In my cupboard (a lyric)

In my cupboard is a get out of jail free card
In a bag behind lock and key
When my brother heard the prison bars were closing around
He had it smuggled in to me

There are times where I feel like dipping in
When I’m in need of some respite
There’s a voice says In the circumstances,
Can’t do any harm,
But there’s a part of me that knows it might

Cho: Hold
………… Hold
In the high winds and the following calm
Hold…
Hold lightly in an open palm.

We don’t know how we’ll feel tomorrow
It’s a cert my body won’t break free
But the precious gift of clarity, of seeing it straight,
It’s that that matters more to me

The very thing that makes it all luminous,
Makes the Earth sing from shore to sky,
It’s the mystical otherness imbues reality
From first moment til the final goodbye.

Cho: …. Hold… Hold…
Hold lightly in an open palm.

I think back to the time of arrival
To my parents, to the town, to the sea
All the episodes and settings
Between then and now,
Gifts from the universe to me

I never earned or merited this magical dance
The darkness, the emergence of light
I’ve had more than my share of rescue and healing
Been lifted in sensuous delight.

If I’ve entered on the closing sequence
With the options slowly shutting down
I will weigh up regret and gratitude
And gratitude wins hands down

I am more than content with my portion
In my soul is a surge of peace
I am quiet in a world of beauty
Awareness is
My release.

Cho: ….. Hold… Hold..
Hold lightly in an open palm.

( and I’ll fly
Where the first wash of blue lights the sky.
Where distant memory and the answering call
Meet like dancers spinning down the hall.
We’ll tumble out the front door and down the garden path
And in the last flush of evening, we’ll laugh ).

12th August 2017

Rosamund went out down the coast to Whitby to carry on decorating Amy’s little house.

She tried to get Louis to come back and be here for me, but I insisted I wanted to be home alone, to be still, in my own space.

But after a while I needed the toilet. I wandered around the flat struggling to untie my dressing gown belt. Once that was done I found some corners around the right height and managed to work my shoulders out. Dressing gown off. Sorted.

Bathroom. But my pants wouldn’t come down. Thinking about how they ride up and down in bed when I move, I sat on the top stair and wiggled my way backwards. That wasn’t working so I lay back to get more traction. Bad mistake.

As soon as I was lying back I realised I couldn’t get up. 

So there I am lying on the corridor floor at the top of the bathroom steps. I tried rolling myself forward to swing into a sitting position but there was no give in the ground below me and I couldn’t do it. No strength in either arm for even a small amount of lift or push. I thought of wiggling forward and bumping down the steps into a sitting position but realised I wouldn’t be able to lean forward, so could do serious damage twisting my spine backwards. Meanwhile my neck was beginning to remind me that it can’t straighten or roll backwards without pain, and my weakened muscles were losing their residual ability to hold it up. I Shuffled and twisted to one side to rest my head on the radiator, Until the discomfort was too great. Then I shuffled and wiggled around to rest my head on the skirting board on the facing wall. This allowed me a few minutes respite.

But my neck was getting weaker and I was getting more tired. My head was heavy and I was starting to sweat. I tried to work out how long it would be before someone would come.

Time passed. I was getting more desperate. I tried working my legs up the wall but it wouldn’t get me to position where my neck would be supported. I worked backwards and forwards between the two walls, between the radiator and the skirting board. I tried rolling on my side to see if there was any way I could work my way down the stairs to a position I could get leverage in. But the pain in my neck was too much. I desperately needed to keep it supported. I looked at the door behind me. It was open a little but there was no way I could get my arms over my head to open it further. And if I worked my way back to the door then I would be blocking it when help came.

My neck was losing the ability to raise itself to the level where my head could rest on the skirting board or the radiator. But the pain was severe when it was unsupported. I was beginning to panic. No. I was panicking.

I started calling for help. I hoped maybe the people in the flat above me might hear. Initially my calls were dignified, quite civilised. But nobody came. Somebody somewhere turned a tap, or flushed the toilet, and I called louder. But nobody came. I was sweating, frightened, in pain.

As my neck slipped back further the pain sharpened, the prospect of hours and hours were seriously untenable. I yelled louder, my voice starting to break.

Eventually I heard a knocking on the outside door of the flat. At that moment I had real fear that they will not be able to hear me and will go away. I yelled out come in, help, come in please. I heard the inner door opening and a voice saying a tentative hello. I called out again come in, please come in, help. The bathroom door behind me opened. Egon came in. What can I do? He said. help me up please help me sit up.

He got in front of me and arranged to get hold of my arms. Not the arms. From my back. He pushed my back. There were tears on my face, panic and distress and shame in my voice. Egon stayed calm. I counted 1-2-3, and rolled as he lifted and pushed me forward. And then I was up, sitting on the top stair, my feet steady two steps down. Shaking. My pride tried to get me all the way up but I was really wobbly. He said stop. Wait just wait. I sat a few minutes. What do you want me to do? He said. I took a breath, and got to my feet. Just get me to the sofa, I said. I’ll be alright there.

Climb

On this ascent
Long stretches of attention-sucking
Scrambling and grasping,
Inching forward and sideways
And slipping and gripping and sweating,
Inching forward,
Grasping and scrambling,
Willing a vacuum-like adhesion
To hold you precious moments
Before grasping and scrambling,
Forwards and sideways
And up.

Occassional ledge
Where you slump-
Muscles collapse into uneasy rest-
Where, when the sweat is wiped from your eyes,
You can look up and around
And gain an overview.

And you see
How the wide base far below,
Crisscrossed with the luxury of alternate routes,
Has inexorably narrowed,
vice like,
Narrowing and narrowing the options
To desperate chance.
No reverse.
No way back.
And the sucking breath,
The sweat-wiped eyes,
Have only one application –
The narrowing, desperate scramble ahead,
The treacherous stone,
The hardening awareness
That the task exceeds the capacity.

Fighting to mount this mountain
Before sundown finds me stranded,
I cannot know
If another shelf is within reach.
Soon
My arms will be small water on granite
A weakening flexing of inadequate muscle, weakening,
And I will simply
Let go.

When midnight narrows (after diagnosis)

When midnight narrows towards the cold hours
And my sleeping partner deepens her stillness,
In unobtrusive light, with headphones,
I search the web
For stories about my illness.

Across the ocean men and women
Needing to share their shock
Video their confinement
Trying to take stock
Of the strange realignment of reality
That has changed their world in a beat
From the sense of limitless possibilities
To a dead end one way street
Hey nonny nonny.

Jack Levy railed bitterly
When an accident broke his back
We went for tea in Hyde Park Crescent.
Ladies of his acquaintance tried
To make him comfortable
But he squirmed and spat his anger.

His high apartment window through which
The swaying park had carried me a poem years before
Was now the limit of his world.
Even that, unreachable.

And I left, glibly sorrowful,
And strolled down Queensway unheeding.
Late in the day I see
I might have used my time better.

Trauma Incidence

They come in different forms.
The child waving to approaching parents
Sees them swept away by a careening lorry.

A father returning from market through glass strewn streets
Cannot find his family home.
Only empty space –
rubble and body parts.

Turkey, Greece,
Small enough comfort for able flee-ers;
Horror for the refugee who’s forward flight cannot outdistance
The creeping grip of disloyal neurones,
Of spreading paralysis.

My trauma tonight
Is the hand that cannot reach to clean,
The toilet door that won’t unlock,
The basin taps that are hell to turn
The stagger out for help to pull my pants up,
To have my eyes wiped.

My brother, my sister
On that heartless road,
Forgive my despair in my comfortable home.
Perhaps this cosseted impossibility is beyond me,
But I bow before your desperate suffering.

May we meet at the river
And link arms as we fall into the distancing surge.

The Process

A telegram arrived,

A statement of fact.

My head raised

And I looked to the horizon

And nodded acceptance.

And more than made the best of it.

An adventure began.

With my band of brothers,

We urged our ponies into gallop,

And had some fun

On the twisting turning mountain trails.

And I linked arms with my destiny

And made friends with the dusk,

The starlit dark sky watching from the wings.

In the interim.

The fun was yesterday.

My friends have stepped back.

The release is some distance ahead.

And the lumpy time asks its own questions.

In the interim.

I guess I’m not finished learning yet.

It’s not only how you process the prospect,

But how you live through the process.

Last night I spoke among friends

Last night I spoke among friends,

Fellow passengers in the lifeboat of precarious survival,

With antennae honed and attuned in battle

To tell truth from flannel.

And on that sounding board

Where only reality will suffice

I heard my gratitude

Reach out and join us

In the gulping venture of sharing.

And I knew again

That whatever the constraints and awkward inconveniences

On the path from a to b,

Still, the wind moves through the upper branches,

The river runs below my feet,

And I am blessed in this journey

From infant to enfeebled, clear seeing eyes.

Last night Terry died

And Sally is alone.

Across the sea

Ana sits at her kitchen table

In black, still stunned, in disbelief, alone,

While Juan Maria’s meticulous huerta

Is daily more overgrown.

You can either believe that the heart beat

Is an accidental phenomena,

Finished and blown away,

Like the counting of a clock

That toppled off a shelf

And broke.

Or rather have concluded that our vibrant presence

Is a localised expression

Of a beat that resounds

On a vastly wider stage.

It’s up to you.

For myself, I look and listen,

When the tantrums of self give way,

And am watered by the silent song of the universe.

The Verdict

Redcar and Cleveland social services

Took the case before panel.

They decided there was nothing they could do to help

Because I live up too many stairs.

At some point in the future

Ambulancemen would refuse to carry me.

At some point in the future

I would be unable to access the community –

Day centres will have to do without me.

Until then,

I will ascend and descend, slowly.

I will walk at my own pace,

Carry my own hanging limbs.

Between us, we will find a way

To wash my body and wipe my bum.

And when the day comes

And all of that is beyond me

I will find my way to high ground,

Breathe the clean air,

My back to Redcar,

And walk forward

Without them.

One arm in partial obedience

One arm in partial obedience, one dead wood.

One leg lumpily clumsy.

A body heavy and leaning,

All aches and invisible restraints.

The annoyance of working with uncooperative air,

Manoeuvering in ungiving space.

Levering into resistant, recalcitrant clothes.

And having to give up.

Exhausted before the day starts.

I have strayed too far from my hard won wisdom,

The gentle balm of acceptance.

I have fallen into the trap of thinking this struggle matters

Til God becomes a distant, other facing glow.

Soon I must let go

And find the stream that runs below ground.

Reality is not determined by agendas.

I want again to meet it

In moments of attentive observation.

To Face The Fact

I have to face the fact

That it’s getting hard now.

I can no longer walk out

And follow the beguiling breeze

That brushes my face and dances ahead.

I will no more find myself

In some deliciously lonely place,

A long way from home

Or helping hand.

I cannot squat

In vast isolation

As the heather rustles around me.

No more train journeys alone

To undetermined destinations.

Youth hostels, B&Bs.

Distance appreciatively maintained with other travelers.

Breakfast, then the daisychain footsteps up new paths,

Along barely discernible sheep tracks

To where only the wind speaks

And the surrounding hills resonate

Their silent, empty intelligence.

The morning comes

Sweaty, marooned.

And the short walk to the bathroom

Establishes the days dilemmas.

Nothing will halt the progress

Of this diminishment.

Outside, the wild cry of the distant hawk

And it’s cruel, exultant swoop

Reach me across miles

Across miles

Across miles that will always be mine.