Burrr Blurrr

Cracking Migraine, Gromit. I took my Cocktail’* to salve head. Had shower. Body recovering from Holiday. Can’t see properly – well blurry. And can’t spell. That is one of the side effects of the Cocktail – but the effects turn up randomly. So now I feel ‘Burrrr’, and can’t see well.

But I could see well enough to read another Health Assessment Advisory Service (HAAS from now on, basically Maximus at the moment) letter making my WCA Sept. 20th. So I’ve contacted my Advocate to find out when she’s free. It’s planned for the Morning which I’ll have to change. My Dad asked why? Why not the morning? Well, if you were going to Court to defend yourself, you’d like to be awake and prepared. That’s how I see this. So I want to be well rested and prepared, and I’m not in the morning.

*Sarah Bowerman’s Migraine Cocktail – the Migraine version of Jeeve’s secret hangover salve.  –  2 Co-Dydramol, 400mg of Ibuprofen, 10mg of Propanolol, 2mg of Diazepam and 5mg of Rizatriptan. Take with water. Fight urge to vomit. Stay lying down. When you can blink with out hurting, but you still have terrible head pain, get in shower and wash hair. Then spray down self with cold water. Go back to bed. Sleep. Usually the makings of this Cocktail will be found in the bedside table draw. If you don’t sleep immediately, you may end up being asked things you can’t answer and writing stuff wrong on the Internet. Your vision may be impaired, your typing wonky and your spelling appalling. Orange Juice, with added sugar may help. Rizatriptan does work for Hangovers – similar shit happens in the head re: dilation of vessels in both situations.

I apologise for spelling in this – I genuinely can hardly see proper.



Poke Your Mom

The title refers to the Pokemon Go! phenomenon. I have recently returned from a holiday in a lovely city where my companion played this game all the time and there were even moving adverts about it. On this holiday, to a place I’d been before, I also missed my Mother in a profound and absolute way. So ‘Poke Your Mom’.

A short update – I returned from Holiday to a pile of letters:

  1. My current level of ESA (£73 p/w) has been confirmed.
  2. My WCA, scheduled for September 8th, has been cancelled and not rescheduled.
  3. I have a Pain Management appointment at Charing Cross in November.
  4. I have a Psychiatric Assessment late in September.
  5. My GP still has not written me a letter, even though my Dad was set on him: this is because the guide letter I wrote (3700 words) was very long. My GP will write such a detailed letter, but it will cost £45. My Dad is willing to pay that as long as the letter is ‘what I want’ – I must think about this.
  6. I’m covered in my first Mosquito bites, my friend saved me from a Hornet and I broke the toilet in the place we stayed. Oh, and I broke out in boils.

I think 1 & 2 are the result of the final thing I did before my holiday: I finally sent in my ESA50 form. With it was a copy of the 3700 letter. The night before my early morning flight I filled in my form (having written drafts etc and followed the advice of the CAPE advisor and also the website ‘Benefits and Work’. I don’t know if any of the extra help, advice and reading will actually do any good, but at least I will know that I did all I could.

I have to go and sleep now. I’ve over done it royally, and I must rest.

Blushing like a Kewpie Doll


This is a Kewpie Doll. I don’t know the history of it, I do know it’s now being used as a brand name for Japanese Mayonnaise. I only know about them because I have a long interest in the book ‘Red Dragon’ by Thomas Harris*, where the victims of a crime are tied up and look like ‘Kewpie Dolls staring’. So I had to know what they were.

This pink’n’coy/embarrassed little chap is a very good visual representation of how I usually feel when I contemplate being honest about all the shit that happens to my body, and all the pills I have to take and all the horrible things I have to do to get, ahem, ‘output’. But I have been packing for my holiday, and decanting body washes and creams (acne, psoriasis), collecting together blister-packs of each pill I need, putting together a little box of loose pills (Iron, Vit.D, Folic Acid) and flattening the Tubi-grips, sticky plasters and ankle supports so they all fit, and this time, I’ve not been embarrassed about the big clear washbag full of Immodium and Anusol.

But I have been embarrassed. At the end of July I asked my GP to write me a letter to support my claim for ESA and also support my assertion that I am not physically or mentally able to undertake regular employment – that I am not stable or reliable in any sense. I wrote a long and detailed letter and sent it via e-mail to the Surgery Manager as asked. I called to follow-up and also tried to speak to the Manager face-to-face when I went for appointments – but nothing happened. So, as I’m going away, and I have my WCA on September 8th, I decided to print out the letter, with a covering note, and give it to the Manager. And I sent in my Dad to do it. My Dad is 71 and very different from me. He handed in the letter and spoke to the Manager, in his own way. He has a very good relationship with him, which I never have, but he’s also a hard case and determined. He’s going to ‘sort it out’ while I’m away. My Dad getting Medieval with the Surgery is not the embarrassing thing. The embarrassing thing is that when I tried to explain to my Dad what the letter was for, he said ‘Oh, it’s ok, it’s on the computer and I’ll read it when you’re away…’. Shit. My Dad doesn’t know that I have to self evacuate my bowels, or that I can’t have sex**, or that I self-harm and think of suicide every day. But the these things are in the letter – including an exact description of poop evacuation. Some things you don’t want you Dad to know.

So, before I head off to Austria, I’m going to copy the letter, change the name and edit the original, so that if he reads it, he won’t hear about what I do with my hands in the toilet, or with a needle when I can’t sleep because of despair.

*Harris wrote ‘The Silence of the Lambs’ but I had the Audiobook of him reading ‘Red Dragon’ when I was 9 and it kept me spellbound. It involves a William Blake painting and gave me a taste for chaps with harelips.

**Why don’t ESA forms ask about sex? Sex is considered a normal function and an aid to happiness, why is it not asked about? Disabled sex is ignored. I can’t function sexually because of my lack of movement and pain. I remember when we had a class about this in Pain Management – I was still a Virgin and it was all rather embarrassing as I was the only person there who had no experience. However, I could still not use the positions etc. they say. One day I’ll get back on the horse. I may be 75, full of Codeine and sharing my time with a 3D printed robot, but I will have a tingly good time again.


Semper Eadem

The title was Elizabeth I’s personal motto – ‘Always The Same’. Elizabeth was a great Latinist and general scholar. Always has been a hero of mine, and not just because she was a female monarch. However, this doesn’t really connect to my subject. Semper Eadem does – because at the moment things seem to be ‘always the same’.

At the moment, the ‘same’ is stress. I’m going to tell you something I’m worried about mentioning. I’m worried because I don’t want people to get ‘the wrong idea’ about me. I am scared of people thinking I’m a liar. That I’m not ill, that I’m shamming my inability to work. I’m going on holiday abroad for the first time since 2009. It happens that this was arranged and ended up happening at the same time as my WCA was booked. I thought it was ‘fate’, the universe telling me I was a giant fucking liar. I’ve always thought of the ‘universe’ (or God) as making such things happen. Brought up a Catholic, but with an unconventional idea of my relationship to the deity (usually you need intermediaries, but my Mum was unknowingly more Lutheran in her ideas – we humans have a ‘direct line’ to our God/Father) I was encouraged to believe that everything that happened to us was for a reason and was from God. So getting a letter stating I was meant to have a WCA on the day I was also meant to fly away felt calamitous.

Queen Elizabeth I (1538-1603) in Old Age, c_1610 (oil on panel), English School, (17th century)  Corsham Court, Wiltshire.jpg                ‘Fuck, I’m so fucking tired’: Posthumous Elizabeth I with Death, Time etc.

I got stressed. I’ve had migraines, seizures, no poo, sudden poo, no appetite. Pain in my head that I’ve tried to whack out. Neck pain, arse pain. You name it. And the suicidal thoughts! All the old friends. Semper Eadem. But then I began to have random moments of clarity. In my belief system, Mum used to say that you must remember that the Devil also works. These acts may not just be God. So if I see my appointment date as bad, it may be Bad – capital B. It may be a negative thing trying to be negative – something else to derail me. Another Thing. Like the DWP constantly sending me letters asking for evidence (letters that even my Dad considers ‘threatening’). Now, I don’t want you to think I see Angels and Devils all over the shop. I don’t. All I see is that things happen to me, and that I must attract them – the bad things. I’m an Anxious Depressive – it’s a common thing for us to blame ourselves for the random bad things that happen. We are not Virtuous enough  (in the old skool sense) to be happy. Many mainstream publications and personalities (*cough* Daily Mail *cough*) support and promote this view of the disabled and the disadvantaged. God and the Devil are my lexicon. But the ideas are usual. So, I decided to view my situation a different way. My appointment time was just shit happening (and if shit isn’t happening, you’re dead). Deal with the shit. Flush the fucker. So I did: I finally got calm enough to call the number and change the appointment. Then I chased up another worrying thing: my missing Fit Note. I sent it on August 1st and I’ve had no response from the DWP about if they got it. Phoned: 35 repeats of Vivaldi later, they had got it, but they had the wrong phone number for me, so they sent a confirmation text to the wrong person. So it was just a Gremlin, a tiny Devil in the DWP system after all. It wasn’t me being bad or worse than others, it was someone employed, being paid at the DWP who could not type and didn’t double-check their data imput.

So I’m calmer. I still have the ESA50 waiting like a Goblin upstairs. But I’m actually looking forward to my week away. Which I wasn’t. I was scared. I wasn’t just scared because of DWP things. I was scared because I’m 35 and I’ve never been anywhere without my Mum or Dad. I was scared because I get sick quickly and sometimes quite severely. In 2012 I had to cancel plans to travel to Japan with my same Very Good Friend because I got Pancreatitis and nearly died. I was scared because my Very Good Friend hasn’t spent more than an evening with me and I’m a big lumpy mess that bits fall off. Hell, she’s not even seen me without make up, and my Acne is bad at the moment (thank you stress). I’m still kinda scared, but I have a few days to Chill the Fuck Out. Last night I made myself sit in a newly furnished room in the house, on a new sofa, and watch a film I’d not seen on a new TV. That relaxed me so well. I must remember I can feel normal.


A print version of Henry Fuseli’s ‘The Nightmare’ – originally a painting of 1784. The painting is muddy so I chose a print to show you – I always think of my Goblins as being like the fellow lying on the lady’s chest – heavy and breath constricting. I wish I could bend like her. The late 1700’s and early 1800’s were full of ‘Gothick’ pictures like this, but Fuseli’s image is one of the more famous and mass reproduced. Goya did another good one.

A note on the image of Elizabeth I: c.1610, oil on board, Corsham Court, Wiltshire. I love how she’s got her hand under her wig – she’s not even bothering to pretend that’s her own hair anymore. There’s a fuckton of symbolism here: Old Father Time on the left has broken his glass – showing that the Queen’s life is over (she died in 1603). He’s gone asleep with his scythe as he’s not watching her life anymore. The skeleton on the right has his own timer, and it shows her sands have emptied – he’s coming to take her, but also to remind us that we all die, even the great people. Elizabeth is showing her ‘greatness’ again by not fighting death. She is relaxed and ready, but also (head on hand, eyes looking away from viewer into distance) contemplative. The cherubs over her head hold her signs of Royalty (Crown, Sceptre) and also fame (Laurel Wreath). It’s a cool image of her. One of my favourites.

Walking into the knackers yard eyes open

That is what I’m doing. I am knowingly fucking myself up. And others. After volunteering, in a burst of radical mania, rather than rest or even eat, I went in search of the past. My Father is visiting my Brother and his Brotherettes* tomorrow and wants to deliver unto him some of the crap from the house that is his. My Father doesn’t know my Mum hoarded my Brother’s teenage years. Kept them safe. Kept them safe in the bottom of my bed. My bed used to be my Cousin’s and when he moved out, and my Brother got married and moved out, Mum filled it with band T-shirts etc. My Brother never had space for these things, even in his 3 story 9 bedroom house. But when Mum died, he had room for some of her things. Now I am rendering to Caesar. Unfortunately my Mum, while an accomplished folder and storer and ironer, failed as a Moth Proofer. I’ve found the little buggers in my room, but none of my things were eaten. I had no idea of where they were coming from. They were coming from beneath my sleep. From within my bed. So routing out the Nirvana, Jane’s Addiction, Dinosaur Jnr., Happy Monday’s, Orb and Primal Scream T-shirts from the early 90’s and the Spurs football uniforms from the same time, I discovered this cache of nostalgia would need washing. And drying. So I’ve washed. 3 or 4 loads now. I’ve also broomed and hoovered my room**, washed and sprayed and mothballed the draws, washed my duvet, piled books up, bagged old VHS tapes*** and discovered a box of my past my Mum also kept.

I’m in mania and in pain. I was in pain all day anyway. But the mania was a mere buzzing fly**** but now it’s full on. I still have my massive ESA50 form to fill in because I’ve been too fucking scared to face it. After nearly 2 months. I have to call Maximus to re-arrange my WCA for a day my Advocate can make it. And I have to get myself ready to go on a holiday with my Very Good Friend. I’ve not been on holiday beyond these shores since 2009 and I’ve never been away without my parents. So you can see how it’s all a snowball of potential fuck up and let down. I over tax myself and I’m fucked for my holiday. I don’t get things done and I fuck up my ESA. Self-sabotage they call it. I did it during my BA and I’ve done it ever since. And I’m in the midst of its roaring tornado. Even sitting here writing this, I’m adding to my likely failure. Piling a cake onto the extant obesity.

May I now sleep, may I wake clear-headed and calm. May fear fuck off and may the pain that’s developed in my neck and shoulder respond to tea and pills, or at least drive me to fill in that form with a Bad Day to inform every word.

*My Brother’s 3 children. I call them other things too.

** I’ve not had a hoover in my room for a year. I had my own, but when Mum got sick and the builders moved in, it went downstairs. I’m now not able to bring it back up the 2 floors. I dragged the smaller, shitter hoover up the stairs (1 set rather than 2) to my room with literal gritted teeth, feeling the pull in my appendix and gallbladder scars, and in my uterus and anus. Mania will do that.

***I’m not ashamed of any of them – Hammer Horror, costume dramas. Now available on DVD when for years many were not.

**** Tim Buckley, Jeff Buckley’s Dad has this song: https://www.youtube.com/watch?v=2hJzgLOSNrM – the whole album is good. I thank the first man I kissed for making me a copy – I didn’t realise it was a romantic gift. It only took me 6 months and a very cold night to get the picture.

Why was stuff stored in my bed? Well, I was the youngest. My divan is my Cousin’s, my mattress was my Brother’s. They’re both over 20 years old. I’ve never had my own wardrobe. Not a sob story – but a descriptive indicator. I’ve never asked. The fact that my things have been kept in boxes or bags or other people’s draws etc is just what I’m used to. Even now I can’t ask for stuff, or say ‘Yes’ when offered. The Holiday has been planned on and off for 10 years. This year My Very Good Friend organised it – bam. And I had no excuse. She has done everything. Everything in consideration of me. And I am shitting myself. Eugh.

Positive Hypermobility.

I think every now and then I’m going to do a post about Positive Hypermobility – people who are Hypermobile and it allows them to do amazing things. Those who don’t have the negatives of a syndrome etc. Hypermobility allows us to have ballet dancers, gymnasts and contortionists. In many people it reduces their chance of arthritis and age related joint stiffening. It’s not all bad*.

I’m going to start with Michael Phelps. Yup, the Multi-Record Breaking Olympian. Phelps has double-jointed (Hypermobile) ankles, knees and elbows. I think that he’s also got some super-flexible shit going on in his shoulders. His arm span is 6’7″, 3″ longer than his body length. All of this makes him flexible in the water, able to adopt a super aerodynamic shape and use his very large hands and size 14 feet as oars/flippers. Long, lean, flexible and powerful. Phelps is the model of positive hypermobility. At 31 he’s still leading his field – this is old for Olympians, and would be the late career stages for a footballer – but Phelps’ hypermobility may enable him to keep winning for longer. It certainly would have played a large part in his return to form after his retirement in 2012. Unlike many sports people, the naturally stretchy hypermobile athlete doesn’t have to strain to keep flexible, so it would not have taken him as much work or time to get back to flipper form**Olympic+Team+Trials+Swimming+Day+2+4RfRC9ZEe-Ul.jpg.

Michael Phelps, stretching.-  Phelps’ flexible shoulders allow him to excel in the ridiculous ‘Butterfly’ stroke, which is rather like watching a flying fish propel itself out of the water. Look at that elbow..

More images courtesy of Buzzfeed: https://www.buzzfeed.com/sophiegadd/pictures-of-michael-phelps-stretching-that-will-make-you?utm_term=.wdpLYgx8eQ#.bgE5mDwL1k

*She writes grudgingly…

**I don’t know how he responds to injury and reading of his routine and determination, I imagine he never really got too out of form. What I mean is it’s different from those athletes who struggle to keep supple, and who stiffen up without training. It will be interesting to see what happens to him as he ages: will he end up with knackered joints? I hope not. So many great, flexible dancers from the Golden Age of Hollywood Musicals ended up in chairs or on sticks. I think he could easily retire now to a life of Pilates.

Weak week

Brief update on all the usual things.

  1. Monday I had a psychiatric assessment with a new Doctor. I’m being referred back to my local Mental Health Unit, where I used to go 5 years ago – I’m going to go back into normal therapy and then CBT. I’ve had both before and they helped me. I’m also going to be referred for assessment for Autism, this should take 12 months as that is the waiting time in London. I’m also going to have my dose of Citalopram reduced: I went to the appointment hoping they would put it up, but actually I found out that I’ve been on a dose I should not have been prescribed – 50mg. Indeed the Psychiatrist is writing to my GP to find out who prescribed this dose. I’ve officially been on it for 4 years, but actually stuck to 40mg until my Mum got sick last May. Recently some days I’ve taken an extra 10mg. But Citalopram is not meant to be taken in such a large quanitity. The Psych. suggested I change my medication to Mirtazipine, but I said no: at the moment I’m going through the ESA and I have to help my Dad sort out this damned house, and I can’t be changing pills and going nuts* at the moment. The Psych. has also given me a number to phone to get CBT now, but he doesn’t believe they’ll help me because of my recent self-harming and repeated sucidal ideations.
  2. Volunteering Tuesday: I was so fuzzy and muddled at work I had to sit down do do some duties that should be done standing up. I was exhausted – and made a cock-up. My boss can be a little powerful in his disdain when people don’t do things well/ correctly
  3. Slept the whole of Wednesday.
  4. Thursday: I met up with my MIND advocate to catch up (I’ve not seen her for 15 months) and to discuss what I want help with at the WCA. I was there for 90 minutes. It was stressful, and this was added to by my Dad hijacking me with his plans for my weekend: telling me I had 2 days to clear 2 rooms before people come over to help clear them. He wants it done because the family members are going away and he wants to use their time. I wish he’d told me earlier. I have to say, I got angry. I told him it was my stuff and he could basically f*ck off. I don’t want people going through my stuff. No one in my family is close enough to me to go through my stuff. I pointed out that Dad has lots of things he can get our family to help him with. He should sort his own shit out first. Last week he was nagging me about chosing a curtain pole (which I did) now it’s clearing a space. I’ve not been to a gallery in 8 months nor done a proper drawing or work of art since before my Mum died. I am using all my energy on not killing myself and giving the DWP everything they want. I went to bed as soon as I got in – about 7pm. Woke up at 5am… did not get back to sleep properly.
  5. Friday: What a f*cking nightmare. Before I’ve got my pants on my Dad is asking me about the f*cking curtain rail. Then I get a letter from the DWP asking me for a Fit-Note (that I sent last Monday – I’ve heard nothing since). Helping out some more with volunteering and my Boss is in a bad mood, then a good mood. I began visualising hanging myself at work. I got so angry. I had a headache that would not shift. I threw everything at it. Which means I was in a very altered state at ‘work’. Once I got out (still angry for no reason) I went to exhaust myself – and ended up having a 1/2 pint of terrible tasting lager off Bond St. which helped the anger…. Getting home I managed to eat (I’ve not eaten since Tuesday), and change the dressing on my current arm cuts. The old bandage smelt of cider. Here I am at 5am, with crap on the TV, still awake. Still with a f*cking headache and a house full of dead people’s shit to sort out.

* Nuts is my term, haywire is another term, jumble brained, loopy – non-functioning and terrified.

Oh, and I can’t poo. I want to get rid of my headache, the pain between my shoulderblades, the knot in my lower back, and my poo.


Cave of Spleen

This is going to be a very lazy post, splattered with images of Alexander Pope (1688-1744). Alexander Pope is a famous poet, essayist and wit. But he was also the subject of much prejudice. He was a Roman Catholic, in a time where that was a bad thing – as a Catholic he was not allowed to live in the Cities of London or Westminster or attend Oxford or Cambridge universities (the only universities in England at the time). Catholics could not hold government posts and offices – so they could not be Judges, MP’s etc. No power. But also he was disabled. From the age of 12 he suffered from the side effects of Pott’s disease, perhaps contracted from a wet-nurse. Pott’s Disease is a form of Tuberculosis that affects the bones*. Pope developed a hunchback and didn’t grow above 5ft. He developed other problems as he aged – breathing difficulties, sore eyes, migraines, constant spinal pain and general weakness. At the end of his life he wore stiff ‘bodies’ – like a buckram corset – to keep him upright, and he spent a lot of time in bed, writing. He had a female maid to put him into his ‘bodies’ rather than a male valet to dress him.


Sir Godfrey Kneller: Alexander Pope, Oil on Canvas c.1721 (c) St John’s College, University of Cambridge; Supplied by The Public Catalogue Foundation. Pope suffered from migraines and headaches – he is frequently represented holding or resting his head, even putting his hands under his wig, or without the wig that was common in the 18th century.

Pope’s disability and our shared religious upbringing were not what brought him to my notice and interest. The above image was. I had a slim, cheap volume of portraits when I was a ‘tween’, and this was my favourite. I thought Pope had a beautiful face. In fact, as a later teen I copied this onto my school bag. Pope was a double outcast in his society – his faith and his disability made him almost a non-person. In 18th century  Britain people associated the appearance of the human body with the purity of the Soul. If your body was deformed, your Soul was bad. So you can imagine what was said of people like Pope. Hunchbacks were actually quite common, but Pope had the added problem of short height, a very unusual face (discussed below) and a powerful wit. Though he did not attend University he was well-educated and became an excellent Classicist and editor of Shakespeare.Alexander_Pope_by_Michael_Dahl

Alexander Pope by Michael Dahl, Oil on Canvas, 1727 -NPG, London. (Pope was painted a lot. I mean more different types of portrait of him exist than of the then monarchs.)

If you look at most of the images of Pope, you can’t tell there’s anything wrong with him. He does have a striking face in an age where nearly everyone looks the same** – portraits of the time are famous for having limited facial types. In the above two images, Pope is represented as a thoughtful, Muse-struck writer in relaxed dress – almost a ‘Bohemian’. He doesn’t look at us – he is ‘looking beyond’- nothing much has changed in our view of writers as ‘spiritual’, almost magical beings.Alexander-Pope.jpg

^Here Pope is a young Gentleman by Charles Jervas  (1714)- formal with long wig and coat – Sunday Best. Elegant hands on display – quite usual for the age.

So far Pope, young, has played two roles – gentleman and thoughtful poet. Striking but normal. All his formal portraiture seemingly shows him thus. But there are cracks:Alexander_Pope_by_Charles_Jervas.jpg

Pope by Charles Jervas c.1715 – Oil on Canvas, National Portrait Gallery. London.

In the above full length seated portrait, Pope is again contemplative. The female behind him represents his ‘Muse’. The bust on the left is of Homer, who Pope translated. Again, not a rare image of a poet. Muses bother these poor people all the time. However, Pope is uneasy in his seemingly comfortable chair. If you examine his physiognomy, it too is uneasy. His legs are very thin in his stockings. They are short and narrow compared to his shoulders. His arms are long and large, terminating in hands almost as big as his feet. Jervas was no genius, but he could describe the body accurately. But most interesting is his torso. So far, Pope has been shown wearing a loose robe around his shoulders, or, if in fitted attire, cut in half, so his whole upper body is not visible. Above, that is not so. From where his body bends it expands upwards, and his left shoulder is visibly rounded and large – the coat does not hide his hump. Coats at this time were not very ‘structured’ as we know them – they were round, soft shouldered without pads. They hung from the neck. Pope’s neck was short and bent. His head was normal sized, as were his arms, but his torso was short because of the bend in his spine, and his legs were small. For Pope’s physical uniqueness to be represented at all in such an image means that it must have been extreme. Jervas has edited and smoothed and glamoured his form, yet it is still ‘wrong’ – therefore reality must have been exceptional. The seeming ‘jumble’ of body parts – almost like the creature in Frankenstein- is also reflected in the odd perspective of the chair and the lack of relaxation in Pope’s seated form. He looks like he’s squirming uncomfortably in his chair, rather than calmly contemplating (something anyone with constant pain will recognise).

I have mentioned Pope’s unusual face. It wasn’t just unusual in its general features – large eyes, full mouth, striking nose – but in a particular way that was remarked on by everyone. The tendons and muscles in Pope’s cheeks were very visible – Joshua Reynold’s remarked “his mouth had those peculiar marks which always are found in the mouths of crooked persons; and the muscles which run across the cheek were so strongly marked as to appear like small cords”*** – and he had these recorded in his portraits. Not only paintings but sculpture. A late portrait: Alexander-Pope-by-Jonathan-Richardson.jpg

A portrait study by Johnathan Richardson, Oil on Canvas, 1737. NPG: Pope’s shoulders are again covered by a flattering drapery, his head is wrapped in the Laurel Wreath of Fame. But you can see the lines in his cheeks. The sketch is rough and it shows Pope’s tired, aged features. It is not idealised and is very different from Richardson’s other images of people – he was a ‘smooth’ painter. Pope provoked a very different reaction from Richardson than other sitters. And he also accepted un-finessed images – he was on 18th century photoshopped.  The lines by his mouth are also visible in the previous Jervas.

Pope was in constant pain. He was violent with his pen, and very aware of his deformity and difference. It did not stop him socialising and being popular, but may have contributed to his not marrying. He became very famous, and built a house and beautiful garden (of which the grotto still survives) in Twickenham. His physical problems- particularly his pain- did not stop him from producing a vast quantity of work – translations of Homer, his own satirical poetry and epic poetry and many, many letters. In an age of limited pain relief, no physio and rudimentary, if not bloody dangerous pharmaceuticals Pope kept going.

NPG 873; Alexander Pope by William Hoare

by William Hoare, red chalk, circa 1739-1743


Pope: pen and ink sketch made in 1744 by one of Pope’s female friends. This and the image by Hoare were done secretly: Pope would have been angered and upset by being represented so accurately. In both you can see the lines and tendons in his face and his bent spine.He’s in his 50’s here.

But this post is more about Image than the Man. Pope was painted a remarkable number of times, his face adorned artist’s prints, his books, and some not very positive materials that attacked him. The 18th century may not have had photography or Instagram but people of the middle-class upwards could and did afford portraits.**** Celebrities, Aristocrats and Royals were painted often, but for a Catholic Poet to be portrayed so frequently is remarkable. One painted image reproduced as a print in a book or in a print shop was the norm for the most famous of writers and ‘public’ personalities. The multiplicity of images of Pope is astounding. Only Elizabeth I and the mistresses of Charles II nearly a century earlier can match him before photos (in the UK). Pope was friends with some of the artists who painted him, but in addition to this, he was famous. People wanted his image. Direct images – such as from-life paintings – were given to friends, copies were purchased by admirers. This was not limited to his 2D presentation, but also portrait busts and medals. He was all over the place.


A print depicting Pope as a deformed monkey wearing a Pope’s Tiara – not only a play on his name but his religion. Pope was a public figure and this was how he was treated – not much different from public figures today – but Pope was not an MP, but a poet.


Louis Francois Roubilliac: A sculpture of Pope in marble from 1741. Roubilliac was a very famous sculptor. In this work you can see the famous lines in Pope’s face. Again he’s wearing drapery- an echo of Greek and Roman sculpture, but also a way of camouflaging his spinal deformity. Even so it is evident that his left shoulder is raised and the over-worked, raised muscles and tendons in his neck and shoulders attest to the amount of tension in his torso – many people with spinal and neck problems will recognise these over-defined soft tissues. Pope was also modelled by John Michael Rysbrack – copies of both busts were given to friends, bought my admirers and copied in later centuries for institutions. They’ve recently been the subject of both an exhibition and a book in the Yale Centre for British Art.

So what is my point? Well, it’s not really a point. It’s just a big chunk of writing about a famous deformed person from the past, whose image I find interesting. I’ve been interested in Pope’s face for over 20 years. For as long as I have been deformed. I studied Portraits at college. I never got to study the Imagery of Pope, but I would have liked to. I find the different ways he’s depicted interesting – their variety, the ways he hides his deformity, the times he doesn’t – the honesty and the lies. I see similarities – I can project – that great 21st century disease – backwards. I’ve worn corsets and supports for my back, I’ve worn scarves over my shoulders, arranged my body to hide different problems, dressed to ‘edit’ how I appear, ‘edit’ what is wrong – walking, real-time photoshop. And even with modern medicine, pain relief and physio, I’ve not written one f*cking epic poem.

About my title: ‘The Cave of Spleen’ – the Spleen was believed in the 18th century to be where you kept all your melancholy – and then melancholy was connected with ‘artistic’ affectations, and interests in the fantastick and poetic. Pope’s  cave is filled with amazing and uncanny things, and the Goddess Spleen is attended by handmaidens ‘Ill-Nature’ and ‘Affectation’ – considered the worst traits in women. Pope wrote of the ‘Cave of Spleen’ in his comedic parody poem ‘The Rape of the Lock’ (amazingly illustrated by Aubrey Beardsley). Here he is (a la Beardsley) in the cave:


Did you spot him?:


*My Great Grandmother had Pott’s disease: she contracted it after a fall from a bicycle. It turned from TB in the bone to bone cancer.



Sir Godfrey Kneller: Thomas, 1st Duke of Newcastle and Henry 7th Earl Lincoln, 1721 – a ‘Kit-Kat Club’ portrait – Oil on Canvas – NPG, London. This is an example of portraits where people look the same. Kneller was famous for painting ‘Whigs in Wigs’ and his Kit-Kat Club portraits are the archetype. But compare this image to his picture of Pope – Kneller, the man who made everyone look the same, could not do this with Pope. More information about this image: http://www.npg.org.uk/collections/search/portrait/mw03915/Thomas-Pelham-Holles-1st-Duke-of-Newcastle-under-Lyne-Henry-Clinton-7th-Earl-of-Lincoln?LinkID=mp02571&search=sas&sText=kneller&role=art&displayNo=60&wPage=1&rNo=111

*** Reynold’s full description of Pope from 1742: “about four feet six high; very humpbacked and deformed; he wore a black coat; and according to the fashion of that time, had on a little sword…[Pope] had a large and very fine eye, and a long handsome nose; his mouth had those peculiar marks which always are found in the mouths of crooked persons; and the muscles which run across the cheek were so strongly marked as to appear like small cords.” James Boswell, the biographer of Samuel Johnson described Pope thus “pallid, studious look; not merely a sharp, keen countenance, but something grand, like Cicero’s”.

**** Pope was the son of a Linen merchant – middle class – here he is, painted age 7 circa. 1695 – artist unknown. The laurel in his hand was added later.


More info about Portraits of Pope in the NPG who own the copyright of all their images above: http://www.npg.org.uk/collections/search/person.php?LinkID=mp03609&search=sas&sText=alexander+pope&wPage=0

Oh, and finally, my favourite quote from Pope, from his Essay on Criticism c.1711

‘A little Learning is a dang’rous Thing;
Drink deep, or taste not the Pierian Spring:
There shallow Draughts intoxicate the Brain,
And drinking largely sobers us again.
Fir’d at first Sight with what the Muse imparts,
In fearless Youth we tempt the Heights of Arts,
While from the bounded Level of our Mind,
Short Views we take, nor see the lengths behind,
But more advanc’d, behold with strange Surprize
New, distant Scenes of endless Science rise!
So pleas’d at first, the towring Alps we try,
Mount o’er the Vales, and seem to tread the Sky;
Th’ Eternal Snows appear already past,
And the first Clouds and Mountains seem the last:
But those attain’d, we tremble to survey
The growing Labours of the lengthen’d Way,’

Phew, if you got through that, I salute you.




Hello Weakness, my old Friend…

Wednesday was a familiar unfamiliar day. It was a ‘Bed Day’. I slept and slept and seizured and when I woke a couple of times my hands were not working and I was weak and floppy and couldn’t type and write. Familiar was it being a ‘Bed Day’, unfamiliar was the seizure and floppy. It used to be familiar. I used to be 4 times a week. Or even every day. But it’s not happened in ages. Not that way. I was wiped out.

It was awkward because I had promised my Dad I would do house-related things with him*. And I could not. And the previous day I had been energetic. But that’s exactly the point. The previous day I was energetic – and stressed. Monday I was energetic, busy and stressed while the weekend was spent writing a letter to my GP and filling in the ESA50. Ah, I see. Stress and long, long hours writing on Saturday and Sunday. Rush to see GP for new Fit-Note and prescription** on Monday, to get Fit-Note copied and posted, still on Monday. Tuesday – letter from Maximus with a WCA*** appointment on a day I can’t make it arrives, I panic, I calm, I contact Advocate, I go to volunteer, we have a dramatic day, I can’t sleep. So Wednesday is a crash. Ah. Hindsight 20/20. So I know why Wednesday was a crash and burn. Why I finally got up at 11.35 pm. I was back in bed in 2 hours.

I have to change my WCA appointment, but I have to make sure my Advocate will be available. She wants me to change the venue from Neasden to West Ealing. I don’t know if Maximus will do that, but I can try. The last time she was going to help me, she could not make it to Neasden – I shall use this in my argument.

Re-visiting yourself

My being floppy made me think. I have been reading fellow EDS blogger Ren ****and she has inspired me to re-visit my EDS. I was diagnosed over a decade ago, when few GP’s or even Rheumatologists had heard of Ehlers-Danlos Syndrome. Or if they had they’d seen 1 person or read 1 paper. Now EDS is quite well known – there have even been TV soap story lines about it, and it’s appeared in national newspapers frequently. It’s a complicated disorder and it’s largely invisible. Unless you have it, and then you can see it everywhere… However, I decided to see what the web had to say about it. To see if I still matched the criteria for the condition etc. etc. Of course, American medical sites have more to say than UK ones. Why ‘of course’ – because when you pay for your medical treatment, or when you are paid and can be sued for mis-diagnosis, it makes sense for you to be on top of rare conditions – as both patient and doctor. The UK is less clued up. The various charities and support groups are clued up, don’t get me wrong – but the NHS is not. It is slow and it does not see the whole problem. The Rheumatologist sees the joints, but it doesn’t just affect the joints. UK doctors see each part of you, in the US, they treat the whole, because it’s easier for specialists to communicate and work on one patient there – easier and it makes them more money. Here, every form of treatment is rationed, so if you get to see a Rheumatologist for EDS, you most likely won’t see a Nutritionist, or Immunologist for it. You may see them for something else, and the EDS will be noted. But that’s it. Like my ENT guy not knowing I had EDS, even though it’s on my notes. He also didn’t notice the big red stamp on my notes telling him I’m allergic to Penicillin…. EDS affects the soft tissues of the body. That’s a large percentage of your whole. All joints (including ribs), all organs that contain collagen (theoretically not your brain, but more of that anon.) – so that’s all or near all your soft bits – muscles too. Eyes, to throat, to arse, to feet. Skin, nails. Everything. If affects how you bruise, heal, scar, grow. And breathe. And feel. Literally. You need more Anaesthetic. More time to mend. Less trauma to break. You’re more sensitive to touch and perhaps to heat and cold (depending on which version of EDS you have – yes, there are variants).

When I was diagnosed (before iPhones) there were not that many variants and I was labelled mild Classic. Now the diagnosis is more nuanced. However, that nuance is because of people diagnosed the old school way. I remember being in a group of people who had a Maxillofacial specialist in with our Rheumatologist consult (at the time I was ‘under’ Prof. Rodney Grahame at UCH) and she wanted to look at our palates. Now such an exam is part of diagnosis, when it used to be theory. And it’s this that brings me back to my beginning: re-examining my EDS. Currently I would explain to people that it is part of the cause of my chronic (un-ending, unquenchable) spinal and neck pain, my lax ankle, flat feet, painful, lax knees, floppy wrists, exhaustion, tight hips, my frozen ankle, Keloid scarring, ‘velvet’ skin and extreme fatigue. It causes me to limp, move slowly, drop things and be unable to run. But EDS charities and new medical descriptors also now tell me it could be responsible for my chest pains, erratic blood pressure and temperature, frequent ‘brain fog’, acid reflux, IBS and digestion problems, dizziness, anemia, vitamin deficiency, Scoliosis and so much more!

Why am I noting this? Well, because it’s important. It’s important that I don’t forget that EDS is a big thing in my life (literally – I’m 6ft and every centimetre is affected) and that all the newly developing problems I’ve had in the last 8 years might be connected. That the development of an illness  or medical condition does not stop with diagnosis. Just because you know what is wrong and you have a name for a problem, you should not stop taking notice of it. Even if that notice only means checking NHS information about it, or a Charity Information page. As you change, it changes – research moves on, and the best way to deal with such a problem is to keep aware of the movement and the changes.


*We have too much to do to the house. I have no experience in furnishing anything, or choosing expensive stuff for the home. And my Dad has no experience of trying to furnish the house without my Mum and with someone who knows nothing and gets exhausted.

**I wanted to up my dose of Antidepressants, but the GP said no. I have to have my prescription changed by a Psychiatrist. I hope the new Psych. I see next week will understand and be sympathetic to my problems. I’m quite worried as I’m not sure how well I’ll get on with a male Mental Health Specialist.

***’Maximus’ replaced ‘ATOS’ – they now do the medicals for the DWP – the Work Capability Assessment (WCA) – a physical means test. I think that ‘Maximus’ is an amusing name. It makes me think of Gladiator, but also of a brand of jumbo condom. It’s very aggressive and kinda inappropriate for a group dealing with wonky ill people.  I always think of this song, by a Polio survivor: https://www.youtube.com/watch?v=6isXNVdguI8 –   I am Spasticus!

****https://brokendownbody.wordpress.com/ The devleopment of the diagnosis and understanding of EDS is also down to people like Ren who push for help and care, who keep chasing up doctors and who blog and spread information. Ren is in Scotland, I am in London. At one stage, the only place people in the UK could get diagnosed with EDS was London and Liverpool, so too Scoliosis – it was UCH and Alder Hey if you were a kid.