i found my notebook


You could probably tell that already by the way the angels trumpeted their joy down from heaven. I was about to admit defeat and resign myself to recreating all those notes from all those books…

That’s Ernie’s ‘don’t care’ face. To be fair, he doesn’t care about anything other than if he is getting a walk, when his food will appear, if that paper bag you’re holding is a toy for him to tear apart, and please don’t take his goddamn ball and throw it away from its carefully secured position again. This is apropos of nothing, I am just feeling too lazy to go and take a photo of something relevant. Also, Ernie is handsome.

Which is kind of relevant. My first lot of notes are taken from Guntar Figal’s Aesthetics as Phenomenology: The Appearance of Things. This quote really struck me: That which complements is that which allows something to be whole. The context is something like the prevalence of art being part of human culture in all its different variations from before we even developed language means we can say it is an activity that complements humanity, and as such has allowed us in various ways to be whole. I’m simplifying, you get the gist.

Some more quotes I pulled out to think about in terms of the PhD:

What speaks for art, therefore, is more than pleasure. One should rather speak of delight. Even the most serious of artworks, in all they demand of their viewers, can exhilarate in such a deep way that dealing with them affects one’s entire life-attunement. The experience of these works can even provide energy; one carries one’s burdens more lightly, one feels newly adequate to the demands of life, if anything because one has experienced that there is something beyond those demands.

And this:

To become involved with artworks is not to be informed of something, but to be touched in an originary way and displaced into a state of elemental openness: art provokes wonder – in all forms that wonder can take – from joy to irritation. If it is so, then art displaces one into that attitude that Aristotle described as the origin of philosophical observation. Art, like all astonishing things, is wondrous in its lack of self-evidence. With artworks, something is revealed that was not known without them. They displace one into wonder because they allow an ignorance to appear.

Bolded text mine. I wrote underneath this that it is a special kind of ignorance, that art is insight, though exactly what I meant by that is now anyone’s guess. Note to self, write longer notes. Still, I remain taken with the idea that art displaces one into wonder because it reveals an ignorance, something that we did not know, and likely did not know that we did not know.

I wrote down a few things about play and art also – I was interested in the play aspect because that what I feel is happening right now with the visual diary, and I’m quite interested in the idea of it as a necessity to insight, not a childish self-indulgence (I may have terribly self-interested reasons to promote the former over the latter). It’s also something akin to the idea that making is thinking? I think you need both quotes to understand something of what Figal is saying, so I have put them together. Sorry for the philosophical jargon, I have found that philosophers, like lawyers, have a tendency to try to make things super clear by being obtuse.

Once play no longer simply occurs and is played as occurrence, but instead becomes art, there is a ‘turning’ that Gadamer calls the ‘transformation into structure’. Through this transformation, play gains ‘its ideality’ … What is now experienced is the ‘truth that remains’.

While a game can be played in obliviousness and without observation of others, the ‘structure’ (the object) is there to be experienced and understood.

I thought these ideas connected well to concepts in autoethnography, and am currently working my way through the book Critical Autoethnography, edited by Boylorn and Orbe. A lot of the ideas ares kind of ordinary self-evident background; autoethnography as a cultural analysis through personal narrative, for instance, and as both method and product that speaks from, for, and to the margins.

Personal note: I was super uncomfortable with the idea of speaking either from, for, or to the margins. I’m too privileged, have too many options and resources, to feel in any way sidelined to a margin. Perhaps a career margin, but otherwise, I’m not sure where I would place chronic neuropathic pain on the margin/border/liminal spectrum. I’ll let you know when, if, I ever figure it out.

(I keep differentiating between inflammatory or mechanical pain and neuropathic pain because I find them qualitatively very different beasties and would take the former two options a thousand times over the latter. I need to explore why that is more, I think. Something to do with the shifting, ghostly, taunting and constantly constant nature of neuropathic pain. It feels separate from me somehow, visited on me, as opposed to the clearly corporeal nature of inflammatory and mechanical pain.)

Scholars have used multiple stand points to situate their stories and lives, to call out positions of privilege and expose moments of vulnerability.

Again, bolded text mine. It was the and in that sentence that caught my interest, gave me perhaps one of Figal’s moments of wonder as revealing an ignorance. Pain, as noted, makes you vulnerable, (indeed the word vulnerable itself implies a wounding), and centering an entire PhD around your own pain will most certainly engender more than a few moments of vulnerability. I’m not thrilled about that, but I realised when I read the above sentence in Boylorn and Orbe’s introduction, that I also do cherish it. I tried to think of a different word than cherish, because weird?!, but it best describes what I mean, in that I both appreciate the idea and am willing and able to defend it.

I think Figal was also describing a certain vulnerability when he spoke of those who experience art as being touched in an originary way and displaced into a state of elemental openness. What is allowing oneself to be touched, what is any kind of openness, if not also vulnerability? Perhaps you can’t experience the sensory and motor damage of repeated bouts of brachial neuritis for yourself (and lord may you never), but also, perhaps, if I am open enough, honest enough, skilled enough in developing play into structure, what is left may in some way provoke a connection, an experience, yes, perhaps even a delight. And through that delight, an ignorance exposed and an understanding formed; a complement to our respective experiences of life.

And that which complements is that which allows something to be whole.

not joking about the arm


I gave up and started taking the nortriptyline again today. Hopefully that will be enough to help without needing to add the gabapentin too, but even so. Expect me to make no sense and talk complete garbage for the forseeable future. I’m not keen on being thick-head zombie brain again, but the continuous pain is becoming literally tortuous. I need a break.

If it doesn’t help, I might chop my left arm off entirely.

hello, i’ve been avoiding you

I was at a wedding and visiting my sister, and also I don’t know how many times you want to hear that today things are hurting, and now today not so much. Not a great deal, I should imagine. Let us all look at The Current State of My Diary instead…

collage diary

It’s very colourful and very messy and very informal. I keep leaking watercolour from one page through to the next three pages because it’s just an exercise book after all, even if it is a fancy japanese paper exercise book. It’s not thrilled with being soaked in a bunch of water, but thanks to Frida I don’t much care and the resultant splodges are all part of the fun of the thing.

Here’s a quick flip-through of the rest…

lol rabbit

And let us not forget my favourite bunny woman. To quote the poet Mary Oliver, You must not ever stop being whimsical. And you must not, ever, give anyone else the responsibility for your life. I think this portrait is something about that, but I’ve lost my words. I have found, all year, that every time I try to explain, to write, to talk, I end up just sitting there empty and confused, feeling I have something to say and not knowing what that something is. I’ve started reading as many novels as I can get my hands on, as quickly as my eyes will carry me (7 in the last week*) as an antidote to this dire situation. I can feel it starting to work, ideas forming, connections being made. I was thinking this morning as I took my shower, that it amazes me how little attention psychology pays to fiction (it seems to me that storytelling has been a fundamental aspect of human behaviour since before words began), and when it does it is so often stripped of its frustrating marvelous disturbing complexity. Well, anyway. We’ve had this conversation before. Perhaps trying to understand anything necessities something of a simplifying and stripping down, and perhaps I am on the wrong side of the creative/research divide. We’ve had this conversation before too.

(PS: I hate showers, the way I have to lift my clothes over my head getting dressed and undressed tires the remaining working motor neurons in my shoulder out and sets off the ache of day-long muscle fatigue, pathetic but true. I am becoming ashamed of and grief stricken over my body, which doesn’t feel like mine at all. Everyday living is starting to wear me out, and I am just so very tired. That’s what I thought as I sat at my nieces wedding and had little to say and equally little energy with which to say it – I’m just so very tired. I am not sure how many more years I can keep doing this, in the hope things will improve. In my fatigue my world has shrunk far smaller than it should, and I have enough energy to want to be bothered by that, but not enough to actually be bothered by it. I suspect this falls into the category of things you should never say out loud.)

I had some very scholarly and useful autoethnographic type things to write about all of this, but I’ve lost the book I was using to take notes of all that kind of thing. I’ll find it again. But first, I will read another book, or take another nap, or cut out another bunny. I keep waiting for things to get better, but overall it has not. And here I am, still talking about the ups and downs of pain anyway.

*I started the project off the back of a Stephen King quote (I’m not a fan of horror fiction, but he has written an excellent book about writing). He said, If you don’t have the time to read, you don’t have the time or the tools to write. Simple as that.

My Name is Lucy Barton, Elizabeth Strout. An interesting novel on how the pains we cling to as children, hold on to through adulthood, are fundamental to our identity, to our way of being in the world. A favourite quote: when iI see others walking with confidence down the sidewalk as though they are completely free from terror, I realise I don’t know how others are. So much of life seems speculation.

The Return, Hisham Matar. Creative non-fiction. Hisham’s father was a senior political figure in Libya before Gaddafi’s coup, and afterward lived in exile with the expectation he would be imprisoned and/or killed. He was eventually taken from his home in Egypt and sent to prison in Libya, along with many of his male relatives. It is a book very much about exile, from home as a place and as people, and is also very much about the men of the family as the ones who are in exile, imprisoned. Hisham never finds out what happened to his father (almost certainly killed in prison, but no proof is found), and hence neither do we, and it is that longing for certainty without the possibility of achieving it that permeates the book. The horrors are not romanticised, but I think the relationships are. Understandable in a man who has spent his adult life in search of a ghost, perhaps. My favourite quote from this book is from poetry written by Hisham’s father when he was a young man: Had the pain not been so precise/I would have asked/To which of my sorrows should I yield?

Station Eleven, Emily St. John Mandel. I loved this book, I will buy myself a copy and go read over it every now and then to appreciate the nuance and the layers even more. It’s an apocalyptic novel, but from various points in time, and various points of view. It too is about relationships and identity – I think all novels are?  The title is taken from a graphic novel that one of the main protaganists wrote pre-apocalypse (she dies in the days after), which two of the survivors, unbeknownst to each other, have used in their vastly different ways as guides to living in this new and devastated world. It’s too rich and complex to condense into one short paragraph, but I think this quote used throughout the book sums it all up best: survival is insufficient.

The Sun Also Rises, Ernest Hemingway. I have read most of Hemingway’s short fiction, but never managed to finish one of his novels. The speed and style of 1920’s fiction can wear my social media corrupted brain right down. Hemingway was making a comment on the resilience and morals of the so-called “lost generation” of post WWI men and women within the excesses and social change of 1920’s society. He did not think them lost or immoral, just men and women learning to live in a world changed from the one they were born into. As he writes: I did not care what it was all about. All I wanted to know was how to live in it. Maybe if you found out how to live in it you learned from that what is was all about.

All the Ugly and Wonderful Things, Bryn Greenwood. I must agree with the reviewer who said that the author foreclosed on the ethical dilemma and moral ambiguity at the heart of the book (and those who call it a romance, no, it is much more about loss than it is about love), and forces the reader into one oversimplified path she wants them to walk. Nevertheless, it is an interesting point made, that the relationships and morals of those in power often define, to their detriment, the lives of those without that power. I do wish the implications of having a thirteen year old girl as sexual being had been explored further, though. A quote from said thirteen year old: Sometimes waiting and being disappointed was good, to remind me he didn’t belong to me. Nothing belonged to me.

The Enchanted, Rene Denfield. Again, a little heavy handed in its point of view, and again an interesting point of view, affirming both the monstrousness and humanity of men on death row. Three prisoners are executed in the book, one who does not want to die, one who is desperate to die, and one who finds enchantment in living and justice in death. Rene was a death row investigator, and her compassion for those society discards in general is obvious, without denying the gravity of their crimes (the harshness of the prison system in general is part of the novel’s core). The main character is also a death row investigator, whose job it is to find information that will commute death sentence to life sentence, which in this case is complicated by the certainty of her client that he wants to die. But she is clear on her role; she does not save anyone. She only stops executions.

My favourite quote is from the narrator, a mute book-loving prisoner with both an abusive past and has committed a crime too horrific for anyone to talk much about, the one who finds both enchantment in his life and justice in his death: The books brought brilliance to my life, and they brought an understanding: Life is a story. Everything that has happened and will happen to me is all part of the story of this enchanted place – all the dreams and visions and understandings that come to me in my dungeon cell. The books helped me see the truth is not in the touch of the stone but in what the stone tells you.

The Natural Way of Things, Charlotte Wood. If The Enchanted was about the humanity in the monster, The Natural Way of Things is about the monster in humanity. Again, it makes its point vividly and heavy handedly, but in this case it is purposeful, more of an allegory in the way that Lord of the Flies is an allegory. Feminist horror, I heard one reviewer describe it, though I think that is minimising what the book was trying to say, which I think is mostly this, a protest against women as ‘other’ to men (that is, men are people, women are women): In the days to come she will learn what she is, what they all are. That they are the minister’s-little-travel-tramp and that-Skype-slut and the yuck-ugly-dog from the cruise ship; they are pig-on-a-spit and big-red-box, moll-number-twelve and bogan-gold-digger-gangbang-slut. They are what happens when you don’t keep your fucking fat slag’s mouth shut.


good news, better news

Pain has suddenly and drastically improved, has become more like a fatigued muscle ache most of the time, with the occasional stabby help-i’m-going-to-die feeling that stops me in my tracks with all the swears. The Armageddon Doom phase doesn’t last long at all, so all good.

Better news is that despite the copious moaning and hand-wringing that has been indulged in of late, I’m also getting really stubborn about the whole thing (you call that pain? ‘Tis but a scratch!)It’s all a little Monty Python Black Knight-ish, pointless and ridiculous, and hilarious.

Not sure who it is I’m fighting, but.

postcards from the armchair

drawing collage 2

The more pain I am in, the more I draw; I’ve been drawing a lot. You know that thing when you say at least things aren’t any worse, and then they immediately get worse? Yeah. That. Sleeping is getting even harder, doing things is getting harder. Full disclosure, it actually hurts less than it has been if I sit down on a nice soft armchair. It’s just that life doesn’t much consist of sitting down on nice soft armchairs.

(It’s weird cataloguing the pain. I don’t enjoy doing it, or think it particularly interesting, but I make myself write it down because I’ll know I’ll forget and say, pah, it was never really that bad if I don’t write down the days (weeks) when it really was.)

I seem to be drawing faces a lot. Lord knows why, it’s my weakest drawing link, especially noses. Drawing noses is just drawing shadows and it weirds me out. Also hands. I’m rubbish at hands. I think the faces have something to do with personas, with how they might be purposefully adopted and used in illnesses (though I don’t equate being in pain with being ill, hmmm…) to represent an aspect of the whole self rather than always presenting with the broken self. Drag Queens take the concept to an extreme, but it’s the same idea. Not hiding yourself, not passing for well, but revealing an aspect of yourself that the illness perhaps hides. That’s too simplistic, but it’s Friday afternoon, and also I haven’t really thought it through. Still. I think all the faces have been me pondering on all that a little.

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.