elaine4queen

[elaine4queen]

London Stock

So when I’m using google to look at John Fisher Street it’s an interesting contrast. In my mind, for instance, John Fisher Street is a very soft grey, even in the sunshine. There are two spaces where blocks used to be - one was in the very middle, with the others arranged around it, which I think was deliberately razed, and which became a kid’s playground, and another to the south west which, when I lived there, was a car park and which has now, finally, been built over, with what looks like quite posh flats, which gives the estate a gentrification I couldn’t have imagined at the time and closes up a space which was very open for the 12 years that I lived there.

Now, this block that used to be there, was bombed near the end of the second war. My neighbour Ethel was living in the council estate next door with her family. She was a young woman at the time and she worked in the docks. Her friend, who lived in that block, had just had a baby and she asked her mum if she could go and visit. Her mum said no, and then there was an air raid. 

The people in the council estate sheltered in the railway arches which now have the Dockland Light Railway tracks on them, but which used to service the docks. Ethel said that the people in the Peabody shelter in their basement. This would certainly protect you from flying glass, but what happened was that the bombs they called the doodlebugs had just come in. These bombs could fly along with their own little motors that made a noise, and when that noise cut out the bomb would explode. This doodlebug flew into a window and exploded killing everyone in the building, including Ethel’s friend and her baby. Ethel said that when the bomb went off and the building exploded into rubble all of the air was sucked out of the railway arch. So for her, a space which had been left empty for decades and just used for parking cars, was a site of a very visceral memory.

#peabody #original writing #actuallyautistic #actually adhd #london #memoir #google maps #ww2 history #oral history

[elaine4queen]

Soft Light

I wanted to know what year Edmonton Ikea opened and one of the first articles on the page was a Guardian piece called 'Slowly but steadily, madness descended’. I didn’t say that it opened at midnight because it’s one of those things that you think, later, couldn’t possibly be true, you had to have made it up. But no, there it is, one minute past midnight! What were they thinking? Like, can you imagine being in the meeting where they decided that? Or when they told the employees? Did no one actually say aloud 

“That is a terrible idea!”

I mean, they probably did, but to each other. And not only that, but I’m reading now that the sale was only on until 3am! 

2005, it opened. I was living in John Fisher Street, a tiny one bedroom flat, which New Yorkers might call a railroad apartment, except that I did have a hall, which was a terrible waste of space. A railroad apartment isn’t about being near a railroad, but about the layout of the rooms, all in a row, leading one to the other. I visited someone in New York who lived in one, and I quite liked it. Probably actually bigger than mine, but I liked the feeling of one room opening into another. 

Anyway, mine wasn’t like that, but all the rooms faced the same way, onto a playground which was often full of screaming children. It was loud, and south facing, incredibly hot. It was around the time of my Big Health Crash, and I was a shade off 40. Roland was probably still living at my dad’s in Kenton. I can imagine both my flat and that house, in detail, in my mind. When I cast my mind back it’s got a dream like quality though. I remember, or my brain reconstructs, some of the things in granular detail, usually from a sort of hovering above and to the side eye view, but oddly a bit higher than my own eyes, like one of those 3D house tour fly throughs, where there’s been a camera capturing stuff at certain nodal points. I would like to like those more than I do, but they make me feel a bit sick. It’s the movement. In my memories of rooms the viewpoint is fixed and a bit saturated, and has certain close up features for textures, but there’s no zooming, just an ability to visualise the specific kind of carpet, or wallpaper, or furniture, and the light is less sharp than a digital reconstruction could ever be.

#original writing #actuallyautistic #actually adhd #london #ikea #east end #fly through #memoir #non fiction

[elaine4queen]

IKEA 666

The Ikea in Edmonton, where there was rioting, or at least, mass bad behaviour, was build 666.

My brother was involved in the build, and they'd been given a deadline that was undeliverable, and management decided to have an opening sale at night.

Ideas are usually on the edge of a city, and this one was just off the North Circular. People who couldn't find their way off the main road but who could see its lights shining parked on the hard shoulder and trudged over. Some people were drunk and fighting over bargains. The fire doors hadn't been secured and collapsed to the touch.

At one point one of the shop floor sales people stood on a sofa and shouted THIS IS NOT HOW TO SHOP!

My brother was at home asleep when a friend from work phoned him.

"Roland, don't come in, but it's all kicking off here!" he said. "Put on the radio!"

I had his 666 fleece from the build for a while. I wanted to keep it. Legendary shopping chaos!

Ikea have bought Churchill Shopping Centre in central Brighton. I rarely go into town these days, and I don't have the energy for a big Ikea trip, so I'm looking forward to that. I can't help hoping that Brighton is chaotic, because Brighton does chaotic very well, but mainly I just want some new crockery.

As a side note, if you've ever been to an Ike you'll know that they are laid out in an unusual way for a shop. It's laid out like a museum exhibition, and you are funnelled through displays for quite a long time before reaching the cafeteria area, and then the 'marketplace' and then the warehouse and the tills. If you have a low amount of usable hours in your day or week you might want to avoid the first bit, and you can, because you can cut straight through to the cafeteria.

Happy shopping! Ⓐ

#original writing #ikea #actually autistic #actually adhd #london #chaos

[elaine4queen]

Ballard and Ishiguro

“In the future everyone will need to be a film critic to make sense of anything.”

(Dick - The Kindness of Women, JG Ballard)

On the second day of the succession of Sundays Easter Weekend represents I woke early to no WIFI and a dog keen to go out at the earliest opportunity. I drank Chai and took the sliver of amphetamine that is enough to kick start my brain, but not so much to kick off breakthrough migraine. 

In the chill of the sun we beat the bounds of the park while I listened to Ballard’s autobiographical work. To me, the endless descriptions of the car crashes he became obsessed with as a symbol of the twisted modernity of the 60s, were one of his least compelling narratives, and, as my brain awoke I wondered if this was because it was borrowed from the mind of his Shanghai boyhood and lifelong friend, David? 

***

It occurred to me that the months leading up to my Ballard/Ishiguro season had created my sudden deep dive to this Yang and Yin of authors. Ballard’s violent extremism, Ishiguro’s repressed, internal violence. I wondered if they’d ever met? If they’d read each other?

One of Ishiguro’s novels abandons his usually Pacific tone to explore the chaos of Shanghai. It takes place during the days of the opium trade which the International Settlement of Ballard’s childhood created, then moves to London for an inter-war pause for the protagonist to grow up and become a detective. While the foreshadowing of World War Two is playing itself out he returns to Shanghai to find his probably long dead parents, with the enthusiasm, simplicity and hubris of a boy. And it is in Shanghai, already staging a violent struggle between the Chinese and the Japanese, we find the arrogant English treating the bombings as a kind of fireworks show, and a backdrop to their incessant social lives. The trail is, of course, cold, and he is about to leave when he gets drawn into a search for his parents in an area which Dickens would recognise as a Rookery. This is where the Chinese factory workers live. There are no streets, but shacks built against other shacks in a formless anarchy. What he finds there is an hallucination of a boyhood friendship with a Japanese boy. I think, if Ballard had written When We Were Orphans it would have been celebrated, but apparently this book is a duff and an aberration from Ishiguro’s pen. We prefer him to talk about ignored violence, while we accept any kind of excess from Ballard without question. 

#actually autistic #original writing #jg ballard #kazuo ishiguro #when we were orphans #the kindness of women #shanghai #WW2 #crash #crash art

[elaine4queen]

The journey home

Terri’s flight was hours before mine, so I didn’t leave with her but pottered about getting ready to go. I’d been awake since whenever she’d got up, threeish? and although I’d packed already I knew not to leave much earlier than necessary. Time spent in the room in comfort and controllable lighting was a better idea than time spent in the clutches of the airport. 

Everyone gets anxious about travelling now. Between cancelled trains and the paranoid paradigm of airport security there is a culture of anxiety, so when you bring your own to the situation it’s not out of place, but that doesn’t mean it will be ameliorated. 

Once I was prepared I headed down to reception and asked them to get me a taxi. The drive was quick and uneventful. I’d been lulled into a false sense of security by my own absolute preparedness. It was still very early, and I was starting to struggle with signage, so I made the dreadful decision to start checking in my bag rather than ask someone where Special Assistance was. Special Assistance is never well signposted, but if you use an airport more than once you know where it is. I’d never left from Dublin Airport before and the bag check was seductively easy so I got sucked in to the procedures that came next and those that came next and those that came next. It was fine. It really was. Very simple. 

On arrival at Gatwick, however, I started to fail, and of course, since I hadn’t triggered the Special Assistance at this end by using it at the Dublin end there was no one to meet me. I struggled through, and eventually found that I had no way of finding Matt who was coming to pick me up. I had the luxury of not having to use the train to get back to Brighton but nowhere to tell him to come to. I asked for help, but by that time was more or less averbal. Not only did I have to explain my problem but I had to do it on a telephone and I had also to explain to a woman who wanted to put me in a wheelchair and take me to a flight that that wasn’t what was happening. After a terrifying journey down long and steep ramps I eventually found myself at the Special Assistance drop off point we came in at. I let Matt know where I was and he was there in five. 

We spend a lot of time problem solving everyday tasks so I really didn’t need to tell him this sad story. I said that I’d had to emote to get my needs met and he could fill in the rest. He’d re-charged the cup holders in the car with cans of Coke and it was certainly the medicine I needed.

#actually autistic #actually audhd #orignal writing #travel #disability #special assistance #executive dysfunction #mutism

[elaine4queen]

After Dublin my mouldy bathroom ceiling was dismantled and disposed of and three cheerful men made a new, imperviously perfect job of replacing it. True, there would have to be other work to rectify the damage of four months of untended leaking sewage, but the completion of this one act flipped a switch in my mind and I began to take pleasure in my home again. I moved some things around, cleaned and cleared. As I did this my mind became calmer and happier.

The meeting of my writing group was a happy occasion too. Two of our number had begged off and rather than making the remaining foursome too small and apt to think we should stop altogether or cancel if more than one person couldn’t come, the intimacy gave us a certain freedom to pursue lines of thought and open up ideas. We talked, too, more about personal things and other interests. Keith talked about his choir - he said that you need a lot of altos in a choir because their pitch isn’t as strong as the higher or lower notes. He also told me the shocking - to me - news that different countries have different pronunciation for Latin, which in an international choir could cause chaos. I’d done a bit of Latin at school and remembered that unlike any other language no accent should be attempted because Latin was a dead language. It did not occur to me that if other people in other countries were told the same that their idea of unaccented Latin would lean towards their own pronunciation. This obviously doesn’t matter in a classroom or on the page, but in the one place where Latin lives orally is also a place where how something sounds is essential, paramount, and communal. I loved hearing about these technical details, irrelevant to his book or anyone else’s. 

There is something about a short factual story that I find immensely comforting, almost blissful.

I showed the group a picture online of the aluminium collator I’d bought to divide my chapters up and keep them in view. I struggle with writing partly because of not being able to see it all at once. At art school you could see how your work hung together, you could walk into another person’s studio and do the same, or go to a gallery and see how artists of a period talked to each other in their work, or how a single artist was thinking. This is not true of the written word, and although the collator doesn’t allow me to see everything all at once in the same way it is at least not as bad as putting it all away in a folder, and worse, into a cupboard. 

I told the group that I’d put each chapter, with it’s own earlier versions and notes into the spaces on the collator. I’d ditched a chapter on London which disrupted the continuous present of the book, and made more of the material on FILMuary on the advice of Terri in Dublin. I was ready to edit.

This nesting, too, was driving towards recovering enough to write again. I was ‘back in the room’.

#writing class #original writing #writers #dublin #brighton #repair #repairs #nesting #latin #choirs #art school #film #london

[elaine4queen]

She slept all that night then most of the day and then the night again. She thought she might have Covid and I allowed myself to worry about how I would have to rearrange my life if I got sick and had to quarantine here. But by Monday morning Terri was better. We went out for breakfast then suddenly I was exhausted, so she went out to look at thrift stores and I went back to bed. I don’t nap so I rested for a while then got ready to swim. Terri got this hotel especially because I said I liked that it had a pool but it’s felt like a tyranny, not using it. She says this is normal. Anyway so now I’ve used it and feel even more tired. Terri messages me and tells me to get something from the Starbucks to eat. I never use Starbucks but I’m too tired to argue or to go any further. 

In the Starbucks there’s a wall of windows covered from the outside. It is as though they are framed works of art. They are what would have been very old factory or warehouse windows, with metal frames and handles. I can’t tell whether they are the original windows or someone has brought them from elsewhere and used them as a design feature, so afterwards I look at the outside to figure it out. There’s metal gates to what looks like a yard, and it takes a bit of effort for me to satisfy myself that the windows were real and original. From the outside you can’t see the windows, but whatever they’ve used to cover them, and the bars which they haven’t removed. 

The Bacon studio was an exercise in preserving the real, and so is this, even though the tolerance for the real does not stretch to the view of the bars and the yard. In terms of gentrification there’s only so much reality people can take. Facebook’s headquarters are opposite our hotel and the cross street is literally called Misery Hill. The gruelling dockyard work is all but erased here. Public sculpture is of the abstract kind - tall metal poles painted red, stuck at jaunty angles, perhaps echoing the idea of a mast at sea in a terrible storm, but still, and with seagulls perched on top of them. As anodyne and denatured as most dockland makeovers. And none the worse for that. 

Is this the dock my own grandfather’s family left from? It is peculiar to imagine that I may now have walked alongside or across my own ancestors’ footsteps - unknown to me and lost to time.

#orignal writing #actually neurodivergent #dublin #francis bacon #facebook #public art #starbucks #swimming #hotel #the real

[elaine4queen]

I’m in Dublin and in a lot more company than I’m used to when writing. I forgot I’d joined Brighton Wrimo, but here I am and I’m in it. Suddenly everything is on Discord and because it was designed for gamers it’s really powerful. Terri’s on the other bed doing her thing, and I’m writing when I didn’t expect to be because other people are, too. 

I have no idea if any of this will be usable but I’m going to do it anyway because here I am doing it. 

I think this is mainly a group for fiction writers but I’m crashing it because I think they’ll let me and I am sure they’ll kick me out or I won’t want to be here if I don’t fit. 

I arrived on Friday and Terri was at her conference on Decolonising the Internet and didn’t get back till late. Yesterday was the last day of the conference so I was on my own in Dublin. I had canvased opinion about what to do here, but found my pick accidentally, just because Belette happened to post about how Francis Bacon’s studio had been reconstructed in Dublin. 

Reading about it I discovered that this was not the work of a curator, but a conservator, and it wasn’t just art conservationists who worked on it but a team of archaeologists who mapped the studio and it’s 7000 objects in three dimensions so that the replication would be precise. 

I didn’t quite trust my phone to map my journey properly so I wrote myself some directions - go past 6 bridges then turn left, and the gallery is just past the hospital. 

On my walk I passed statuary commemorating famine and struggle, protestors on hunger strike for homelessness, and a small but noisy protest about something with shouting and megaphones. This struck me not only because I haven’t been in a city centre for a long while, not even my own, but also because in the UK protest itself is no longer legal. 

I walked at a clip, and arrived at the gallery ready to sit down and take a moment. I asked at reception where the installation was and got a map. I walked through a few rooms housing a permanent collection of mostly general European stuff, with no particular theme. Ahead of me was a sliding glass door with the words Francis Bacon Studio etched in it in something like Helvetica, lit in the orange glow of a Quality Street toffee.

The space is arranged around the installation of the room, which can be looked into only through the doorway or the site of the original windows. So the walls are walls. You can’t see it straight away, you have to go up some steps, then there’s a projection of an interview in the studio with Bacon talking to Melvyn Bragg. He talks about his studio, what he likes about it, and his relationship with the chaos. Behind the projection you can glimpse the entrance to the room. The door into the studio and the windows into the studio are sealed in glass so the whole thing is a vitrine, and the light comes from the daylight that comes through the skylights in the roof of the studio then the gallery’s own skylights. So you are seeing the room as though you were approaching it in real life.

In Ways of Seeing John Berger said

The days of pilgrimage are over

He could not have been more wrong.

He was talking in 1972, at a certain point in the proliferation of imagery and it’s reproduction, and he was expanding on Walter Benjamin’s 1936 essay, and he could not have known what we know now. His argument was that the more images come to you the less you need to go to them. 

For me, though, in this moment in 2022, I was time travelling to Bacon’s studio at the time of his death in 1992. As far as the conservator, Mary McGrath, and her team could make it, this is time travel made concrete. The vitrine which holds the entire room including floor, walls, and ceiling, has a small entrance which you can stand in, where the floor is under your feet, the hinge of the door and the door is on your right, and a dressing gown and some towels are right next to you on your left, and the famous scene is before you. But in front of you, above you, and on either side is glass.

Tears formed in my eyes.

I made my way around the room and looked in the windows. I sat on the floor and took photos. I wandered back round to the projection room again and allowed the soothing tones of Bragg and Bacon talking and sat in the space.

When I was sure that I’d have it to myself I approached the doorway. There is the handle that Bacon touched to open the door. There is the iconic round de-silvered mirror with paint smears around it on the wall. 

I couldn’t take much more in. I almost took photographs instead of looking. I had no reason to stay in the gallery, and there wasn’t anything else I wanted to see. Terri had messaged to tell me where we were supposed to be meeting later and it wasn’t nearby or soon, so I walked slowly back to the hotel. 

I set myself up for yoga on the floor. I took one of those weird decorative runners they put on beds in hotels and lay it on the floor in place of a yoga mat. I wrapped pillows in towels for bolsters, and took two small cushions off chairs for props. 

I lay on the floor and tears slid out. Then I headed inwards and down and down in supported twists, meeting my own body in this moment on this mat now.

When Terri came back and said she was sorry but she couldn’t handle the end of conference meal I was ready to go, but glad to stand down. 

#nanowrimo #francis bacon #artists studio #dublin #ireland #orignal writing #actually neurodivergent #john berger #walter benjamin

[elaine4queen]

The bananas have ripened, which means I must eat all of them quickly. I should have put two in the fridge to stagger them. This is my first one in a long time, so it is especially delicious. I toast and butter two slices of sourdough and smash the banana into it’s sturdy fabric. Then, I reach for the fancy ginger shaved chocolate my mother has sent me to sprinkle on the top like the Dutch do. It’s intended as a drink, but this is the best way to have it. 

It’s Sunday and the clocks have gone back, so only the dog walkers are out at 8. Dogs have their own uses for clock time, Pavlov’s creatures do not need to hear a bell, but they don’t know about this custom, so for her it is 9, and I have been lucky she has allowed me to postpone the outing for so long.

In the count down to the trip I have spent time looking at raincoats online. I actually own a long parka though, and although it’s not my favourite coat I might be best off accepting my irritation and taking it anyway. Better the devil you know. If it’s rainy in Ireland it’ll protect me, though the hood is very wide and blows back if caught in the wind. 

Annette had told me about Sweny’s Pharmacy, the tiny museum to James Joyce, some time ago, and although I love him and have downloaded both Ulysses and Dubliners to relisten to on the trip I don’t feel an urgency to see it. 

Andrew Scott reads Dubliners, he’s always a treat. I watch a series on Netflix about some young women muddling through their lives in Dublin. It looks like London, Georgian and Victorian bones swamped by glass and steel and I glumly wonder if I might just spend the week swimming in the hotel pool and hanging out in the room.

Then suddenly Belette shares something on Facebook about how Francis Bacon’s studio was taken apart in London and reconstructed in Dublin. Now, this I will make it my business to see. I don’t know why I had no idea that this reconstruction had happened, but there we have it. 

There’s a particular famous photograph of the studio, showing the silted mess he worked in, taken from the doorway, with with a large, round, partially desilvered mirror in the centre, reflecting nothing, staring blankly back at the room. The conservators must have worked like archaeologists, so layered and complex was their task. Belette notes that they were careful to preserve not only the objects themselves but also the specific layer of dust each object had accrued. 

I realise that I’ve been writing about autumn and comfort food and rain and care as though my thoughts themselves are cosy. They are not. On my dog walk I have been thinking about rage and disgust. It is as though there is a balance to be made and the more instability I feel inside the more stable I must make the conditions around me. I photograph a huge mushroom in the park which has grown massive since I photographed it a few days ago, when it was young and tall, only undisturbed because the area is fenced off. Growth itself is delicate. There are times when interruption is disruption. What a fragile and violent place is this earth.

#bananas #daylight savings #Ireland #Dublin #james joyce #ulysses #actually adhd #actuallyautistic #original writing #dubliners #francis bacon

[elaine4queen]

Back on the testosterone and the migraines fade away. I’m furious that I’m being denied a treatment that works for me. All medicines work on a bell curve - yes, most people benefit from a certain dose, but there will be others who can only get an effect from a massive dose and some who need a small dose of any given substance.

Hugh puts it this way

This is a great example of a systemic antipattern called “description becomes prescription”, whereby something that describes (eg average testosterone levels in a population) becomes the benchmark to which all should subscribe. This anti pattern is everywhere, including religion (“real” Christians do X, so you can’t be one unless you do X). It’s a false syllogism.

I only wish I could be so articulate. Still, I have to bide my time for now and hope that I can get my needs met legitimately, which is all that I ask for. 

Meanwhile I’m focusing on getting things done for my trip to Dublin. The dog needs her own bag packed, and then I have to make my flat clean and welcoming for Mari who is taking over from Julie but here. This involves doing lots of laundry and cleaning as well as my own personal admin. The flow of preparations is interrupted by my MP’s office emailing me to say that the Housing Association haven’t got back to him, and did I have a complaints reference number so he could chase it up and take it to the Housing Ombudsman. 

On the gov.uk page about going to the ombudsman I read that 

The regulator cannot help to resolve individual tenant complaints but can consider whether individual complaints are evidence of systematic failings by the landlord

So I focus on what I’d like them to do better. I don’t know what current regulations are regarding what they call Decent Homes, and although I’m sure mine has been pushed into not being one by the neglect of the landlord, I decide that my focus will be on the way in which I’ve had to talk to maybe 30 plus different people on the phone, or via email, and how stressful this has been. I’ve been told point blank that Southern Housing ‘don’t do’ single point of contact, but it seems to me that under the 2010 Equalities Act disabled people have a right to be levelled up to equality of access to repairs, lets say, and that having to waste my one good usable hour a day on phoning or emailing them for four months represents discrimination. Let’s see if that flies. The daughter of the guy downstairs is talking about compensation, but although compensation would not be unwelcome I’d like to see a change in policy, so that I feel more secure in my home in terms of access to repairs. The big pay off would be if I could get the policy changed for everyone.

I’m not in a position to conduct political campaigns, but having sunk several months of mental labour into this already it would be good to have an outcome I can be proud of. 

There are too many things going on right now. I’m struggling to prioritise, but with my trip almost imminent, I’m focusing on that today. I’ve set aside time this week because next week will pass quickly, and I have an ENT appointment right in the middle of it which will trash a day at least. I’ve had this procedure before -where they pass a camera up your nose and down your throat. I actually don’t expect anything to come of it, but it’s part of the medical process. I can’t help but feel trapped. Between the administration of my bodily failures and a precarious living situation the only sense of freedom I have right now is here on the page, and this trip to see Terri.

#testosterone replacement therapy #anti-pattern #original writing #actually adhd #actually autistic #daily life #slumlord

[elaine4queen]

Illustration by Marjorie-Ann Watts for Marianne Dreams.

Writing gets harder as migraines continue. I know that without the flow the content is worthless. As the techies have it - 

Garbage in, garbage out.

Ideas appear through the miasma but they’re disjointed and fragmented. 

I listen to Deborah Levy’s third memoir Real Estate. Like her, I think about living elsewhere. She fantasises about luxury while I fantasise about not having to deal with a faceless slumlord. Even in her discomfiture it’s a cosy listen for me, despite every single detail of our lives being different. 

A phrase swims into my mind - the Platonic house. I have no idea how I know about this. I google it and find I’m right. The Platonic house is that one that children always draw - four square with a pitched roof and chimney, and evenly spaced windows. There might be a line of blue representing the sky, some green around the house, maybe a tree or flowers, and perhaps a portrait of the nuclear family inhabitants in the foreground, scribbled in lurid Crayon. This house endures as the house of the childhood mind, despite most children not living in a detached house with no neighbours nor even knowing anyone who lives in such a house. 

One of my favourite childhood books was Marianne Dreams, by Catherine Storr. In this book a girl is ill in bed. She’s given a sewing box to play with, and in there she finds a magic pencil. She draws her platonic house and that night she dreams about it. The next day she adds details, and the next day. The story that unfolds is about the intensification of this dream life and her relationship with the boy she has drawn inside the house. She gets angry with him and draws eyes on the boulders outside the house and scribbles over the bedroom window. It’s a children’s book, so is ultimately resolved happily, but the slip into a magical realist life where the protagonist must solve self induced and frightening problems is a very human trope. We want to feel along with her, but safely, have the thrill of trouble without the groundlessness of real risk.

Meanwhile grey water from the flat above continues to flood into my bathroom and the ceiling and walls around it. I piss away what energy I have emailing and phoning my landlord, and even now, my MP. It goes on for so long that I begin to feel trapped, like the boy at the scribble-barred window. 

#marjorie ann watts #original writing #actually adhd #actually autistic #daily life #public housing #brighton #magical realism #garbage in garbage out #deborah levy #real estate #the platonic house #marianne dreams #catherine stott #crayons #dreams #reading #writing #authors #illustrators

[elaine4queen]

A hospital appointment looms. I’m okay with my regular gym days, they are part of my life, nothing unexpected is going to happen and I enjoy them. Everything else that’s time based is stressful. I get anxious the day before and no matter how well I prepare - getting the information right, having any paperwork ready, and doing yoga and other calming things the day before, I probably won’t sleep well and I start the day on the back foot. 

This one is with someone I’ve met before, but at a new location. Without GPS I’d get there okay, it’s not as though I don’t know the general area, but I might easily be hot and sweaty and in tears by the time I actually find the place. With GPS the stress is ameliorated to some extent. Also, I’m annoyed with myself because when I made the appointment I was getting a lot of neck pain and he’d offered a nerve blocker, so I thought if I had that it might help keep me moving through the winter. Since that flare up my neck hasn’t exactly had the mobility of a child’s, but even so, it’s not so bad. Am I wasting his time by going? I’m still in the low grumbling foothills of migraine and could live without it, myself, but still I feel like cancelling is wrong. I cancelled ENT last week because I was too ill to drive and it was in Worthing. Having a camera threaded through my nostrils isn’t exactly fun at the best of times, but even if I’d got there some other way I’d have been so sensitive with the migraine it would have been hideous. I can’t remember ever having cancelled a hospital appointment before. I annoy myself with my propensity to do as I’m told. It doesn’t necessarily serve me. As I write I think about the posters they put up in surgeries warning that missed appointments cost the NHS millions, and I think probably other people cancel a lot and don’t give it a second thought. 

Well, anyway.

Yesterday I FaceTimed with Hazel in the morning and we talked about Louise. I said that when I visited one of the things she told me was that she missed having a massage even though she isn’t sitting at a desk all day any more, and she’s on a lot of meds. I know well that lying around all day brings its own aches and pains. Hazel suggested I send her the body scan meditation I made years ago for her to play to Tutu, and I dig it out. 

I’m not used to hearing my own voice. I still cringe when I hear it recorded. I’m the same with photographs. I’m not proud of this, if anything it feels shameful, that it might be a kind of arrogance? Anyway, what’s interesting is that when I play it through it isn’t so embarrassing any more. Hazel’s idea was that Louise might prefer listening to my voice than someone else’s. It’s not as though there aren’t enough of this sort of thing kicking about the internet. 

This is from a time when I was immersed in meditation and the teaching and learning of it, and it really shows. I don’t think I could give as good a guided meditation today. I still listen to various kinds of body scan, usually Yoga Nidra and more recently guided Astral Projection, but I haven’t led a meditation in a good decade. 

I’ve walked the dog and done a load of laundry, so apart from the hospital that’s the day done, and when I get back I have nothing hanging over me. I hold that in my mind to fend off the onerous task.

#meditation #body scan #original writing #actually adhd #actually autistic #daily life #migraine #yoga nidra #astral projection #hospital #medicalisation #death and dying #SoundCloud

[elaine4queen]

Another migraine blows in and leaves me devastated. I can’t believe I lived through years of this being all of the time, never mind trying to write a book. No wonder I couldn’t hold it all in my mind, I can barely hold my head up. 

Days pass and I arrive at a Monday morning with the dog packed off to RoodDogs for a walk, and I’m doing whatever life admin I can catch up with. Over the weekend I tried for a writing morning at Rockwater but they were, let’s say, disingenuous about opening times on the website, and I arrive to find the great lady still in her quilts. There’s a hut selling coffee outside, but the sitting area there is soaking wet from the rain, and there’s also some kind of circuit training class going on there. As we pick through to find a place to sit Lola sniffs the weights set out in an appraising manner.

I can perch for a few minutes there to drink my coffee, but it’s not a place to hang out and relax, so it becomes just a walk for Lola’s needs, which are met, albeit briefly. 

By the Sunday I’m sufficiently anxious that if I don’t get my flights booked for Dublin the prices will go up. I’ve found my passport and it’s still in date. I am so anxious about getting all the details right, but I make a fair pass at booking, and the trip becomes real.

Terri has been responsible for a good half of my trips abroad in recent years. She’s an academic, so she has conferences and research trips. We went to Paris and visited a shoe making college. It’s better than holidays for me, a trip with a purpose, most of which is hanging out with a friend and doesn’t require doing tourism in some sort of correct manner. One time she invited me to Athens for the weekend. No one goes to Athens for the weekend from here. It’s 4-6 hours in the cheap seats and my back wouldn’t stand it, but I figure out a way which involves taking two weeks for a two day trip. She had booked a hotel with a view of the Acropolis and of course we went, but she spent most of her time talking to the cats there, and we had the place to ourselves, because it was February which was perfect for us. 

Anyway, this trip she’s coming from Australia and the conference is about internet research. I’m hoping to meet some of the people and maybe go to some panels if I can sneak in. Otherwise it’s going to be just time somewhere else with a friend in a room and some walking around and looking at things. I don’t know anything about Dublin. I mean I’ve listened to Ulysses and Dubliners and maybe I will again, for the trip. That’s good enough. Even if I spent the whole time in the room just doing what I’d be doing at home minus the dog, plus the Terri, that’s more than enough.

I look at the map. The hotel isn't far from the river. I am happy near water - for itself and for orientation. Unlike Paris and Athens I have a family connection to Ireland, but only as much as the endless Americans who claim Irish lineage - the famine, one quarter, and no right to a passport. Also, though I’ve been told enough times, I don’t even know the second name of the family who fled to Scotland. They took or were given the name White on arrival, and for some reason I can’t hold the original name in my head. It’s like a kind of ancestral amnesia, which, of course, was its purpose. The Wherry name on the other side of my family could be Irish or it could be Romany, which chimes with a more personal connection to London - my last flat there took me walks around the canal basins which they most certainly docked at. I wonder what they were carrying as they lay on their backs legging it through the Islington Tunnel? It could have been anything from coal to feathers.

#dublin #athens #paris #london #east london #original writing #actually adhd #actually autistic #brighton #dog #dogwalk #daily life #dubliners #ulysses #james joyce #islington #islington tunnel #legging it #wherry #erasure #travel #feathers #feather merchant #canals #canal boats

[elaine4queen]

A week I’d set aside for recovery and catching up with myself suddenly fills up. A woman phones me while I’m out with the dog and asks if I want her to bring forward my appointment for Ear, Nose & Throat. I’m not indoors and can’t see my calendar I tell her. She persists and I back down, but she tells me she needs to tell me how to find them. I tell her it’s pointless because I won’t remember. How often do I have to disclose my autism and is there any point in talking to people about ADHD which seems to be even more poorly understood, to the point of being reviled. Though I’ve had my fair share of attitude for my late diagnosed autism, too. Anyway, I don’t tell her. She says she’ll phone me back later. 

Worse than the disruption of a week already planned is the news that the ENT department is in fucking Worthing. I look on the map and it says it’s a half hour drive, which means 40 minutes for me, then the appointment then the drive back. It’s a bit of a bust, and all in busy traffic. Given the choice I drive mid morning with good visibility and low traffic. Also, I don’t like to drive for more than an hour. I don’t want to cause an accident. Committing to this makes me anxious. Also, I know what they’re going to do when I get there. I’ve had it done before, but a long time ago. They’re going to put a camera all the way up my nose. It’ll be painful and disgusting. 

After the top layer of my symphony of pains and problems was mostly dealt with with the migraine preventative the sinus issues became more obvious as something worth mentioning. I’d had the problems for years, but when you have a list every time you go into the doctor’s it’s hard to get to everything and with my inability to figure out what’s important or urgent, or even easy to look at or deal with, I’ve always let this one ride. Anyway now it’s come up. I’ve been on a steroidal inhaler for a while and my breathing at night has improved but there’s one nostril that shuts down regularly still. There must be only one thing worse than having a body and that’s not having one. The tipping point, though, that’s the rub.

Louise’s husband Adrian PM’s me then posts on Facebook that in the past few days she has become a lot less lucid. She wasn’t exactly herself when I visited, and was frustrated that she had to reach for words. The drugs she is on are so hard hitting it’s hard to know what she would be like without them. I’m so glad that I went when I did. I can’t really say why. I tried to work it out on the ride home, but told Adrian last night that I just wanted to. And maybe that’s it. I just wanted to, I did it, and now it’s done and it can’t be done again. I thank him for helping to make it happen. On the open thread he says she is not able to use her phone or computer but if people want to leave comments he’ll read them out. 

Rob says 

Tell Louise this is an excessively dramatic way to avoid buying me lunch.

I imagine Adrian reading the comments to her, and wonder if, through the fog of drugs, she might get a smile from that one. And it makes tears prick in my eyes.

I had a yearning to eat toast and marmalade with another mug of tea. It’s a particular pleasure eating without a dog staring at you, so when she goes off for her walk I head to the kitchen. I know that I won’t have fully digested it by the time I hit the gym later, and will regret the sickening lump in my stomach but I do it anyway.

In proximity to death, or the awareness of a particular death everything else is trivial, and you really feel it. Sometimes the more trivial your fixations the better. Why think about big things when there’s a big thing already? The PDF that was linked to the talks on Dying in the Dharma on Audio Dharma is missing so I message them about it and they send me a link. Reading it comforts me, particularly the funeral verse

All things are impermanent,

They arise and pass away.

Having arisen, they come to an end, 

Their coming to peace is bliss.

Our lives arise and pass away, our fixations arise and pass away, our walks, our lunches, our relationships and our desires for toast and marmalade - everything, everything arises and everything passes away.

#death #death and dying #original writing #actually adhd #actually autistic #dogwalk #dog #buddhism #audio dharma #hospital appointments #daily life #toast and marmalade

[elaine4queen]

It’s been a week since A&E and although I’ve travelled I haven’t walked, and by the weekend I try out a short dog walk with no ill effects on Saturday afternoon, and then on Sunday I take on a proper walk with Lucy. We drive to Stanmer, a park I’ve been visiting for decades. When you’re visiting friends it’s easy to absent yourself from mapping a place and we’re both a bit anxious about going into the woods. I know Lucy’s sense of direction is dreadful so I use my app, What Three Words, which I’ve never used before and we try it out with some pleasure. The three words where the car is parked are Olive, Loudly, Join. When we get to the fringe of the trees we stand and check that the app will call us home. I tap an option for a compass and the needle shows the direction of the car park which we can see from where we stand. Good. We are safe. 

The dog is frankly delighted and comes back to share her joy often, jumping up at me with utter glee. She chases squirrels, finds sticks, and sees off contenders for said sticks. 

The rest of the day is a wash, but it’s okay, I don’t have to do anything. Because of the drama of the foot last weekend I forgot completely to take my monthly injection to ward off migraines. Often, towards the end of the month the migraines return, and I’ve had some breakthrough migraines probably mostly because in the change of seasons are sewn dramatic changes in barometric pressure. Living on the coast if I look at any app that shows the weather fronts coming in from the Atlantic, it’s a wonder survive. I’ve moved into a stage of constant migraine and worry that my medication has failed. Online groups of users suggest that it is possible for this to happen, and at about the 18 month mark, too. When I realise what I’ve done I’m more relieved than angry. 

I’m listening to Garner’s book True Stories, and at one point she’s talking about menopause and how oestrogen is the hormone of female compliance. It is ironic, to me, that oestrogen is the hormone I can tolerate least, and that I get sick if I use more than half the beginning dose, while testosterone, which makes me feel sexual, is denied me because when I used it my levels were ‘too high’. Too high for what? The levels aren’t anywhere near what they expect from men, and how do they know that this is not the optimum dose for me? Is it like vitamins? Is the RDA just what it takes for you not to get sick? Garner talks about Germaine Greer who, she says, says that menopause is about freedom and HRT is there for men’s convenience and pleasure. While there are women for whom attraction is a pole star, most women in the online groups talk about it combatting symptoms - flashes and sweats for the younger women, and aches and pains, insomnia and wellbeing for those past that stage. Sex is discussed but it’s only part of the picture. You have to say your sex drive has gone to get access to testosterone, so it’s impossible for the medical profession to really learn about what it does for us. GPs are used to people lying to them but mainly, probably, about drink units, for instance.

The dog goes out with Rooddogs and I hoover the living room. I have a bunch of tasks that I haven’t got to, and I hope to catch up with myself a bit this week. I feel as though I’m struggling to move through Vaseline instead of air, but I’m getting a few things done. I have to start nagging Southern Housing again. This is endless.

#dogwalk #original writing #actually adhd #actually autistic #brighton #what3words #migraine #barometric pressure #HRT #hormones #RDA #Germaine Greer #helen garner #insomnia #sex #testosterone #oestrogen #housing

[elaine4queen]

I have submitted to the tyranny of the foot. A foot injury makes even small tasks difficult and tiring. I went to the hospital yesterday because it had flared up very badly after a week of mostly rest, but the weekend required at least two brief walks with the dog. 

I book a block of dog walks and resign myself to an indoor life. In the scheme of things it hardly matters. I won’t have a change of scenery for writing to, but at least the dog’s needs will be met.

The triage nurse told me to do some movement with it, but not to overdo it, and that healing might take a few weeks. At any rate it’s sunny so I can do a laundry and hang it out. This time of year line drying feels like a proper treat. Having the laundry on always makes me feel productive, even though it’s a machine doing the work. Writing slows down. It’s okay, I tell myself, don’t worry about it. This week I have a visit to Louise in Manchester and the Writer’s Group in Lewes, so I will see the world outside a bit. The hypnotic view of traffic on Thursday, bookending a short visit, and then the focus of the group on Friday. It’s Terry’s turn for feedback on his manuscript, and I have to do the reading for that yet.

Slow down, slow down, slow down and stop.

The Accident and Emergency text me asking how my experience with them on Sunday was. I give them top marks, because really, I had barely any time to complain on social media about having to be there. They text back to ask what was good about it and also if there was anything they could do better. I write

I was seen quickly but not rushed. I disclosed my autism and when I needed extra help with directions between X ray and triage and back everyone was kind and considerate. The injury was explained well to me, as well as what I should do next.

I came in the main entrance after parking in a disabled bay nearby, as I expected there wouldn't be any parking near A&E. The signage is not great from there, and it would have been a lot simpler to have walked up the hill outside, which is how I walked back. I had a foot injury so the walking wasn't great, but really the thing that made me feel upset was the signage and lack of it.

I didn’t mention that I was actually in tears by the time I actually found A&E which is several corridors and at least two different lifts away from the main entrance because I didn’t want them to know that. It’s still hard to acknowledge how shaming anxiety is even though I know it’s a massive part of being neurodivergent for a lot of people. It’s also exhausting metabolising waves and waves of signage, and terrifying when it’s missing.

When I got home I saw that Jim had commented that I should read the QR code on my wristband and see what it said about me. I replied 

It says ‘Whiney middle class old lady with sore foot. Pretend to X ray her and kick her out PDQ’.

And this kicked off a whole thread of other suggestions, which was fun.

***

The week passes quickly. I spend Wednesday reading Terry’s submission. I spend so much time marking up typos that it takes until Thursday for me to realise what was especially good about the content. He’s describing his parents young adult lives, and the writing, like the action, is gritty and granular. His writing is so pacy that it’s easy to ignore the emotional depth, for instance, of the killing of his mother’s brother in the war. He points to her devastation by comparing it to the beginning of the devastation of London itself.

Later, he describes a fight between his father and his father’s brother. A fight in a culture where men hitting each other is commonplace, but the particulars about who benefits from what conditions in a fight between two men of different heights. It’s so visceral I can almost feel my own shoulders move in a dodge and weave as I read it.

#hospital #reading #original writing #actually adhd #actually autistic #brighton

[elaine4queen]

When I started the writing course I had never written anything very long and I found it astounding that some of my fellow students had unfinished, abandoned, or just unpublished manuscripts. Some were published, and I get that, that’s meeting your audience. But I found it hard to wrap my head around the idea that you’d put that much work into something for it never to be shared with anyone else. Now I know. My relationship to Different Day is ambivalent, especially now I’m writing again. Look! I’m more than 12 000 words in, and it’s only been a couple of weeks.

This kind of writing is generally not considered ‘the work’ as in the real work that your do for other people to see. It’s what Helen Garner is doing in the books that are sold as her diaries, but she has written lots of fiction and journalism and many more other kinds of books, and I imagine these books were published as a kind of afterthought, certainly after she was well known. I think that’s a bit sad, really. I like them a lot and although I liked Monkey Grip fine, I was so aware it was a fiction even if it was based on her lived experience, that it felt artificial by comparison to the notes, free writing, or whatever comprised the diary books.

I get that people have a second string that helps them sell their books - Garner did a lot of journalism and Goldberg teaches as well as writing and painting. I’m not in a position to do anything else. I have so few spoons or usable hours, or how ever you want to fame it.

I have a bath in the afternoon, although I hate going in the mould covered bathroom now. I need the bath for pain relief and I need to wash my hair. Afterwards I lie on the bed and look out at a pink throw and a pink jumper I’ve hung out on the whirligig. The bright sunshine on the washing and the yellow of the line on the whirligig is effervescent. I dry my hair and look at the dress I have hanging on the outside of the wardrobe. I think it could be worn back to front for a different neckline I think, but I’d have to pick the thread holding the label on. I have a seam ripper in my sewing box and remember how Nana used to call hers a quick unpick and I think this must have been a brand name but googling it it doesn’t seem like it was. It seems to share equal billing as a descriptor of the tool, a tiny curved knife with one sharp end, a curved edge, and another end to the edge with a blob of plastic which is red, which suggests a warning blob of blood.

***

I wake up to an aching foot and it’s pouring rain outside. I won’t have to do another walk during the week after this, so I gird my loins, harness the dog, and we head out. 

We go down to Palmeira and Adelaide and Lola is better in the rain there than when she has house or shop porches she can duck out of the rain into. She hares about and does her thing. I take a couple of pictures of the now dead or faded grasses and wild flowers on the unmowable verges, and there’s some flowers which seem to me to talk to the colour of the buildings beyond, but of course it’s not something I can quite capture with my phone camera. 

On my walk I realise that if I cut out the stand alone chapters about London and maybe Amsterdam, and maybe even Murakami, I might save Different Day after all. I’ve always been good at precis, and until now afraid that I won’t make whatever the word count is, for academic stuff. Even at art school I only made the 10 000 words by cutting the dissertation into 2000 word essays. Not sure I hit 10 000 even then. 

There’s no specific word count for a book, but as I intend it to be an audiobook, and each book is costed by credit units, and I feel short changed by anything under six hours and prefer 8 or longer, I was still straining to get a decent length out. In the early days of writing I had the recent autism diagnosis to metabolise as well, then there’s the sea change of getting a migraine preventative which actually worked, and then towards the end there’s the bolt-on of starting HRT late in the day as well. All of these things are overshadowed, in the telling, by the deaths of my dad and then my dog. Really, those are the real events in as much as I write them in the process of them happening and they flow. The medical stuff is real to me, but getting used to those griefs is of a different order and I think perhaps I write them badly. 

I don’t know. 

But still, I think, giving myself the option of cutting longer passages might give me a chance to give Different Day the kind of flow I’ve got here. Okay, editing is not the same of writing, but perhaps having cultivated the energy of flow here I can reengage and not just butcher it.

#palmeira #adelaide #brighton #hove #hoveactually #original writing #actually adhd #actually autistic #dogwalk #dog #chronic pain #writing #helen garner #natalie goldberg #free writing #diary #memoir #HRT #diagnosis #migraine #crpg #death