My goal is to allow readers their own experience of whatever discovery I have made, so that it feels new to them, but also familiar, in that it is a piece with their own experience. It is a form of serious play.
― Kathleen Norris, The Quotidian Mysteries: Laundry, Liturgy and Women’s Work
The photos and the quote aren’t particularly related, except that I read a while ago how the personal is deemed feminine and non-serious, and this is one of the reasons I like to keep my focus on the personal, on the ‘feminine’ (not quite sure what that latter actually means though, truthfully). It is also why methodologies like autoethnography have a bad reputation, especially the kind that focus more on individual experience than on cultural critique. I.e., my kind. I hope the work I do will challenge that, but more importantly I hope that I will be able to give readers of the work their own experience of whatever discovery I have made.
I’m writing this down today, because I forget. I get caught up in worrying too much about how well done a thing is, and forget to focus on what kind of experience it has to offer.
Just popping in while some assignments print: hello.
I love this work by – oh bugger, I forgot to save the name again and can’t remember it off the top of my head (I clearly thought I would, I clearly am an idiot). I love the contradictions in this piece, the softness and vulnerability, the brutality, the suggestion of human existence as wonderous and mortality as ordinary, the idea that we are as situated in the seasons of nature as a flower, as a bird, as a bare-leafed tree is.
Two examples of embroidered photographs to show Veronica, who had not seen these kinds of works before. Unfortunately attribution is lost in the fog of time and distance and I am not sure of the artists here. I am sure it is some very skilled needle work.
I do know this work is by Ana Barboza, my favourite artist of the genre. She uses knitting in her art also, as part of her manifesto is to ‘bring the value of manual craft back to life.’ Solidarity, sister.
It was good to see Veronica and Kerry again after such a long break. One thing I learned is that it is going to be continually uncomfortable being challenged on my work, however respectfully, when it also represents an experience that is deeply personal, literally painful, and difficult to translate. I’ve spent the last couple of days thinking through how to keep facing these kinds of conversations without hiding the bits I don’t want scrutinised (because they are often the most interesting, the most resonant), and without developing defensive prickles (because the challenges are necessary, I signed up for this thing, and no-one likes a sharp poke in the eye).
Part of it is being clear in myself what I need to justify and what I don’t. I don’t need to justify the pain itself, I don’t need to justify the methods I have used, or will use, to cope with that pain. If disparate bunches of scribbles got me through months of agonising pain, then god bless disparate bunches of scribbles.
But I do need to justify the way I present and give context to both pain and coping. If I choose to use those disparate bunches of scribbles as research data, or research artefact, and they look like a colossal waste of time outside of my own head, then I need to explain why they’re not. What they did for me. What they mean to me. How I see triumph when I look at that big fat pile of messy unintelligible nothing because what it represents is that I’m still here. 2017 was a marathon of grit and persistence and an unceasing barrage of physical torment that I will never be able to adequately explain, but god damn it and god bless it and fuck it all to hell, I am still very much here.
I bought myself a tiny garnet ring to wear on my little finger to remind me of the separation of my work and my self. It’s a trick I learned from Julia, the psychological power of a well chosen talisman. The red is for fire, a destructive, life-giving force, representing the pain I have (and yes, continue to have) gone through and also the power of the patience and persistence I developed in order to keep standing up every time that pain knocked me down. It’s small and fragile because life is small and fragile, and we all have so little time available to us. Spending that time on self-pity is not a choice I want to make. It’s also a garnet because the name comes from the Latin ‘garanatus’, meaning ‘seed-like’; this is to remind me how very much I still have to learn, how very much more room there is to grow. A seed is but the possibility of a tree, and without soil and food and a lot of time, it can only remain so.
To be proud of my self, to remember that time is short, and to remain open to input, to growth. It’s a lot for one tiny ring to handle, but she can cope. She already does.
When the sugar for the tea comes out, it has one of two meanings: I have a terrible headache, or I’m stupidly tired with too much to do.
I don’t have a headache.
I’m running late in finishing my first article and likely a little too Zen about it; I’ve made a promise to myself that I take (at least most of) the weekends off and go to bed before midnight, no matter what deadlines are looming, no matter how far behind I fall. Along with No Pneumonia and Tolerable Pain, it has somewhat put the ‘live’ back into living. Unfortunately, no-one can quite convince my brain of the before-midnight idea; it still loves the quiet and the dark and it stays happily awake chattering at me for hours. Sometimes it even has good ideas, but without getting up and taking notes, they invariably evaporate into whatever heaven good ideas go to die when nobody writes them down.
Not actually invariably. I have been struggling with the structure of this first article for months and as chatty brain was twittering away somewhere around 1am (or 2? or 3?) I noticed a pattern in the series of paragraphs it had decided it needed to dictate to me, almost like a musical structure, or a wave graph, and in that pattern an idea of a way of writing that would suit the article much better. (That’s vague, I know, but if I clarify too much then I’ll lose the urgency to get the words down; my words are temperamental like that. Are you words temperamental like that? I probably shouldn’t let them boss me around so much, but I need them more than they need me, so I try not to rock the boat.) I thanked my brain for the help, though it had already gone off on another merry tangent, this time deciding what we would say if we were teaching post-grads how to write creatively. It wasn’t doing a very good job (you have to feel the words! listen for the music!) so I left it to its own devices, rolled over, and finally went to sleep.
The buzzing of my alarm pulled me violently back into consciousness just a few hours later. I had already lost a lot of my night’s epiphany, but enough remains, I hope, to be useful. One thing that being in such pain this last year has taught me is that I am in control of precisely nothing, ever, so if more of the idea returns, more returns. If not, then that was a hella waste of a sleepless night and we’ll write on anyway. In the meantime, there is always sugar and there is always tea.
…writing must be ambitious if it is to be any good.
-Alice Mattison, The Kite and the String
I’m struggling to read as much or as in depth as quickly as I should to give enough academic context for my first article. It’s frustrating; I have plenty of material, and this bit is usually the easy part. I am not sidetracked by pain, or drugs, or lack of oxygen to the brain this time either; rather, it’s that I can’t bear the language. It’s painful. Even a little humiliating. The constant descriptions of ‘the ill person’, of ‘chronic pain sufferers’, the ‘sick role’, catastrophising, depression, disorder, the repetitive terminology of flaws and frailties, weakness and deficit, as central to experience – they are taking an increasingly thick skin to weather. I find myself throwing a book, an article, to the floor with an odd mix of boredom (they are all so similar) and disgust (borgustdom?), turning my attention instead to something a lot less tiresomely, alienatingly, bleak.
Like beetroot nymphs with tiny waists.
It is, in part I think, the dispassionate nature in which these real live human beings with real live human lives are discussed. It’s professional and expected, I know, but the tone lends itself to distance, even perhaps some level of superiority. What was it I read recently? Categorisation is itself a form of prejudice**. I think we can do better, I think we can write with both a respect for academic conventions and also for the humanity of our participants, which is to say I think it’s an ethical imperative to try. I think the difference between a piece of academic writing (any kind of writing) that connects and one that alienates is empathy and courage. I think the difference is, to quote Alice Mattison again, writing as the whole human beings we inevitably are.
I’ve decided that if I research in order to understand the world and my place in it better, then I write as an affirmation that none of us, not a single damned one, are in this thing alone. And perhaps I will never be any good at that, but I hope that I will always remain ambitious for it.
*From the poem All Mad by Ella Wheeler-Wilcox. It’s not a great poem, but I have always loved the sentiment.
**Byrne, C.J. (2012).‘Jeesis is alive! He is the King of Australia’: segregated religious instruction, child identity and exclusion. British Journal of Religious Education,34(3),317-331.Doi: 10.1080/01416200.2011.649343 . (I have been helping my youngest with a literature search for her first sociology essay and this title popped up and made me laugh my oversized undies off).
I’m back to work properly tomorrow; pneumonia finally cleared up, neurologist doesn’t want to see me again unless the neuritis has another flare (fingers crossed, never), pain is manageable, and I’m back to sleeping most of the night, most nights. It feels like Spring, or maybe that is just yesterday’s Easter egg overload speaking.
I think I should be panicked at the amount of work I need to do in the next month or two, but I’m not. It’s like these two pictures above; the amorphous floral-like blobs on the left are no-one’s idea of a good illustration, but it’s the blobs that take the time and care to put down in the right colours with a good composition. They are the hard part. Turning them into roses with a few scribbles is just the final easy few minutes.
I have the first year of my PhD blobs ready; time to get scribbling.
Sell your cleverness and buy bewilderment. – Jalaluddin Rumi
I haven’t counted how many pages of the diaries and drawings I have collected over the last year or so; it’s a lot. I sat down to paint the coloured pain and emotion spots on each page and sew them all nicely together in a japanese fold book and when I brought the sewing machine to my desk and had all the pages gathered around me, I couldn’t do it. I just couldn’t. It was a clever idea, and it made for much easier interpretation of the experience for an observer, and for me, but. That’s not how things were.
Things were chaotic, and confusing, everyday anew, and even in retrospect they remain so. If you want to understand the experience of daily severe neuritic pain, you need to understand just how much it didn’t make sense. It was a thing to get through, day by day, moment by moment, until the next day, until the next moment. In the worst of times, drawing helped me survive the pain. It didn’t give meaning to my experience so much as it reminded me that there could be, even would be, other, gentler, kinds of experiences.
I have sewn the pages together much like that. Chaotically, confusedly, in a way that only makes sense if you understand that my experience didn’t make sense. The pages are all connected by a common thread, as the experience was all connected by a common pain, but it is hard to tell the front cover from the back, if there even is a front and a back. Turning pages is clumsy and awkward, the content haphazard and untidy. You can’t see the whole thing at once, and there is no chronology, no thematic order; no order at all. It’s sewn together in such a way that you just can’t make a tidy pile out of the papers, even if you wanted to. It’s fragile and frustrating, and the temptation on picking it up and trying to sort through is to cut the thread and rearrange it into something easier to handle and hold. But to cut that thread would be to deny that pain. It’s an ugly object. It was an ugly experience.
I’m writing about the pain in the past tense, not because it is over – I still live with it, daily – but because it has lessened into something livable with. When something is livable with, then you have the mental and physical space to step back and try to understand your lived, embodied experience. Which is phase 2 of the PhD.
Kerry mentioned he still didn’t understand what my PhD was about (in macro terms I am sure he does), so let me try to explain as simply as I can.
It’s an autoethnographic triptych of art and analysis centered on the lived experience of chronic pain. That’s the ultra-broad rather-too-ambiguous macro view.
The first stage of research is the story of the chaos wrought by the disruption of a fierce recurrence of brachial neuritis, as described above. I resist easy meaning and tidy interpretation, because that is not what was experienced, and highlight this experience against the continued difficulty both psychology and medicine traditionally have in understanding and treating long-term pain.
The second stage is predicated on the idea that in order to understand my own experience of pain in greater depth, it would be helpful to understand my own body in greater depth. As much of our cultural and bio-medical mores regarding pain can be argued to have their roots in medieval Christianity, I will undertake an art project that takes its style and ideas from medieval maps, bestiarys, and anatomical illustrations, where both fact and fiction, observation and imagination, were all explicit components of building and sharing highly socially constructed knowledge. I will be drawing and annotating detailed parts of my internal physical body, fat cells and pain dragons alike, in a personal journal to both embrace and subvert the idea that pain is isolating and autoethnography navel-gazing. It is envisaged that in looking more deeply inwards, I can explain more fully outwards, placing the pain experience, personally and culturally, in a broader and more useful context.
If stage 1 is the story of chaos, of the interminable present that issevere neuritic pain, and stage 2 is a step back into the contextual history of pain in general and my body in particular, then stage 3 will be a reaching forward into a more socially connected and hopeful future. This will again be based, as stages 1&2 were, on a specific art/craft project, but it is too far away, and too much experience to go through between here and there, to know what will be most suitable. An example of the sort of thing I mean would be something like the young woman who sewed her own wardrobe to reclaim her body after sexual assault (not that specifically, just the idea of reconnection behind it). Whatever it is will likely have a strong participatory and/or publicly accessible aspect to it, and be centered around the idea of wholeness versus wellness.
That still much too vague, isn’t it? I’m resisting discussing possible theoretical threads because I don’t want to pre-judge the analysis, and I find myself reaching for things I already know to explain what I might find, specifically in regard to the Master’s thesis. Perhaps I am being too cautious. Anyway. I’ve overrun my allotted few hours of feeling okay in the day and need a nap (those few hours that I feel okay are growing longer each day, but recovery from the pneumonia remains frustratingly slow).
See you tomorrow. I may even do my hair and have a shower before then! Exciting times in my action-packed days, don’t get too jealous.
I am not sick. I am broken. But I am happy to be alive as long as I can paint.
– Frida Kahlo
I’ve come to the conclusion that anything I can think, Frida’s probably already said. And I wouldn’t equate either my pain or ability to paint as anything remotely approaching hers (mate, that chick suffered) but still. She has always said it first. I think there’s an interesting difference between sick and broken that isn’t really part of the narrative of chronic pain.
I’m not here for any particular reason, unless distracting myself because I’m falling asleep reading academic tomes is a reason. I’m still not sleeping well at night, but it’s hard to say why. Pain levels are continuing to lower, there has been only one day I would consider bad in almost the last two weeks (still daily pain, but in one way or another, isn’t that true of us all?). I’d like to say the worst is over, but past experience warns me against counting chickens…
I haven’t started the body mapping project yet, (best idea I ever had), not properly, but I did manage to sneak a few moments to get some colour and technique inspiration together. I also have borrowed, begged, or stolen (not stolen) books on bestiarys, medieval sea monsters, human anatomy, and Da Vinci’s notebooks (Me: It’s times like this that a scholarship is very useful! Iona: I can’t think of a time when a scholarship wouldn’t be useful?).
If nothing else, I’m going to come out of these three years with a kick-ass library and some colourful sketchbooks.
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.
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.
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.
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.
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.
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 …
… 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.
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.