Disentangle

ropeknife

You say we were two lives that need to disentangle.

But really some of each other became the other one.

That’s the problem. Where do you stop and I begin?

It’s less un-knotting and more a case of cutting it out.

It’s not like cutting out fat, sugar and carbs for my diet to make myself more attractive.

If I do this then I crave the bad.

Maybe I let a remanent of us remain?

It’s a dangerous game, I binge then purge.

More than that its like something that’s diseased.

You cut the tumour out stop it spreading.

I find rancid places to cut you out.

A surgeon, a butcher, a self-harmer.

I peel the taste buds from my tongue

because they shared a love of flavours,

that only we could understand and create.

A menu bittersweet.

I gauge the black place in my heart.

Like cutting the mould from cheese to preserve the rest.

Yet you always worry there’s some you didn’t remove,

and you’ll end up all bile inside.

I remove objects and reminders from my home.

Like cutting the pieces of a stencil,

to make it make a new pattern.

I like the way it looks better than before.

I cut poisonous people out of my life,

it’s an attempt to make it happier, but really I’m afraid.

Scared of their judgement,

because that’s what I became.

Some cut the story from the paper

in order to remember and celebrate.

But the card from last year which says ‘I’m still glad I’m in love with you’

is better forgotten as a manipulative lie.

I cut the nails from my toes,

to stop gouging out the flash at the sides.

Occasionally I don’t do it straight enough,

those feet that danced together become hot and infected.

I dig at my flesh, open wounds and peel back scabs.

I cut you out of me but I keep forgetting where me ends and you begin.

I bleed a little to prove I’m still alive,

and it’s still possible to hurt.

Maybe I’ll let a small piece stay,

like an inked scar to mark the moment we were one.

Is this violent act self harm self-preservation? Cruel to be kind?

I cut away part of myself to make room for more.

I fell from a mountain.

I climbed higher and higher,

The air grew thinner and thinner,

Head spinning, chest groaning, heart bruised.

 

I tripped once or twice,

I’m sure my keys fell out in the night,

It was the longest day but still it’s dark.

 

We dined on food that looked as though it were made for gods,

It tasted sweet and hollow, we laughed,

The joke was on us, sickly and open.

 

I slept, napped, curled in a ball.

I woke and all the triumph shattered.

I knew once again what the last words were.

 

I practiced words across the bough,

I worked on self restraint.

Underneath I hated myself so much it let me love you.

 

The moon couldn’t wash it away,

My companions stared into my soul,

I’m sorry I whispered, I am.

 

The brass and beat reached the most it ever would,

I ruined the moment chatting about books in a portaloo.

I laughed when you slipped in the mud.

 

I fight the war you started,

I always saved you, you should have gone, I’m too far,

I’ve climbed out of reach and feeling wrong.

 

I am washed raw by the moon,

A storm rages in the morning light,

And I’ve got nobody on my side.

 

One rejection too many,

Why can’t anyone see I’ll never find my way?

From this moment I am lost.

 

Sunday is so far away,

All hammers and cursed mistakes.

I crawl on knees bloodied by moods.

 

I reached up one more precipice,

My hands are weak and cold on their own,

The nails ripped as short as you’d bite yours.

 

I love that hand, perfectly imperfect,

It could comfort when your being dished out pain.

Just scraps of memories, I can’t tell whats real.

 

I lit a candle to shield the shape shifters,

they spit vinegar into my ear,

I watch it burn away, the world long gone.

 

I close my eyes, I see all the mistakes,

I try to be wise, but I’m always learning.

See me at my weakest always.

 

I numb the pain till I cannot see,

Vomit rises in my mouth,

Something rushes in my ears, I cannot hear.

 

Are you feeling better now?

I don’t know, I stumble, I fall,

Over and over the way I came.

 

Sticks and stones break my bones,

Your words rip my skin,

It’s over, and over, it’s over.

 

This bit I can only do alone.

A Year

Inside it was damp and stank like the garage, too many winters had passed.

It was full of snail shells, skeleton leaves and the big chest freezer.

 

You saw something in there, a hideaway, where I saw old,

You pushed your way through years of uncollected belongings.

 

You pulled out forgotten items of no use and found a purpose,

You began to make the unloved beautiful again.

 

That Spring you flung open the windows and let sunlight warm the darkest corner,

You dared to build from what others said was rubbish.

 

 

That Summer I grew things and tended them for it felt OK to dream,

We ate them greedily whilst sitting on an old palette bench in the sunshine.

 

The year grew on and we marched amongst the red apples and purple berries.

The fruits began to fall, their bitter decay intoxicating and vile.

 

As Winter came and the light dimmed you became distant and cruel,

We had a fire to keep and searched for solace amongst its flames.

 

The nights grew longer and the black filled our hearts.

Little by little the dream became frostbitten and bare.

 

One day you were not in the garden, or the house or anywhere.

I searched but only found more emptiness.

 

Brambles and ivy crept through the garden and into my heart,

I clawed at them to be rewarded with their thorns embedded in my skin.

 

With one last attempt to keep warm and see the winter through I lit the fire.

This time it was inside, the house and inside myself.

 

It raged and burnt in glory, its sharp tongues licked but provided no warmth.

For days it burnt with choking black smoke.

 

Inside it is charred and hollow, inside me is charred and hollow,

I’m waiting for you to clear the ashes and let them become the earth again.

Duvet 

What if I just stay here in bed and didn’t get up? The world would stop turning so fast and I’d stop slipping. I could will it with all my might to slowly grind to a holt. With all the weight of my desire it would turn slowly back, I’d reverse the tide. I’d go through all that pain and terror to get back to the place under the duvet. I turn the covers over to feel the cold and feel alive. I wouldn’t get up eager to make adventures. But I’d stay where you lazed, just lying in bed, no plans, nothing. At least I wouldn’t be alone. Today I’m staying in bed seeking warm and cold. It feels like Sunday, but it’s Saturday. I wish it were Sunday in a different world. 

Somedays

Somedays the world is an ugly place. I know this morning was not helped by the anxiety of returning to England and the early start. Maybe I wore the wrong eyes for viewing it? It was a catalogue of bad sights, smells and tastes.

It started with my bag (too heavy) and a very fast bus ride through Barcelona’s packed streets (the driver was a the love child of Jesus and Otto Mann). Add a dash of concrete pounding and avoiding last night’s dried vomit slicks (the pigeons were enjoying it). Finally to the bus,  despite there being 3 staff, they watched and tutted as both me and my sister (both disabled) couldn’t get my bags in. My hands, which shake all the time now, couldn’t grasp the thin paper ticket (don’t cry).

In the airport I waited by the mobility help kiosk (noted there are no chairs). I watched a man vomiting into a bin for 10 minutes before the cheery Xavi picked me up in a wheelchair (I always book ahead now for mobility and I always ask the name of the person assisting me). When you get assistance at airport you end up in all sorts of corridors and pens waiting, seeing behind the scenes. Once over the embarrassment ( I still get weirded out by crutches and wheelchairs) you get taken in buggies and strange contraptions to get you on the plane. You forget all the normal airport stuff but find yourself saying ‘thank you’ and ‘sorry’ a lot.

I watched amused as the people fight to get ahead in the plane queue. Almost slinking up the walls to get closer to the front. Then our gate changed and everyone made a mad dash across the concourse. The shoal was so choreographed any dancer in a ensemble would be envious. I trailed behind with the cabin crew, no rush, after all we’re all getting on exactly the same plane and our seats are already allocated. The dance continues as people who pay extra can get to the front of the same queue and other frantically sort through bags after bring too many or ones too large. The panic continues on the plane like a game of musical chairs. Last one seated is off,  I guess that’ll be me then (jokes).

Now travelling does something to my head, it makes me time travel to the past or future. I’m terrible at it. I fret and tremble recalling past pains. I nauseate over details of conversations not yet had. I caught myself in the moment of full anxiety (I’m good at catching thoughts by now). I realised what I was doing and I can only describe it as running down a dark alley with doors that open to the past and the future. You witness times of joy and pain and live events that haven’t happened yet (and probably never will). The alley narrows and it gets harder and harder to turn back. As you are squeezed between the ever narrowing walls you realise you’re stuck. It’s so tight and dark you can only see and believe what your brain is showing you. I held back the tears and swallowed the anger. I realised my brain was back in the place of no hope.

By the time I was in my plane seat I’d died a dozen times in my head. To write it down seems ridiculous. As I was drawn back into the real world again I became aware of a boy behind me. He was possibly 8 and making some curious noises. A sort of cry mixed with excitement then outbursts of ‘the plane is going to go. Suddenly the couple behind the family announced the wanted to be moved. This was loud enough for most of the plane to hear. Most people politely stayed looking at their phones but I’m not very good at that. I swivelled round to see a family with children of different ages. This boy clearly had learning difficulties and was anxious at flying. It came out of him in little bursts like he didn’t know whether this was a terrifying place or the most thrilling ride. He hadn’t done anything wrong, he just said out loud the feelings that we probably all were thinking. I watched as the boy’s mother turned in natural defence of her child. ‘Are you asking to move because of my son?’ she asked half vicious in defence and half shocked beyond belief. ‘Yes’ the couple announced to the plane, ‘we are moving because of your son.’ Every part of me wanted to jump in fierce and wild to stop the pain.

I bit my tongue and caught the mum’s eye, I offered her my row of seats in front away from the couple. The cabin crew swept in and expertly moved the couple away to the back of the plane. The mother burst in to tears. The cabin crew tried to placate them both by offering sweets and a ‘trip to the flight deck’. These frantic gestures were lost so they listened whilst the family explained that the couple had been discriminatory and said appalling things about their son. I felt for the mother in that moment, she had tried desperately to shield her child from the horrible hatred. She was in a state of pure panic. How could anyone do this just because the child made a sound or spoke in a way that is ‘abnormal’ (I personally found him a joy)? Later in the journey I turned and caught the mother’s eye. I wanted to say how appalled I was but just mouthed ‘are you ok?’. She whispered back a thank you and smiled. I didn’t want to save her, but just let her know she wasn’t alone and others were with her.

When you enter the world slightly outside of the normal realm you see how difficult and unforgiving the world can be. My sister has talked at length on her blog about grieving (it’s worth a read and is here ). Its not always about the death of a person but sometimes the death of something else, like your expectations or the life you thought you had. I know I have been experiencing extreme grief as part of my relationship breakdown. With this has come a whole lot more. I’ve experienced the death of my life as I know it. I am unable to work, looking at a future on benefits and no longer able to do all the things I once could. Auto Immune has irreparably robbed my life and I sometimes grieve for what I once had.

So forgive me if I get sad from time to time. I’m trying more than you know to keep my shit together. In amongst these moments I cling on to the small acts of kindness we are all capable of performing. Smile at a stranger or ask someones name, it costs nothing but a little bravery. None of us know what path the other is treading, what came before and is to come in the future. Maybe the couple who had asked to move had been anxious flyers or something else had happened that day. Their actions weren’t the best way of behaving, but we all make mistakes right?

I will continue to fight tis anxiety daemon, its not a linear journey and I’ll bounce around. I’ll also continue to to fight the prejudice and invisible illness in the best way I can, with compassion and kindness. I’m back to start all over again.

I saw this today, which says a lot of my ramblings far more succinctly.

Love, and kindness to you all with the most open of hearts.

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Today

The streets itch with discontent,

The map was off centre all day.

Childish tears threaten to break through the adult face.

The stone walls sweat yesterday’s rain,

I pound the concrete with sticky heat between the layers of my clothes.

The lipstick curdles and I wipe it raw with paper.

 

Fingers bandaged from no fight,

I’m neither citizen or tourist just broken knees.

Guts cramping propel us from cafe to cafe.

Food sticks in my throat as I push it round the plate.

My hands tremble as they try to raise the cup,

Thick black coffee drives my blistered feet.

 

Something is not right in the world, I’m not quite here or there.

It’s ugly criminals saunter like they own the roads.

We ask ‘why are people so cruel?’

Then the man stops to pick up some other’s rubbish.

A women tends the silk and velvet with more love than she knows.

The smile of the woman on the bus is the most beautiful thing I’ve ever seen.

 

The flash from no camera, the sky opens and moans.

White then orange makes my heart pound.

‘Don’t walk on the floor with bare feet’ she says.

It makes me want to feel it’s force, to feel alive,

to take off my socks and dance with life on the cold tiles.

I bleed with the sky and prepare to begin all over again.

Bird. Moon. Mirror. Lighthouse. Wolf

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There’s a caged songbird in my chest,

It’s meant for the sky and riding the air.

It forgot how to fly.

It flutters and bleats and can see the other side,

but my ribs hold it captive.

 

There’s a moon in my head,

Its meant for the ocean and to follow the sun.

It forgot how to shine.

It waxes and wanes and can see a path,

but my skull holds it prisoner.

 

There’s a broken mirror in my eye

It is meant to reflect beauty,

It forgot to be present.

Now it only see’s a painful past,
my gaze holds it there.

 

Theres a lighthouse in my soul

It’s meant steer the ship through the storm.

It’s light is buffered by the wind.

It looks to the future and brighter days,

but it’s light is dull against the fog

 

There’s a wolf in my body, 

It’s meant to be brave and care for it’s own.

It lost it’s pack.

It licks it’s wounds and takes time to heal. 

It will bear these scars with pride.

 

Never


Part of me wishes we’d never met.

That we’d always been lone wolves and never a pack. 
Never swam and chased underwater or danced and laughed at our four left feet.
Never caught trains on adventures and driven for miles whilst playing silly games to make it pass by.
Never stood so proud of each other whilst watching girls on roller skates collide. 
Never hunted the magical potions created in bars. Two maraschinos please oh and an espresso martini.

Never created delights to feed each other and had kitchen meltdowns to match.

Never hidden from the world under duvets whilst eating mountains of pizza and ice cream just to be together.

Never thrown pizza off cliffs and shouted from balconies into the London night sky.

Never had ignored each other whilst drawn to screens or watched series upon series back to back whilst I asked too many questions.

Never have had mad making projects in which I had the idea and you made it happen. 

Never put dusty records on the record player and sat in our pants.
Never been humiliated by our daft dogs, taught them to swim or snuggled as four.
Never have enjoyed making fires inside and out. Never have foraged for food and dragged home tree limbs with guilty faces.

Never have made lemon meringue pie with all my heart but it’ll never be your mums.

Never have spent hours making and finding the perfect gift to make each other just to know how wanted we were.

Never have barbecued in the rain.

Never have put the world to rights with a shared intensity. Anger in our words for peace and a better place.

I’d never have thrown your shoes over the wall or teased you about your new clothes.

Never have held hands in the cinema and felt our hearts race at being side by side in the dark. 

Never have invented the film rule or searched endlessly for the tiny remote.

Never have shared Sunday mornings in bed as the closest time together.

If only we’d never met…

I wouldn’t have given you that hug at the gate thinking you still cared. 

Or woken up from the pills to hold your hand and look into your eyes for an answer to the pain I’d tried to take away.

In that moment I trusted you still and believed you cared and we connected. 

But all of the nevers were lies.

I broke my rules for you…

On an adventure that took us from cliff tops to forests, we ran free and hid amongst the shadows, sick with being found out, wasting away like a panicked songbird wanting to be set free.

I broke all the rules for you.

We lost a key in the forest, we swam in the dark water. All the danger was there and you made it safe. We flew away to a house that crumbled by the sea,We lived in ruins under the weight of guilt, we pieced together a home.

 I broke all the rules for you.

Given a crown to wear  I let myself believe, this was a fairytale and I could be queen. I dared to dream of adventures that would last a lifetime. To always say your name and be ok.

I broke all the rules for you.

You wore my name and I walked by your side, my every moment was to grow us, to nurture what little we had, I loved you so fiercely that I forgot to love myself,  I broke us somehow when I broke all the rules for you.

I broke all my rules for you and now I’m alone in a dark forest, lost amongst the shadows. 

I walk the cliffs alone, pulled towards the dark waters below. 

The house is an ugly broken shell and I don’t even have the key. 

The adventures won’t happen and the crown is made of broken glass.

 But still I break all the rules for you.

Crisis

I don’t want to write in the moment of pure dispair and panic because I’ll just vomit out all the emotions on the page. I’m post meltdown and a very dark place which involves googling ways to ‘go to sleep’.
It’s all too much to even put into words. I’m dizzy when I stand up and there’s acid fire burning a hole in my lungs. My heart feels sore and dull. Prickly heat rises through my body into my arms before I want to pass out. The thoughts come so fast and the pain. Pain I can only describe in physical terms because I’m so used to it.

These are my reasons I feel so low:
I am in constant pain and always tired

I’m worn down by feeling ill all the time

I’m a prisoner of the disease that’s robbed my life

I’m sleeping on a mattress in my sister’s house because I’m too scared to go home

I’m a burden to those around me

I let people down all the time

I can’t to the job I love

I can’t do most things without being exhausted 

I’m heartbroken and grieving

I have nothing to show for 35 years of fighting

Yes it’s a selfish list all about me. I know this and this makes me feel guilty too. I’m fighting this so hard, harder than you’d imagine. But this nasty little thing creeps up on me forcing me down a one track alley…