14. Betwixt and Between

Walking through a woodWednesday 29th August 2020. Just back from Wales.

It is the woods you know, the woods and the ferns and the river that feel most like home, not the house. The way the trees cling to the hillside, their roots grabbing at the toppling rocks, the lichen coating their arms with a silver skin. They shout so deeply it can’t be heard but it turns my insides. They talk and talk, muttering secrets. The first fit I can remember having was in a woods in Wales like this, maybe that is why its ghosts are so powerful.

I crouch in the mud and hang on to the trees trying to stop myself from falling completely, the dogs hover round me nervously. A rush of adrenalin, I breath in as deeply as I can as if to breath in the wood. Vast moments containing too much of everything enclose me, un-managable stuff, colour, sound, light, texture, smell, too much to cope with. My face hangs just above the mud, reflections in the water dazzle my eyes, memories surround me, mismatched, not making sense, I taste the air, I would not miss this experience for all the money in the world!

Of course I gave up believing in witches, fairies and trolls in the woods years ago, as one is supposed to, but i know here there is something big, something powerful, something that breaths and contains all breath.

When I can stand again we follow the river through the woods to the beach. And then there is the sea. I cry when we reach the sea, as i always do, something in me is not strong enough.

I want to make things that are like the woods, things/situations that are magic. A threshold, betwixt and between, somewhere where the self is lost into the moment.

So here I am now, back in London, trying to straighten out crimped thoughts, drowning in cheap wine, watching strange insects crawl across my keyboard. I am homesick for the trees and keeping myself busy.

Busy doing what exactly?

Explaining that I am a Twilighter, as is Steve. ‘Twilighter’ is the official tittle given to us, first by the arts council, then by everyone as we started to become invisible.

I live in a basement flat on Talgarth Road. It was once a council property back when there were council properties. Officially now I am a squatter, but no one will go to the effort of trying to get me out. There are a lot of us here on Talgarth road. The properties are in bad condition, the road is slowly collapsing into the cellars beneath it, there is no money in buying them up and developing, best just to pretend they are not here. So the buildings became invisible and gathered invisible people, Twilighters, those with problems, illnesses, things that can’t be cured easily, those society would rather not have around.

Now Elsie is definitely not a Twilighter, a very respectable lady indeed these days. She lives in a very respectible flat off the main road, just round the corner from Barons Court. We used to be good friends,  but it seems that has changed.

It was when she realised she couldn’t find Abel that I first noticed the change in her. She searched down the tunnels for him, she was determined, I got worried about her wondering along the tracks of the Piccadilly line in the dark. Then one day I saw her and she looked an absolute state, ill and dirty, coughing and wretching. I asked her what had happened but she wouldn’t tell me. After that she seemed to get very career minded, stopped mentioning Abel so much, stopped talking to me much at all, I started becoming as invisible to her as I am to most respectable citizens.

Or perhaps it was my talking to shouting trees that has freaked her out. Still being invisible has its advantages.

Previous:

13. The Alter

12. Malformed and Obscene

11. Her Pet Project

A Secret, an Old Story and a Whispering Maggot

Tulip growing from bulbThe story is about a friend called Lucy I knew at school, but it is also a very very old story, told thousands of times, probably as old as history.

Lucy was obviously very clever, she had been dumped in the Special Units at school because of her troublesome behaviour and managed to get out of them a term or two before  I did. Lucy lived with her mum in a tiny flat on a council estate. Her Mum was an alcoholic with mental health issues, there was no Dad. Lucy was a superb shoplifter, who whenever caught would deliberately breath so hard and fast she’d give herself a seizure. If she did this at school I was always the one the teacher chose to sit with her, I don’t know why, my epilepsy wasn’t diagnosed till much later.

Lucy was tall, dark haired, creamy skinned, high cheekboned and beautiful, which is what caught Richard’s eye.

Richard was very In with the In crowd. He was cool, fashionable, good looking, good at sport, not all that bright but then being too bright would have spoilt the image. Richard was in the middle band at school, being a very middle kind of chap, and it was his class Lucy managed to move up in to from the Special Units, and where I followed later.

I remember the biology class with maggots. The screams as they were thrown across the room, boys trying to stick them down girls shirts. I remember Lucy being cornered by Richard and a maggot, her squealing, him with the maggot between his thumb and forefinger and a sneer on his lips. This may have been where the romance started, I don’t know.

Lucy asked me into the girls changing room for an important talk. “I’m going out with Richard!” she said in an excited whisper “but you mustn’t tell anyone, it’s a secret”. I knew why it was a secret, she was a Special, like me. If you came from the Units you were a Special and there was nothing you could do to change that. A fashionable boy like Richard could not be known to be dating a Special.

Lucy was crazy about Richard. In love. They slept together. For 15 she was very sexually confident, I remember her once brashly informing the biology teacher, as he tried to demonstrate how girls walk,  that girls and boys were different not because of the way they walk but because “he has a penis and she has a pussy”. She  of course told me the details of her and Richard’s love life, as teenage girls do tell their friends. She was so happy how could she resist telling me? And Sasha, also from the Units, and a few other friends that could perhaps keep a secret.

The relationship went on for over a year. Lucy arranged it so she had lookouts, so her and Richard could have a snog behind the bike sheds without anyone finding out. Richard didn’t mind Lucy’s friends from the Units knowing, as we didn’t count. The secrecy excited her obviously, but still she longed to be accepted as equal. In class Richard became increasingly cold and cruel towards her, she’d often be in tears after School.

Eventually of course, as maggots munch and school girls gossip, the secret slid out. Fashionable people were sniggering at Richard in the corridors, whispering about him in the Gym. To think that he was seeing her!

What could he do but create a scene? Demonstrate publicly his contempt for her.

It was Friday afternoon break time, a hot summers day. Lucy, Sasha and I had dumped our bags on the grass in a pile outside the music huts and were lounging on the grass a few feet away.

A football is kicked over on to the bags, Richard comes running after it, but instead of retrieving the football he kicks Lucy’s bag into the air.

“Richard, that’s my bag!”  Lucy giggles, hoping that Richard is going to pay her some attention.

Richard carries on kicking it.

“Stop it Richard”

“Why?” he says, “it’s just cheap crap like you”.

“Richard?”

Lucy runs forward to try and grab the bag, by now a crowd has started gathering round and cheering Richard on as he dribbles the bag between his feet. Lucy reaches forward and grabs Richard’s arm, he pushes her off, she tries again, he knocks her to the ground. She’s lying there crying looking up at him with big puppy dog eyes. He kicks the bag into her stomach hard and spits on her.

“Fucking slapper!” he shouts “get back to the Units you stupid dirty whore!”.

Laughing and cheers come from the audience as Richard struts off.

Lucy stays lying on the floor, her head buried in her arms, panting. I try to calm her down, get her to stand up. The audience disperse, not wanting to be seen as responsible for what’s happening. She can’t get up but roles over into a crouching position. I sit there next to her, not a lot I can do now. Snot and tears and saliva merge into a constant trickle flowing from her chin, she is shaking, swaying, gulping and choking, turning every colour and eventually blacking out. I just sit there. I know it will pass, as all things do.

I knew also that there were planted little maggots in our heads munching on brain matter for the rest of our lives, and the maggots whisper  “No one can love you, because you’re just a stupid dirty whore from the Units.”

Texting from the Death Bed

There I am, knickers torn apart*, lying on the table with a tall dark stranger pressing down hard on my groin. For 15 minutes. It hurts.

We discuss tea and the weather.

He offers to show me revealing pictures of my brain, but then the camera screen stops working. He starts looking at another screen, a computerised 3d image of a skull from various angels. Impressive.

“Is that me?” I ask

“No” he says, “that’s another patient”

And I feel jealous. How dare my surgeon be considering someone else whilst he’s still finishing my operation!

Now days you can use mobile phones in hospitals**. How odd this is. There I am forbidden from moving my body but I’m still able to answer my phone. I have a fancy phone now so I can also use email, Facebook, camera, as if nothing was wrong. Good in some ways as 5hours of being very awake and only able to move your arms is difficult. Bad because the temptation to  Facebook/Twitter/ text the world to death with a running commentary is overwhelming. Think I may facebook/skybe my next operation, sneek the phone into the operating room, even skype my own death!

In the shower this morning I looked down at my body and thought “wow, a tiny tube is put in an artery in my right leg and is fed through all the way up to my brain. That is amazing!” But this time it hurts more than last and I wonder how many more tubes my body can take.

After all I am basically fine.

*Luckily these are not my own knickers, they are one-use-only disposable knickers provided by the hospital. I don’t understand the purpose of them, they’re flimsy and see through.

**http://www.nhs.uk/chq/pages/2146.aspx?categoryid=68&subcategoryid=162

Derek – The End

Today has been a bad head day, and my brain is now all over the place making connexions where their are no connexions. The temptation on these days is to talk about it. I try to avoid having  much to do with people on these days, try to stay in and out of trouble, but sometimes the connexions seem so important its difficult. I just must make contact with…

Today I did some gardening and the plants knew me. Their electric greens and blues crawled inside me. They had a beat to them like a heart. They knew I couldn’t separate myself. I was weak and they were everything. My head clings on to hundreds of half remembered stories, something very very important, but what?

So maybe now is a good time to end the Derek Story, for Derek is very real in many ways and he knows me as the plants did today. I dream of sharing that with another human, but so far, although I have imagined friends have understood,  Derek is the only one who I can be sure really knows.

Have you ever been convinced of something even though you know it will sound like madness to others? Have you ever tried to cling on to your sanity whilst doing some serious tango with the alternative? Knowing for certain that there is something there that is vital to you? People ask me about Derek when they hear the song or the poem, they ask me what he symbolizes. He symbolises nothing. He is Derek. And I have a cunning plan for if he should ever venture down from the loft.

I’ll sit him in front of the TV and feed him on oranges and custard creams, on semilena pudding and rice crispies, on cucumbers and baked beans and mashed potatoes and monster munch and ice cream and apple pie and yogurt and more yogurt and more custard and cheese. I’ll feed him up till he is big and fat and huge. I’ll feed him until he is enormous! Then I’ll squeeze him into the tiny gap underneath my bed, so I can hear him SQUEAL whenever I go to bed at night.

THE END.

Cheshire Cat from Alice in WonderlandPostscript…

Derek part 4. Truth

Derek
Derek - the man in my loft

Truth is an awkward thing don’t you think?

When I started telling you this story I said it would be the truth about Derek, and I am trying very hard to tell you the full truth. But it’s slippery. My memory has wobbly parts. I remember when I came round I didn’t know who I was, I had to piece myself back together like a jigsaw puzzle. Remembering what a bath was, remembering how to get out of it, remembering that there was a world on the other side of the bathroom door. So much stimuli hitting me, using me as a punch bag. Such a strenuous and desperate process fitting each piece into the correct space, and knowing which pieces to ignore because they’re part of a different jigsaw altogether.

How long did I lay in the bath? How much water did I cough up? How long did it take me to open the bathroom door? Truth is supposed to be “in accordance with fact” as it says in my computer dictionary here. Me on my own alone in my flat, entirely dependent on subjective experience percieved through my own battered senses, ordered in my error riddled brain, how can I ever be in accordance with fact? How can I alone ever tell the full truth?

It is just as well then that I was not alone that night, for the fact is I had a man in my loft.

I decided to call him Derek.

To be continued

Part 5.

Derek part 3. Above the Bath

Eye looking through a peek hole
An eye looking through the hole above the bath

After that I noticed lots of tiny little holes in my ceiling. Whoever or whatever was up there was obviously spying on me. Watching me eat, watching me sleep , watching me get dressed, watching me…

One evening I was lying in the bath and noticed a hole in the ceiling directly above me. I was sure I could see an eye staring down. I tried to get out of the bath but couldn’t move. I was paralyzed, naked, lying there in the bath.

For just a moment it was fascinating, everything suddenly made sense. The bath water and I had a deep, intense love for each other as we swapped atoms, and everything was going to be wonderful.

Then snap – the sound of the radio playing in the next room. I didn’t have the radio on. No it wasn’t the radio, it was people in my flat talking about me, I couldn’t quite make out what they were saying. Suddenly the walls came alive and were walking towards me. The ceiling started collapsing,  crumbling into the bath. Then the part with the eye came to float just above my head. I was staring directly into the eye. It was reading my mind. It knew my  guilt.

The walls were laughing at me now, almost deafening laughs, the people’s voices had turned into a huge black raven, swirling around in the sky above.

“Remember me remember me remember me” came the voices

White white white bathroom walls, holes and cracks and yellow stains, breathing, everything breathing, all seeing, all knowing, remembering everything ever.

Not me, I’m , I am,  I, I, i, i. NO!

Nothing.

“Drown drown drown drown”

To be continued…

Part 4.

Brain Porn – Notes to self & questions

Alien - image 1
Gor – look at the size of that!

Showing you these images feels a bit like showing you pictures of me naked. They are of the Alien in my brain from different angles. Every few years, usually after a bit of wobbly health, I reconsider whether or not to have it operated on.

It is the size of a human fist. The veins attached to it are feeder veins, they keep the thing alive. To have it removed each one of these feeder veins must be glued up from the inside, one at a time. Between each procedure there would need to be about a 6 month recovery period. There are a lot of veins to be glued so the procedure would take a considerable number of years. Once the veins are glued and the Alien is nolonger being fed it would be zapped with lasers in radio therapy. Success is a 50/50 chance.

Angiogram image
Get a load of that!

So what does it do? Sits there mainly, grumbling. It feeds on the blood making the rest of my brain a little anemic. It’s damaged part of the temporal lobe giving me frequent epilepsy (which is unlikely to be cleared up by the operations as the brain damage is already done). Sometimes it leaks a bit of blood which is bloody painful (excuse the pun). But the question is more what it might do. It might, as it did 10 years ago, decide to pop, explode, literally burst a blood vessel. This could cause a stroke, disability or death. Or I could be fine.

So what would you do? Leave it, live with the risk? Or spend the next god knows how many years going under treatment for it?This is more of a note to myself than anything else, so I’ve made things clear in my own mind. This time round I hopefully won’t have to go abusing other peoples heads to find the answer. And maybe this time I can avoid some of the guilt because no I didn’t ask for it, I don’t want it. Maybe I wouldn’t be performing Miss Roberts on stage if it wasn’t for the Alien but then would I need to be performing? Jo + Alien = Miss Roberts?

AVM in Temporal Lobe - angiogram image 3
What a whopper!

Perhaps I could have a normal life and be happy? But a decade of being ill on a fifty fifty chance of a normal life is quite a bet. I’m not unhappy now.

What would you do?!!

And no it isn’t the result of watching too much porn.

Yours

Jo & the Alien xx