dangerous, selfish bastards, murderers, dictators? or billionaires, gypsies, crusties, communists, fascists, woke? maybe they belong to a particular nationality or religion? Or maybe they hurt you deeply.

How do we reach across that divide? Or do we even want to? As I said in my previous blog, we all have our different lenses with which we see the world and other people and that affects how we respond to them.

all images created by my niece E.K.Mosley for my book ‘Stephen from the Inside Out’

In my 20s I was one of those who thought that all you need is love. I was inspired by Jesus who said ‘love one another as I have loved you.’ I lived in an intentional Christian community on the North Devon Coast for 2 years and then worked for 3 years in a Christian residential drug rehab for women. Many of them had been thieves and/or prostitutes to fund their drug habits. One told me she had sold her mother’s 3-piece suite while her mother was out. Many had been sexually/physically abused as children. Most, if not all of them, had begun serious drug habits by the age of 12 or 14. One told me of injecting bleach. Then and now, my body tenses with horror at the thought of what drives a person to do that.

Yet…. Yet… She is the one who gave me the mug below. The mug which says ‘a beautiful day begins with a little love.’ I still have that mug and if the woman who gave it to me ever reads this, thank you, D.

The other side has a picture of a rainbow.

Yes, some found better lives, but many left to return to drugs, some died. The suffering was deep.

Later I married Tim, moved, worked as secretary and was also part of a church that housed homeless people in the church building. A few would join us for the daily evening services. They were all welcomed. We would stand in a circle round the altar in the middle of the large gloomy Victorian church with the vicar blessing the bread and wine. We’d be a motley collection of maybe 15 to 20 people: quiet elderly ladies, unwell people muttering, people in work clothes, monks in holy robes, and the occasional drunk man (almost always men) swaying slightly to stay upright and making inappropriate comments. One told me he didn’t expect to live till he was 30. He never did. I didn’t know anything about his background but I did see the scars on his arms from cutting himself.

My faith at the time, held out that love conquered all, that in ‘the end’ it would all work out. The fact that I was part of a group of people, a church community that welcomed everyone helped me sustain this. But I still felt like screaming at times.

After 4 years, Tim and I left that city, moved 3 times and had 3 children. 6 years later we moved to a suburban area. By then Tim was a church vicar. It was here that I met Stephen who was under section at a local psychiatric hospital.

I invited him to coffee once a week and occasionally took him to the church but people there avoided Stephen. He had a wary institutional look, wore baggy clothes with cigarette burns. He was tense and restless, would ask people for money and mutter dark things under his breath. I felt indignant on his behalf but I was also finding him challenging. He wanted to visit or ring me whenever he wanted. Guilt told me I should say yes but Self Preservation was putting up a fight.

Below is an extract from ‘Stephen from the Inside Out’ chapter 2 (please note that I read chapters back to him and he commented. These comments are in italics):

……………………………………………………………………………..

Stephen kept reminding me I was a Christian, that I was following someone who preached the way of love. ‘Love your neighbour as yourself’, ‘If someone asks, give’. I’d been a fully paid-up Christian for 17 years. What was the matter with me?

In my mind, rather floridly, the Guilt Queen, 
meticulously dressed, appears; 
one smart shoe firmly on the windpipe of Self-Preservation.

No-one was helping to share the load and I couldn’t lift the weight.

The Guilt Queen purses her lips:
‘no-one said it would be easy, Susie’.

One Sunday I was standing on the drive of our house with Stephen. He was expecting to come in. I waffled. I fumbled. I said very nicely that it wasn’t a good time for him to come over today. He wasn’t taking the hint. He glowered at me, grumpy and miserable. He didn’t want to go back to the hospital. It was horrible there. Horrible. Horrible. Horrible. Did I know how horrible it was?

The Guilt Queen stands behind Stephen,
inspecting a booklet entitled,
“Hypocrites of the 20th Century”.
She holds Self-Preservation in a headlock.

Did I know how horrible it was?Yes, I knew, yes, yes, yes of course… He pulled his trump card: ‘If you were Jesus, you’d invite me in’.

Suddenly Self-Preservation emits an elemental roar.
Guilt Queen is thrown. White noise.

‘I’m not bloody Jesus!’ I screeched into his face, before storming off, slamming the front door and bursting into tears.

Tim, my lovely husband and also vicar of the church, offered some basic theology,

‘You’re right. You’re not bloody Jesus.’

He then added, ‘If Stephen turns up whenever he wants, you’ll end up being overwhelmed and shutting him off for good and then nobody wins. Lay down some ground rules.’

Stephen surprises me by leaning forward and firmly agreeing with this: ‘Obviously, I needed some ground rules. I didn’t have to go back there. I was informal, I could have gone somewhere else. There was no excuse for my behaviour. All I can do is apologise. Quite frankly, I was a menace.’ He warms my heart; I hadn’t even thought of the other options available to him.

Without that piece of crucial advice, my connection with Stephen would never have survived.

………………………….

Why can’t we just love one another? What do we even mean by love? Jesus’ version was pretty hard core although he is miss quoted. He said ‘love one another as you love yourself’ – that last bit gets lost.

I grew up with a mix of love being about ‘being nice’ and also ‘being kind to those less fortunate than myself’ and very little about loving myself because (and it was true) I was very fortunate.

As a result, I didn’t feel able to be direct, so relied on people to know social etiquette: not overstaying their welcome, not ringing me at 2am or asking me for money. I did not understand that love might mean holding my own, being clear, even if I am ‘more fortunate’ than them. That love might mean, knowing that I too have needs and vulnerabilities. Perhaps most important, that maybe love means acknowledging I’m part of the mess, not above it all.

It was a vital awakening and it took me years to wake up to the fact that the problem was not Stephen – Stephen could not be anything other than he was. That was his gift.

Stephen never did ‘get better.’ He lived intensely. He suffered and he enjoyed the moments that he could. Below are 2 poems of his, one on a good day and one on a bad day:

POEM ON A GOOD DAY

'Ah the radiant beauty and scintillating charm

of the resplendent flowers, illuminating

the tranquil propensity of the garden

in the bright shining sun.

The persistently beautiful rhythm of the birds

chanting their ecstatic songs.'

Stephen

AND ON A BAD DAY

'This Life –

ah this wretched Life –

for me it seems to have no purpose, no point –

just an agonising struggle –

and I am not strong enough to overcome.

Alas, I am afraid I am not.'

Stephen

So… what about ‘all you need is love’? Do I still think that? no. I still go with ‘Love others as you love yourself,’ but I see it as a practice. We practise loving ourselves and others. We practise receiving love from others. And we practise not expecting an outcome or thanks. That, in my view is a more than a life’s work.

'In our love,
however little, 
we create a web 
which breaks a person's fall.'

S.Stead

SEEING THE WORLD THROUGH A DIFFERENT LENS

Several years ago, I caught a train for a long journey and sat on one side of a table, next to a skinny boy about 8 years old. He was sitting by the window and the two people responsible for him sat opposite. For some reason, I connected them as his carers not his parents (I never asked so I never found out). He was a wonderfully curious boy and he asked the man opposite, ‘why do we see the colours that we see? My eyes are brown so why isn’t everything brown?’ The man just smiled. The woman was more playful, ‘my eyes are green but if I saw everything as green, I’d start arguing with you!

And then because I’d been reading an article on it, I said to the lad, ‘We don’t see with our eyes, we see with our minds.’ He looked at me, wide eyed, then crunched up his face in disbelief. He ignored me after that and got caught up in some other interesting thing.

What do I mean when I’m talking about seeing? Receiving a visual image, making sense of it in terms of shape and colour and interpreting that image. Perhaps at a distance I see something brown, tubular and vertical with a green mass at the top etc and I interpret it as a ‘tree’.

What do you see below? There are at least 2 entirely different images available to you.

There’s more. While the eyes receive the visual image, the mind is deciding which images to pay attention to. We wouldn’t be able to function if we had to take in EVERYTHING we saw all the time and process it. Mark Williams, clinical psychologist and one of the founders of Mindfulness Based Cognitive Therapy explains how ‘even vision is a simulation’ in his book “Deeper Mindfulness” p20/21. The mind creates a virtual reality which is then updated when needed.

If you haven’t seen this video before about focussed attention, you might enjoy it. It is one of several

Our minds pick out what to ‘see’ by focussing on what is significant for us. It also colours what we see with our opinions, attitudes, and background experience. I think that lad had something. We are all seeing reality with different coloured lenses!

I may be contentious here but see how it lands:

Being objective is impossible.

How we ‘see’ a person, will inform how we respond to them and it may have very little to do with who they are.

………………………………………..

Seeing Stephen

In 2000, as part of a church group, I visited a local mental health drop-in social evening. When we arrived, I separated from the others and looked for someone to talk to. The room was crowded so what did I ‘see’ in Stephen that made me want to chat with him? In my book ‘Stephen from the Inside Out,’ I describe him as, ‘in his mid-forties, slightly taller than me with glossy black hair, alert brown eyes and a disarming chuckle.’ I still couldn’t tell you exactly what drew me to start a conversation with this total stranger. I only began to understand why I stayed in contact with him, when I began to write the book.

…………………………………

Twenty years later, I wrote a description of the flat Stephen had lived in for ten years. By then Stephen had died so could not comment. I thought I’d written an ‘objective’ view but when I came to re-read that section, I realised with a jolt that it was not at all objective. What I chose to focus on and describe in detail was not what Stephen would have chosen. I wrote another description but kept both in the book to highlight the difference and give the reader this fuller image.

Just for clarity, ‘our main recording’ refers to me holding a small tape recorder by Stephen as I asked him questions about his life.

…………………………………..

In good weather we’d sit in the garden but our main recording took place in the front room, high ceilinged and squarish, with Classic FM in the background and Charlie the dog wandering in and out. The walls were cream, damp-stained stucco, decorated with a few framed prints plus photos, postcards and large handwritten signs fixed in place with Blu-Tack. The bay windows were covered by faded net curtains and framed by old brown curtains, which trailed in twin heaps on a floor of stained bare boards covered by a threadbare mat.

The door to this room was permanently held back against the wall by a fire extinguisher, and the door handle was used to hang the aprons that Stephen wore to protect his clothes while eating his meals. When you entered the room and faced the windows, the round wooden table where Stephen sat to eat was on your left. One space was held clear by an elderly placemat, while the rest of the surface was taken up by his radio, boxes of medication, cigarette packets, cards and photos, all of which was encrusted with bits of old food.

The table was pushed against the wall and had a pair of simple wooden chairs tucked under it. Between there and the window resided the TV, opposite which were Stephen’s comfy chair and coffee table. This, too, was heavily populated: cigarette packets, lighters, two large ash trays, magazines, rotas for Stephen’s carers, letters, pieces of paper, boxes of earplugs, nasal inhalers and various medications. The two heavily-laden tables were kept apart just far enough to allow a narrow passageway from Stephen’s chair to the doorway.

He smoked 30 to 40 cigarettes a day, so the room was ingrained with the stagnant smell. In the ten years he lived there, the flat received one full clean.

……………………………

That is one way of describing Stephen’s front room. It tells you quite a bit about my view, eg: ‘stained bare boards,’ stuff Blu-Tacked to the walls and piled on the tables ‘encrusted with bits of old food’. This is not how Stephen would have described his flat. So I wrote again, putting on Stephen’s lens.

…………………………

Stephen would have said his flat was ‘special, very special’ because he loved this flat. It was his precious home, and his front room was his safe place. The prints on the wall were ones he’d chosen and the postcards all came from long-standing friends. The pictures carefully blu-tacked on beside them had been cut out from the Country Life calendars that he asked me to buy him each year; prancing lambs and foxes, eagles in flight. Carers had sellotaped encouraging notes on the wall, like ‘Smile Stephen – Think happy 😊’, and the photos balanced on the tables and in front of the TV were of loved ones, his dog and snaps I’d taken of him on outings with my family. The radio and TV were essential: sources of information, humour and sublime beauty. What would he have done without music?’

How different does it feel to read this description?

Over the course of eighteen years, Stephen slowly taught me another way of seeing….

[Taken from the poem ‘The Teachers’ by John Bell]

…………………..

Coming back to that boy on the train and the people who sat opposite. Why did my mind snag on them being his parents? Physically they could have been a fit. When I reflect on it, it was the lack of some intensity of connection which is my experience of being a parent. And by that I don’t necessarily mean wonderful patience and care. It could have been irritation, over concern, shushing him, beaming with pride, insisting one of them sit next to him… Or it could be that my sense of what a parent is, is limited and my brain just didn’t recognise it.

The range of what we think and do
is limited by what we fail to notice.
And because we fail to notice
there is little we can do
to change
until we notice
how failing to notice
shapes our thoughts and deeds.

By: RD Laing

ENDINGS AND BEGINNINGS

Introducing Stephen from ‘Stephen from the Inside Out’

This book was written with Stephen’s permission. I read chapters back to him and incorporated some of his comments in the text (italics). It won the Impress Prize for New Writers in 2019, resulting in Impress Books publishing it on 2nd April 2021 (World Autism Day). Illustrations by my niece, E.K Mosley.

There are so many ways to describe a person and they all only touch a particular surface:

Stephen spent 25 years on psychiatric wards,

Stephen loved animals: “As he said with regularity to me (with no heart-warming exceptions), ‘I hate people, but I love animals.’

Aged 45, Stephen was diagnosed with Asperger’s syndrome, now referred to as Autism Spectrum Disorder (ASD)

Stephen had a lovely smile but insisted he never smiled as a child:

“Stephen nods, repeating ‘never smiled’ and adds, ‘I never ate hard-boiled confectionery, you should write that down.’ He cannot abide the sound of the word ‘sweet’ and he doesn’t like me using it.“

Stephen smoked probably around 40/day as an adult. When outside he would always stub out his cigarette butt, pick it up and take it to a nearest bin.

So many ways to introduce Stephen to you, but I will begin at the end and share with you the preface to the book:

……………………………………………………………………………………………………………………………..

PREFACE from ‘Stephen from the Inside Out’

It is 2018 and I’m sitting in a small room attached to a public library. I’m here to register Stephen’s death. It is strangely and repeatedly painful to have to keep telling people that he has died. Two days after it happened, I found myself sobbing in the changing room at a swimming pool. Grief surprised me.

The woman registrar facing me is kind and friendly as she asks me questions and fills in the death certificate. Date of birth? 3^rd April 1955. Occupation?

In his whole life Stephen had only one paid job, as a road sweeper, and he lost that after a couple of weeks because he fell asleep. I refuse the description, ‘unemployed’. I consider Stephen for a moment, and then I know what to say.

‘Poet.’

‘Retired poet?’

‘No, just poet’

She writes ‘poet’ and then ‘widower’ and we carry on filling in the form, but a warm wave of pride, happiness and grief rises inside me. How I wish Stephen could see that title. He would chuckle with pleasure, or perhaps look at me solemnly and say ‘Susie, I am a poet!’

I’ve kept a copy of that certificate and every time I remember ‘Occupation: Poet’, a feeling of gladness fills me. ‘Poet’ affirms what was central and precious to Stephen, his love of words, the free spirit that would not be silenced.

When I first met Stephen, this was not what I thought. When I first met Stephen, he was a ‘poor soul with mental illness’ who just needed a little help. And I was going to help him.

………………………………………………………………………………………………………………………….

Stephen the poet

Stephen wrote his first poem when he was 11 years old. This next part is taken from Chapter 4 and all of Stephen’s dialogue is transcribed directly from the audio recording I took of the conversations:

Eventually we return to the school and to a seminal moment, when he wrote his first poem. He recounts this to me in the voice of one honouring the sacred: ‘ “The Passing of Steam”. You should write that down. I wrote it. I spent a long time writing it. Four o’clock one Monday afternoon. I wasn’t in detention at all. My English teacher stayed there. My English master was sitting at one end of the room and I was sitting at the other end. He was looking after me while I wrote it. I began writing it at four o’clock and I left there at half past five. I got the late half-past-five train. What a rollicking I got when I got home too! And I’d written that poem. I’d written that poem!’

This was the inspiration, the catalyst for Stephen’s creative direction in life. He carried on writing poetry for the next 50 years.

I’d also written what I call ‘sort-of’ poetry since I was a teenager. I didn’t understand what drove me, until I heard Padraig O Tuama, an Irish poet, explain that he wrote poetry to survive. This from a gay Irishman who lives in Belfast.

I ask Stephen if he agrees with Padraig. ‘Absolutely right.’

Stephen’s poems are written by hand on A4 pads of lined paper with amendments and crossings-out. Whenever I can, I type them up before they disappear into the mole hills of old post office receipts, charity letters, shopping lists and care agency/DHSS correspondence.

Certain phrases and sentences strike me:

‘An acrylic sensation of despondent desperation and despair.’

‘As the rain so intensely and monotonously yet luminously falls tonight.’

And occasionally surprise me:

‘The sheer ecstasy of the intrepid blackbird protruding onto the waving branches of the tree.’

When I read this back, a deep delighted chuckle emerges from the armchair. ‘Did I write that?’ I confirm that he did and we both laugh with pleasure.

………………………………………………………………………………………………………………………….

I want to finish with a poem that Stephen wrote which I have slightly edited. I have not added anything, but have made a few cuts to shape the poem. This poem is not in the book.

Autumn Day in the Garden with the birds and Hope of a Better Future
Stephen - October 2011

Oh, the rapturous, enchanting song 
of these ever captivating, enthralling birds – 
They blend in so harmoniously and intricately, 
a haze of effervescence 
among the fading trees 
and disintegrating leaves.  

I ponder obsessively and contemplate 
a scene of endless paradise and tranquillity, 
ensuing from this agonising and yet futile strife. 
Hope of an incomprehensible all-pervading rapture, 
When travelling days are done.

Writing is Impossible!

Writing a play is impossible.

I thought this.

It was too long, too complex

To hold the structure.

Yet one day I began.

I wrote short sketches

5 minutes long

10 minutes long.

Others performed them.

First, they grew like daisies

Then they grew like roses.

The smell was glorious,

Intoxicating,

I began to write more.

They became knotted wood

And branches,

Saplings swaying to the music.

Now

Writing a book is impossible.

It is too long, too intricate

To hold the structure.

How do they do it?

And then one day I began.

FINISHING MY DRAFT FOR THE BOOK

‘STEPHEN FROM THE INSIDE OUT’

On Friday 9^th October, the day before World Mental Health Day, I completed my penultimate draft for the book, ‘Stephen from the Inside Out’! Here is an extract from the back cover ‘blurb’:

‘From the outside… Stephen struggled for most of his life with severe mental health issues, endured 25 years inside British psychiatric wards and never felt acceptable in the ‘normal’ world. From the inside… here was a man with powerful convictions, deep longings, wide interests and an incapacity to be anything other than himself, whatever the cost. This is his story, inside and out; a story of grave injustices, saints and bigots, a faithful dog, a wild woman, a fairy godmother and angels hidden in plain sight. It is also the story of the author, Susie, who started off by wanting to ‘help’ Stephen ‘get better,’ but then found out it was somewhat more complicated than she’d anticipated.

In 2012, this book was a seed in my mind. Stephen agreed to me writing the book but how to begin? We met up regularly and I recorded our conversations.

In 2014 Kate Clanchy, author and poet, agreed to mentor me. Every now and they she would issue vital advice.

At the beginning: Weave in the history of mental health in this country but only sparsely – keep the story moving forward.

Which I did.

Then: Go on an Arvon Course to complete your first chapter.

Which I did.

Near the end of my first draft: Send it out and get used to rejections.

Not so easy. But I began.

You might like to apply to a competition run by a publisher.

I applied to the Impress Prize for New Writers.

And got to the last 10. But I’m not going to win.

And then I won.

Won £500 plus the promise to publish.

Now 10 months later, in October 2020, after 14 drafts, I’ve handed in my draft to a copy editor, to be ritually disembowelled. I’ve spoken to him and trust him to use a clean sharp knife.

I’ll see you on the other side.