All Hallow’s-by-the-Ween

One of my favourite ‘London’ or ‘City’ churches is All Hallow’s by the Tower, near the Tower of London. It’s extraordinary. In the crypt is a Roman building (and Roman street), while the roof is moulded post-war concrete. All of London’s history is found in between, including a stunning font lid by Grinling Gibbons. I studied Wren and Hawksmoor’s London Churches as part of my degree, and this is one of few that I managed to visit with my Mum (thus rendering it EXTRA SPECIAL) – it is genuinely very very interesting. If you’re ever visiting the Tower of London as a tourist, go to the little church between it and the station. It’s free, and it’s beautiful, and special.

I don’t do anything for Halloween. I did once, but it was not successful, though I made a fucking fantastic costume for my partner – a calico version of Buffalo Bill/ Jame Gumb’s ‘Girl Suit’ from “Silence of the Lambs”- it was painted different skin colours – including fake tan, and tattoos, and even had a bush of grey public hair and asymmetric boobs. It was a bit more ‘Frankenstein created woman’ than haute couture skin dress, and that’s how I like it. Now I just hide in the kitchen and turn the lights out at the front of the house to discourage knocks on the door. It’s not that I mind Trick or Treaters (though one year when we didn’t open the door (we genuinely didn’t hear them) they splatted our house with eggs and shaving foam – a bastard to get off. It’s because my Dad hates it and acts so badly. Our road is a family road, and you can see the groups coming , covering the whole street, from 5-8pm. Polite, mainly Japanese families. I have no problem with Halloween, as my Mum did. To me it is an important festival, something primal – particularly when it falls as now, just after British Summertime ends and the clocks go back. The sudden onset of darkness and confirmation of Winter has always been primary to me.

Last week was the 2nd anniversary of my Mother’s Death. I spent the real day walking through Kensington Palace Gardens, then to Leighton House Museum, and then ate a Nando’s. Kensington Palace Gardens are beautiful in Autumn – fresh and sweetly perfumed. I started going there a lot in 2014, and when Mum was sick it was an important escape for me. Sometimes I go in the Palace, but mainly I walk through, look at the sunken gardens and trudge to TK Maxx on Kensington High Street. I may get coffee and cake in a fancy cafe, or cheap chinese in Stick and Bowl. This day I did not. I found a Nando’s. Nando’s is a Peri Peri Chicken phenomenon in the UK. When I was in 6th form (20 years ago) Mum and I would get a Nando’s after she finished work on a Friday. It was beside Ealing Common Station and we would call up and get take away. Since then, the chain has spread like a virus, becoming the most popular family restaurant in the UK. I did not know that I had been going to the first Nando’s in the UK. We stopped the ritual in 2000 when I went to Uni. Last week I had a variation of my original order. It was horrible and the experience disappointing, but that was kinda OK. I’d been feeling nervous, like something should go wrong – I was glad it was my chicken burger.

The next day, which is the official day of Mum’s death, I stayed in bed – exhausted from the previous day. Dad, I was later told, went to the grave. I have not visited since the funeral. He mentioned getting a stone. I have already considered all of this, and my superstitious nature means I’ve not mentioned it. As you know, the only thing, proper thing, I own in the world is my grave (currently occupied by my Mum). This spot will house Dad and me. I am supersticious about getting a stone up, only to have it taken down very soon after. I don’t want that to happen. But Dad has mentioned this twice in the last 3 days,  it’s important to him and it will be done. This changes things. Dad goes to the grave, I do not. If it upsets him, actively upsets him, to see just a wood cross with a plaque, then I will get to designing a stone. Because I do not want him upset. I want him to feel free to visit Mummy when he likes. I’ve found some masons. It will be difficult because I am difficult to please, am very interested in gravestone design, am interested in letter forms and letter carving, and also know that since this will be my stone, and the only thing I’ll leave behind* I want it to be nice. Or if not nice, a bit me.

Today a strapping lad came to install our wardrobe. The wardrobe first designed in March or April. I also had a hospital appointment. The wardrobe saga was not finished today because bits of it were missing, and then there were other extra bits. It was stressful but not deadly so. My hospital appointment was for an ultrasound of my ovaries and bits. I had to be full of water when I got there. I was. I had to wait an hour for my appointment so I was not just full of water, I was urgently full of water. They did not mention on the form that I would also be having an internal ultrasound. I was not expecting that, but it was easy. I’ve decided that my sex parts are very relaxed. They just go with the flow. Yeah, an ultrasonic dildo was just randomly put up there and swirled around (gel lube was used), but Madame Uterus didn’t seem to mind. I needed to fart afterwards and it did take a bit of walking to waggle everything back into place, but it was not a trauma. I have had one bad gyno experience where my smear was horrible, but this lady knew what she was doing. I still need to fart. According to the radiographer, I do not have PCOS (polycystic ovary syndrome) though I tick all the boxes outwardly** – I have cystic acne, my hair is falling out, I have heavy periods, my body shape and weight gain is very PCOS. But no. So I’ll have to find out why the hair is falling out. It may be stress, it may be bad nutrition – but I’ve had both before and not lost hair like this. We’re hoping the wardrobe’s will be finished tomorrow.

I have finally organised my bereavement counselling. It should start in December. I’m not going to lie, I’ve been putting it off, but finally got off my ass to do something about it. Later this week I hope to get my butt down to the local medical centre to get my blood test. Then I can rest easy about medical things for a while.

https://www.bob-easton.com/blog/wp-content/uploads/2016/06/gg-all-hallows-font-cover-2.jpg

Gibbon’s Font Cover, by Bob Easton

Bob Easton on All Hallow’s By The Tower: https://www.bob-easton.com/blog/2016/4433/

*I intend to leave my body to science.

**Yet another medical complication. Great.

Leighton House: https://www.rbkc.gov.uk/subsites/museums/leightonhousemuseum1.aspx

 

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Small Mercies

  1. Accidently took double my dose of Citalopram and did not die/feel sick. Did not sleep however, but number 2. helped:
  2. Found Buster Keaton biography while volunteering in bookshop. Excellent.
  3. Watched amazing documentary following TV nature show personality Chris Packham (@ChrisGPackham) talking about his Asperger’s. Made me weepy as he recalled his overwhelming love of his pet kestral and how he never got over it’s death. Made me recall my ex-partner in so many ways. He was only really happy in nature, didn’t like humans, had the same experiences at school. I wanted to text him and say ‘You really should watch…. might help’, but could not. Have not seen him in a year. Have not contacted him since April. But think about him often, and get nervous. Earlier in the week I was in his ‘manor’ and scuttled around trying to do everything super quick in case I heard the ‘tappity tap tap’ of his dog, or smelt him.
  4. Floor in smallest bedroom was laid without my being woken up or harassed.
  5. Got appointments through for both abdominal scan (Hello Ovaries!) and colorectal dept (Hello Anus!).
  6. Blesh book on Buster Keaton delivered. Excellent also.
  7. Went to dentist and a) got there in time b) didn’t have to have a filling – what I thought was decay was just *staining*
  8. Had entertaining chat with Dad in cafe after relief of dentist.
  9. Went shopping in my old manor – felt my Mum ‘with’ me a great deal. Then I got terribly scared. I bought some £1.99 DVD’s, and a £8 cardi. Indulged in waffle. Then bought myself something sparkly. Suddenly terror arose: buying all this indulgent stuff. What is going to happen. Is my Dad going to die. This day has been OK: something must go wrong.
  10. Coated kitchen in fly spray in desperate attempt to kill fruit flies.
  11. Am writing. Still waiting for something really bad to happen. Am now in totally heightened state of fear. My friend found out that the house she wants to buy is available. There was a good TV programme on Art on… something must go wrong.

That is the week so far that is.

Obsessio Keatonis

Marble Hill was a long time ago. Being sick was some time ago. Buster Keaton Mania continues.

My body hasn’t really recovered from my being sick. I went through a dark patch mentally too.

Mentalis

It seems quite a distant thing, all I remember is not sleeping in the evening, and watching hours and hours of Buster Keaton on a tiny screen. I gave in totally to my ability to obsess, and lived away from reality. I know I was stressed, but I can’t remember what caused the anxiety exactly. It may have been a pile up of things. Post viral depression, multiple boils and cysts on my face, sore joints, worry about my Brother and his Divorce, worry about my Dad looking haggard. Trying to organise things for the rooms being renovated. Post birthday blues. My friend Tara moving away. I keep having anxiety attacks about my teeth. My hair is falling out and my skin getting worse. So I escaped. I felt physically and mentally weird, didn’t get dressed or go out or anything. No eating, just Keaton.

Physicalis

Christ on a Bike. I’m exhausted. And I don’t want to eat. And I can barely move. My spine is so stiff and sore I make whimpering noises when I move. I can’t sit with my legs closed as my hips won’t do it. My neck and left shoulder hurt constantly and a pain appears where the neck meets my spine. There’s a strange plateau lump in the middle of my back which I think is a knot, or scoliosis and a knot. Fuck knows. I mean, this is all I can recall at the moment. I know my right leg randomly begins to hurt, my knees hurt as I try to sleep. My right, non-conformist eye is sore all the time and spends it life trying to climb to my ears, and I really need new glasses.  I’m just a mess.

Doktor

At my Dad’s insistence (he was worried about the mammoth sleeping and lack of eating) I went to see my GP. Again a new youngling, this time with an even younger trainee with him. It’s fun to talk bum stuff with younglings. ‘I can’t poo without digital intervention’. Oh. How long has this being going on. ‘Ten years’. Oh. Right, referral to colorectal unit. ‘Also my hair is falling out’, Oh, how long has this been going on? ‘Since March, well at least March’. Ok, blood tests, PCOS scan. ‘Oh, and I’m in lots of pain in my back. I’ve had physio before and I’ve continued doing it, and it’s great. Can I be referred again for that?’. Oh, no, you’ll have to come back for another appointment for that. DAMN. That was what I was really after. I really wanted physio – it would make the most difference. ‘Oh, and did you get the letter from the Maudsley about my Asperger’s Diagnosis?’, When? ‘July/August’ (scrolls on screen). No. You can hand a copy into reception. So, I have to go back for my back, and they’ve not got a really important letter about a really important thing (well, I think it’s important, it felt important. It feels important). I would expect a different reaction from a doctor on telling them something like that. Not the ‘Oh, you can hand in that leg that just dropped off to reception’ blase attitude.

So, my Dad is happy that *something* medical is happening with me. But he doesn’t really know what’s up. My eating doesn’t worry me. My lack of. I know I’m eating enough. I don’t believe that what I’m eating is good or I’m doing things right. I won’t die. I do get dizzy etc. and now after I do eat, I want to sleep almost immediately, like I used to. But I can’t explain it to anyone. It’s just unhappiness. It will pass as it’s always passed. It won’t make any difference. But I can’t force it to go like I have before, or should I say, as life forced it to pass before. Nothing bright and sunny is going to jump up and blow the clouds away, and bring my appetite back. That’s what used to happen. Some jolly brightness would appear and **boooom** I’d be hungry.

Something I realised about Buster Keaton

Ok, a brief thing. Silent movies make you concentrate on the pictures- the moving image. So all you have to do is look and process. Words, language, complicate things by making your brain do more than one thing. Keaton was a brilliant actor – body and face. He didn’t need words. And in those films I’ve seen with him and audible words, they didn’t need him*. I realised that my liking for Keaton was in part due to the lack of complicating words and language. You see, I’ve always had a problem with understanding words. If you say something to me that can have multiple meanings, I will leave confused with all the meanings floating around in my head. My brain will have stopped at that point in the conversation – I will not have been able to go on taking in your words because my brain will not know how to proceed, so vast are the possibilities. An example: a teacher I very much wanted to impress in school once told me that I ‘can’t see the wood for the trees’. To this day, 20 years later I don’t know if he meant: you can’t see the clump or gathering of trees known as a wood, for seeing trees. You can’t see the substance wood, that furniture is made up of, because you can only see trees (because trees are made of wood). 20 years I’ve wondered this. I still do. Now, I’m a trained viewer – I have a degree in looking. So films are like 1000 flavours of ice cream to me. But, I find that talkies (unless in a foreign language) are not as enjoyable as silents. I wondered why until I watched so much Keaton. Then it dawned on me. The talkies make my brain have to do 2 things at once – look at and analyse the picture (from costume details to lighting etc) and process the words. Because of this, my brain does both jobs badly and I come out tired and annoyed and not very happy. But a silent film just involves my looking, and allows me to get fully engrossed in just looking. My favourite thing. I only have to do one thing, and totally. Now Keaton is such a good actor that watching one of his films is like being an epicure given free rein with a Michelin guide. He is far from ‘stone faced’ as quoted. His face tells you all you need to know – he just rarely ‘speaks’ or uses his mouth.

*He was made to make some terrible talkies. But he had a good speaking and singing voice.

 

Oh, and my silly spellings in this (Mentalis etc) are just a habit. The formatting is just to get something written. The gif is from ‘Go West’, where Buster falls in love with a cow. Literally.

 

Marble Hill House

So many on-going sagas, so little time.

Well, ‘saga’ is too grandiose a word. Beowulf’s a saga. The Odyssey is saga. Bowermanland is more a melodrama, that’s not even that mellow.

Updates really.

The House

Since my Mum was diagnosed with Cancer in 2015 I’ve been living in a building site. Every time I think that I’m near having a house to live in, another room has to be done.

In the above you see I use ‘I’ and ‘I’ve’ rather than the ‘We’ that means Dad and I. Why have I changed this? Because the shit state of the house actually affects me more than him, and because it’s not my house and I have no money – which means I have no power over my environment.

I am very picky about certain things in my built environment: colour and texture are the main ones. Every room that has been renovated since 2015 has been an agony because of these two items. I decided I would not have this happen with the current, tiny room, project. I’ve gone along with everything my Dad wants. But the curse of Bowermanland has struck just as it would were I being picky and difficult. Trying to find a very pale creamy/ peach paint that won’t swamp the second smallest room of the house has been very difficult. We went to buy a colour we used before – but the formula has changed and it was like someone took my foundation and rubbed it on the wall. The swatch in the catalogue, on the tin and in the shop showed the palest whisp of colour, but in reality it was like mud. We had trips to multiple shops to get testers – nothing was easy. We don’t live in a small house, but I don’t think any of the rooms would be large enough to carry the lightest of the ready-mixed mass-produced paints we tried.

Whoooaaaah a break

The one where she get’s randomly sick

Yeah, in the middle of regaling you with the *exciting details* of house decoration I started to feel ill. 8 Days later I’m a year older and finally out of bed. The room is painted, we found a colour, it was difficult as fuck. But there again everything is difficult as fuck for me. It really is. Bending over, cooking, washing. Everything is fucking difficult. I had an ENT infection – my regular sore throat becomes bunged up face, becomes sore ears and then cough. But earlier than usual. The positive side to this is the hallucinations and lack of pain. Being sick, having fevers, takes pain away for me. I know I’m ill in the brief minutes between feeling my usual awful and blowing green shit from my nose where I notice all the pain has gone and I’m feeling a bit clammy. Oh, I get jaw and sinus pain from the infection, but everything else fucks off. But I’m too ill to do anything. There I am, feeling pain-free, but I can’t breathe, can’t even lift up a pen or my feet. I have great dreams and odd visions and I feel peaceful and happy. Fuck it. I wish they’d find a drug that makes you feel like the halcyon period of a cold.

I went to Marble Hill House the day before I got sick. I’ll write about it another time.

More Buster Keaton (from The Cook)

 

The Strange Case of Buster Keaton

Or how I recognised some symptoms.

Well, ‘symptoms’ isn’t really the right word.

Last week I spent almost all my time asleep, not eating or watching Buster Keaton (on my phone). My interest in Buster Keaton (1895-1966) has been growing steadily for a short time, and then it exploded. Keaton was a silent movie auteur. Not a star, not a comedian – but an everything. He’s known for ‘comedy’ but that’s not really right. And if I started explaining I’d be here forever. He started on stage age 5, film age 21. He was an amazing, graceful, acrobatic stunt man, and he had the most beautiful face (even Orson Welles considered him beautiful). That’s all you need to know to follow what I’m going to write – but I do suggest that if you’ve not seen his films, do. Remember – no stuntmen were used.

As you know if you’ve been reading this, I was diagnosed with Asperger’s a couple of months ago, and this week has been a week of getting to know that element of myself again. I’ve not had an ‘obsessive’ episode in years. Not a classic. I’ve obsessed over real-life people – and usually in a romantic way, but not in the ‘collect all the editions’ way.

I used to do this: I became obsessed age 7 with the musical ‘The Phantom of the Opera’, my life revolved around it for a couple of years. Then there was ‘Jane Eyre’ – which I read 25 times in a row and could recite. Much later, age 21 I got in deep with ‘Onegin’ a film with Ralph Fiennes which I used to watch on a loop. These obsessions start with an object (listed above) and then expand – so with The Phantom… (TPOTO was my short hand then and will be now) it was the soundtrack, then I saw the musical, had to have the programme, then the full soundtrack, sheet music, then other versions of it. Jane Eyre was collecting different versions of the book, seeing a play of it, watching films of it, listening to the book-tape. Onegin – film, soundtrack, costume creators at Cosprop, illustrated versions and eventually reading the original poem (in English – it’s Russian originally).

I’ve not had one of these periods in a long time. More recently my obsessions have been real people – I get crushes. It’s not a good thing. I’m much happier without them. Much happier revolving my life around books. Or films. So I learned this week.

It felt very odd to be behaving in a way I’ve not done since I was in my 20’s. Since then the obsessions have all be people. But this time I had an odd deja vu. I was sitting in bed watching a Keaton short on my phone, with my lamp on and my old duvet when I thought ‘hmm, this is familiar but different, what’s going on?’. The last time I was like that I was in a different room. The CD player by the bed was the same, the bed was the same, the feeling was the same, the duvet was the same, but the room and object were different. Suddenly I recalled the feeling of intense excitement and engagement that comes with the obsession, and also the disconnect you feel to the rest of the world. I wasn’t my more recent ‘me’, I was the old ‘me’ – like a kid or a teenager. With this state came some not good things. When I used to feel like that, I didn’t ‘feel’ anything. I used to doubt if I was experiencing reality – I used to believe the world was just a picture, existing for me alone. I was aloof. Withdrawn. This place is not a good one for me because that’s when I feel unreal and nothing. During this week, as I said, I stayed in bed, didn’t eat, and failed to make appointments. Not great.

A Secondary Thing

Apart from experiencing a blast from the emotional past, I also had severe back pain and the shits. The shits part was quite funny. I thought I was going to have diarrhea, but I didn’t. I just had normal poo that came out very, very fast. This happened twice and was just so painful. What was funny was just the velocity and quantity. One of those times where you look in the bowl and question your anatomy. The back pain was an eye opener. It started in my whole back and legs and gradually has shrunk inwards to the usual place above my right hip. This pain was also a flashback in as much as I think part of my sleeping and not eating was caused by it. I’ve not had that much pain in a long while – for about 4 months, maybe more- and I think my brain has forgotten how to cope with it. When it came back, I think part of my brain just went bonkers – it’s the only way to explain why I was sleeping so much – almost seizuring – and could not eat. Well, that’s my hypothesis.

Pain related sleeping, and Asperger’s Silent Movie Star Excitement – whoop.

Buster in Drag, in an early film (before 1920) – here he’s not the main performer.

 

Canker Sores & Crapped Pants

I think I may have told you how I made I giant social faux pas? No? Well I did. I invited someone to stay at my house in November and thought it would be ok, but Dad vetoed it and I had to write a grovelling lying apology ‘Sorry we’re getting new flooring…’. The worst thing was the Dad bit. The person was a Professor we met on holiday who I got on with and talked about art too. I believe that she would not mind sleeping on our pristine sofa bed if it meant not having to rent a room in London. But Dad thinks the house is too much of a state. I promised to clear it, but he said no. He’s always said no, even when the house was not a state. I didn’t have birthday or other parties because my Dad doesn’t really like people in the house. He’s only ever let 1 of my friends stay here. My Brother used to bring home people every Friday night as a teen, and Dad was fine with it. In addition when it looked likely that my Cousin Gerard or my Brother would be living with us after their respective relationships fell apart, he quickly began to do rooms up.

Calm down Sarah, stop it, anger is not good.

Anyway, I made a faux pas. Wrote grovelling lie to sophisticated woman. Hid from e-mail fearing she’d hate me. Developed a sore in my nose*. Got my period. Had the second worse constipation of my life (the worst: I was hospitalized).  Developed a stye**. Developed Angular Chelitis***. Had diahoerrea, in my pants, then another painful, lip-biting episode on the toilet. Sty burst. Developed a boil on my chin. And now I have piles. All in 5 days. 5. Days.

Which of the 4 Horsemen of Apocalypse brought this on? Well, anxiety. Anxiety brought this on. You see, e-mail can scare me. Some of the worst episodes of my life have evolved through or been connected to, e-mail. First time I was called a cunt was in an e-mail from a chap at university I thought was my best friend. He *liked* me. Being Autistic I didn’t know. He got angry. He sent me an abusive message. I got so terrified I couldn’t be in a room with him, and I had to report him to the college. I was expecting the Professor from Russia to call me a shameful liar. A cunt in nicer words. Other anxieties: my ex-boyfriend’s sister got married – I only found out through a Facebook update. I blocked any info – didn’t want to see photos. Some got through – but he was not in them. I’ve not heard from him since March- so I got worried. He’s not in any of the family photos. And he was mates with his sister’s Wife. He’s an avid photographer, so perhaps he was behind a lens somewhere. I fucking hope so. I hope he’s ok. But I know I can’t contact him. We didn’t ‘break’ – we faded. I was the only one contacting. He had no money on his phone, didn’t e-mail. I phoned and texted into a void. When I lost my voice from November (Dysphonia), and my hearing was also bad (SSCD) – it made contact difficult. But I kept on. Until March.

So I sit here wearing a vast panty pad, with an itchy, swollen rectum, a boil, a sty, a sore IN MY NOSE, palpitations….

Here’s a video from my youth to cheer you up.

*It’s like a cold sore, and is related to them. It’s fucking painful.

**I first got it in 2004. It’s not flared up in 10 years. I shit ye not. Now the big green bastard is teaching me a lesson.

***Cuts at the edges of my mouth. Yeah, I look swell.

No Canker Sores this time.

22 Months

It’s been 22 months since my Mother died, and I’ve managed, finally, to sort through some things I found too sad to organise back then. And also some things I didn’t know I had to sort out. The conclusion: my Mum was a crafty mega-hoarder.

I have a lot of things, I don’t like change and I find it difficult to let go. Many of my possessions were ruined in a flood in 2008 and since then I’ve become a super-keeper. Since beginning to refurbish the house, I’ve gotten better. The only thing I would fight to the  death for are my old college files/books/notes. The rest of it I would get rid of… eventually. Art and sewing supplies are the worst as they don’t go off yet you can’t give scraps to charity. I am facing many fabric based choices.

I began tackling our Utility Room (again) as I saw a mouse in the Hall and decided that that was a sign from the Universe.* I found a box of my old shoes. They’re only old in date (2006-8) but they’ve never been worn. I can’t wear high heels, but I desperately wanted too and I got a fetish for them once mainstream shoe shops started doing my size (9). I must have spent most of my wages on heels. Finding them brought back some sad memories, and I’m glad that my local charity shop will be gaining from them. Man, I had good taste and those years produced some beautiful shoes. Fuck. I also found the shoes I wore to my Brother’s wedding (2002/3) which were still perfect, and have lasted longer than the marriage. Since 2002 I’ve been able to walk** and my feet have changed shape, so those shoes are going because my foot would smash them now. And because they can’t be very lucky, can they.

After finding and emptying a big box of my shoes, I discovered 4 boxes of my Mum’s. I’d cleared quite a few when she died, but finding yet more – unworn – was a bit of a shock. I found lots of other stuff bought from QVC (nail varnish, face cream…) and that is also going to charity. Once my Mum stopped working, she must have just shopped.

There has been a marked difference in my feelings going through all the *stuff*. I didn’t feel sad. Before I felt sad that she’d not lived to wear the shoes, use the cream, take the vitamins. This time I chuckled at the mass of items. And also being reminded of my Mum’s taste for the silly. I think she had 3 pairs of pink trainers. This rang nicely with my silly heels – shoes for times, and feet, that never were. So I don’t feel sad. And I don’t feel guilty for getting rid of the stuff. Mum would be more upset at the mice.

Other news: doing all this clearing has fucked up my right shoulder good and proper – the pain is keeping me awake and is barking at me as I type. I always forget that though strong, I’m flimsy.

I was discharged from ENT last week re: SSCD – if or when I want the operation (that was finally described to me) I can ask to be put back on the list. They are also sending me for speech therapy – I’ve been off the caffeine for 6 or 7 months but it’s not helped the underlying problem – my throat feels tight, I can’t produce a singing sound and my voice does disappear. Getting help for this is partly vanity. I am not beautiful, never have been – but I could always produce a good loud noise. I want my noise back. I don’t dye my hair, I don’t use wrinkle cream etc. but I do want my voice to be similar to that is was last November. I want to be able to sing a damn Christmas Carol.

*Universe or Mum – I am not a spiritual person, but I do think sometimes life gives you signs. And I don’t like to ignore things.

** In 1992 I hurt my left ankle on a charity walk, it froze and I limped until I was 22. The foot etc. did not develop and lack of walking left me with long, tiny (size A) fitting feet. I couldn’t even walk up to my local tube station – I had to be driven everywhere and ended up in A&E many times in agony. In 2002 I saw an amazing podiatrist called Ron McCulloch who ‘fixed’ my ankle. I am always in pain in that food, but it rarely goes stiff or swells. I can’t walk miles, but I can totter a bit – it’s variable. I have more problems with my hips, knees and spine re: walking.  Now my feet are a normal width though they do not bend properly and are not properly developed re: muscles/tendons, nor are my calves. My thighs on the other hand are massive.

 

Add another one to the list

A full report regarding my Asperger’s diagnosis came from the Maudsley. It contained a new nugget: I have ADHD.

Now this was a surprise. I knew I was being tested for it, but I’m so sedate I didn’t think anything would come of it…

…. but it has.

People have recently asked me how the Asperger’s diagnosis has impacted on me. I have said ‘Not at all’ which is true. But the ADHD diagnosis has. I feel relieved. I’ve always had certain problems that I really thought were me just being a dick. I can’t concentrate for long, but I can, sometimes. I pfaff around before settling to do things. I have to have audiobooks or DVD’s on in the background – of things I’m really familiar with – in order to get things done. I don’t function in silence. I have developed lots of coping strategies for my irratic behaviour – my inability to do things that are important until the last minute – and I know people have thought I was a jerk or a poseur for these strategies. But now I know I wasn’t taking the piss – I really needed to do those things. I still do. My ADHD diagnosis has confirmed I must put something on in the background before I start a project for the project to get done. Something I’ve been doing for over 20 years and apologising for. But now I won’t apologise – I’ll insist.

Not Slim Shady

Though I am back.

A short one this time:

Went on holiday. Part of it was on a boat. Dad got sick- had to be taken off the boat to nearest large city. We (my Aunt, Uncle and I) met up with him there, eventually.

More detail: the country was Russia, the boat was on the longest river in Europe, the nearest largest city was 6 hours away by ambulance, it was St.Petersburg.

A short review of Moscow/St. Petersburg from a Disabled point of view:

Moscow. It’s fucking huge, the buildings are enormous, so high. The pavements are high. There are lots of steps, few lifts, no ramps. Nearly the whole city was dug up: Summer is when they fix things. Winter is snow.  However – what they lack in lifts and ramps they make up for in people. Russia throws people at a problem. All the sites, the tourist places employ lots and lots of people. No ramp: they carry wheelchairs with people in them up the stairs. If you are a bit wonky, not in a chair or not obviously mentally impaired, you’re on your own. Don’t even bother with the Metro. I was over joyed to see large groups of Disabled people out with carers. They were every where – all the sites. And lots of carers. Russians, from my limited experience, do not treat their disabled people as idiots. However – few old people, even fewer non-white people.

St.Petersburg: Fucking huge again. Different kinda huge. Both places piss on London. Since a great many of the sites were damaged in the war, many were reconstructed… but without lifts. Stairs everywhere. Not so helpful people because most of the sites are super duper busy. I mean the Hermitage is the busiest museum in the world: 20,000 people visit it every day. However the Russians are fucking proud of their heritage and want to share it. On the first Thursday of the month the Hermitage is free to Russians. Usually you pay to get in everywhere – Moscow and Petersburg. But the tickets last 2-3 days and cover several sites. They work out at less than £10 for 4 museums over 3 days. Perfect for wonkies who get tired.

Both cities are damn expensive – really really expensive. Public transport and taxis are cheap, eating out is not. You have to tip everyone because the wages are low*.

Addenda/dum

The Russians respect learning and are on the whole educated to degree level. Our tour guide on an island was a Professor of Philosophy – his summer job (they all have them) was showing ignorant foreigners around his town. His town had 4 universities. Not many people speak English. I am not surprised. They love art – the custodians of the museums are an army of learned old ladies who tell you off for everything and I fucking loved it. And once they understood that I wanted to learn about the culture, they were kind to me. Also once they saw I had a bottle of water to take pills, they were forgiving (no drinking in the galleries…. but no cafes etc.)

They put booze in their tea. But I did not see any sign of the fabled alcoholism.

They really, really believe in massage and if I had not been so stressed about my Dad being ill, I would have had one.

*A Professor who gave us lectures on the boat (working for 7 days and nights – she had to have lunch with us etc. etc.) earned less than £500. Now, that may sound a great deal, but for over 7 hours of lecturing, with notes…. that is nothing. Not compared to what the guests were paying for the holiday, and what you’d pay in London to have such lectures – £20 per person per lecture at least. We were her summer job. She was amazing, and in a later post I shall recommend her to you all.

” And all of a sudden…”

I was diagnosed with Asperger’s. That’s right, with all the other stuff, I’m on the Autistic Spectrum (ooo shiny neon).

The people at the Maudsley are smart. They give you a pre-printed letter of diagnosis with your particular type of Autism ringed and ticked, and notes about further tests written on the bottom. This is to by-pass some of the shit bureaucracy that happens in the NHS. It allows the person newly diagnosed to have proof (which helps claim benefits, convince parents and partners etc), and confirms everything for them. Many people who get the news are confused, or just uncomprehending, so the letter covers everything and has details of relevant charities etc. on the bottom.

So, apart from sending you away with a diagnostic letter, the Maudsley people are doubly clever: once they’ve decided you’re of interest, they sign you up for all sorts of tests. Hell, they even took blood. Now, the tests are optional – you are not made to have them. I have odd genetics and they want my blood and DNA – they can have it. As a female over 30 getting diagnosed, I’m quite rare – women are less diagnosed than men, and usually when young. Or that is the current case, but it’s looking like that is changing rapidly. In addition to a genetic abnormality (EDS) I also have other weird shit (random extra hole in the head that wasn’t there 10 years ago, anyone?). I’ve taken part in consultations about treatments for Scoliosis and Chronic Pain before, and am fine with helping research.

I went to this second appointment scared that I was wasting their time – that my Mum’s wish and urging for me to get checked out, and my following it through, would be bit wacky. That I’d be taking the place of someone who really needs the attention, and, if younger, could really benefit from their help – who are struggling physically and mentally, struggling to learn and survive. But I’m glad I went. Some of the questions I was asked really got me thinking properly about my situation.

So, that was Thursday.