i’m a bit pissed off


I’m spending the day in a sling to rest the muscles on the aching arm, because it’s getting hard to sleep (I keep rolling on to the sore shoulder), to fall back to sleep when I wake up, and getting to the point where I have to make the dreaded “take drugs and not be able to function or not take drugs and be in too much pain to function well” decision. So, I’m a little pissed off, because I had been doing so much better, the pain was intermittent and manageable, and now it’s not. Shit, and I have so much over the summer to catch up on, insert THREE angry emoji’s here.

Well. At least I still have my drawing hand. I drew roses late last night because, to steal a phrase from Virginia Woolfe, roses remind me of the certainty of goodness.

i have my bearings now

at the cafe 2

I sketched these quick studies at the cafe next to the supermarket I visited this morning. I had just bought lunch (and chocolate advent calendars, sssshhhh) for the three hungry humans who live at my house, and my shoulders were aching. They haven’t really stopped aching since the Great Mouldy Yoghurt Debacle, but nor have they gotten any worse. Small mercies. So I wanted to go straight home and not have to carry anything any further, but I had a new sketchbook with me, a cheap blank exercise book made from rather exquisite paper (i.e. it’s Japanese), a pen, and a commitment to myself to start drawing all of the things, as I first suggested I should.

The cafe wasn’t great and I didn’t know what to draw, how to draw aching shoulders, or representatives of aching shoulders, or whatever the hell else, arrrgh, this is useless. So I gave up thinking and just drew what I could see: the welcome sign, the grumpy old lady, my foul carrot cake, the reasonably drinkable coffee, and the chair across the other side of the table, which someone had splashed with bright blue paint For Dramatic Effect. It was weird decor; not awful, just weird. Incongruent. I had meant to draw just the table itself because it was very sticky and that kind of defined my entire experience. I think it must have been the varnish they had used because the table seemed clean enough. But the chair kind of made itself centre stage with all that canary yellow and splashy blue paint.

I noticed after a while that my shoulders had stopped aching, what even? And hallelu. (It returned the moment I stood up and walked back to my van, make of that what you will). I also noticed that as I drew what was around me, and documented the scene, the moment, the grumpy old lady (her companion: so, where is he now? her: dead!)I noticed that the story of the pain came out in any case, and it came out in a richer, deeper, more contextual way. Focus on the pain, and all you get is the pain. Focus on the moment, and what you get is the whole moment.

The moral of this story is to go sit in cafes every morning and draw. Obviously.

Also, thank you Frida for giving me permission to not worry about whether I am drawing well or badly. It’s so much more fun that way.

hello, its sunday

frida-161 2I’ve been reading Frida Kahlo’s diary and realised I’ve been diarying all wrong. Hers is such a random mix of all the things, and her drawings not perfect, or even, often, very good (her paintings on the other hand are genius). The stream of consciousness words seem nonsensical to me (I believe she was categorised as a surrealist, but I don’t think she fit any tidy category), and she seems to use whatever art material is lying around, letting ink bleed through pages, and even including a few doodles. A lot of doodles.

It’s a cacophony of moments without editing, or thought to an audience, and as such is rich and vibrant and interesting. Perplexing also, and confusing; a snapshot into the mind of a passionate woman with passionate views. I don’t understand a lot about her, the times she lived in, the relationships she chose, but even so, in her diary I can see her. The randomness, the mess, the nonsense, the doodles, are an integral part of that, not a superfluous aside to that.

frida-kahlo-diary 1

Note to self: have more courage, be less boring.

I like how Tennessee Williams phrased it. Make voyages. Attempt them. There is nothing else.

no heroes*

IMG_1220It was an accident of course, or if not an accident then a most unintentional assault. I was at my youngest’s school, preparing to write for a Level 3 biology exam, talking to my friend. She told me my embroidered top  looked like I had spilled yoghurt down my front and that the yoghurt had gone mouldy, (in fairness, it kind of does), then whacked me in the top of my left arm for jovial emphasis. I grabbed my shoulder and bent in two, crying hysterically with pain and fright. Mostly fright. The room was suddenly quiet, the occupants horrified, none least my friend. Oh, that’s the arm! she squealed. I’m so sorry!

I’m not sure why I reacted so desperately, violently, frantically, to what was only a relatively minimal level of pain, though it did trigger an avalanche of pains that still haven’t gone away. It was the violation perhaps? The shock of being targeted by someone I trusted (and trust still) at my most vulnerable physical point? A memory trigger, a reminder that I am not safe, not anywhere, not in the company of anyone? If I can’t trust my own body, and if I can’t trust those who love me, who then is left to trust? I felt tender and vulnerable for the rest of the day, near tears and in want of kindness, and despised myself for it. Despised my body for being vulnerable at all.

*In the face of pain, there are no heroes. – George Orwell, 1984.

the dementor and the valkyrie

0001 I don’t think I would be doing this autoethnography for my PhD if it weren’t for one of the types of pain I experience that I have called the dementor. The dementor attacks the left side of my body, just under the top of my arm and around to the back of the ribcage a little. In terms of sheer volume of pain he is often midrange, (though at his worst he is the very worst of all), but he is also  a deep bass note that can sometimes seem to echo from the depths of hell itself. The dementor scares me. He engenders a feeling of hopelessness and loss, and I can go a week, sometimes two, where I forget that he ever existed, but eventually he will return, creeping back out from his cavernous pit to tell me that I am forsaken, that I am alone.

k;j;ljThe valkyrie, she is a more recent companion. Sharper than the dementor, more claw-like, agile, and twisting; a coloratura soprano. She is found in the same spot on my body, only on the right-hand side, and can reach higher, further, and with greater fire. Where the dementor is despair, the valkyrie is subjection; she reminds me that the choice to one day set me free to rest in the halls of Valhalla, or eternally condemn me to the battlefield of Folkvangr, is hers alone.  She is not evil, but she is immovable, would never yield her power to something as small and as mortal as me. To plunge the sword or to remove it, she counts both acts the same.

I can live with all the other myriad pests; sharp-toothed gremlins, malicious fairies, the odd clumsy rock troll. Troublesome, all of them, but easier to pay no mind. At the very least, an offering here, or a sacrifice there, is enough to keep their worst at bay. They are ordinary troubles, commonplace pains.

But the dementor and the valkyrie? I would not care to spend a lifetime wary of their company. I would not care for that at all.

down the rabbit hole

SONY DSCI have developed a very unhelpful habit lately of 8th guessing myself in everything.  8th guessing is like 2nd guessing, only cubed. I have so many torn pictures, deleted photos, unpublished blog posts, frogged pieces of knitting, trashed diaries, half-finished journals, it’s ridiculous. I’m a bit embarrassed and a lot fed up: insecurity is so attractive in a personality.

There is a Wittgenstein quote (I don’t really understand Wittgenstein, I’m pretty sure it’s not actually possible) that talks about nonsense; actually there’s a few. He seemed quite pro nonsense and all round general silliness. The quote reads: Don’t for heaven’s sake, be afraid of talking nonsense! But you must pay attention to your nonsense.” 

david shrigley
David Shrigley

I think I’ve been afraid of talking nonsense, but in a very specific sense. This Ph.D. is all about me, and what if I’m just … not very interesting? Superficial, pretentious, glib, half-baked, trifling? I question that everything I say (write/make/draw) in terms of data for a PhD just isn’t fit for purpose. Autoethnographic stage fright, I guess, and the only thing to do with stage fright is to face it down and carry on (shot of whisky optional). So, I will just start to talk (write/make/draw), and leave it to future self to have the critical ability to pay attention to the nonsense.

Or, what David Shrigley said…

teabag collage

I’ve been painting on tea bags. I have no idea why, I just saw someone else had done it, gave it a try, and found that there’s something about the utilitarian ephemeral nature of the paper that very much appeals. There is a lovely randomness in the way that the tea stains the bags, and the weave is so loose that watercolour wicks beautifully, also leaving interesting, unpredictable, splodges of colour. It’s technically undemanding and very quick, and gives me something of the childlike delight I used to have when I was painting on the big (little!) easels they had in the art corner of my kindergarten. I’m pretty sure I really enjoyed being 4.

making collage

The pain has eased enough these days that I can do more than just draw things. I’ve been making a kind of visual commonplace book, a lace wrap, and a crochet necklace. All of these have a very specific purpose, a reason for their making, each one a thread that is beginning to darn over the holes of broken expectations, longing, and possibility that the recurrence of brachial neuritis (a.k.a ‘the bastard’*) brought with it. The book deserves its own blog post; the wrap is to guard myself against the beginning of next winter, because the last two winters having been spent in unbearable neuropathic pain; the necklace is a statement to myself to remember who I am and what I like. Not so much the necklace itself, which is meh, but the colours in the necklace. I love green, in all its earthy deep seductive variations and, just to be a little esoteric for a minute, to me green is the colour of yugen**, the colour of that emotion we feel when the incredibly wonderfully beautifully unspeakably amazing fact of life’s existence whacks us upside the head into stupified awe.

(I tried to think of an English equivalent for yugen, because cultural appropriation, but drew an absolute blank. It can be a prosaic language sometimes, English, all knees and elbows.)

The memory of that kind of wonder gives me perspective (who gives a damn if I am ridiculous and small and don’t even have a head when there are such things as mountains! and blades of grass! and a billion cubic kilometres of briny salty alien ocean!) and if my necklace is a little bit shit, the psychological touchstone of that feeling most definitely isn’t.


I meant to spend this weekend reading Elaine Scarry’s book (I bought Frida’s diary also) but I have Urgent Work I have to get finished first. I’m very much looking forward to reading it when I can though, she seems to be the main philosophical theorist in the area, and a proponent of the idea that the experience of pain is not only before language, but can destroy language. I keep having a nagging feeling that I’m missing something important every time I read that kind of idea, but I don’t even have the beginnings of an inkling what that important something might be.

Well, that was useful wasn’t it? Probably it was nonsense, and probably I should pay attention to that nonsense.

Or put my laptop down and go make tea.

*Not actually. There is one kind of pain in one part of my body that is part of the brachial neuritis and definitely feels like a bastard. It is an ominous, dreadful, evil kind of pain, like a group of dementors are coming to suck out my soul, but only one variation among the many. I’ve been cataloguing them, in a rather unreliable non-taxonomic way, but that is for another day, for another blog post.

**Or green is the colour of her kind…

i want a perfect body, i want a perfect soul*

Last night I dreamt I had a searing pain in my arm, one of those nail-pinching, teeth watering kinds of searing pains. It woke me up, and stayed once I had woken. It took a few blurry minutes to understand that I wasn’t dreaming I was in pain, rather the pain had punched a wall between my consciousness and my dreams. If the bastard wants to find me, he can find me anywhere.

pain diaries

I’ve been having trouble with the visual diary, uncertain what to do, where to start, what media to use. Overthinking is not my friend, but it is a very common visitor. In the end, and out of time, I turned off the editing brain (I mean, bless you, but screw you too) threw a couple of watercolour splotches on the paper, doodled over them, then cut out some bits from a magazine and pasted them on. Mixed media collage, how I have missed you. It’s quick, it’s intuitive, and one can never be sure what is going to show up from one day to the next.

It’s a bit weird. I love it. Also, it was Halloween and I may have been listening to Radiohead a little too much…

I’m making a short note of what I was thinking/feeling/doing at the time of each entry. This one says: Trying to find words and failing. I don’t know how the pieces fit or what I believe, except suffering is not a punishment and I was born whole.

I’m not a fan of the whole ‘biographical disruption’ theory of chronic illness. I think it’s unhelpful, born of privilege (you expected a life without difficulty, without your organic body in an entropic universe falling somewhat apart?) and also not true. The repeated severe pain of brachial neuritis (we really need to find a nickname for that, it’s such an ugly pair of words) might have disrupted my expectations (see: privilege) but it hasn’t disrupted my biography. This is my biography. My nerves got frayed and it hurts. What I do about that (ignore, hide, put up with, drown myself in the sorrows thereof, and/or use as a catalyst to understand the world better) is where I write that biography, within the constrains of the possible options available to me.

So maybe I can’t escape these hell’s torments even in my dreams, but this suffering is not a punishment and I remain whole.

*Definitely too much Radiohead.


hell’s torments

pain (n.) late 13c., “punishment,” especially for a crime; also “condition one feels when hurt, opposite of pleasure,” from Old French peine “difficulty, woe, suffering, punishment, Hell’s torments”

mri 1
megan’s pretty nerve roots

I only have two of the many MRI pictures that were taken of my neck; I want to get hold of the whole series if I can, or at least copies of the two that I have in a higher resolution. Also of the bone scan I had taken to diagnose the arthritis, where all the joints in all my limbs lit up like a pretty Christmas tree. I quite like the idea of these inflammatory hot spots in my body as a series of illuminating fairy lights: flick on, flick off, flick on, flick off.

At the moment there is something of a storm of flicking on in my usually calm right foot (the left, however, is almost always a bastard). The pain is significant enough that I’m finding it hard to write just now, to concentrate enough on good words and helpful thoughts. I keep getting up and making tea, or finding some tzatziki for my crackers, hunting through my Netflix list for something distracting to watch (I’ve watched everything). Etc.

Veronica asked me to explain ‘the pain’ and I had trouble, as I have trouble describing it to my specialists, to my family, to my friends. Because 1) it’s kind of boring to talk about in mundane detail. And 2? If I say my foot is sore, it’s a bit of a shrug and a sorry about that. If I say my shoulder is aching, same. I tear tendons regularly* oops and ouch. That I feel like my finger is trapped in a vice, my elbow has a knife coming out of it, my right arm hit an electric fence, someone’s pushing the heel of their hand hard against my ribcage, my triceps, the flesh is being pinched on the underside of my upper arm so hard my teeth are watering. There’s a pin in my knee and hives on my arm, my leg, my other arm and other leg. Every single one of these, taken alone, equals oh dear, so sorry, hope you feel better soon. Also, whoop de bloody do.

Each one, by itself, is whoop de bloody do**, but up to (god knows, a dozen?) of those every day, day after day after day after day after day after day after day after day after day after day after day after day after day after day after day after day after day after day after day…? (Right now, for instance, the left foot is also starting to ache, the right knee is doing a random intermittent push-pin to the patella type of nonsense, and I’ve been typing a while so the left shoulder and elbow, and right hand are beginning to get a little louder in their opinions too – as I notice each one, I also notice that, apart from the unusually sore right foot, this all feels so disturbingly normal, usual, life as she is lived. Does everyone feel like that? Is it normal? Oh, and collar bone just flashed an intermittent hello, hi collar bone).

Not woop de do, not all of that, not every day. In a brachial neuritis flare there is nothing else to do, or be, but horrible piercing neuropathic pain that bores constantly at fever pitch every second of all the day, world without end, pass the gabapentin and fuck everything. Outside of that flare it is more like spending each day running a sort of pain obstacle course, where pins and arrows and knives might be waiting around the next corner (or might not! that’s the fun of it!) and maybe you’ll get through relatively unscathed today- an electric shock  here, a small knife hitting there, but reasonably contained and short lasting. Or maybe you won’t, maybe it will be a day like today where there is no real relief, just a constant barrage of different sorts of burning aching throbbing pinching ouch.

Those are the best words I have. That is what the pain is like. It is difficulty, woe, suffering, punishment; it is hell’s torments.

*weak tendons from benign joint hypermobility syndrome mostly, combined, I think, with the inflammation from arthritis. All my kids have BJHS too – among other wonders, Nathan can stretch his skin out like a one man freaky freak show, Eilidh’s elbow bends inwards at an angle no elbow ever should,  and both Iona’s ankle joints also point outwards at an ungodly almost 45 degree angle.

**not ripping tendons or the brachial neuritis flares, they fucken hurt.

bloody gremlins anyway

made thingsThe three blankets on the left were all made during periods of postgraduate study over the last couple of years, periods I was in significant pain for one reason or another; a ruptured ligament, the first brachial neuritis occurrence, negotiating the disturbing after-effects of the first brachial neuritis occurrence. Looking at them I can remember so much of what I was feeling, what I was doing, the stories I was listening to, and the way each meditative consoling stitch wove itself into some kind of safety net, a softer landing to an unexpected fall.

We hardly use them. There is not much need for wool blankets in Auckland, not even in winter, so rather than cover beds they hang over the backs of chairs, hide fraying fabric, and occasionally, every now and then, just once every very little while, when someone is sad or unwell, the closest blanket will be pulled down from its resting place and enlisted as sentinel nurse to keep said patient a little warmer, a bit more comfortable. Mum-made blankets are sometimes infused with a little bit of that kind of magic.

Mums are also good for driving you places. I spent two hours straight in my sexy mini-van traipsing all over Auckland yesterday, an hour the day before that. I avoid it where possible, because pain, but Warren is in Denmark and these commitments were very really not avoidable. Predictably, the pain gremlins have not been kind to this parental generosity, throwing their burny stabby little darts at me as hard and often as they can all day. Some darts fall straight out, others hook right into the flesh and poke at me for hours. There’s one that’s been hanging off the underside of my upper arm since lunch-time, the fucker.

An hour (or less) into this kind of a day and all I wanted to do is Make Something to take my mind of it. Making things always has that quality to me, it’s why I spent half my Master’s thesis crocheting granny squares. I think it is my version of pulling a mum-made blanket off the back of an armchair to wrap myself in when I need some comfort. But first I would have to clear all the mess off the desk and find the right materials, and …

… sigh. To quote my dear, and actually very persistent, middle child, too hard, give up. I stayed in bed with my smarty smart phone instead. I looked through a Pinterest board of mine, the one where I put ideas of some things I might want to make in some mythical spare-time someday, a monostrosity of a gargantuan thing that had reached over 500 different possible projects. Yeah. That’s so not happening. I spent the next two hours culling out ideas I actually never would make, ideas that would now be physically hard to make, ideas where I fell for a pretty picture but there was really nothing of substance behind that pretty picture, and far too many WTF ideas that had me despairing over past-self and her absolute lack of any kind of modicum of good taste. I eventually reduced that list to just 24 projects, each one with a specific reason to be there, a specific place in my house or wardrobe where I would very much like it to be, please and thank you.

I thought of Julia when I was looking through so many screeds of ideas (I’m so sorry you died) and of how her cancer diagnosis became a catalyst to creating a sense of self she was proud of, how the temporal fragility that diagnosis brought with it became a strong motivator to break out of the confines of an ill-fitting persona.  I thought of how she had done much the same thing, metaphorically, to her life, reduced it to the people and places and haircuts that she most loved and needed, and in that reduction opened herself up to living so much larger, louder, more abundantly-er.

Nothing so dramatic here: this pain is, well, a pain, but it’s not going to kill me, or even maim me particularly. It’s more like a worn circuit in one (albeit significantly large and  kinesthetically central) part of my body, where the damaged wires connect sometimes, and sometimes they don’t, and you can never tell what time will be which, or for how long, or even where, because there are so many downstream connections dependent on the damaged buggers.

It is also psychologically isolating and socially disconnecting; it can even disconnect me from myself.  The reasons why and how are complicated and multifaceted, and let’s just take it as read for now that I find this to be true. I might even call it, reserving the right to be completely mistaken, my central defining experience of this neuritic pain.

Which brings us back, again, again, to making things. The idea I had of crowd sourcing materials for the creative aspects of the doctorate was a way to counteract that isolation, already pronounced with the autoethnographic methodology. But I’ve been thinking about it, and thinking how disconnection and isolation are so central to my experience (currently – it’s such an uncertain, moving-target kind of disease that I hesitate in making any kind of definitive statement about anything), that I think I was wrong to force connection where there is none. I think the isolation is really important to understand and explore and come to terms with when trying to understanding pain as a phenomenon, and I think I should embrace it theoretically, methodologically, creatively. As with the pain itself, if I have to live it, I might as well try to understand it.

I looked at those 24 projects on my Pinterest board, I looked at all the blankets I have made, and I thought they told a little bit of a story of a woman who finds solace in her pain and isolation through creating objects that bring both her and other people some kind of pleasure or utility. A woman who is not always at home in her own gremlin-stabbed body, who is trying, instead, to find more of that home in her surroundings. A woman who cannot articulate her pain experience who instead articulates her longing, who hopes that, perhaps, in accepting her current isolation, in reducing possibility to the things she most wants to do, make, understand, she might open herself up to living so much larger, louder, and more abundantly-er too.

That’s a more honest project, data set, call it what you will. It’s what I already have done as a response to pain, what I am doing, and what I would otherwise quietly continue to do. I.e. if I’m already going to make them, I might as well make use of them.

PS – I’m going to wait until I’ve been at this project for longer before deciding on a final creative project to bring all the elements together, the above is more of a data set for interpretation – I’ll blog what I make and why I made it, as I go. I think I have been trying to map the creative landscape in far too much detail for so early on in a project.

I mention this because you would be forgiven for wondering, my dear imaginary reader, what happened to the portraits, to the zines, to the graphic novels, to the animation, to any semblance of creative continuity. What happened, and where you will find the continuity, is that they became bricks on the path that brought me here. I am completely convinced that all this confusing mucking about is a vital part of the process. (Either that, or I’m just thick and take longer to get to where everyone else would have started from; don’t answer that). It’s unsettling to spend this kind of time in the chaos of creative research design. Unsettling, rewarding, kind of fun, and an excellent way to construct a path from the known to what has not been imagined. (Um, yes, I absolutely did just quote my very own actual self). I could march through my doctorate on the original planned script and without detours, and it would likely be good work with useful contributions, but what it wouldn’t be is reflective of me, nor would it be as uniquely appropriate to the particular research I am doing as I might wish.

Let me put it another way; creating something new requires doing something different, and what motivates me as a student, as a researcher, as an artist, as a Megan, is creating something new.


an autoethnography of meaning and pain

For once my silence here is not a sign of anything being wrong or lack of work behind the scenes; on the contrary I have read and gathered so many research articles and books in order to write a new proposal that it became clear I would soon have to just stop and get something down or I would have amassed enough time, ideas and resources to write the PhD itself.

So, let’s see if we have enough to build a doctorate upon, and let’s begin with my favourite archaic word:

merry-go-sorry (n).

A tale that evokes joy and sadness simultaneously.

I took my son to the doctor’s recently; nothing serious, an ingrown toenail turned septic and in need of an antibiotic. I try not to overuse such things, annihilation of mankind looming from growing bacterial resistance and all, but his toe was twice the size it should be and difficult to fit into a shoe, so needs must.

During the inevitable wait before we could be seen, we found an article about a series of archaic words that some archaic word researcher wanted to resurrect. They were brilliant. Betrump! Slug-a-bed! Peacockize! When I came across merry-go-sorry and discovered what it meant, I knew I had found a central organising idea to build my research around. Because I would like to, as a hastily scrawled note in my composition book attests, challenge the traditional binary of what is normal and what is pathological, particularly with reference to the embodied experience of pain.

I can bear any pain, as long as it has meaning.

– Haruki Murakami, 1Q84

Here’s a fun fact: the meaning people ascribe to the experience of physical pain is not a well researched phenomenon. The biological processes behind it, sure, researched up the wazoo. Pain causing illnesses, like arthritis, cancer, fibromyalgia, and the depression, anxiety, social isolation, occupational challenges that are commonly associated with these illnesses are also a well-discussed thing. But the meaning of pain in and of itself? Not really.

And it is hard to give it a meaning beyond ‘ow’, ‘bloody hell’, or ‘fuck fuck fuck’, when you are in the moment. As Jennifer Esposito’s brilliantly titled article would have it, “Pain is a social construction until it hurts…”  She also goes on to say that “bodies matter and the meanings of bodies are always contextual, but in pain the body can be one’s entire experience.”  Perhaps this is the difficulty, the reason our knowledge of meaning and pain is so meagre, because our experience of meaning when in pain is meagre too. As a character in The Handmaid’s Tale says: “But who can remember pain, once it’s over? All that remains of it is a shadow, not in the mind even, in the flesh.”

But Svenaeus writes that physical pain is both an experience of bodily suffering and emotional suffering. His argument is that pain is an experience of being acted upon, whatever the root cause of the pain might be, and it is that sense of being acted upon, a kind of physical violation, that brings the emotional suffering. And when the pain is chronic, the pointlessness of the violation, the lack of meaning behind it, makes the world, and our bodies themselves, a more difficult place in which to be. To paraphrase: chronic pain sufferers are never quite at home in their own skin.

However, if Brandon is correct that the body is personal and, as such, is an interactive part of our concept of ‘self’, then there needs must be some kind of meaning ascribed to our experience of pain, even if that meaning is something we remain largely oblivious to. Or else the absence of meaning could, I suppose, contribute to a destabilising of our sense of self ? In short, and to sum up a lot of overwhelming theories and thinkings, there is much work to be done here and I am your woman to do it.

Let everything happen to you
Beauty and terror
Just keep going

― Rainer Maria Rilke

You’ll have to take it on faith for a minute that this quote has something useful to do with autoethnography. Or else I could just tell you? I’ll just tell you. What it reminds me of is Dashper’s idea that a good autoethnography is not ‘lazy’ research, but takes a considerable amount of reflective mental work, and Frambach’s inference that autoethnography has more to do with being vulnerable than being self-absorbed. Which is important, the vulnerability I mean, because it suggests the possibility that investigating something as complex and personal and disempowering as chronic pain could be more robustly prodded and poked at when that vulnerability also comes from a position of power. I like Panszcyk’s statement that “the same vulnerable body can also be the body of power”, where power means, in this instance, the ability of autoethnography to claim the space to construct one’s own ‘self’, to take the storyteller’s position. Think Frida Kahlo’s The Broken Column, for instance. In this way, the very subjectivity of pain becomes a strength, and will allow both time and depth enough to develop possible theory in this underdeveloped theoretical space.

I think the kind of pain I experience is also a potential strength for an autoethnographical methodology. It’s an unusual presentation of an unusual disease – a recurrence of brachial neuritis is the official diagnosis. It’s rare for it to occur, rarer to recur, even more rare for it to affect both sides of the body, and is diagnosed only half as often in women as in men. I’m one in a million! No-one knows the etiology (its thought to be autoimmune but not entirely?) and prognosis is so varied that there is no certainty about what the future holds. Hopefully the nerves will slowly heal over the next few years and I will carry on mostly as I always was, but the more it recurs the more likely that at least some nerve damage is permanent. I’m through the worst of the latest recurrence (we are on incident #3) so am not currently in excruciating kill-me-now type pain all of the time, hallelujah, but still in various amounts of pain at various stages of the day. Every day. It can be sharp and fierce, or dull and insistent; burning, aching, tingling, needling. There is also, of course, the potential for contrasting this kind of neuropathic pain with the arthritic pain I am also long acquainted with, and as I still have urticarial vasculitis, and as one might throw the intense itching that comes with that into the vast realm of pain experience if one were so inclined, then we have a veritable smorgasboard of pain experience to ponder.

On a personal level, eff that. But as a researcher, erm … cool! Because the rarity doesn’t make it necessarily irrelevant to the common experience, but the variety and intensity provides an opportunity, if done well, to be an interesting exemplar. As Ms Sally Denshire would have it, autoethnography can be a “vehicle for talking to each other”, or to quote Carl Rogers, and I probably shouldn’t, What is most personal is most universal.”  Where there is honesty without self-indulgence, I think that can be true, and I think it’s the principle behind the deep resonance we find through all ages in the best examples of all kinds of art. Perhaps when we stand in something like the Sistine Chapel, watch Adrian Lester perform Hamlet, or experience the Palmerston North Boy’s High School students farewell to a beloved teacher, amongst a very few examples of an eon’s worth of creative brilliance, we read something different into it than the person standing beside us, whose understanding is different again from the person standing beside them. The difference is not the point here, the resonance is: I think of it as a powerful echo that reflects back to us some aspect of who and what we are based in our shared and common humanity. That is, an important source of knowledge.

Because you knew the conversation was going to turn to art at some point, didn’t you?

What do you think an artist is? …he is a political being, constantly aware of the heart breaking, passionate, or delightful things that happen in the world, shaping himself completely in their image. Painting is not done to decorate apartments. It is an instrument of war.

― Pablo Picasso

A bit dramatic, our Pablo, and something of a misogynist prick, but undeniably genius. I used this quotation of his for two reasons; the idea that art is political (isn’t everything?) and that it can be an instrument of war. Figuratively speaking. I want to use the artistic imagination in this particular research  project to quite purposefully cross and extend academic boundaries, to externalise experience, to reflect the interconnection of self and body in the interconnection between artwork and onlooker. I would like to introduce an element of humour, as previously mentioned, some merry to the sorry, which seems to me to also be a potentially useful method in which to oppose what I feel can be the false dichotomy between health and illness, pain and joy, loss and possibility. So … not so much war as a gentle challenge in one small research project in one small university in one small corner of the world. Still. A gentle challenge worth the making.

Graphic memoir is a possible vehicle for the kind of interplay between these ideas that could be useful for my stated purposes. It has a well established place in medical and literature research, with a small showing in the social sciences, and there are even actual real life examples of actual real life people who have written one as part of a PhD project.  Pedri calls it a “reflector narrative”, and states that the combination of both drawing and writing obscures and confuses the distinction between thinking and seeing, which, in turn, impacts a viewer’s emotional investment. Sundaram suggests the genre by nature allows the presentation of multiple selves, supports a refusal for “linear progression from diagnosis to cure”. And those kind of linear narratives … they’re just not what this research is about. This pain I live with is messy and uncertain and part of daily mundane life; also peculiar, exceptional, unexpected, weird. Cyclical perhaps, but definitely not linear.

I’ve read a few graphic memoirs by now, none so moving as the first, and while I agree with the argument that the visual/textual interplay in this kind of literature can do all of those above stated things, after a while something fell flat. I began to find them, forgive me, a little boring.  The main difficulty seemed to me that they are just too focussed on the narrated self, in a way a straight memoir can’t be, and I found that a little repetitive, and more importantly, disconnecting. It left no way in for me as a reader to connect with the story, a problem I wrestled with in making the collages for the Master’s thesis. I was being told what an experience was, not invited to imagine myself in that experience. There were exceptions, but it is hard to do graphic memoir well in this sense, I think. To be fair, I think memoir in general is hard to do well.

The other difficulty for me was a lack of texture and colour and depth in the visuals. The two dimensions of comics work well in a strip format, but I found them monotonous in a book. Especially in book after book. That’s a personal response and not a general indictment, but it’s a personal project, so, yeah. But there is still so much good in the idea, and it is still true that drawing is one of the few things that doesn’t trigger more pain (thank you, drawing), so I was reluctant to ditch the idea entirely and finally came up with the best idea in the whole universe – cut-out animation! I’ll draw a film!

(Like this, sort of, but probably less clever, more collage-y, and with a lot more words).

I think that a cut-out animation has all the same theoretical and methodological strengths attributed to graphic memoir, but with motion. And motion is both visually dynamic and most definitely central to my experience of pain.

Also, I’ve always wanted to put an animated video on YouTube…

Every person is defined by the communities she belongs to.

– Orson Scott Card

Though I remain a bit isolated by current circumstances, i.e. driving places still kills me dead, I have been keen to find a way to connect the research to the wider community without having to kill myself dead. There is always the context of past research, of art and literature and all those kinds of cultural and historical connections that I will need to make and discuss. But I mean something more personal than this too. The online world is a natural habitat for loners and recluses and me, and no, I’m not going to trawl blogs again. But. I do know a lot of clever women through the internet, artists and craftspeople and the odd anaesthetic nurse. I thought it would be a good idea if I could elicit material from whomever might want to contribute materials to the project, something along the idea of them sending me a small piece of fabric or magazine page or whatever they might fancy as useful to help create the world of the animated film. Nothing big, nothing that won’t fit into a letter sized envelope, or even a digital file that can be whizzed through the ether, preferably something worn or broken, hopefully colourful, and definitely meaningful in some way to the sender in terms of their understanding of my research. Jennifer Bartlett says that the body has (is?) an unstable materiality, and I want to reflect and investigate that idea somewhat in the animated artwork in part through the precarious nature of crowd-sourced materials. Crowd sourced materiality – that’s a thing, right?

I am planning to use Instagram and Facebook to  elicit this help because it’s where I still maintain those connections, and I am also going to post in both those places at least some of the visual diary I will be keeping in order to examine and analyse my own experiences in more depth (said diary starting next week, um, yep definitely). I found during the Master’s research that this blog was too removed for some of the more immediate and emotive reactions I had to the research, too edited and editable, and I censor myself a great deal more when I write than when I draw. I think that a daily visual log will not only be an excellent source material in terms of capturing my experience with more spontaneity and emotional honesty, and thus be useful data to analyse, it will help communicate the heart of the research itself to the people who might want to contribute. This will in turn, one hopes, ensure their contributions are not random but part of an ongoing conversation between us all around pain and meaning.

An assemblage of people offering an assemblage of materials to create an assemblage art project, embracing and extending the idea that assemblage/bricolage/collage can be a possible “ontology of the social“. Some days I am just too clever for my own undies.

And some days I am not clever at all. Okay, most days. Okay, bewilderment is my resting state. But that’s not a problem because bewilderment has its roots in the word wilderness, and the wilderness is uninhabited, and a doctorate is meant to wander to uncharted places, and you know it’s time to quit writing when you start justifying rambling fancies through rambling etymologies.

I have woven a parachute out of everything broken.

-William Stafford

I’m not sad anymore. I don’t feel defeated and like there is no room for me in the academic landscape, indeed I can see it could really use this kind of research, even if it doesn’t know it. I am not happy for the stupid neuropathic chronic bloody pain, but I am excited for the opportunity to make use of it in a complex, messy, colourful and theoretically imaginative doctorate. With moving pictures! Materiality, health, embodiment, art, craftsmanship, mythology, identity, artefacts, shadows; all my favourite things are still here, with so much more to discover besides.

I am kid-at-christmas level excited for that discovery.