its not about me

I have been absent for a couple of weeks as the cluster headaches have been ramping up in frequency over the last few months and I have been suffering them constantly since my last post. The pain relief to combat them has only been working sporadically and though I am working with my GP for a preventative solution, this has been unsuccessful so far.

I finally felt okay enough to focus on writing on Friday, but the attack at the two Mosques in Christchurch made doing so seem both personally pointless and societally offensive. I’ll continue working offline, but for the time being I think it more respectful to the Muslim community in general, and the families of the dead and injured in Christchurch in particular, to keep a respectful silence online, because this moment in our Nation’s history is quite simply not about me.

As-salamu alaykum.

home alone

For the first time since mid-October, all spouses and offspring have left the house concurrently and for an entire day: there’s not even a bored dog around to sigh dramatically in my general direction.

At least you’re still here. Hello. How are things going?

Lucy is my spirit animal, but napping feels so much like letting the bastards win that I rarely do it, which also means I rarely do anything at all. Hooray for me! It’s a most excellent roundabout to have chained myself to, I’m very proud.

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I wasn’t entirely joking about decorating my whole house in this fabric; I had a metre printed in a linen/cotton blend to make a few tea towels to begin with (yes, I changed the colours). I told my youngest that I thought it would be fun to sew a fifties-style Stepford-wives type dress in this material, and she said she would definitely wear a dress like that because people would think she was so sweet from a distance and only realise their mistake as they approached, which would be hilarious and also serve them right for getting too close…

I have the best kids.

I also have collected quite a lot of (far too many) me-made posters, paintings, cushion covers, tote bags, mugs, postcards, cards and notebooks over the last year. Oh, and even one pencil case filled with notebooks I have made out of recycled paper bags, yes that is a thing.

A lot of them feature my graphic gouache friends, but it’s a motley collection really, based on nothing much more than the mood of the moment (that’s Tildie on a cushion cover on the left – I don’t think I’ve introduced you to Tildie? She’s beautiful and sophisticated and way above my friendship pay-grade. I was reading Agatha Christie at the time I painted her, which may explain the bobbed hair and head scarf…). I talked with Veronica and Kerry a little on what function the faces in particular serve, and why they have become such a thing in my days. Veronica suggested they are a comfort, which is in large part very true, there is a strong element of solace and consolation involved.

But that’s not all they are. I’ve been making things since forever (I think I learned to knit at 4?) so in one sense there is nothing special in the idea that I find comfort in making things (drawing things, painting things – I think of it all as different aspects of the same impulse). What has been very different about the last year or two is that instead of giving it all away (or binning it, I have a terrible habit of just throwing them all away), I am keeping them for myself (mostly – I still get a lot of joy in giving things away, I can’t lie). What used to be more about the fun of the process, hardly to be thought of again once that process was complete, has now become about their actual physical materiality. I’m not entirely sure why, perhaps it’s a reminder that I still exist – I have a Tildie cushion, therefore I am (?).

A comment from Kerry on Friday had me reading back over the last few blog entries (I rarely re-read what I’ve written unless it’s useful for the current paper I’m writing). They were, as they have been since I finished my Master’s, a little angsty and repetitive and even somewhat grandiose, and as irritating/boring as this must be to read (Kerry never said anything of the sort, btw, that’s all me), grappling with any serious change in your circumstances is a little angsty and repetitive and grandiose. The sky has been falling and I am the scared little chicken running around and yelling about it. I also think it shows well how very confused and confusing being in significant daily pain has been, especially in the beginning. I don’t think it’s been of great use and resource as a research blog, however, and I would counsel any autoethnographist against following my example without having a much clearer plan and purpose first.

But the sky is no longer falling and I am, as I wrote on Saturday, too tired for running around yelling about it anyway. Enough of unhelpful roundabouts of any kind, I say.

Insert clunky segue to return us to the idea of materiality and making here…

I’ve made a shit-tonne load of stuff over the summer, over the year, things I have not seen or thought of as relevant to anything academic. This cardigan for example, sans sleeves because that was as far as I got before the summer heat grew too strong to make sitting with a layer of wool over my legs anything but torturous, even with the air-conditioning on full blast. I probably shouldn’t knit because osteoarthritis + wanting to keep the functional use of fine motor function in my hands through a long and prosperous old age (I had a new type of arthritis diagnosed over the summer, which makes three altogether, which also constitutes a proper arthritis collection!), but meh. Future benefit versus immediate pleasure…

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Also this art apron/dress; it has very big pockets for brushes and rags and other assorted what nots, and I had all the material printed from some doodles I made on the computer late one night (it’s not nearly as expensive and fancy as it sounds, there are a lot of companies who will print anything onto anything in short runs, and sometimes it’s even cheaper than a bought one – yay the internet!). It also has hidden transformative properties: whenever you put it on, you’re no longer a tired and useless old slouch-butt-dumb-face, you become a confident woman in her intellectual prime with useful skills and ideas to offer the world. It’s powerful magic.

Okay, I’m a dick. Still. It’s nice to think it could have powerful magic.

The point is that while a part of me is a vocal Chicken Little, the other part is consistently, persistently, making and creating material objects that are more than just decorative faces to stick on the wall. It might be nice to spend a bit of blog time taking a look at some things I’ve made recently, at least where the making has been in some way to console, to fortify, to bring me out of my tired body and back into the world.

It’ll be a change, if nothing else, and you know what they say about change – it’s definitely as good as a Lucy-approved nap.

a night in the life

The steroid injection I was given in late January is beginning to wear off – last night I didn’t get to sleep until after 2am because of shoulder pain, and I woke again before 6am with an exploding skull bomb of a cluster headache. Once that wore off, the shoulder pain stopped me falling back to sleep again, and my old wrecked ankle (I ruptured a ligament a few years ago) was throbbing too. When I finally dragged myself out of bed around 8am, I stood in the kitchen making tea and sobbed in front of my concerned and helpless husband and son, bless their lovely faces.

I’m good and I’m happy. I’m also tired beyond exhausted beyond wrecked. The worst of the pain I suffer is when I should be sleeping – lying down puts pressure on the inflamed shoulder joints, and god knows why cluster headaches always start at night. I mention it because I don’t want to mention it; rational or not, chronic tiredness feels like a personal failure. Let’s file that under ridiculous things that are also true.

I also mention it because the effects of not sleeping can sound like depression, which worries people when it really shouldn’t, which increases my sense of isolation when it probably needn’t. I do wonder if the oft cited correlation between chronic illness/pain and depression is (at least sometimes) a misinterpretation of the effects of exhaustion when that pain or illness significantly impairs sleep. I am deeply interested and invested in my life, and the lives of those I love, deeply committed to academic research, but this long-standing lack of sleep can make me look disinterested and unmotivated (and confused and probably stupid).

It’s the frustration of that which had me weeping over my tea leaves this morning. Chronic pain is no bucket of sunshine and rainbows, but the sleep deprivation is what’s really whipping my ass.


Not related, but pertaining to yesterday’s notes, this article on magic and the limits of reason by Philip Pullman.

quick notes before i forget

I have a supevisory meeting this afternoon and I always go in with lots of ideas I want to discuss and always forget every single one of them the moment I sit down. So here is a very quick summary of what I’ve been thinking about recently, though even as I write this I can feel the ideas fall down through my head and out through my nose to be lost forever in the ether …

  • I haven’t seen a lot of autoethnographies that are based on a current life event as it unfolds, or more precisely discussions on how this affects the research process, and how to navigate that in terms of deadlines and expectations for reasonably linear progress (actually I haven’t seen any, but I’m assuming there are some out there I haven’t come across yet). I’m well into my second year now and only starting to get a handle on this as both an issue in general and how my own project is affected by it. I put a picture of Frankie and Catherine and Calista above, because they were never an official part of this project when I made them, and painting them, surrounding myself with their faces on notepads and posters and mugs was done solely for my own amusement. I have come to understand that it is these kinds of deeply personal off-the-record projects where a lot of the more useful information lies. I have also come to believe that it requires a lot of self-belief, faith, and patience for this kind of research to work well, and trying to impose a standardised timeline and research process is generally as antithetical as it is seemingly impossible to avoid.
  • We are, as I wrote in my first paper, literally born knowing pain. We have tried over millennia to explain it, going round in generational circles, with little progress made. I’m not sure we can explain it, any more than we can explain love or hope or despair. These grand abstract concepts of the human condition are both intimately real in all of our everyday lives, and concurrently impossible to define in the way one might define a table, or a banana. Or a neuron.
  • Yes, there is a biological component, and yes analgesics help. A lot. But they are only an aspect of a much larger experience. If we think of chronic pain as having to always carry a backpack, the medical community can adjust the straps and add padding, develop more ergonomic designs, give us exercises to help us endure, render it invisible for an hour, a week, a month, offer psychological tools to not be defeated by the interminable carrying, but the backpack is the backpack. It has to be carried, and it has to be carried by the individual, and the individual needs personal and personalised ways to deal with that reality. I have come to believe it is much more helpful to think of chronic pain in terms of what is curative rather than cure.
  • As always, the poorer, more marginalised, more discriminated against that a person is, the less options they have to access curative assistance. Also, poverty and marginalisation and discrimination are heavy and interminable backpacks in their own right. Just wanted it noted.
  • I’ve read a lot of articles researching the pain experience, and they are all variations on a very similar theme. It’s isolating, and exhausting, and people feel ashamed. We know this. It’s described in myth, it’s written into stories, fables, religions. Again, (and again): We can keep reinventing this wheel, or we can start thinking about how we can ask more useful questions.
  • It’s the same bloody amazing human imagination that constructed both those myths and stories, and the scientific method on which modern pain relief strategies are based. I think they’re both brilliant, and I think there is a lot more to be learned from the more ‘fantastical’ approaches (I’m really struggling with my wording here, and need help to define what I actually mean). People use them all the time, and they’re hidden in plain sight if you start to look. Take Julia’s radical shift in personal style when she learned her cancer was terminal; the vintage dresses and platinum hair did not increase the value or worth of her life – this was always priceless – but they did change her own perception of her value and her worth. A rape victim sprinkling glitter (fairy dust, she apparently called it) over the witness box before she testified in court didn’t change her strength and courage, but it did change her perception of her strength and courage (not sure how the cleaner felt about it however…). We’ve use symbols and stories in this way through time immemorial; we should use them more. It’s fantasy, yes. And so?

I’ve run out of time for the rest, but probably they are mostly variations on the above themes. I know I’m touching on something significant but I keep falling back on terms and ideas I’ve already come across to explain what I mean, and none of them are accurate enough. It’s frustrating. I don’t want to leave this PhD knowing I never did quite get to the heart of what I was trying to understand.

personification

My weekend, pretty much, and proof positive I need to have my eyes tested because painting fine details on paper that small (somewhere between an A6 and A5) is fast becoming hit and miss, and much more often miss. Also I am impatient and abandon them too early, but let’s pretend otherwise for the sake of my ego. On our top row, from left to right, we have Thomasina (Tommy to her friends) and Stephanie; bottom row, left to right, is Calista, Frankie and Catherine (not Kate or Cathy, always Catherine).

I’m pretty sure the main reason I keep painting these folksy (cartoony?) women is so I can give them names, and in giving them names endowing them with a character, a history, a story. Thomasina, for instance, wears sensible shoes, has unshaven armpits, and gives zero fucks; Stephanie – well, to be fair, I don’t really understand Stephanie at all and I am not sure we’d ever be very good friends. Calista has a cat and sews her own clothes (she’s a biologist, I think – something science-y, I forget). Frankie is an actress but doesn’t make enough to earn a living so she also works as an office temp to pay the rent (people keep offering her permanent work because she has become very good at acting her way into any role in any office and I am also a little bit in love with her). Catherine likes the ballet, is on the board of a children’s charity that she genuinely believes does good in the world, though is becoming increasingly weary of the political games she needs to play to do her job well. I think she’s something of a repressed time-bomb waiting to blow, actually. If I had to guess, I would say that the death of a loved one at some future point will cause her to reconsider her entire life and she will leave her stable (if perhaps not entirely happy) marriage, return to school and become a nurse, eventually specialising in paediatric oncology. She just seems the type. She’ll probably write a book about it.

I’ll leave it to you to decide why I enjoy personifying these tiny painted faces so much, but I know I’m not alone. The Greeks personified everything, the Romans too. I know this because (Classics minor as an undergrad and) medical terminology is full, absolutely chocka-to-the-top full of the symbols handed down from these civilisations to ours. Achos, for instance, was the Greek personification of pain; Morbus, the Latin daemon of sickness and disease. These spirits personified feelings and states of being, took an abstract internal experience and gave us all something to point at; pain is this, disease is that.

One article I read estimated the amount of medical terminology that originated in this ancient Greek and Roman symbolism to be at 90% (I quote from memory, and I have an unreliable memory, but it was very high). As another article argued, these ancient concepts don’t change very much, we reinvent the same idea of Pain every generation as if it is something new, something identifiable, something we can understand and perhaps in the understanding find a means to conquer, when all we are doing is turning the same wheel around over and over and over. And over. We might standardise and refine the wheel, develop technologies in regards to the wheel, but we forget, or never even notice, that it is indeed always the same old wheel.

I think it’s very important to understand difference between the experience of pain (disease, love, ageing, name your favourite Greek or Roman daemon here) and the abstract personification of it, to understand the symbolism so deeply embedded in medical language. I think it’s very important because where we mistake the abstraction for the experience, we mistake a shared symbol for an individual reality. Pain becomes about nerves and analgesics and posture and muscle strength, and outside of that it is not something a medical professional can, or should have to, deal with. Outside of that, there is non-compliance, there are the difficult to treat, the malingerers, the psychologically wounded. Outside of that the tools offered become about acceptance of ‘pain’, adaptation to ‘pain’, and protection of energy and physical resources to cope with ‘pain’. Outside of that we are often judged and usually abandoned.

I’m very grateful for anaesthetics and anti-inflammatories and antibiotics, and lord knows I will bow down and worship at the feet of whoever invented rizatriptan, god bless you and the womb that bore you. I’m a big fan of the scientific method in general, true story. But you know when the Pharisees were trying to trick Jesus by asking him to condemn his disciples for breaking religious ‘law’ by picking grain on the Sabbath? (Mark 2, 23-27 for the people who did not spend their childhoods at church). He told them the Sabbath was made for man, not man for the Sabbath, i.e. if it’s more helpful for a hungry person to pick some grain than it is for them have a rest, they should pick the bloody grain.

The scientific method was made for man, not man for the scientific method; also medicine, mythologies, all of the constructs. If a particular way of understanding and dealing with chronic pain is only partially helpful to me, that is not a repudiation of that way, nor is it a fault in me. It just is. I think acknowledging chronic pain as a subjective experience, and not reifying the abstract concepts we use to communicate that experience, would go a long way to finding imaginative and useful ways of living with it on an individual level. Maybe I need someone to come clean the house for me more than I need a physiotherapist. And maybe that says absolutely nothing about my compliance or my motivation.

I usually paint these tiny gouache faces after a gruelling night (week or two of nights) of cluster headaches, when the pain has gone but the resulting exhaustion remains. They lighten things, mentally, physically. Not in the painting – that’s more distraction – but in the stories I make up later. The paintings and the stories have nothing to do with a cure, but they are oddly curative, and if I don’t understand why they are curative, then I also don’t believe the why needs understanding. They hurt no-one, they help me. Double thumbs up.

On thinking about it, maybe Catherine will run away with the much younger pool boy and go live in a villa off the coast of Italy to find herself instead. She’ll write a book about that too.

purgatorial limbo


The dead approach him in swarms, unable to speak unless animated by the blood of the animals he slays. Without blood they are witless, without activity, without pleasure and without future.

Homer, The Odyssey

That’s Homer’s description of the dead in the asphodel meadows, a place in the underworld where ‘ordinary’ people live for eternity. Sounds much like an eternal zombie apocalypse; I’ll take a hard pass, thank you.

It did resonate, at least a little, with how different the days can seem when I have had a recent steroid shot, or prednisone dose, a difference between active, engaged, lively, and, er, not.  Feeling alive for approximately six weeks, twice a year, seems like a limbo doesn’t it? Like a place where you are not entirely condemned, but nor can you really be saved? (Purgatory, on the other hand, for the non-Catholics amongst us, is a place to be cleansed – you’re going to heaven, sooner or later, you just need a bit of a soul-wash before you can be allowed in).

I have four weeks left in the current round of cortisone magic and I am full of plans and actions, so it feels to current me like it’s a weakness of will, laziness, witlessness to be so inactive and sorry for myself the rest of the time.

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I’ve even put a reminder for future self to stay the hell off my comfy couch corner until I get some work done, because that chick, she’d just sit there and knit in her witless undead coma forever if given the chance.

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I’ve put reminders for future self on my walls too, directly opposite her Couch of Inaction, for solace and inspiration and perhaps in the hope they will be tiny little vegan shots of animating blood to get her moving too (also, I just really like them; is it bad to put up a whole wall of your own work?)

Jennifer I reserved for the wall beside my desk, because she takes no shit and is unimpressed with my excuses. She is the reason I am sitting here writing this post right now. She doesn’t care it’s a public holiday and sunny and I only came in here to find a sewing pattern…

The thing with autoethnography, a thing with autoethnography, is that it is too easy to slip into telling a good story rather than trying to explain a useful truth (I use the word useful a lot, it’s my touchstone for the whole point of this, otherwise perhaps the navel-gazing accusations start to become more relevant than they should…). I have had to admit to myself that the paper I have been writing, full of beasts and creatures and imaginary travels, is a good story, but it is not this story. Those beasts and travels were born from a time when life was chaotic and unpredictable and I was in need of something firm and concrete to hold on to, and while I distracted myself with that work, I was living an entirely different experience, an experience of darkness and heaviness and pushing my way back through to engagement with life as often and for as long as I was able.

I’ve made the decision to put aside the paper I have been working on and tell the story of this frustrating limbo instead. I will have to write like the wind, but it wouldn’t be the first time (and no work will be wasted, it’ll make for a much richer and helpful methodology paper if nothing else). I think it’s important to the worth of the research to admit to the slippage, to have the courage to tell that more personal, messy, and revealing story, because, to misquote a current popular movie (and should we not all live our lives by movie quotes?), that story is all we really have to offer that’s of any worth.

I don’t want to. I’d much rather a nice satisfying conflict-and-resolution three act story arc than this dark and unresolvable tale of limbo and the life of a couch-sitting coma (I make it sound so romantic, yes?); I am most definitely not thrilled to talk about it all out loud. The bestiary was so clever! And fun! But Jennifer says I have to, and look at her face. You really just don’t ever want to mess with that face.

because f**k

My current sentiment. I took my dog in to the vet to have his teeth cleaned last Friday, and his heart gave out as he was coming out of the anaesthetic. They tried to revive him but failed. It was a huge shock, and we all miss him and his eccentric greyhound ways terribly.

I’m considering decorating every surface in my house like this.

There is not much to catch up on: I had a relaxing holiday, I’m ready to get back to work, I’m still (forever and always) in pain.

I saw a surgeon yesterday at the behest of my GP. He said I sounded tired (I am tired) and that he’d operate on my shoulder if I wanted him to, but nothing’s likely to fix the problem long term (because of boring nerve damage reasons). It didn’t upset me. I knew as much. I had only gone to the GP in the first place for better pain relief medication to help me sleep better.

I took my tiny instant camera to the beach yesterday also. I’ve been playing with analog cameras a lot over the summer, mostly cheap plastic fixed focus models because I like the snapshot sort of feel, because I like the challenge of taking something meant for bad photos and (attempting) to use them to make interesting photos. Because I like the simplicity and the uncertainty.

Most of all I like how energising it is to see the world through a literal creative lens, and pain and tiredness become small, perhaps irrelevant, inconveniences in those revitalising moments. It is my goal through the rest of this PhD, and forever after, to seek them out a great deal more often.

m.i.a.

I got lost down a hole and I don’t know how. Or why.  I keep trying to explain it, even to myself, because it makes no sense. But I can’t, so … let’s just draw a line in the sand and get back to work.

I may also have discovered how to layer effects on photos…