terra pericolosa

paintig

I cleaned the desk. And then I messed it again with painting equipment and I think it’ll stay messed with painting and drawing equipment forever.  Outside of my sketchbooks, I haven’t painted in so long. Years? I forgot how it always feels like walking a tightrope without a safety net; I love it and feel sick to my stomach all at the same time.

I know right? It’s just paint.

Like hands are just hands, and shoulders just shoulders, and pain just pain.

The worst thing about that conversation with the rheumatologist last week wasn’t the miscommunication (lord knows, that’s just humans talking to each other), nor really the way the news was delivered (lord knows, that too is just humans talking to each other), but it was the uncertainty re-introduced. Am I really feeling what I think I’m feeling? What even is it that I’m feeling? I had developed a level of understanding and acceptance of the pain, and suddenly it felt like I had been reading the wrong map, or had it upside down, or had been given only a fragment that I had thought was entirely whole. Left became up, down straight ahead, right was sideways, and I didn’t know how to reach home from there, and if I couldn’t reach home, then I also couldn’t defend it, and it felt that day like it needed defending.

I realised in the short walk between the doctor’s office the carpark, how little I know of the inside of my body. My body that is me. The big stuff, of course yes, but that’s like naming continents on a globe, a few countries, some major cities. What of the countryside, the villages, the mountains, the valleys, the weather? The flora, the fauna? The wars, the colonisers, all those who have fled? I just don’t know. I’ve never cared enough to find out.

I care enough now. As part of understanding the pain inside my body, I want to understand my body itself, to trace along all the soft, the bony, edges. How else can I truly talk embodiment and pain? I don’t have a scalpel, and vivisection, self or otherwise, is unlikely to make it past the ethics watchdogs; nor do I fancy digging up graves.  But I do have a pencil, and I do have paper, and if I can’t literally trace along all the soft and bony edges of the terra incognita, the terra pericolosa, that is my organic self, I can use maps that others have made of other bodies, use the images that have already taken of the inside of myself, and draw my way to some kind of a better, deeper, understanding. Draw my way home.

800px-The_Ride_of_the_Valkyrs
Ride of the Valkyrs, John Charles Dollman

I call it terra pericolosa because I know there will be dangers. At a metaphorical level, the dementor and the valkyrie are still both hiding in there somewhere (or have they been vanquished? Will we ever even know?), the Green Man we’ve already met, and likely there are myriad other creatures lurking in the depths besides. At a psychological level, I am sure there will be some painful reckoning with loss, with aging, with fragility and mortality. Exploration, she is a dangerous business.

medieval illustration
‘Wound Man’ from the late 15th century

So that is my next project, my focus for the next year. I think I might turn it into a series of paintings, or maybe keep the drawings in a folio rather than a sketchbook, so they can be displayed if need be. But that’s a problem for future self; current self needs to get back to work on her current project.

But still. For all the dangers, at an artistic level I’m too excited for my own undies about this one. Medical illustration meets medieval myth – that totally sounds like something I would do.

could probably have explained all that in just a few short paragraphs

oh lord what I have I done

I like to call this one “OH DEAR LORD WHAT HAVE I DONE?” because oh dear lord, what have I done?

Next couple of months I’m focussing on making sense of the past year, pulling together the academic literature and the personal experience into one coherent piece of work. I’ve been struggling to know where to start, how to construct coherence out of the mess, disjointedness, unpredictability of the actual experience without betraying it. I was staring at all the many sketchbooks I had randomly drawn in, jumping around one to the other for no good reason, in no sensible manner, with no theme or plan other than the drawing made sense to me at the time. (Though I am still not sure what ‘sense’ quite means in this context).

I thought about pulling all the pages out and gluing them into a new book but that doesn’t work because most pages have been written or drawn on both sides, and that would cut out half the work, half the experience. Rip them out and put them all in a box? Tidier, but a little meaningless. Leave them where they are and photocopy examples? Sensible but, erghh BOOOOOORING. It was doing my head in, trying to sort it all out, and I spent a lot of time and energy locked in head-clasping frustration.

Situation normal.

I love handmade books, I’m a bit of a sidelines bookbinding uber fangirl nerd. I’m on the sidelines because there is lot of measuring involved in making books and each page has to be slightly different in size to make them line up when they’re folded and I die the minute I have to get involved with anything resembling things like rulers and details and measurements. I’m dying now just writing about it.  The bonus of nerddom though, is that you know lots of mostly useless facts about the object of your obsession, like the Orihon, or Japanese fold style of bookbinding. It was developed as alternative to the Chinese scroll, and was (is) commonly used for picture books.

Livre-eventail-Japon

Thus so. And the bonus of them is you can see both sides, start one way or the other, fold them flat, or open them out to see everything at once. Contained but visible. Perfect.

I decided to do this with all the various drawings and writings and even MRI appointment letters I have collected over the last year or two. I can’t literally fold them into a book, and they are all different sizes, but I can sew or tape them together in a similar accordian manner that will work in a similar way. It’ll be super fat, but it will also be a way to keep everything together without losing any of the feeling of incoherence and fluctations of the daily experience. You can open any bit at random and see a slice, or pull out a few pages and see a few slices, or pull the whole thing out into one very, very long visual story. I haven’t counted the pages. It’ll be three figures…

Yesterday afternoon I ripped out every single relevant art journal page I could find so that I couldn’t change my mind, so that I had to just get on with it (hence, oh dear lord, what have I done?). But it was disappointing. I realised it’s still too incoherent, visually too chaotic, had a lot of writing and a lot of just plain old fashioned pointless doodling. And though you could make a case for it just like that – it is what I had written and drawn at the time, after all – I just wasn’t comfortable.

In short, as a researcher it was fine, but as an artist …

non

… just non.

I can’t remember how I thought of the solution this time, one of those sub-conscious soupy messes that keeps spitting out mostly useless options until, quite by chance, it throws up something genius.

Also, and all will be explained, I have a real thing for polka dots.

One of the main ideas I wanted to portray visually was the unpredictability of chronic pain, but also how in those early days especially it was very chaotic and changeable. I mean, life is in general, yes, but it was so heightened in the midst of that second attack. I was trying so hard to keep everything together, yet everything seemed equally determined to keep flying apart.

I thought of painting over the pages a little to add coherence, but that would take away too much of what is there – I don’t want to paint over even the stupid most useless doodle, and I don’t want to so greatly impose what I feel about it now with what I felt about it then (though that is a necessary part of the interpretive process too). But…

… maybe I could paint a bit?

I could paint a large bright dot?

Colour coded dots?

Each colour a different feeling? Red for pain, black for grief, green for joy, I don’t know, we’ll code it when we get to it…? And these dots placed at different levels, so you can see at a glance, without reading a word, without paying much attention at all, the whole bouncing, ricocheting, carousel-riding uncertainty of it all? Open any section, front, back, upside-down or right-side up, and those leaping coloured dots will jump right out at you and smack you right in the head. You can still go in and read the notes, the letters, see the doodles and drawings in close up, but you don’t have to in order to understand the type of merry-go-sorry unpredictable experience it was (and remains). Coherent incoherence. I’m a freaking genius, a legend in my own lunchbox.

artist impression book
a really horrible and totally inaccurate impression of how it’s all going to look

Well. At least I am someone who is now certain this whole first PhD section is going to work.

And one who has to stop typing now, again. I really need to write shorter posts. Before I go though, I also have a project for this next stage ready and willing and able to go, and will explain all about that tomorrow. I’m calling it Terra Pericolosa, and think maps and beasts and bodies.

i shall have to change to a bird or a fish*

I was visiting the rheumatologist because of the bony tender lump on my hand. I wanted help with the bony tender lump on my hand, it’s painful and difficult to use and I’ve had enough. The rheumatologist looked through the x-ray and ultrasound report done on it, then quickly looked through last week’s MRI scans too. I wasn’t visiting him because of the neuritis, but I was interested to know what the MRI report said because I hadn’t heard, and craned my neck forward from my seat toward the pictures on his computer. I could see that the radiologist had written an explanatory letter and I asked my doctor what that letter said.

It says there’s been no change.

But what does the whole letter say? I can’t read it from here. 

It says there’s been no change.

I told him that the neurologist wasn’t sure why I had pain and no muscle weakness, and if he had any ideas, so he asked me if I could replicate the pain?

Not the sharp pain, no. But it hurts more if I do this, or lift my arms like that, and things like getting dressed can be really fatiguing. 

He pushed and pulled and moved my arms around until he found a place that fucking hurt when he pushed on it, and he pushed on that same place on the other side, and it FUCKING hurt there too.

Megan, do you exercise?

Do I … ? No. Not really. (I garden, I clean the house, I lift groceries, I walk for freaking hours around every store imaginable an inordinate amount of times to trail my daughters’ shopping, but exercise? No. Not really.)

You need to. 

He thinks the pain I feel is from my shoulder girdle muscles not working properly after the first neuritis attack, that they are weak and causing problems, that it is not nerve pain anymore at all. He believes the inflammation on the MRI is just a relic, a ghost, a haunting. I look doubtful. He says that you can’t replicate nerve pain, that it was just muscle hurting in the places he pressed.

That pain was, yes, but…

You can’t push on nerves like that and make them hurt.

 … no, but

He’s generally a patient and kind doctor, his diagnosis reliable and his willingness to listen above average. Today I see frustration and a bit of annoyance and perhaps he thinks I don’t get it, that I’m saying he’s wrong, but I’m not saying he’s wrong. I think he’s right. I’ve been thinking that the damage to the muscles has not been noticed and I’m glad he’s picked up on it. I also think he’s focused on my answers to his one question at the exclusion of other useful questions, missed entirely how I am trying to explain that I also still get nerve pain, the sharp, shooting, burning flashes of mixed signals and misfires at random intervals and for no apparent reason, pain I can’t replicate. But our time is running out and I can see my protests hit that wall of expert certainty, and I give up. Nerves aren’t his thing, muscles are, and I smile placatingly and nod understanding and think, fuck you anyway.


I don’t think that. Well, I do. But only later.


The lump on my hand? He gets out his own ultrasound machine and has a look for himself. He sees the extra bones, the disintegrating joint, the calcifying cartilage.

Unfortunately that’s just you now. We can give it a cortisone injection when it’s tender (it is tender!) but otherwise it’s just something to live with.

There’s nothing you can do about it?

No. Your other hand’s going the same way too.

He delivers this news with the air of someone who sees this everyday, who sees much worse disease and much worse disability everyday. I know that he does. A lot of people have  arthritis that cripples the use of their hands, their arms, their legs, their entire bodies. A lot of people are far worse, and a few far younger, than I am.

But he does not deliver this news with the air of someone who recognises I am 45 and this level of degeneration is common if you are 75, that I use my hands daily in ways that are deeply important to my sense of worth, to my sense of identity, in ways that have kept me alive even when the rest of my world has been burned and razed to the ground. He does not know. I’ve never said.

We’re well over our allotted time now, he hurriedly asks if the rest of my body is okay; I lie and say it’s all fine, even though I have been limping from pain in the right shin for weeks, even though I had already told him this as I walked over to the examination table just ten minutes ago.

I leave.

I cry on my way down in the elevator.


Fuck that. Fuck pain, fuck sense, fuck weak, fuck entropy, fuck  dn-fucking-a, fuck ugly and old and fat, fuck stupid fucking questions, fuck stupid fucking silence, fuck not listening, fuck time, fuck him, fuck medicine, fuck tired, fuck nerves, fuck muscles, fuck bones, fuck bodies, fuck it all.


I stop at a bookshop on the way home to give me time to catch my breath before I see my kids. I feel in desperate need of something beautiful. I spend too long looking through their sparse selection of art books, generic and uninspiring. But I’m desperate. I need something. I finally choose a book on failing because it tells me that insecurity is essential to creativity and I don’t care if it’s true or not true, I’m going to believe it, and an art magazine featuring feminist artists. I find work in there by Jenny Watson. This makes it worthwhile.

When I get home, my kids ask how things went. They’re really asking about the lump on my hand, it’s what I told them I was visiting the doctor for. I tell them he said that’s just who I am now, and I need to learn to live with it. I see genuine sorrow flood each of their faces (not pity, never pity, and oh, how I love these humans whom I daily fail).

I’m sorry, they say. That’s terrible.

Yeah, I shrug. It’s just a hand.

My youngest isn’t having it, she looks me square in the face and says, but MumYou use that hand. You need it.


I do. Fuck it all to fucking hell, but I really really do.

 

(*title taken from Janet Frame’s poem The End. You can read it here.)

 

well, so, that’s enough of that then, and please bear with me it will make a little bit of sense by the end, but it’s a monday so no actual promises

Eyes dried, mascara re-applied, big girl panties hoisted high. Truth is, I don’t have a crystal ball (do you? may I borrow it?) so who the hell knows what the future holds? Might be run over by a bus tomorrow. Might live to 103 and win a Nobel Prize for … okay, no Nobel prizes. Anyway. It’s fine to be sad. It’s also fine to be happy at the same time, and to keep on swimming anyway, which brings us to my new most favourite quote (I have a gamillion most favourite quotes, I collect them):

Make voyages. Attempt them. There’s nothing else.

– Tennessee Williams

Likely there are things else, but it’s as good a life manifesto as any and better, perhaps, than some.

Moving on.

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I’m organising my ‘office’ (a.k.a the other end of my bedroom…) into zones, because I am told it is productive and good and world peace will likely ensue. Who doesn’t like a bit of world peace every now and then, eh? This is one pile of Things-I-Don’t-Know-What-To-Do-With among many such piles, because I’m really bad at categorising anything. I mean, nothing is just one thing, nothing at all, and some things even less so (more so?) than others. Do I put the book on stories and gardening with the books on gardening or  with the books on stories or with the PhD books because I might use that one idea from it, the one about connecting our past to our present through making and, oh look, there are the Beatrix Potter postcards, which one is my favourite again?, yes that one, no, that one, let’s prop it up on the bookshelf and take a photo if I can find my damn camera, where’s my damn camera?

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It’s this postcard, in case you were wondering. Ms Potter did some truly beautiful botanical illustration, they are full of life and colour even in reproduction, so I can’t imagine how much more so they would have been in the original.

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And now I have my camera I might as well wander down the hallway and see what the kids are up to, haven’t really said good morning properly to them yet, Iona would like a hot chocolate, yes please, and ah ha ha, Eilidh has made herself a tea already but Ruff has decided it’s for him instead.

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Nathan is Busy Working so no disturbing him please, but we could turn around and stack the two small block paintings sitting in the alcove opposite his bedroom door, they’re so cute, no, they’re really stupid, what kind of grown woman spends any amount of time with crayons and paper making stupid pointless faces, you’re so frivilous, ugh I need tea.

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I really like tea.

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And hey, there’s the cushion cover you found at the bottom of the wool pile yesterday, you said you couldn’t do shit like this right now, but you can actually, you’re such a giver-upperer, also shall we get more of these colours, or do the back in different colours?, probably you should use the pink and purple you still have in your drawers and let’s buy some green and blue and orange and yellow, maybe more white, no no no, stop spending all the monies!

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Take photos of the diary instead, not that there is much to see, it’s gone as off track as everything else,

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including the garden, I wonder if there’s anything new to photograph in the garden, oh that very last sweet pea does look lovely against the dewy light, I even got some bokeh, I like bokeh, I bet Kerry doesn’t like bokeh, why do people not like bokeh?, oh yeah, shallow depth of field, well I’m not sorry and I can’t see why I should be sorry, and oh that light though!

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These aren’t going to photograph well dammit, everything’s too bright, the composition’s wrong, exposure’s out, but hopefully you can see the dew threading all the way through each petal, each stem, blinking, twinklying, gorgeous gems, I’m such a poet, and bugger it, you can’t see a damn thing. Well too bad. I’ll know. Better pop back inside and upload these pictures quickly,  shit I’ve forgotten Moo’s hot chocolate and …

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… oh yeah. I need to clean the desk off first anyway.

Where the hell do you put books on both stories and gardening?

MOVING ON

 

My story is important not because it is mine, God knows, but because if I tell it anything like right, the chances are you will recognize that in many ways it is also yours…

– Frederick Buechner

I don’t think my story of pain and disruption and messy desks is in any way unusual, or even particularly interesting, but I do think that, if I tell it anything like right, it might be useful. To tell it anything like right, I need something outside my own wandering, circular (and really rather mean!) mind, to focus on something other than that jumping monkey who swings me from Beatrix Potter to Bokeh and back again. I need a focused (creative, of course, have you even met me?) project. I don’t know what kind of project? But I also don’t think it matters –  it could be learning Morris dancing, or playing the theremin, or building an Eiffel Tower out of popsicle sticks. Who I am and how I’m dealing with life will show up in whatever I decide to do. That’s reflexivity, right? It’s kind of like the bookcase to the books: not much of a big deal how I arrange them, really, if I can find something like a bookcase to arrange them in. They’ll be findable there, other people will be able to find them there. Spread out randomly around the house, not so much. But it will also tell us something about ourselves, perhaps, if you put it with the gardening books, because it’s about gardening, and I put it with the story books,  because its about story.

Or, to abruptedly crunch the metaphorical gears, a focused project will be like the paper for a map. Voyages don’t necessarily need a map. They don’t even, really, need a destination. But to be useful to anyone other than the person undertaking them, they sure as hell could do with some decent mapping. Because otherwise? Everywhere just be dragons.

And there’s no moving on for any of us if everywhere just be dragons.

the one where i nearly cried

almost properly cried twice in my supervisory meeting today, tears were definitely threatening. It was both worse and better than you might imagine; worse because it took me completely by surprise and there was no available hole into which I could crawl, and better because I do have two very supportive and kind supervisors (even if they do know far too creepily much about success rates as they correlate to suicide methods, don’t even ask).

In the first instance, Veronica was asking about grief, and why I had mentioned it as part of my pain experience. I couldn’t really describe it to her, because it is too embarrassing to say out loud, and I also knew that if I did so, we would get real proper hysterical mascara-running nose-dripping sobs. Ain’t nobody wanna see that.

 

I knew before I returned to university seven shiny happy years ago that a career in academia was always going to be unlikely, but there was some small chance it was possible and I was willing to work hard and do what I needed to do to make sure I was in a position to take that small chance if it ever came my way. I love psychology. Really love it. I even kind of love the bits I hate, and its been that way from the first lecture I ever sat through, and though she is an indifferent lover, I am a fiercely loyal one. I would have gone with her to the very end, into the very fires of Mordor. Okay, now I’m just quoting from Lord of the Rings, but who doesn’t like a good bit of Tolkien melodrama every now and then, eh? I would like to believe that there remains some small chance for such a career, but I can’t quite bring myself to actually believe it; beyond the next two years all I see is a blank space, where I used to see possibility and options. I suppose it is a little ridiculous set out in black and white like this, but I grieve that possibility. I think what I really grieve is my youth.

(I coulda had class! I coulda been a contender!)

The second time I almost cried Kerry was trying to make sense of something I had written about my research, and I had been sitting concentrating for over an hour and I just couldn’t make myself do it anymore. I wasn’t making sense, I was embarrassed at the quality of the work I had given to them to look over, and I couldn’t even concentrate long enough to keep the expression of pain off my face.  Kerry noticed, and gently called a halt to the meeting, and I felt so uselessly stupid. There’s enough things in this life I’m uselessly stupid at, meetings about my own research really should not be one of them.

I’m just tired, really. It was a bad pain day. But it’s also a good life and I’m happy to be living it, grief and pain and all.

oh look, flowers

oh look flowers

For a supposed creative sort of person, the photos here are getting decidedly uninteresting. Nevertheless, there are two mildy interesting things to note in this picture: 1) at the end of summer my cut flower options are becoming terribly sparse, and 2) I’m not holding them with my thumb because it still hurts. It still hurts and will keep hurting because I have grown a (benign) bony tumour at the carpal metacarpal joint (“likely secondary osteochondromatosis“), which now has its own blood supply and has gotten big enough to start pressing on everything else, hence the pain. I’m sorry clever wee extra bony thing, but you must die. Is it weird that I kind of feel sorry for it? It’s gone to so much extra trouble to survive and grow, and all it will get for its hard work is a visit to the surgeon and a swift execution. Well, life never was very fair, or so I am often told.

I read an interesting article (interesting if you read between the lines; the authors didn’t seem to quite understand the psychological wealth of the data they were analysing) that found people with chronic pain emphasised the social isolation of their situation, the unpredictability of it, and with that they had developed, in their various ways, a creative flexibility to deal with both the isolation and the unpredictability. In response to their loneliness, many had repositioned their values to make room for the wonder of the ordinary, of bringing joy to others, in place of the social value of paid work. It resonated deeply, and I thought it a quiet profound little gem hiding away in the dusty recesses of published academia, even if those who wrote it didn’t feel the same way (their conclusion was that people with chronic pain should be made aware of how much they value work, which will, in turn, cost the economy much less in doctor’s visits. Yeah.) Human imagination is remarkable, even, I think, kind of miraculous, and I wonder if there is something in the enforced slowing down of living with pain that engenders an enhanced noticing of everyday pleasures.

Like, perhaps, flowers.

It’s not the time pressure of terminal illness, a hurry to sort life out and get things right, but a slower, more gentle, re-evaluation of what one’s worth to society might entail.

Or something. I don’t know. I only know I have to stop typing now, because ouch, okay then, bye.

dances with drugs

Me, last night, going to bed: Arrgh, that hurts, I’m so not getting any slee…

shit, it’s 7 o’clock already!

I have only slept through the whole night one other time that I can remember in months and months and months. Unfortunately, I fell back to sleep again at 7am and didn’t wake up until 9am, so not ideal as a level of drug-induced sleepiness, but nevertheless. A full night’s sleep in indeed a Good Thing and me and gabapentin might be excellent friends after all. Has made bugger all difference to the day pain, but it wasn’t supposed to.


An internet friend/fellow PhD student has recommended that I read Depression: A Public Feeling. It looks fascinating, and it is also good to know someone else has done the whole memoir/critical analysis combination successfully. Have I said before that I’m really excited for this research? Yeah. But still. I am.

the noetics of decay*

i passed the time by looking
an old watercolour/collage that I’ve probably posted before, and may well post again

I couldn’t sleep for the pain in my shoulder last night, and in my hazy twilight state I kept imagining said pain as an abstract painting. It was so vivid, and quite lovely, and really very weird.

I had spent that morning at my neurologist, who has convinced me to give gabapentin another go, at a much lower dose and only at night. She assures me it doesn’t build up in the system like the nortriptyline did, and a small dose to help get some sleep is better than nothing at all. I’ll give it a go. I’m not hopeful.

And then I spent the afternoon at the radiologist for a new and unrelated matter – you know that thing when they keep going over an area, and hum and hah, and say things like, just wait there a minute I just need to consult someone about something? Yeah, that. There’s some kind of growth on the bottom of my thumb, palm side, which is very painful to the touch. Don’t know what it is yet, haven’t got the radiologist’s report back, I just know it hurts a lot and it’s hard to use my hand and that Dr Google has been very unhelpful on this point. It’s really very irritating when Dr Google is unhelpful.

Bodies, they are so … what’s the word? Perishable. For dust we art, and unto dust shall we return.


*I’m not entirely sure that even makes sense as a sentence, but it sure does sound pretty.

 

 

 

 

hmm, interesting…

I’ve been focussing on reading research on the pain experience, and it’s a little terrible how much I enjoy this as a topic. It feels amoral, somehow? But the curiosity muse is a little amoral I suppose, and in any case, better to love it if I’m going to be spending another couple of years with it, than to not.

Some very brief ideas that I have come across:

The moral dimension to chronic pain. I never thought about a certain morality being attached to the experience, but there clearly is (e.g. taking care of one’s body as ‘good’, not looking after oneself as ‘bad’, to horribly oversimplify it). I started noticing it in a lot of the research, a sort of moral judgement of pain experience that had not been critically examined by the writers. For instance, one article noted that health personnel need to be aware that different attititudes towards acceptance of pain would affect ‘therapeutic outcomes’. I.e., those with a ‘negative’ attitude, who didn’t accept the chronicity of their pain, would have worse outcomes than those with a ‘better’ sort of attitude. There is even a sort of morality about pain itself as inherently bad, wrong, to be removed. One quotation, emphasis mine: The goal is, naturally, to find methods to alleviate pain…*

One sociological article examined this idea more critically as a Western cultural ideal that stems directly from early and middle Christian eras where Heaven is defined as a place with no pain, as its distinguishing difference from our troubled lives on earth, and the medical community has adopted this idea of  pain eradication as a goal and moral good.**

Timescapes are almost never taken into account in research, where they could so clearly be helpful in understanding the experience, the data. One instance is the idea that people feel they can’t talk to others about pain, but the thing is the constancy of that? None of us want to listen to someone complain about the same thing ALL the time, no matter what it is, no matter how much we love and respect the person doing the complaining. It’s not particular to physical pain, it’s a human condition, and comes back, somewhat, to the ideas of the difference in self and personhood and how these affect our understanding of time. I’m probably not making any sense, but the point is, I think, as I learned in my research with Julia, that differences in timescapes are crucial to ideas of illness chronicity and I am going to make this an important part of my research, and think everyone else should too, amen, the end.

One article did mention it briefly***, they  used diaries as their data collection tool, partly to help understand the ‘daily undulations’ of the pain experience (another article used the metaphor of music for the same idea. That is, chronic pain is not the same everyday, all day, and looking to the differences, the undulations, the ebbs and flows of daily experience can help us understand the experience in general). Good idea, those people.

Lots of talk of being ‘victim’ to pain, of disconnection and isolation. I’m going to have to challenge some of that. It’s not that I think it’s wrong, I think it’s over-simplified. I also think one doesn’t have to be rid of pain to reconnect, one doesn’t even have to accept pain to reconnect, and first let us define what we mean by reconnecting, by reconstructing a self?

(I have a vague idea of my drawing/creativity being the metaphorical thread of my own attempts to patch up a sense of wholeness, but we’ll save that story for another day).

I liked the phenomenological idea that we don’t just have embodied experiences – experience, all experience, is fundamentally embodied, whether we are aware of it or not. No Cartesian duality here, thank you very much. The same article said that pain makes us prisoners of our own bodies, which I thought ironic, because mate. Didn’t you just argue that ‘us’ and ‘our bodies’ were the same thing? And also, if you want to look at it that way, we’re all prisoners of our own damned bodies.

from Schaubuhne’s Hamlet

(I feel a desperate need to quote Shakespeare and mortal coils, and whether it is nobler in the mind to suffer the slings and arrows of outrageous fortune, or take arms against a sea of troubles and by opposing end them?)

(I swear. That man was the cleverest of clever things ever.)

There’s probably more, but I’m due at a physio (not for me) and need to do some more reading around the whole self/personhood thing.


*Svanaus, F. (2015). The phenomenology of chronic pain: Embodiment and alienation. Continental Philosophy Review, 48,  107-122.

**Shilling, C., & Mellor, P.A. (oops, forgot to note the date). Saved from pain, or saved through pain? Modernity, instrumentalization and the religious use of pain as a body technique. European Journal of Social Theory, 13(4), 521-537.

***Broom, A.F., Kirby, E.R., & Adams J. (2015). On illegitimacy, suffering & recognition: A diary study of women living with chronic pain. Sociology, 49(4), 712-737.

puff the magic dragon*

collage weekend 2

No photos of the garden today because the back lawn hasn’t been mowed in a month and with the heat and rain the grass is now up to my eyeballs, and one could lose a small tribe of children out there. One prefers not to lose any amount of small children, and so I offer you a selection of illustrative puffery I completed this weekend instead. (Thanks to one comment Kerry made one time, I can no longer think ‘illustration’ without also thinking ‘puffery’, and I use it as a term of endearment ). First I made random patterns on paper, then I cut up the patterns and turned those into overly-bright picture book sort of fantasy landscapes, and plonked a few faces down at the end. I had been (vaguely, generally) following an online workshop by Australian artist Clair Bremner, but I couldn’t make mine look how hers looked, even when I tried, and there’s perhaps a life lesson in there for all of us.

I’m going to be taking a lot of these kinds of courses over the coming year, it’s odd how much you learn about yourself looking at something through someone else’s point of view. That’s part of why I have decided to spend precious time and money on this. The other part is because at first I drew to keep my mental equilibrium, and now I find a sense of curiosity layered over the desire to balance pain with puffery. I don’t know what that curiosity is about, that’s part of what makes it curious? I just know that I think it will be instructive to find out.


I spent Tuesday filming a piece with Seven Sharp about a sensory difficulty my youngest child endures (her idea – I tried not to get any camera time, but they insisted because she’s under 18, UGH) with the sorest hand imaginable and then spent Wednesday morning at the doctors, at the radiologists, trying to find out what the hell? (GP: It’s weird. It’s unusual). It didn’t feel nerve related, and also more painful than any arthritis inflammation I’ve experienced before. Seems to be inflamed synovial fluid around a wrist tendon? Still sore and hard to use and will take a couple of months to heal, a couple of months I am supposed to limit activity in that hand and rest it. Well, then. Jolly good fun to that, eh what? Pip pip, and hip hooray.


*It’s only tangentially related to puffery, but my weird hairy wiccan Year 7 teacher used to make us sing Puff the Magic Dragon all the bloody time. She thought it was cool. Note to old people: the fact you think something is cool automatically means it’s not cool at all. And dragons might be magic, but they certainly don’t frolick. Not now, not then, not ever.