5. Slapdash

Old woman, theatre performer.
Harmonica player outside Baron's Court Station

There’s a woman standing outside Baron’s Court tube station playing, or rather attempting to play, a harmonica. I’ve seen her here before, she hangs out at Baron’s Court Housing project where they do free meals. She wears a wig and theatrical makeup. I thought at first she was a transvestite, like my neighbour Steve who goes to the Coop in stilettos and a mini skirt, but apparently not.

My other slightly more sober neighbour tells me she is an old theatre performer, been out of work for years though, a drinker with mental health issues. “A right care in the community that one” say’s my neighbour “a real special“.

The story goes that she was having medical treatment for a congenital brain disease during the privatisation of the NHS. She could’t afford to continue the treatment with the specialist hospital so ended up going through the Charity Care system. The hack-up job the church hospital did was well meaning but naive and slapdash, her memory was blown to pieces.

This is all just rumours you understand, but she is quite mad!

Still, she stands there at Barons Court station feather bower and all, screaching out lunacy and blowing down that poor old harmonica. The Station manager occasionally moves her along but she’s back the next day. On Sundays she is particularly enthusiastic, her words seem to take on a hell fearing vigor as she denounes the Sunday shopping  public.

Next – 6. Dread

Previous –

1. What YOU need!

2. Abel

3. Underlondon

4. Eyes in the Machines

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

Brain Porn 2 -The Grand Plan

Miss Roberts in a wedding dress and crownSo finally, after tearing my hair out over it for a whole year, I was brave and said yes to the operations to have the Alien removed from my brain (Brain Porn- Notes to Self) I was terribly pleased with myself for getting up the courage to do that. Then the hospital tell me if they start the operations but find they can only make the Alien smaller, not get rid of it all, then it may be more dangerous than if they’d just left it alone. Oh.

So I may just be left to rot.

Good news is it is unlikely to be causing dementia, bad news is it is likely to be cutting the link between my brain and my words.

But brains can adapt can’t they? I’m sure someone told me that black cab drivers brains actually physically enlarge when they do the knowledge (though that could have been my uncle John boasting). A doctor once told me that I was probably meant to be right handed but because the left side of the brain was damaged it decided to swap over and use the other side. So if I can do that with my dexterity I’m sure I could do it with words. If I just write and write and write, and read and read, and perform, and just keep going it’ll find a way to adapt, surely.  (It is compulsory that you agree with me here, the alternative is me screaming AAAAAAAAAAHHHHHHHHHHH!!!!!!!  which may never end )

So there is a plan. There must always be a plan. It doesn’t matter how ludicrous having a plan is to my circumstances, no matter what the chances of completing it, it has to be there and it has to be grand. And capable of being rehashed and re-presented as and when required.

The plan is to produce an album/Sci-fi detective novel. I had previously been planning to do a solo album on RIM Records, and a musical with the Rude Mechanicals. Then when I thought I was going in for the operations it was an album come novel in 8 parts linked to the operations. Now it is floating. I’m not sure what it is, but I’m going to start it. Had a chat with the mysterious Erreth Sondabeng, borrowed some equipment and am going round recording sounds. I need sounds from underground, tunnels, underground water.

I think I want a rhythm tapped out on a table, that gets repeated at various points, on various different objects. Altered, distorted, transformed, lost, and brought back again. And the sounds of those objects should be tasted. In any single note there seems to be many many sounds so I ‘d like to explore the different sounds without worrying so much about key. Though I imagine its like colour and the possibilities are endless so you have to pin it down to a readymade system in the end, but I’m going to start with found noises and the tapping of objects and see where it takes me.

And it is still vaguely based on The Time Machine.

Note To the gentleman who read the  first Brain Porn blog and accused me of washing my undies in public:
Too right I am! Waving them in your face I am! Dirty no good private brain porn. Why? Why not? Because it doesn’t fit well into polite conversation, and if I write it here you don’t have to read it.

Derek Part 6. Fear

Heads of Derek
The Derek heads I made to place under my bed.

I imagine you who have followed this Derek story think it to be just a story, a made up piece of slightly odd fiction. It’s not though. It is all true. Or at least was at the time to me. To the left is a photo of the Derek heads I made, out of old bed sheets, pillow foam and strands of my own hair. They were made to protect me from the real Derek in the loft. Fifteen of them in all.

I am a coward. I pretend to be brave. I do all sorts of stupid and humiliating things to pretend to myself and others that I’m brave, but I’m not.

I don’t have my brain operated on, not because I’m brave and can live with the alien, but because I’m absolutely terrified of some bloke rummaging around inside my head with a glue gun.

I deal with things by turning them into stories, jokes, games, things not to be taken seriously. I couldn’t tell anyone I was really afraid there was a man living in my loft, they’d think I was mad. So I turned Derek into an odd poem, which I performed on stage whilst wearing a large blonde wig. I then turned it into a silly song I recorded on an old children’s Fisher Price tape recorder. The guitarist from the Rude Mechanicals  created a riff for it and it became the song that the band now play. All to deal with Derek.

No one knew how really scared I was of him.

So the Derek story had to have an ending where I somehow dominated Derek, turned him from the large dark presence watching me from the loft, to a silly lovable character I could deal with.

To be continued… Part 7.

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