It’s the most beautiful time of year in London when the trees turn gold and shed and men go to work in long black coats with the collars turned up. Tourists dress as though we are in Siberia and street corners smell of caramelised nuts in paper ones. The gloom and dark evening crave a need for warmth, pumpkin lattes and exploring shadowy corners no summer has left.

It has been long since I have written but not much has changed. I still eat Tesco sandwiches on concert benches by the Thames and decamp to Starbucks to work on my online shop that has not sold a single thing since April. That was a second hand pair of leggings. The ‘charity’ landlord are still hinting for somewhere for me to live where I can pee without the weird neighbours banging or stamping up the stairs behind my bum. But life in Brackenbury is mellowing more. My graduation is in a few months. I am not going as it feels like a second wedding without a husband. I haven’t declined in the hope they are left calling out my name, holding up events as one last mistake I made as the thickest student they ever have

 

What can an MA in English Literature get me as a 33 year old who has never had full time employment and has a CV showing hula hooping and two years of illness selling junk on eBay?

Anyone want to employ me?

I just want to live on a houseboat. I want nothing more to live on a houseboat….and have somewhere to do aerial hoop.

Any takers on magically transforming my life please get in touch because living in a free West End vintage flat is safe and the houses look pretty but, boy, is life snobby and dull here. I like unicorns. The neighbourhood like property investment and Mazdas. You get my drift?

 

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The Return of Sibylla: Neurotic Rich Show Off Ladies

‘Oh darllinngggg darling how are you? How, are, you?’ The shaved head ultra career-socialite, middle aged woman hollered in the middle of a chain coffee shop right in front of Sibylla’s table. Before the man who recognised her could reply the woman bellowed ‘I’m at the Royal the Academy now, ya ya, (listen up everyone I’m richer and more successful than you!) Catering wasn’t for me I had no life. Now I work at the Royal Academy (did the whole cafe hear that, pause for jealous gasps of amazement) we have moved to the posh bit of Putney (originally built for the working classes as London’s first housing estate) four bedrooms, dogs, two bathrooms (more than you’ve got).’

‘A swimming pool and room for a pony?’ Sibylla wanted to blurt out remembering Keeping Up Appearances on TV. But instead she squinted at her laptop that still hadn’t been paid for and grumbled she had never felt so poor.

The woman spun on her heels and started snapping orders about work to colleagues on various tables. No one else seemed to be speaking. Does she know this is Pret, not a boardroom, Sibylla wondered. All she had to boast of was a decade on state benefits, a charity owned flat with no sufficient windows in the ugliest edge of Brackenbury village and a bag full of catheters and notebooks. As she spoke her accent leaked with the voice of East End working class, too many cigarettes, all glazed over with city exquisiteness. it sounded an extra vocation to keep up.

There was a deep perverse longing to stand up and in the same false accent flail her hands declaring ‘I have a half sized toilet in a cupboard and sleep on a broken futon, my head only a piece of wood away from stinking noisy traffic. It’s fabulous darrrrlllllinnnggs.] Do the splits and return to her lunch.

She kept quiet and stuffed her mouth with the chewy pickle baguette.

 

 

 

Of London, Now Summer


‘All cities are shitholes and this one is the biggest of the lot of them.’ A man tells his friends walking over Hungerford Bridge. ‘There’s a body, face down in the stream….’ he begins to sing as I pause on the railing.

The rain had stopped in the hot evening breeze, water lapping in green. the theme tune of captain Pugwash echoed over the water in a surreal joke. It’s source, the latest boat ride for tourists in a R.I.B boat. Maybe they get to pretend they are being rescued from the Thames. And on the opposite bank as the din of too many buskers beats louder, a big pink route master bus is selling frozen yoghurts.

I hear the crowds amazement at a ring of b-boys. Beside the Eye a hen party hollers out ‘knees up mother brown’ doing kicks in their heels and squeezed on dresses in unexpected mash up of the decades.  I walk up to Westminster bridge as the big bonging of  bongs rings eight o’clock from Parliament, wishing light evenings could go on forever, that London could edit out its winters.

The City That Never Sleeps (and why it really should go to bed)

The futon, after much dizzyness and heaving of lungs and matress, is now in my living room. I have begun to realise there is no such thing as a quiet night in London especially with my thin ceiling and bustling street. Sometimes, if the sleep paralysis kicks in I become convinced I will die from another noisy night. 

And no, earplugs don’t work- they make tinitus louder and muffled sounds more fretful of the source. 

The ‘this is all different/I’m so busy/doesn’t this scatter cushion obsession look good’ new home thing is getting it’s reality checks. 

So after waking at 3am to more voices and stomping I made it through the morning rush hour like an explorer of a new civilisation in the May sunshine. It is all heels, bare legs and lattes and suited men on teenagers scooters making me think of street scenes in Sex and the City. 

The nurse at Moorfields had to force in anesthesia and dilating drops to my clamped eyelids. As the ward blurred I tried to  guess what was on ITV’s This Morning and not fall back to sleep. The consultant said I don’t need eye surgery to remove life-long flickering lights in my vision. She says it’s nerves being damaged from Retinitis Pigmentosa. Nerves are the answer to all my health probs lately. Next week I am literally having my head tested to check my brain and nerves. 

At what point did I morph into Vivienne Eliot? Bring on the bromides…

It is a bit of a bastard diagnosis getting to avoid the fear of cutting my eyeballs open and general anesthetic only to know I am stuck with the private pyrotechnics in my eyes. 

The staff were lovely though and gave me free tinted glasses which, although I look like a hasbeen rock star, make me finally see in sunshine. The effect is almost biblical. 

The real miracle would be deep, uninterrupted sleep…

Here is my pretty pink walk home from the thames. 

No Sleep ‘Til Hammersmith

A chapter in my life has not just closed. It is more as thought the pen ran out for another page. I have left the Blind House – supported housing for the visually impaired and like Alice returned down the rabbit hole of this intricate city.  Rumour has it I have been banned when I intend to work with them in helping others. I crept away with no announcements, to swirl into back into London waiting for me. Real London. The move was a mild psychosis of seven days ripping tape and hunting for cardboard.

But I am away from a housing scheme that stripped my health and esteem and only looking back, only five days in, don’t recognise the person I was there. It was institutionalised so that disability was not a matter of needing new ways to do the things and reknow, relearn myself  but a sedentary swith off  of life force. Sound extreme? Tell me a housing estate where, in your thirties, people turn up unannounced at your doorstep with clipboards and passive smiles insisting you have to tell them everything from your toilet troubles to what you spent on food that week.

In a world of blind pilots, blind ballerinas I became mind fogged in a vortex of hanging around for a smoke (I don’t smoke) and feeling as though  a belligerent retirement had set it.

I turned up as fledgling circus girl and burlesque performer with nothing but a bag and a trapeze I had no place to hang.

I left two years later in a methotrexate daze with nerve damage, sleep deprivation, four extra stone in weight and claustrophobic loss of breath overy time I pictured the new flat. Next month I need my brain testing to check why there is nerve damage from such lack of sleep and constant sleep paralysis.

I grew up in fields. The only comfort of the blind house was its nature, it’s oak trees and fox cubs. I cried in the garden perched on the vegetable beds the last evening mourning my original flat there. the neighbour with dementia had gone above my vacant balcony, the drunk below long gone. I would never sip wine on that balcony again watching the sun set with the darling man below-but-one playing Jim Morrison and the Cure.

I wasn’t sad to leave the flat I had only been in less than three months before being told we all had to go. I was sad for the first one in the corner overlooking Richmond Park. They had found me a new place with tiny high windows and not a blade of grass.

The strange old men like school cliques set me jumping ship again. I sat in a taxi, numb, holding musical instruments. The cab driver made little talk.

The new flat is a real flat and not the 1960’s rabbit hutches. No one lingers outside to insult, to nose in. It has an old London looking front door, wood floors and thick walls. Days have been a rush since, a never ending to-do list.

London has fully gobbled me up again and I am just beginning to reawaken, to feel like an adult and not a patient again. The sounds of the neighbours on the stairs above are not the bangs of a scared old lady trapped with dementia. I can do what every I like without anyone needing to know again. You open the door and life is just there on my doorstep on the corner in such a stereotype of Londoness.

Everything gets to begin again.

 

 

 

 

The Suicidal Model in the Cafe

This is for the man in Pret a Manger, Hammersmith on Saturday afternoon who intended to end his life. Who I shouldn’t have eavesdropped on sat alone at the next table but I couldn’t keep my mouth shut. And when it opened it couldn’t find the right words in the short time and I’m afraid I have only made it worse.

I want you know you will cope with what you are convinced you won’t.

You won’t believe that,  and I can’t explain how but I totally believe you can. When I pointed out I am on meds for life too, that I am going blind and disabled and would never be a beautiful model it was to say ‘You can get through this.’ You told me that was my choice but I didn’t choose disability or to lose my career as a performer because my body and mind became mush. Others chose that by denying me sleep so badly my nervous system may now be damaged and I have doubled in size. Losing the circus, my role and my stage at the cost of others will always haunt me. But there is too much in life that I like aside from my own predicament that makes me grab at life.

We all have our sob stories but as a total stranger it was horrid to hear you threatening to stab yourself to the man that tried to listen to you. You have him – he will be part of you coping for something that hasn’t yet happened. And until it does you have to look out not in. You have to see who is there because people are concerned for you and that’s because they see something in you that’s worth having you in their life. That sounds like bullshit right now, but even not believing it let it be a lie that sinks in until you do.

Find things, even minute, even down to just your jeans, that you like and are alive to like and make that thing swell in your mind until you add to it another little thing, and another until without realising time has passed, and you are still here and it wasn’t that bad was it because you had those little things in mind.

Now here’s some practical bits:

When I shouted you have to love yourself and you shouted back I do- it means that arm on the most beautiful body in that coffee shop doesn’t deserve being marked. Especially not to keep others away from you that at the bottom of everything just want you to be ok again and the boy they knew.

Most of your conversation I caught seemed to focus on you sisters opinions, what she has but right now you need to focus on the opinion of your self because I’m sure in there somewhere is something you would hate to never know or do again and you won’t if you’re dead. Strip everyone away that is part of the worry, just for a little while. Take them out of your thoughts, take yourself away somewhere you don’t need to think, someplace you can just be utterly you and focus on getting yourself strong again.

I keep joking I want to live with Tibetan monks in silence and wake to birds and gongs everyday.

You said your modelling business is ruined and that hit a nerve. It’s awful when you are ill or unable to function at your best and everything relies on you to be done. But YOU are more important than any business, industry, finances. Find contacts and take the difficult humbling step of telling them you need time out, you need to put work aside. You may be surprised at who steps up, how many will take over tasks for you. Build yourself an army so you can step back and take the pressure off.

And lastly, I can not imagine what a child losing their mother feels like but you have made it to being a beautiful, articulate man with a place in the fashion industry in London. You have already coped with what you are now saying you won’t be able to cope with again. You have done more that cope- you succeeded.

From now on changes may happen that completely alter what you do or who you know but you will get through  this. Because if a fat snappy loner in a coffee shop is riled enough to stick there nose in and tell you to keep going, imagine what those who know you want, even if they can’t say it and that makes you presume you are alone.

What is coping to you anyway? No one expects you to cope if someone has died, no one will think less of you if you ‘can’t cope’. You’re allowed to fall to pieces but it doesn’t mean there will not be a time when you come out the other side again.

Keep strong in a living person in this city.

I wish I could know what happens to you.

 

 

Back in the Net

It’s the thing that spun me away from the circus. I have only met one person who has one too. He told me he made his own and smiled as I tried tricks all of ten inches above the ground with a bandage from ankle to thigh and still upside down.

My aerial net always seems to have a reckless and creature-like soul that comes alive more than any other equipment. It is has that brutish, tantrum misbehaviour and like a big black horse only I could gallop while other were thrown, find the right balance and it gives the strongest, blissful rest above ground.

It gave me my last performance and it gives me Butoh. It is my difference from anything else that was ever in the trapeze school of women in jazz boots performing grace to Phil Collin’s tracks. It is like Collin’s the horse in Radcliffe Hall’s Well of Loneliness. It is my infante terrible.

This is the first time in months I started creating with it again.

 

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Dementia

Nora wasn’t her real name, it was the name of the lady who lived in the flat before me but she died. Other than her post for cash prize draws and Christmas suppers at the rotary club, I know nothing of Nora. She is gone and when this is published fully so too, most probably, will be the flats themselves. It seems ok to pass her name up one floor and give it to the saddest case of an elderly lady that I never had the pleasure to meet: only hear.

I wish I could tell her history but I have less than fragments. If I change her name can I change her past, give her an intoxicating one. All the gossip fragments crumbs said that she was from Nigeria and was deaf in one ear from an accident. So let me retell her again with some sweet dignity that the Blind House denied her.

I like to think of Nora aged twenty five in a hot Nigerian city. a shocking pink floral scarf twisting in a mound on her head and eyes that saw. Eyes that didn’t crease when she let out her crisp bleating laughter. At everything she laughed at from hidden giggles to wild, unstoppable cries her eyes only widened and swallowed the world. Nora walked to buy food daily with a turquoise string bag sailing at her swinging hips. On a Saturday she would stop to buy fresh cut mango form a street stall and holding its waxy skin to her cheek for a piece of coolness under the awning, she would laugh at the world. Her favourite observation since she had been a girl, collecting a mango on Saturday mornings was the delight in watching people getting lost. There was always at least one lost person if she waited long enough, taking small bites on water cooled fruit. Some would get lost in short steps and turn in jagged mis-steps to find their way along the stalls. They would look so certain for a pace or two and then turn and pretend it was the other way they needed all along. Nora liked to pretend there were no stalls and just watched how funny she found their confused movements. Her favourites though were those who pretended they knew their way across the market only to come passing back again, and back again. She couldn’t work out why the lost made her laugh only that she knew exactly where she was with that fruit stirring her smiles and that she would never be lost. Of course none of this amusement and knowing of place on her expression will ever be seen, was ever seen. I caught her face once in the shadows of her bedsit. No story can make her not lost. I keep getting told dementia means forgetting but the nights I heard Nora’s confusion in it song of slams and crashes I can only tell you of a woman who became very lost in the smallest of places.

Peace in the City

Tucked away in Covent Garden is a small space of clam. Inner Space meditation centre runs free meditation and self awareness courses and classes and were the first people to teach me meditation. To me, meditation is like needed a warm bath after a day on your feet to relax your muscles only for the mind: our biggest muscle that has enough to do aside from all the thoughts and images we fill it with.

So after all the stress of my housing situation and its somewhat authoritarian attitude from management (a bit like when school teachers used to tell you off) I found myself returning to the shop in need of some calm. Guided meditations on Youtube have been helping me a lot the last few weeks to take a moment out but I wanted get a cd of something longer.

I was recommended for something a litter deeper to try their CD called ‘The Jewel’. It begins with a visualisation of sitting at a control panel and turning off switches with each part of the body. Combining this with the music I always picture a retro space movie imagery, a bit Barbarella, which instantly puts me in a better mood.

Wanting to say everything seems to be falling to bits without cornering the woman in the shop to my life woes I pointed out how being partially sighted in the West End is a bit like being on an assault course and was invited to use the Quiet Room downstairs. This is probably the quietest and calming room you will find beneath the crowds and traffic. I enjoyed the music and glowing wall like a hot sun going down.

Tonight I went to a talk hosted by them in ‘Letting Go and Moving On. It was really enlightening to hear the reasons I think deep down we know but ignore or argue on why we cling on to things that prevent us going forward. My broken record at the moment is ‘I am recovering from 2 years sleep deprivation from a drunk and a dementia patient who lost me my career and study and wore me down to being a zombie.’ I’m sure it’ll make Christmas number one. I have to let go of all this difficulty around me caused by the actions of living in supported housing. The fact that I finally took the plunge to get a new flat that feels like a lovely home and to be told I have to lose it has been a low blow on their part.

Recently I have been thinking of relocating to Edinburgh, the most beautiful place I have been where I feel I can breath and laugh. I want to focus more on low aerial dance and that is something I don’t fit the criteria or budget for in London. However it is hard when London feels so great right now.

On Monday BBC Radio four are visiting my flat to interview me and my ex neighbour. We have amazingly put aside our difficulties to try and fight this awful rehousing. But I am so tired of fighting. I asked the receptionist if we could use the lounge and she said she would get a member of the facilities team to ring me. I did not say why I needed it. Nobody rang so I went to the office and was immediately told I can not use the lounge for media purposes. In fact I was told the lounge can not be booked at all which is bizarre considering all the music rehearsals we privately book it for in the past.  What is even more bizarre is the facilities manager tells me he has warned that I want it by the woman incharge of rehousing us (the one who sugguested I should live in mental homes that don’t exist!) and all this is rather strange considering I never mentioned the purpose.

I rang rehousing lady who denied everything as always and said booking the lounge was nothing to do with her department! So how did she know I was doing a radio interview? See the daily petty stresses they put on us renting here. I like meditation- there is only the present you breathe in and everything else goes away. 

 

 

 

 

‘God Save You’ (because you are blind…at least I presume you are)

I’ve begun to learn that the most difficult thing about losing my sight in very complex and technical ways is not my lack of visual awareness but the perceptions of others.

Waiting for the brightly lit lift below Hungerford Bridge I stood behind the people already waiting and didn’t understand why no one entered as the doors opened. By the time I realised they were even talking to me that I ‘deserved’ the lift far more than they did and were waiting for me to go first, the doors and shut again. I got that usual, infuriating clasp of my coat without asking and poked towards the lift.

For all the public that treat people with white canes as though they are in dire need of help, how do you think I got to be in the same spot as you on my own, upright and human looking, in the first place? Did they think I live outside the elevator and these were my first steps of the day?

The left on the level before me and the old man said ‘God save you.’

‘God made me like this!’ I said back as the doors shut and as I ascended shouted to the lift door ‘Why on earth do I need saving?!

The only thing that I need saving from are the illegal evictions, without eviction notices, that the Thomas Pocklington Trust are using to remove 47 of us visually impaired people because it has decided we no longer qualify to live in supported housing for visually impaired people (anyone in the media or legal professions feel free to contact me on this travesty).

I don’t need God to save me. I don’t need pity for being disabled- I need a frigging lawyer.

There are women drowning to seek asylum and you think your deity needs to save me just because I can’t see? Me who is in my mothers fur coat in the most expensive city in the world living rent free on free travel costs and an iPhone in my pocket, wandering on my own safely, free to go wherever I choose, you think I deserve saving for the sake of two eyeballs? I don’t need the pity. I need a stick to tell my brain what I step on and although it can be scary as hell to not fall, in reality I’m probably back of the queue on God’s saviour list. It’s just the presumptions that somehow my life is less than those giving the blessings. I Know they are just being nice but it only adds to the frustration and feeling if difference, something lesser than their place in the city. 

My trek across London began on the 211 bus that takes forever but shows me the old brick and backstreets of Fulham and Hammersmith. It’s a favourite thing of mine on bored afternoons. You see if God saved me from disability then I wouldn’t have free travel.

At the road alongside the County Hall I seemed to be the last to realise the amount of people hanging around the normally dozy route to the river were actually evacuated from a fire. With tunnel vision the first thing I notice is that the Starbucks (my second home) I wanted to write in was taped off. What happened to Starbucks, I gasp not seeing the three fire engines and cordoned off road next to it. It was just after the violet hour where my eyes feel a little drunk in the dimness of evening and I was concentrating more on getting around people. Then I saw the fire crew were up on a cherry picker above the roof. I asked a bystander what happened and he tells me there’s been an explosion and really big fire.

I look at the building- no fire, no smoke. ‘I don’t see any flames, I’m not blind,’ I say holding the stick and in reply in this surreal sort of laid back tone tells me there are really big flames. I presume he is taking the piss and exaggerating, thinking like everyone else that with a white cane I see nothing. If there were no people to bump into I wouldn’t even use a cane, I would dollop around London in my own little 4 inches square view of the world.

The Southbank has been my wandering and writing territory for so long but at night with nearly no night vision and the crowds as walking black cut outs in the tableaux of lamplights and kiosk signs it gets tricky. I used to write in the Royal Festival Hall every day but now it seems so busy that I left to wander Foyles for a bit and head over the bridge.

One end of Hungerford bridge has a lift and the other end a step free route beside the train tracks and through a little tunnel I used to sing in with an autoharp. It ends at what seems like London’s most hidden market above Villier Street and pops you out through a gap in the wall you barely see, into Charing Cross station. I’ve been using it for years as the stairs down the bridge are terribly lit and like some torturous version of a game on The Crystal Maze. I have always referred to this route as the ‘not-so-secret-secret-walkway’ – tonight the end is concreted up. The market stalls are gone and I felt like I was in one of those weird dreams or I had just imagined how it used to be.

How can transport for London block out the only disabled access route off a bridge?! I took the stairs with my stick and not enough lighting like that scene in Indiana Jones when they cross the bridge in the jungle. Yeah, I never thought something as simple as walking down some steps would be such a mental challenge of not wanting to sit down and cry until given a piggy back to the pavement, but I made it one piece. At least I can walk. What happens to disabled people who cross the bridge, the whole length of Villier St through the tunnel and just meet a brick wall at the other end? Who ticks the boxes for these decisions? I circled the grey walls while everyone else hopped onto the escalator I can’t use in the deluded hope that maybe there was a grey elevator hidden in the greyness.

When I eventually got off the bridge a very plummy posh woman stepped in my way and asked if I knew where I was going in the tone of voice only used for people coming out of a coma. I snapped yes at her but wish I’d said ‘no…I just thought I’d wander around London blind on my own  for no reason.’

Reading all this you may think I hate London, the city I always described as my greatest lover no real person would separate me from. But even with it’s do-gooders who seem to think sight loss means brain loss, it all gives this kind of elated craziness: the feeling you get when you step of a fairground ride a bit giddy, a bit frazzled but laughing at it all.

I have a neighbour who tells me living in London is not about old buildings and museums but the people on it. Stood above the middle of the Thames watching buses pass over Waterloo Bridge at night and the hologram effect of St Paul’s I can’t help but wish that for a while London emptied of people. I had no one to try not to trip or walk into, no one to steer me around without asking or patronise me to make themselves feel good for helping the poor little blind lady with the terrible dress sense.

I would love that scene in the movie 24 Days Later when London has been evacuated and only one man left. I would run and leap around without hesitation. I think that’s the thing with damaged vision: the constant hesitations.

Someone one told me that the day you stand on Hungerford Bridge and look at the view down the river and don’t find it magical, that’s the day you shouldn’t be in London anymore. The people passing by are all semi invisible trip hazards but I can turn my back on them and I still see that view, still see the details on the Cathedral and the posters on red buses a mile away but I turn around and have to go back requiring a stick on the stairs.

On another bus that driver gets fed up at children ringing the bell over and over, he starts cracking jokes on the loud speaker, ‘keep ringing I can’t hear you.. did anyone hear ringing?’ Those tiny city fragments that make you smile in dreary weather.